tag:blogger.com,1999:blog-60445287211452306512024-03-13T12:09:50.222+00:00Where angels fear to treadThe ups and downs of life as a former hospital chaplain and rare blood cancer sufferer. I was diagnosed with MDS (Myelo Dysplastic Syndrome) in 2000. I had a bone marrow transplant in Oct 2016. Since then I’ve been living with extensive GVHD (Graft Verses Host Disease). Hope you find something that helps in these blogs. Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.comBlogger272125tag:blogger.com,1999:blog-6044528721145230651.post-13300080215021975982024-03-08T23:10:00.000+00:002024-03-08T23:12:25.622+00:00International Women’s Day<div><span style="font-family: UICTFontTextStyleBody; font-size: 23px;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM-Blqg5c0zRFsy3nWU_YY3NFv9A2xltE66svUrDtnrNg7p89mrnOx5fvDLxvdAVhMaeya0C9NSkh-K7eexO_x2OSn102Smag4Auhd9Y2Kv0Y_S6BCIF3Z-fgO2dVsPGi-PGCFZVyjbmhQmcmFqtT5x9NZGr66d8qMwGWNbvFXw43LfU-YURgKEZGjng8/s960/IMG_6874.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM-Blqg5c0zRFsy3nWU_YY3NFv9A2xltE66svUrDtnrNg7p89mrnOx5fvDLxvdAVhMaeya0C9NSkh-K7eexO_x2OSn102Smag4Auhd9Y2Kv0Y_S6BCIF3Z-fgO2dVsPGi-PGCFZVyjbmhQmcmFqtT5x9NZGr66d8qMwGWNbvFXw43LfU-YURgKEZGjng8/s320/IMG_6874.jpeg" width="240" /></a></div><br />Hello Folks. Seeing as it’s International Women’s Day I thought I’d use this time of my 2nd hospital visit of the week to write a blog. It’s not been easy summoning the strength recently so I’m sorry I missed Rare Diseases Day. </span></div><div><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">My latest hospital admission where I’d been told I would probably just need 48 hours of IV antibiotics turned into 8 days. I think they love me so much they just like to keep me once they have their hooks in me. Lol! </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">The biggest challenge </span></p><div class="separator" style="clear: both; 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text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEika4_4y03kStANArnzMAOit8Ac5QyYulwzlPCr3stSnGEoxb8h0oEePOQIVAHsdOisQaBxqheTGm8_aFeR0DgXEyJ-IidCaiXjAxtFd0bjH4hLyKvppWygYV_RaMfM9RZDBFck0GqwSZStDne9DIzjf7mzNtSjLIcNYz52w29UwsLaE5CaBgZqHokZHy8/s4032/IMG_6764.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEika4_4y03kStANArnzMAOit8Ac5QyYulwzlPCr3stSnGEoxb8h0oEePOQIVAHsdOisQaBxqheTGm8_aFeR0DgXEyJ-IidCaiXjAxtFd0bjH4hLyKvppWygYV_RaMfM9RZDBFck0GqwSZStDne9DIzjf7mzNtSjLIcNYz52w29UwsLaE5CaBgZqHokZHy8/s320/IMG_6764.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFjnzIqXOORy5vWlTvIwijm7QDRjulsLRCWba8hpCxzs-9WCEAYTj0vTTJBSALGECj1eql5umYuDd9fLFdN5K4b7M2SMcIZGPFB_Bw_NNU54nH6cXsdU3lSdIWGEyWMLLq-aAZBVRphbOEJ1TVW1YIV43jqSwvSF8elt-fUcUX9dpywGTjt33EMqWZfl4/s1080/0f955498-7f5d-4543-8d64-cc6c95bc37d8.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="608" data-original-width="1080" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFjnzIqXOORy5vWlTvIwijm7QDRjulsLRCWba8hpCxzs-9WCEAYTj0vTTJBSALGECj1eql5umYuDd9fLFdN5K4b7M2SMcIZGPFB_Bw_NNU54nH6cXsdU3lSdIWGEyWMLLq-aAZBVRphbOEJ1TVW1YIV43jqSwvSF8elt-fUcUX9dpywGTjt33EMqWZfl4/s320/0f955498-7f5d-4543-8d64-cc6c95bc37d8.jpeg" width="320" /></a></div><br />has been keeping a working cannula going. Every time I needed a new one it took several attempts. On one occasion they sent me to interventional radiology for a cannula to go in under ultra sound guidance. He managed to get it in first time. By the time I got back to the ward it had already blown. (Stopped working) The ward then bleeped the on all doctor. As it was in the middle of the doctors strike, it was a consultant that I knew who showed up. That’s not something that happens very often! To her credit, she too got it in first time. Then when the drip was connected the fluids started leaking all around the dressing and soaked into my lap. They stopped the drip, then blood started dripping and pooling in some paper towels I was holding underneath it. <span class="Apple-converted-space"> </span>So that one had to come out and the doctor called again. You can see this saga in pictorial form attached to this blog. The same consultant came back and hey presto 3rd time lucky we now had a working cannula. Because this had delayed the antibiotics being given to me I had to have some at 2am. Oh well you don’t come into hospital to sleep. Obs ie blood pressure, O2 sats and temperature are all done at 10pm, 2am, and 6am as well as throughout the day. Bloods get taken around 7am and breakfast turns up around 8am. It’s awful. You need to come home to recover. Lol. </span><p></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">On one of the days I was told I needed to have a CT scan <span class="Apple-converted-space"> </span>I then got a notification on my app to tell me my scan was booked for 6.30pm. No one turned up so I checked with the nurse and she tried to ring CT but got no reply. I got into bed and was woken just before midnight to tell me the porter was here to take me to CT. I was rather bleary eyed but chucked on my teddy bear hoody and was whisked through the empty but very cold corridors of the hospital. I got back into bed shortly after 1am. Then was woken at 2am as per above. You really do need to be resilient to cope with hospital stays. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I’ve had so many pricks in my life, steady now. As a haematology patient with 24 years of coming to Kings my veins are tiny, fragile and scarred. As an inpatient I needed blood tests every day. This got to the point where it would take 4 separate attempts to get all the blood needed for testing. When you have neutropenic sepsis your blood pressure can be a bit low. Mine often is and this doesn’t help either. I’ve learned all the trick from keeping warm to drinking extra water, to holding my hands under the warm tap. Despite all this it’s hard. The phlebotomist on one occasion was a bit stressed and went too quickly for someone with veins like me. The resulting bruise was horrendous and shows how vitally important it is to take your time with difficult patients. The next cannula was put in by a special haematology team under ultrasound guidance. Two of the team had been nurses on one of the wards I had a long admission on. It was so lovely to see them doing so well. They got it in first time and it lasted till o got out. Well done “team Haem” </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Luckily I don’t mind needles. It took 3 attempts today to get blood and these are very skilled nurses who are struggling. When I’m more my old self it’s not so bad. Often there is a week between pricks, so time to heal. Cannulas and daily blood tests wreck my blood vessels for a while. Fingers crossed they get good again soon. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">One of the other areas that could do with being brought into the 21st century is pharmacy. On one occasion recently it took me over 2 weeks and a plea on X (Twitter) to get the drugs finally dispensed and delivered. By that time I had run out of some of the medications. I understand that these are hospital only medicines but I’ve been taking them for years. Surely they should just automatically get ordered and sent out. I spoke to a senior pharmacist about it all and she said she old raise an incident report. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Then we get to the debacle on the day I was discharged. It was decided I needed to have my IVIG infusion before I went home. I was told I could go home in the morning and just needed the infusion first. Then the black hole opened up and swallowed all normal protocols. By afternoon I’d heard nothing so I reached out to the person who contacted me after the delayed prescription a few weeks ago. She said to contact the on call pharmacy team. The nurse had been trying to do this unsuccessfully. It eventually came up very late and I got home around midnight. I came home with no medication from the hospital though, as it still hadn’t arrived on the ward and I wasn’t prepared to wait any longer. I said I had enough at home till Monday and as they wanted me back for a check that day that I would collect them then. The nurse told me to collect them from the ward. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">On Monday I went for my review in the Haematology Assessment Unit as my last swab had still been positive for rhinovirus. I told the lovely nurse looking after me that when she had taken the blood I would go to Waddington Ward to pick up my medications. She didn’t want me walking all that way so went there herself. She came back with no medication. One of the nurses from the ward was looking into it. The HAU nurse tried to ring pharmacy but it kept ringing out and she was on her own with all the HAU patients. In frustration I emailed the pharmacy contact who I discovered was the Deputy Chief Pharmacist. By then I’d finished in HAU and had to go to out patients pharmacy to collect me meds. Normally I avoid pharmacy like the plague. My team discourage me going because of my extremely low immune system. There are very few places to sit and it’s impossible to be socially distanced. I gave my details and the woman told me I was due one item and that was my GCSF injections. I sighed and said no there are another two items. Nabilone is a controlled drug and antibiotics to carry on treating the neutropenic sepsis. She eventually managed to find that there should be 3 items. She gave me a ticket and told me the wait was around 30 mins. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">As I had time to kill and had noticed a homeless person sitting on the pavement by pharmacy, I decided to go and get him a hot drink and something to eat. As I was wandering back to him I received a phone call from the haematology specialist pharmacist. She was most apologetic and said she would set up an incident report so the situation got looked into. I explained they had done that 2 weeks before about another problem with missing medication and I had heard nothing. This time I said to the pharmacist that I’d happily be involved in any staff discussions to give a patient perspective and I hoped we could all learn from the scenario. She said I was free to complain. What I’d really like is people to come willingly to an incident meeting where the discussion and emphasis isn’t about blame but learning so it doesn’t happen again. I find that complaints push people into defensiveness. They have their place but trying to resolve informally should be tried first. Any way I was standing outside unable to walk because of holding my phone and the goodies for the homeless man. I couldn’t then hold my walking stick. Lol. The pharmacist said that the original request had gone into some weird and whacky work steam and she had never seen that before. She said she had intervened and all the meds were now in the inpatient pharmacy. I asked where it was and she explained it would have to be a member of staff who collected it. I could feel this inner groan surfacing. I said did I also have to collect from outpatients too? She said I had it all in the inpatients order so no need to walk back down there. She asked me to go back to HAU and she would speak to the nurse there and get her to collect them. It’s frustrating but that’s what I had to do. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I still had the homeless man’s drink and food. I walked back down the road and by the time I did that the man had gone. Oh my days. Talk about sod’s law. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I then trundled back to HAU. I walk with a stick and have just had an 8 day stint in hospital. I’m more frail than usual so all this walking about wasn’t so good for me. My poor HAU nurse who was covering the place alone had to leave where she was to get the drugs. She told me to meet her outside the HOP area and she’d give me my carrier bag there. I got home after 7pm having been at the hospital since 10.45am. Again another example of how resilient you have to be when dealing with all this hospital stuff. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">As today is International Women’s Day I’d like to dedicate this blog to the woman who is my rock and life long partner and our beautiful daughter. I’ve put them all through so much worry and anxiety o er the years. Maggie and Annie are just simply wonderful women and I’m so lucky to have them in my life. I’d also like to shout out all the women in the NHS who work tirelessly in a broken system to keep broken people like me alive. Not all superhero’s wear capes. Some wear scrubs! Thanks for saving my life once again. Xx</span></p></div>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-70492625059608898312024-02-19T12:00:00.000+00:002024-02-19T12:00:55.924+00:00Plague tablets! <p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlosHRmsgRGw3yGJCKJiYb_7NxIVFAMtrkvb2svPUCj3u0OlPYYQtnKGZR3oqfnMoHQnORY326MCYJpDQjZZpLso9Lb0FIejN3CJoFYO0itPCuHZBndwvJOrmuOXaIY1Rb9vTId3UA8xhBCvZa6kHaS99HP7uWFAQct0Gp4MKcw1KSBuJ6x9rNEu_BTrw/s2778/IMG_6694.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2778" data-original-width="1284" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlosHRmsgRGw3yGJCKJiYb_7NxIVFAMtrkvb2svPUCj3u0OlPYYQtnKGZR3oqfnMoHQnORY326MCYJpDQjZZpLso9Lb0FIejN3CJoFYO0itPCuHZBndwvJOrmuOXaIY1Rb9vTId3UA8xhBCvZa6kHaS99HP7uWFAQct0Gp4MKcw1KSBuJ6x9rNEu_BTrw/s320/IMG_6694.png" width="148" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIvTtnt26lfYJW3irp8eeqiHvuAmCjq22_MdLR7AFSBGtjl0hp9Manr1zcr6VuogNwv9uhtlWkM5p-CDw4VV4pxECBWypiD1aFVKNw5Cci6z50T4swTm7mXWsc2XKKOStrGTd7ki_wNfWkmGbX6gqljg3trP4W7gj8CtQyVlETG2dM4RqH5saIaStt-Zs/s732/IMG_6721.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="732" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIvTtnt26lfYJW3irp8eeqiHvuAmCjq22_MdLR7AFSBGtjl0hp9Manr1zcr6VuogNwv9uhtlWkM5p-CDw4VV4pxECBWypiD1aFVKNw5Cci6z50T4swTm7mXWsc2XKKOStrGTd7ki_wNfWkmGbX6gqljg3trP4W7gj8CtQyVlETG2dM4RqH5saIaStt-Zs/s320/IMG_6721.jpeg" width="315" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibakompwMBgAOr1jO7uqmHEiHbhnhVTOHbNPsivQkqaP844yqqhojOwSaX6vaKRBNiUSBDe6oVe7Xgz9Oe4HhGTEJaPurPJmJ3fmMNFVbMwPlHmzL_p25iNnyQvIu02SGBnHMiGHI_3eh1ac8PirxI3LBSah_7EDI10ST6qbdZc6TqNIKmtjD__VdsOEk/s1283/IMG_6724.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="956" data-original-width="1283" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibakompwMBgAOr1jO7uqmHEiHbhnhVTOHbNPsivQkqaP844yqqhojOwSaX6vaKRBNiUSBDe6oVe7Xgz9Oe4HhGTEJaPurPJmJ3fmMNFVbMwPlHmzL_p25iNnyQvIu02SGBnHMiGHI_3eh1ac8PirxI3LBSah_7EDI10ST6qbdZc6TqNIKmtjD__VdsOEk/s320/IMG_6724.jpeg" width="320" /></a></div><br />A short blog from me. <p></p><p>As you are very aware I’ve been coughing a spluttering since picking up my first covid infection in July. I’ve been feeling pretty grim. I came in for a review on Friday and was profoundly neutropenic again. This means back to injecting every day. The worst bit though is my infection markers went up and I was started on some powerful antibiotics. Unfortunately for me these come with side effects. One of the rare effects is sleep disturbance. I sleep soundly normally and I’m sure that helps me keep my sunny disposition. In the last 3 nights I’ve had the equivalent of 1 nights sleep. I’ve been joking with folks about all that been going on with positive swabs for covid, flu and rhinovirus and saying “what’s next, plague?” Well look at the top of this at what my antibiotics treat… Lol </p><p>Fingers crossed that the results are better today and they let me home. I just need an end to all this snot!</p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-46464316470101903352024-02-08T19:17:00.001+00:002024-02-08T19:17:34.004+00:00Rebel Rev at it again! <p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5eCEJsAq-xi-ImUlOCIvU5gxKsqbT0KZVuEP4JsfzJoWFzOaIiMUU6OZag1_v9YOtWa4V8strv1Ycg_mOv89UZi67oMX4aFI8lfwqXGZ6P0beoGOodXRIxyc39Td3CVrG9gK0zbozpmX0-1c7HN7xdbuvXvdN69LBYyFQNHddvs51xB9roueR1m_3Vag/s1600/78c92bc3-f6c0-4a4f-a600-41739d915b96.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1181" data-original-width="1600" height="236" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5eCEJsAq-xi-ImUlOCIvU5gxKsqbT0KZVuEP4JsfzJoWFzOaIiMUU6OZag1_v9YOtWa4V8strv1Ycg_mOv89UZi67oMX4aFI8lfwqXGZ6P0beoGOodXRIxyc39Td3CVrG9gK0zbozpmX0-1c7HN7xdbuvXvdN69LBYyFQNHddvs51xB9roueR1m_3Vag/s320/78c92bc3-f6c0-4a4f-a600-41739d915b96.jpeg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg00Ru1GfkmG19pIlUFjdHL89U78gN0BdjPNYZfgLAGHKkBYzT8KkNkRHkrE7nIeBZ9fNzp1v8UcDEA2PLRAjApfVBSPKRR05dNQPnr2_A7HcMEOtJGT94y3U6VCUXlRresF3xIsQTouf3Hqs1ZykS3ZH7Q-HhJPkz5afgmTcSv6-E8hNNw48i1dLo8MT4/s960/IMG_6617.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="917" data-original-width="960" height="306" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg00Ru1GfkmG19pIlUFjdHL89U78gN0BdjPNYZfgLAGHKkBYzT8KkNkRHkrE7nIeBZ9fNzp1v8UcDEA2PLRAjApfVBSPKRR05dNQPnr2_A7HcMEOtJGT94y3U6VCUXlRresF3xIsQTouf3Hqs1ZykS3ZH7Q-HhJPkz5afgmTcSv6-E8hNNw48i1dLo8MT4/s320/IMG_6617.jpeg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9yKx32145Qu_iz5t9m6BgwJaB1RAz2Gr26-TGefPmvc3kBrRYZkbftjxrIq70Qyxs9EI4VT7A6-L-CgtBZRbXIpMcOqznm_3wRX31XIIRn3Wdjpk0z9dpREklXOrwfC65WKPckYHi6ATBI5O1xCJ4fICrLuAhoiSWhmjGXgH9daTnrcoUmCP1tEmuTi8/s3088/IMG_6674.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3088" data-original-width="2316" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9yKx32145Qu_iz5t9m6BgwJaB1RAz2Gr26-TGefPmvc3kBrRYZkbftjxrIq70Qyxs9EI4VT7A6-L-CgtBZRbXIpMcOqznm_3wRX31XIIRn3Wdjpk0z9dpREklXOrwfC65WKPckYHi6ATBI5O1xCJ4fICrLuAhoiSWhmjGXgH9daTnrcoUmCP1tEmuTi8/s320/IMG_6674.jpeg" width="240" /></a></div><br /> I’ve had a busy day so far. It started with a chat on BBC Radio Kent about a silent disco happening in Canterbury Cathedral. Then I had an interview for the TV in the form of BBC South East on the same subject. Next I was off to physio in Dulwich and now I’m at haematology in King's College Hospital. The nurse commented that my blood pressure was slightly raised. I just laughed. <p></p><p><br /></p><p>This week I took the funeral of Maggie’s cousin Joe. It was a very unusual funeral. I always do stand alone unique services within my own framework. Joe was such a mischievous cheeky chappy that I decided to lift jokes from his Facebook page and intersperse them throughout the service. I was slightly apprehensive as I’d not done that before but I felt Joe’s family and friends would find it apt. I set off the day before as the service was in Slough and I didn’t want to risk the motorway on the day. I got to the hotel and said to Maggie, “oh no, I haven’t got my clerical collar” As we checked in I spotted a wedding brochure that was made of white card. I nabbed one and Maggie cut a strip into the right size to slip inside my collar. Lol. As she held it up to me, I suddenly realised I’d forgotten my robes too. What an EEJIT of the highest order. Fortunately my sister and daughter were coming the next day so I was able to ask them to collect and bring my robes. </p><p><br /></p><p>The reason, not that I need one, for all this is because as I was finishing off packing I had a call from the hospital to tell me a I covid again. Oh my days. I’d already had it for nearly 3 weeks at that point. Needless to say the Covid and the forgetfulness did not put me off my stride and the funeral went very well with lots of laughter as well as tears. Lynn I think Joe would’ve been calling me a silly mare and laughing at my predicament. However I pulled it off and none of you guys knew anything about it. </p><p><br /></p><p>Onwards and upwards. Let’s see what today’s blood test and swab shows. Who knows maybe it’s bubonic plaque knowing my luck. I shall keep smiling anyway as it makes everyone wonder what I’ve been up to. </p><p>Have a good day folks.</p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-62577649467572440742024-02-04T17:35:00.000+00:002024-02-04T17:35:02.130+00:00World Cancer Day 24<p><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 18px;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgET9LK2IjdGBygSH9cTs4MR9TbuEFZiMmA7R4LW7-ar0FuXUwu-KsPEsJTfYaXmnU_QR8qTjmQK-wDdHsTkPoa0AgFhwPsnnpPFiAiDXCmKiToNu1aw8lqAiQwhrXSYrPvHfWY7hQiChm7RFQpI995rWmx0ySaKOxd317lNeuHdYxsZLplHIIkc__IxGs/s960/IMG_1112.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="540" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgET9LK2IjdGBygSH9cTs4MR9TbuEFZiMmA7R4LW7-ar0FuXUwu-KsPEsJTfYaXmnU_QR8qTjmQK-wDdHsTkPoa0AgFhwPsnnpPFiAiDXCmKiToNu1aw8lqAiQwhrXSYrPvHfWY7hQiChm7RFQpI995rWmx0ySaKOxd317lNeuHdYxsZLplHIIkc__IxGs/s320/IMG_1112.jpeg" width="180" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2mzBWqB5Hk1xnkuV7hsenMU5EWELzxg7nHbEA0fPzVoPUfuyVAsKweU9fIgBWQG6-U3SjfD-85Zp59KQJmaOvDkl-FP_PJpjwFbiH4VN8uSR8wXW98Y5b-N7GyGf22zetr-SkFnM7yTvUDdDONXLNw9CnnncBiOrjmPYW8eZltKEhB7DZNqKzJL6lhEI/s1210/IMG_6015.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1210" data-original-width="864" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2mzBWqB5Hk1xnkuV7hsenMU5EWELzxg7nHbEA0fPzVoPUfuyVAsKweU9fIgBWQG6-U3SjfD-85Zp59KQJmaOvDkl-FP_PJpjwFbiH4VN8uSR8wXW98Y5b-N7GyGf22zetr-SkFnM7yTvUDdDONXLNw9CnnncBiOrjmPYW8eZltKEhB7DZNqKzJL6lhEI/s320/IMG_6015.jpeg" width="228" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb45zHp53Ex73QoFe7V85MG2_BW3PBpKsuNue3nPAbHbJeXHg2MILBV0jcvx-LRJ2A8Qt1JSnv_4i9sJa8tgkeVQOJBuaSbYhS2PuBhzHBGXB5NLNq7r1EoRf961E10EilC9Hgz3W1iBN_dmCfgMGV95fIa16N2fdHmR2LvJ0f0X4Cecp1XmMmmMhYo3Q/s3088/IMG_7001.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3088" data-original-width="2320" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb45zHp53Ex73QoFe7V85MG2_BW3PBpKsuNue3nPAbHbJeXHg2MILBV0jcvx-LRJ2A8Qt1JSnv_4i9sJa8tgkeVQOJBuaSbYhS2PuBhzHBGXB5NLNq7r1EoRf961E10EilC9Hgz3W1iBN_dmCfgMGV95fIa16N2fdHmR2LvJ0f0X4Cecp1XmMmmMhYo3Q/s320/IMG_7001.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqr7HD2M1cXG7BVWt5MSiV7JoUbILa9rj86Y2_wlw7EzyTRZtjZAliozogt234DfECroLPC3fDhCevu-JSP3urMQwlCBDviqN600VuGPWKfZAg8ClhcbbSwkJui2Bl7RnCE8ve7fcZNBHzb9Wa0DR2niB7PVsDY4pOpVgyo4ZNxivihOurJB5TGKlyvLE/s3264/IMG_8634.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2448" data-original-width="3264" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqr7HD2M1cXG7BVWt5MSiV7JoUbILa9rj86Y2_wlw7EzyTRZtjZAliozogt234DfECroLPC3fDhCevu-JSP3urMQwlCBDviqN600VuGPWKfZAg8ClhcbbSwkJui2Bl7RnCE8ve7fcZNBHzb9Wa0DR2niB7PVsDY4pOpVgyo4ZNxivihOurJB5TGKlyvLE/s320/IMG_8634.jpeg" width="320" /></a></div><br />Today is world cancer day so I decided it was about time I wrote another blog. <p></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Life has been even more of a roller coaster these last months. Regular readers will know I went to Ireland in July and despite all my precautions I contracted covid for the first time. As a former scout leader I took the “be prepared” motto to heart and had made contact with Cork haematology department before I travelled so when I had the positive test I contacted them, who in turn contacted Kings. I was prescribed the specialist antiviral treatment that clinically extremely vulnerable people need. It made me feel better for the course of the treatment and by the end I was testing negative. As soon as I finished, I started testing positive again. This went on from July to November. Talk about long covid! </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I then had about two to three weeks of being negative when I ended up with rhinovirus. The lovely team at Kings kept me on a short leash and checked me weekly. The following week I felt rough. By then I had another dose of covid and a bacterial pseudomonas on top of that. The following week the doctor told me I also had influenza A alongside everything else. I just laughed which made him laugh too. The lab couldn’t believe it either. I continued to test positive up to 2 weeks ago and then within days of the negative swab I got that scratchy feeling in the back of my throat. My head then filled up with snot again and I’m still like that now with a horrible cough to boot. All I can do is shake my head in disbelief. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Despite all that, I still function, of sorts, and I keep smiling. People ask me how I do it? My reply is always “it beats the alternative.” <span class="Apple-converted-space"> </span>Fiona was a good long term MDS friend. She sadly died last year after her transplant failed. Andy, another MDS stalwart died recently and I was fortunate to be able to attend his funeral this week. Both of them were my age! I’ve taken several funerals recently. One of them was for a woman younger than me. There is a Chinese quote that says “you’re a long time dead!” Thats why I continue to count my blessings. I also consider myself very fortunate to have such a good team around me, who I know, always have my best interests at heart. When I think about the horror in Gaza with no working hospitals now, it makes me weep. On the flip side of that I hear from people in America who can’t afford their treatment and again, I count myself lucky. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">My wonderful medics and support staff have been on top form this week. I had some very confusing messages from the physio dept. One lot were giving me appointments and the other set of messages were saying I hadn’t been in touch and would be removed from the waiting list if I know longer needed the appointment. I emailed in to express my confusing and was at a loss to explain it. I then had a call from an ace admin assistant who said she was going to “channel her best Sherlock Holmes” to get to the bottom of the perplexing mess. What she eventually discovered was that I has 2 referrals and they were both live! I told Carrie she was a credit to the NHS and thanked her for sorting it as I was feeling a bit of an eejit at not understanding. She was great. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">My next appointment was in the Haematology Assessment Unit. HAU is for the haematology patients who have an infection and need to be separated from the other vulnerable patients in the main outpatients area. The lovely Heather and Jellianne looked after me and did a very good job. Jellianne left Heather the challenge of cannulating me and laughed as she ran off. <span class="Apple-converted-space"> </span>Heather managed it first time which shows how skilled she is and I was given my intravenous Immunoglobulin. IVIG is given to patients with a certain deficit in white blood cells and the proteins needed to make antibodies. It’s an amazing gift of life given but altruistic strangers. The NHS Blood and Transplant Service collects antibodies from blood and plasma donations. Then loads and loads of these antibodies are mixed together and given to people like me who don’t produce good antibodies. This gives us a chance of fighting any infection that comes along. Without it, I’d be in a much worse condition. I am very grateful that the NHS funds me having this expensive treatment. Again I count my blessings.</span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">The day after having my IVIG I was back at Kings having a Bubble Echo. Sounds weird eh? I had a recent heart CT after developing some chest pain. The scan showed there could be something called a Patent Foramen Ovale. An FPO is a hole between the left and right upper chambers of the heart. Everyone has this before birth. In some people it doesn’t shut properly or can open up. It is not something screened for as, in general, it doesn’t cause any problems. The most serious complication is that it can cause a stroke. As I had a slight stroke in 2021 and then they saw this slight anomaly on my CT, they decided to do this bubble echo test. I met a couple of lovely cardiology physiologists. They were ace. Sadly I didn’t get their names. The first trial for them was to cannulate me. After 23 years of being stabbed millions of times my veins are small, wriggly and scarred. Even some haematology nurses look busy when they see me coming as I mentioned earlier. Lol. Fortunately I don’t mind needles. The woman doing the cannula took her time and had to dig around a bit but was successful on the first go. This doesn’t always happen, so all power to her. Then what they do it get two syringes and one of those tap valves that meant they could swish the saline mixed with some of my blood back and forth so it gets lots of tiny bubbles in it. Then they inject it and within 2 seconds its travelling through the heart. If the PFO is bad you will see the bubbles crossing the hole. Mine wasn’t bad at all and is unlikely to need more intervention but I still have to wait for the full report after the details of the scan are analysed. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">During the course of all these treatments and viral and bacterial infections, my blood counts have been very unpredictable. It seems my system often crashes when I pick up an infection. This is why I have to be so careful not to be close to people with coughs and colds. Over the last few months I’ve needed blood and platelet transfusions. At times I’ve had to give myself daily injections into the stomach. Where I’m blessed is I don’t question that these things will be available to me. I know I have this amazing safety net. I know one day my body will conk out but while I can still enjoy life and find a way to contribute and interact with the wider world, I’m going alright. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">On Tuesday I am taking the funeral service for Maggie’s cousin. Joe battled 3 types of cancer but kept his wicked sense of humour. I hope he will be smiling at us as we say goodbye to him. On this World Cancer Day, I shall honour Joe, Fiona, Andy, Diana, Marlene, Bette and all those who a cure was not found for. I also send my love and respect to all those living with cancer and the effects of treatment. I’ll finish with a couple of World Cancer Day quotes which goes with their theme “Together we are stronger than cancer”</span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">“There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow.” Orison Swett Marden</span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 22.7px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 18px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">“Cancer opens many doors. One of the most important is to your own heart” Greg Anderson </span></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-39791332693159947862023-12-19T21:02:00.000+00:002023-12-19T21:02:06.279+00:00Badly timed blip<p></p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><br /></div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 23px; text-align: left;">There’s never a good time to have a blip but some times are better than others. In the build up to Christmas you really need to be on your A game in order to do all the extra things that are an expression of love.</span><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 23px; text-align: left;"> </span></div></div></div><p></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px; text-align: left;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I’ve been having a bit of an extended blip but I’ve had some lovely things going on too. This image is from St Peter’s Chapel at Bradwell-on-sea. My lovely old parish choir started going to Othona 25 years ago. Othona is a Christian community that is very inclusive and welcoming. I was there at that first weekend 25 years ago. Simon, the choir trainer asked me to take a service of celebrating our unique choir community and all that have gone before us, whose voices we still hear echoing as we sing. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">It was so good to have a creative liturgy to write for this special occasion. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">St Peter’s </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk-VHF1Hrdm8EaZ3wM8RMHBgItNsxo0nhbDZNzQRBzoTEB4xHzkM5HSQ6rG-UUoFKhAcKlZ_bquuOLDkHCzzMr0ilfvRrVPERNZxc-i-bKVSgwOjE5MrWIZdECac1zmLoR1kturTPGENVJyKPr-i29gQEyANamha8Bab1dYKhfeKLIXrtSwbtIulOW2vk/s4032/IMG_6172.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk-VHF1Hrdm8EaZ3wM8RMHBgItNsxo0nhbDZNzQRBzoTEB4xHzkM5HSQ6rG-UUoFKhAcKlZ_bquuOLDkHCzzMr0ilfvRrVPERNZxc-i-bKVSgwOjE5MrWIZdECac1zmLoR1kturTPGENVJyKPr-i29gQEyANamha8Bab1dYKhfeKLIXrtSwbtIulOW2vk/w150-h200/IMG_6172.jpeg" width="150" /></a></div><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig0ie6SCeiuvAREBKRveuPopDlp_da6NgWw67u5LV1JO-Z6J90dlaAucRGYwg3_uGqbzWNP4wx375X7r2BIrhyHfY9wXN2g-MXq3VQtG9zOIBuSklrsAgmtEJ5aoMGKlYAH1KTXNb71i50YWq_BsAoqyqeyZczKN_grvqwXUnwBU4yYufurFSX3zw5sB8/s4032/IMG_6169.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig0ie6SCeiuvAREBKRveuPopDlp_da6NgWw67u5LV1JO-Z6J90dlaAucRGYwg3_uGqbzWNP4wx375X7r2BIrhyHfY9wXN2g-MXq3VQtG9zOIBuSklrsAgmtEJ5aoMGKlYAH1KTXNb71i50YWq_BsAoqyqeyZczKN_grvqwXUnwBU4yYufurFSX3zw5sB8/w200-h150/IMG_6169.jpeg" width="200" /></a></div><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br style="font-family: -webkit-standard;" /></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiGLSIBoxtHZKcxyIKkdHxk4GX8xBNCm9yF_Kme2cOPeeC_oIoqTa5vPPCbfIq1xqdoLVOt5ZizaOMc7NCaxd-ywteMJybQs0lIiFpO150zI9M0Xkq1iKQTpuEDt943bcplc49BOHN-eYhDM0xYFTjmHgmPUEUn1-skubqegW-AOkn_YcnbpIK55AvRQQ/s4032/IMG_6170.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiGLSIBoxtHZKcxyIKkdHxk4GX8xBNCm9yF_Kme2cOPeeC_oIoqTa5vPPCbfIq1xqdoLVOt5ZizaOMc7NCaxd-ywteMJybQs0lIiFpO150zI9M0Xkq1iKQTpuEDt943bcplc49BOHN-eYhDM0xYFTjmHgmPUEUn1-skubqegW-AOkn_YcnbpIK55AvRQQ/w150-h200/IMG_6170.jpeg" width="150" /></a></div><div class="separator" style="clear: both; text-align: center;"><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Around this time I also took a funeral for someone I didn’t know where the family were struggling. The woman died in August and she was younger than me. It’s tough to have to wait till November to be able to go ahead with the funeral. I was glad I could help. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Another aspect of life that has given me much pleasure this year has been being able to have my grandchildren over to decorate the tree. I always did this with my daughter, their mum and she remembers it fondly. When she came to collect them I hadn’t quite finished outside. It was lovely to have all 3 generations putting together the outside tree. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgu_2ZwLknJTu_wdH1rCcgRe-koEH0AFUiNWMUqgKChZ5i9M3J2EkIF8tB3_bmCd6zYEZDXSjj4MecCSpMQjTmPgDg1SRnE901pXvAlWIbCtLjO0QGSMAGJH3hbX05TwszsD5W-P-6xMXNjTS_EGKkVeouMfUGK9mSa0tBgoxOZA5GPEFfjW7rUJP-lMCM/s2778/IMG_6191.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2778" data-original-width="1284" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgu_2ZwLknJTu_wdH1rCcgRe-koEH0AFUiNWMUqgKChZ5i9M3J2EkIF8tB3_bmCd6zYEZDXSjj4MecCSpMQjTmPgDg1SRnE901pXvAlWIbCtLjO0QGSMAGJH3hbX05TwszsD5W-P-6xMXNjTS_EGKkVeouMfUGK9mSa0tBgoxOZA5GPEFfjW7rUJP-lMCM/s320/IMG_6191.png" width="148" /></a></div><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br style="-webkit-text-size-adjust: none; font-family: -webkit-standard; text-align: center;" /></span></p><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPFOT62yGCTriuBciwEbUY9ZJQbiUulJSQCYchknyVHAr4CXPG7yA4pWUbTNV3-GkmwNq-_nROqRCxviupRxY7MHorr95d-d5NJJGZ-2PaEdyCp-2wl7sEO7nHMC3xwcEBAO0FX_JoneEAo6R5qQhoYfMxagxlyPOlJ67hr93IPGgJqDKlM5T58wcunLA/s2778/IMG_6193.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2778" data-original-width="1284" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPFOT62yGCTriuBciwEbUY9ZJQbiUulJSQCYchknyVHAr4CXPG7yA4pWUbTNV3-GkmwNq-_nROqRCxviupRxY7MHorr95d-d5NJJGZ-2PaEdyCp-2wl7sEO7nHMC3xwcEBAO0FX_JoneEAo6R5qQhoYfMxagxlyPOlJ67hr93IPGgJqDKlM5T58wcunLA/w197-h425/IMG_6193.png" width="197" /></a></div><div class="separator" style="clear: both;"><br /></div></div><div class="separator" style="clear: both; text-align: center;"><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmuqEYxEHNdhZyUzl9L9tRgNjtEA52s5ZsZm2dOoFIE03v-o6znHJLHmx06HANo2fkZkexOMbhtUYAzOdMG-WurkAklwb8e1i6FsSeFsfBmr0Ia35jQXiC0ACZ18u90h0xyCFbZCt65idK2gBJWsxgJocP1gODRlUkCmRL3nPPIdhavCNSD9CPnIPtC60/s4032/IMG_0469.jpeg" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="4032" data-original-width="3024" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmuqEYxEHNdhZyUzl9L9tRgNjtEA52s5ZsZm2dOoFIE03v-o6znHJLHmx06HANo2fkZkexOMbhtUYAzOdMG-WurkAklwb8e1i6FsSeFsfBmr0Ia35jQXiC0ACZ18u90h0xyCFbZCt65idK2gBJWsxgJocP1gODRlUkCmRL3nPPIdhavCNSD9CPnIPtC60/w150-h200/IMG_0469.jpeg" width="150" /></a> </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;">All of this was made possible by the fact that I had Covid from July to Nov and it didn’t kill me! </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Now we move on to the blip. My routine money blood test showed that I’d become profoundly neutropenic. This was 5 Dec. I told the consultant I had a scratchy throat. Swabs were taken and it showed I had flu and covid. I sure know how to have a good time! The consultant asked me to come back the following week. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;">In the intervening week I developed a temp. One night I woke up and went to the loo and couldn’t stop shaking even when I got back into bed. I kept spiking temperatures which settled with paracetamol. Then I had awful face, and jaw pain and a horrible headache. It seems I have developed sinusitis. The pain was waking me up at night. It was horrible. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;">The next blood test showed I was more neutropenic and my platelets were on 19. This is why I’m so bruised. It also showed my CRP was 155. That’s very high and is a marker of infection and inflammation. I was given a strong course of antibiotics which I’m halfway through now. It definitely improved the face and jaw pain but I still wake up with a headache and I’m still very snotty, which comes in a range of colours. Urgh! </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJykhtZu94zIxXulGrh7_TpvJz4SVAog2WSp5416kS0to35qawxj17YXOBEm_hdQ5ogguQ3S7l0oYdji3QbuvkfPXSl7W4NQxHVLbA7SQYyvywbKjKHhAPT1AaZQziPtYkCcD-VACpdRgWbmz6Q51pqd8BXb-__ubj5D9FRIqY-an7G6EkoexstWEpUsE/s4032/IMG_6318.jpeg" style="-webkit-text-size-adjust: none; font-family: -webkit-standard; margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJykhtZu94zIxXulGrh7_TpvJz4SVAog2WSp5416kS0to35qawxj17YXOBEm_hdQ5ogguQ3S7l0oYdji3QbuvkfPXSl7W4NQxHVLbA7SQYyvywbKjKHhAPT1AaZQziPtYkCcD-VACpdRgWbmz6Q51pqd8BXb-__ubj5D9FRIqY-an7G6EkoexstWEpUsE/s320/IMG_6318.jpeg" width="240" /></a></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; text-align: start;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYzUU1Ngr02szMLYQIEWJpuueB384pTM8CPYX9OOgyGdloVmGpxwZUIHRrgiJMC4FhVz2K4-ae_TZnOQ4dnGSMp37PVCH1kiqhzIPLaYHv7JrO1bKL8mnQZ0r25x9TaKj5ClAGQbsz5fuWrQvYDxb7HSzHD048BlZrj-SSTWQ6TeTiEfMSPbLmcLSL-Fs/s4032/IMG_6317.jpeg" style="-webkit-text-size-adjust: none; font-family: -webkit-standard; margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYzUU1Ngr02szMLYQIEWJpuueB384pTM8CPYX9OOgyGdloVmGpxwZUIHRrgiJMC4FhVz2K4-ae_TZnOQ4dnGSMp37PVCH1kiqhzIPLaYHv7JrO1bKL8mnQZ0r25x9TaKj5ClAGQbsz5fuWrQvYDxb7HSzHD048BlZrj-SSTWQ6TeTiEfMSPbLmcLSL-Fs/s320/IMG_6317.jpeg" width="240" /></a></span></p></div><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">On top of all this I was told by the ophthalmologists that I needed to have my cataract done. Regular readers will know that worries me more than any other thing. I have bone marrow biopsies with no sedation and no anxiety but because I’ve only got one good eye, I’m very protective of it. The problem is it’s getting really hard to drive at night and my hospital appointments are long. I often drive home in the dark. The consultant has decided it can be done as a priority. I will also have a senior surgeon doing the procedure because of my complicated medical history and the fact that only my right eye works. It will all be done during the next 6 months. Please pray or keep everything crossed for me. The picture is the drops I had to assess my eye health.</span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><img src="blob:https://www.blogger.com/20085efd-11bc-4e2b-8ff6-d821c5292d44" /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br /></div></div></div><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">So coming up to date; today’s bloods show a neutrophil count of 0. My platelets are now 11 and my Haemoglobin is 80. I need platelets and blood. I also still have flu, covid and a pseudomonas infection. Oh dear! That’s a bit pants just before Christmas. I’m gonna have a top up of platelets today and I have to come back tomorrow for some blood. They also may want to keep me in for a few days to give me some IV antibiotics. They will decide on that overnight. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Despite all that I’m keeping in good spirits. I’m just a bit weakened and even more frail than normal. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I’m really pleased I managed to get the Christmas decs up. At least I have beautiful twinkly lights to look at each night. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I hope wherever you are and whatever you are carrying inside of yourself or struggling with, that you find some hope and peace and light in the darkness. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Merry Christmas Xx</span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLJ8WNSAACsII0ybmfcYDXfJR-WCLXjg6ZyNbDPcTkve5OzeWqUnfU300938LBQ5bLNLx_62-302sJtdKZD2cB_ARr8lh_AqOV3fbXGZLo9re758qINkeTv_GF7ul2_HuXRblsfFAPyWnt9wTu-xQ8UscYX5xCqWIEabC1l1OzoPYJhSiKpS_l4J-lug8/s4032/IMG_6319.jpeg" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLJ8WNSAACsII0ybmfcYDXfJR-WCLXjg6ZyNbDPcTkve5OzeWqUnfU300938LBQ5bLNLx_62-302sJtdKZD2cB_ARr8lh_AqOV3fbXGZLo9re758qINkeTv_GF7ul2_HuXRblsfFAPyWnt9wTu-xQ8UscYX5xCqWIEabC1l1OzoPYJhSiKpS_l4J-lug8/s320/IMG_6319.jpeg" width="240" /></a></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">The gift of life in the form of a bag of platelets </span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuhQ837AFlqCpJMk07fd1PqnmrJmYI15tthRLge61-5xQ6xpbrSydo7-cOdhNTBnqhgYFczEZXWhTZsYBfaR0QA5Sz-th5RyMPmZ9qwnRpHkxngzyQuvNPFZKG6QpGCUbILTnPRDAHSZ1W9I95n0m3lXEoNKxmMLbOcTOYN5HMEF5YiJ-Pim3dsuh91sU/s4032/IMG_6247.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuhQ837AFlqCpJMk07fd1PqnmrJmYI15tthRLge61-5xQ6xpbrSydo7-cOdhNTBnqhgYFczEZXWhTZsYBfaR0QA5Sz-th5RyMPmZ9qwnRpHkxngzyQuvNPFZKG6QpGCUbILTnPRDAHSZ1W9I95n0m3lXEoNKxmMLbOcTOYN5HMEF5YiJ-Pim3dsuh91sU/s320/IMG_6247.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKboOcJbixgm7m3xD3eoLP-wSGci09iD3LXbRf0eOBmVwGZBk6cJcnTvMid3G82SJpU5iZrB_F654yFShuSB9JCGSg4mzxYQqebyYxct60bxB99qryTg99Ze7LQavtYjisKrgYIosLuzxTO9jCWeoRar2VakfBCVt46ASiL7Hbb9wRJ6k2lzLnjWldJW4/s4032/IMG_6249.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKboOcJbixgm7m3xD3eoLP-wSGci09iD3LXbRf0eOBmVwGZBk6cJcnTvMid3G82SJpU5iZrB_F654yFShuSB9JCGSg4mzxYQqebyYxct60bxB99qryTg99Ze7LQavtYjisKrgYIosLuzxTO9jCWeoRar2VakfBCVt46ASiL7Hbb9wRJ6k2lzLnjWldJW4/s320/IMG_6249.jpeg" width="320" /></a></div>An early Christmas pressie to keep me alive. A bag of nice juicy lifesaving red cells <br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoh734JqA-kvz4AOo67cXUL25Jqt89ZP8fnGKbFN-AA-c58IwcU9iYRVThebfbygJyEJ0gSzJp3RUbTzXJvfN7kFgJ7m56hhB1Xe2fqZxP8jxRLW-sez8jEtUkZCQrhKX3YA2dpC7M9MQRdU2zqiqFumKpPJkM9X0XMK7XBRM5abxlkBpZ9GNLVtqP-VU/s3088/IMG_6331.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3088" data-original-width="2316" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoh734JqA-kvz4AOo67cXUL25Jqt89ZP8fnGKbFN-AA-c58IwcU9iYRVThebfbygJyEJ0gSzJp3RUbTzXJvfN7kFgJ7m56hhB1Xe2fqZxP8jxRLW-sez8jEtUkZCQrhKX3YA2dpC7M9MQRdU2zqiqFumKpPJkM9X0XMK7XBRM5abxlkBpZ9GNLVtqP-VU/s320/IMG_6331.jpeg" width="240" /></a></div><br /><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-34473750237421207642023-11-13T19:31:00.000+00:002023-11-13T19:31:24.647+00:00All Types Can Save Lives! <p><span style="font-family: "Times New Roman"; font-size: 23px;">One of the things I’d hoped for after having my bone marrow transplant was that I would get my active life back and I would be able to ditch my chest of medicines and medical appointments. Sadly that didn’t happen.</span><span style="font-family: "Times New Roman"; font-size: 23px;"> </span><span style="font-family: "Times New Roman"; font-size: 23px;">I take more medicines now than I ever have. I had also hoped that I would have less visits to the hospital. That hasn’t worked out either. Sometimes I’m still there weekly. The biggest gap I have is a month between appointments. It may not be the life I’d hoped for but the fact that I’m still here is a miracle! For that I am very grateful.</span><span style="font-family: "Times New Roman"; font-size: 23px;"> </span></p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 26.4px;"><br /></p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;">One of the reasons why I only have a months gap between appointments is because I have a specialist treatment called IVIG (intravenous immunoglobulins) This treatment gives me some antibodies that I’m lacking in order to be able to fight infection. Before I had the treatment I kept picking up various infections. I would have my flu jab every year but still managed to get flu every flu season. One year I had two flu infections at the same time. The infections often ended up with me needing a lengthy hospital stay. I remember one time when I had pneumonia, it took me 45mins to make my bed. I’m a stubborn bugger! </p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 26.4px;"><br /></p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;">IVIG is an expensive but valuable treatment. It saves lives including mine. It’s made by collecting antibodies from wonderful blood and plasma donors. Antibodies are developed when healthy people come into contact with infection. They are part of the immune systems healthy response. Due to all the treatment I’ve had, I don’t have this response. </p><p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><br /></p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;">When someone donates blood, that donation can be used to help three people. Each blood donation is broken down into its separate component parts using a centrifuge. Red blood cells, plasma, or platelets are extracted using specialised machines.</p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 26.4px;"><br /></p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;">People can also donate plasma. That takes a little longer than a blood donation. Plasma is taken and red cells are given back all done by a clever machine that spins to separate the good stuff. This process takes about an hour.</p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 26.4px;"><br /></p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;">Plasma is the part of your blood that carries platelets, red blood cells and white blood cells around the body. Plasma makes up approximately 55% of your blood, and contains antibodies, known as immunoglobulins, which fight infection. These antibodies are made into medicines to help people with rare diseases, immune disorders and genetic conditions. By giving plasma you could help build a person's antibodies, help to heal burns, protect pregnancies, and help babies' hearts to continue to beat.</p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 26.4px;"><br /></p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;">The NHS needs more plasma donors in Birmingham, Reading and London but many people don’t realise they could donate.</p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 26.4px;"> </p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;">When they do come along, these amazing donors come from all walks of life and plasma is used to treat more than 50 diseases.</p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 26.4px;"> </p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;">NHS Blood and Transplant is running the ‘All Types Can Save Lives’ campaign during November because many people don’t realise they could donate.</p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;">Plasma donation is similar to blood donation, except a machine next to the donor filters out the plasma. The donor then gets their red blood cells back, which means they can carry on with their day as normal.</p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 26.4px;"><br /></p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;">As I finish this blog I want to give a big shout out to all the donors who have given blood or plasma. You have saved my life over and over again. To you it’s just one day that is slightly disrupted. To me it gives me more time with my family. It gives me the chance to see my grandchildren grow up. It gives me the chance to put back into the system that has worked tirelessly to make me well. This thank you from me also comes from all those who know and love me. </p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 26.4px;"><br /></p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;">If this blog has moved you, maybe you could consider becoming a donor. How amazing would it feel to save a life? </p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 26.4px;"><br /></p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;">You can book an appointment at <a href="http://www.blood.co.uk/plasma">www.blood.co.uk/plasma</a></p><p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUSBRgwSiwAhb34enILUt1PE0u9T__9Nvy8PnxCn9hVwc7-9Bm1IbDxM5fOTikOmw_l8Nbic_MrASR1LVPVkp2FbE3KOvZymU1VuXlFa6VaarKN3n2SM7UE-Gk6hnyHhCGhhfpJb20tL02cYaaTiBnE9Kx3pykcaPf53NHqzVKWiZvs4o6PIv3F_Jl2bI/s4032/IMG_5083.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUSBRgwSiwAhb34enILUt1PE0u9T__9Nvy8PnxCn9hVwc7-9Bm1IbDxM5fOTikOmw_l8Nbic_MrASR1LVPVkp2FbE3KOvZymU1VuXlFa6VaarKN3n2SM7UE-Gk6hnyHhCGhhfpJb20tL02cYaaTiBnE9Kx3pykcaPf53NHqzVKWiZvs4o6PIv3F_Jl2bI/s320/IMG_5083.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBR8cDql0jPj-7uMGv3cU8-L5OKoL61_LBpxdp9EZtUr1JhgM18ceSDgoy6HD_47VFNI-xQDTnJ2SUC-GSjQrUYeSJm8-YyaSd6xzGRkG_21z6f2WqqZsDBPv0WWwQ5FimzWL0J93f3E9fyNE0fprxDwb1xCekFdMGVztPD5awr1GphzkgElkOiSTrEco/s1800/IMG_5765.jpeg" imageanchor="1" style="margin-left: 1em; 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<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 26.4px;"><br /></p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 26.4px;"><br /></p>
<p style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-style: normal; font-variant-alternates: normal; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 26.4px;"> </p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-70222893717604429392023-10-21T19:06:00.002+01:002023-10-21T19:06:25.689+01:007th rebirthday. <p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhqacLCcWCysovD0EdCKRFamIzyf5qkM6B7zboPEFCtgduoh6LwrFvMm_Tw9__mZT82g9tldm9Potl05Jvmg_2e_k9RInP2nge9sQo3xr22qyu6wOwXZD7IkH6X2pao1iwMj2sEcn7MDfl87FZc0VDbIHgqT_cMKDxTmt1-nAGh9OLug5IL8deZDDMls4/s3840/4DF2318E-B1CD-468E-B58E-7287EE96A148.jpeg" imageanchor="1" style="margin-left: 1em; 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text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzr3ouMVuqjaH9bl5UDsFXVdpFNXcqliRr6TsPnKpOAfUYiQT73Rw0fXW0booTBDmT_lNsuMYxPncHKnhCyfNLdJmEOKDwlXftLkWTDuKPk1H6PhW2MrS3WOqKVF6yCoQOjWvbsggncyGdqZtNRZYrLVCoaydW8cxE_4E7afXknPFGnixrxP6V5bRuldo/s4032/IMG_5905.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzr3ouMVuqjaH9bl5UDsFXVdpFNXcqliRr6TsPnKpOAfUYiQT73Rw0fXW0booTBDmT_lNsuMYxPncHKnhCyfNLdJmEOKDwlXftLkWTDuKPk1H6PhW2MrS3WOqKVF6yCoQOjWvbsggncyGdqZtNRZYrLVCoaydW8cxE_4E7afXknPFGnixrxP6V5bRuldo/s320/IMG_5905.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKu62lGYbnvsd2fbJ8dDhNlVimaAzDoLmhHJDu2eoGRpqWldOo36B_UGbDBhqXMPN3nuIgS42oZlQExcyRpKKLnonozoETK0UfuuDDVaBFa6IN0fBJpzIuSqSBRTus2HqKvHB3G127XIscEIc7aFG5sRyrM4qSYf_RVBt0D3evtSTyqUZNMJH5N95cF6I/s3088/IMG_6803.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3088" data-original-width="2320" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKu62lGYbnvsd2fbJ8dDhNlVimaAzDoLmhHJDu2eoGRpqWldOo36B_UGbDBhqXMPN3nuIgS42oZlQExcyRpKKLnonozoETK0UfuuDDVaBFa6IN0fBJpzIuSqSBRTus2HqKvHB3G127XIscEIc7aFG5sRyrM4qSYf_RVBt0D3evtSTyqUZNMJH5N95cF6I/s320/IMG_6803.jpeg" width="240" /></a></div><br /> <p></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Today is my 7th rebirthday. The photos show the transplant joinery through its highs and lows. It’s hard to believe that 7 years ago my little sis gave me the amazing gift of life in the form of her stem cells. Followers of my story, friends and family know it’s not been an easy road to travel and it still isn’t. The fact I’m still here though is amazing. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I sometimes wonder why I’m here when so many great and good people have succumbed either to the MDS or the effects of treatment. It makes me look at life differently. I just don’t sweat the small stuff. I can smile at the beautiful sunset. Go out just to see the moon, watch the clouds and people walking by, enjoy the warmth of the sun and feel the gentle breeze on my face. I could go on but you get my drift I’m sure. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Before all this, even though I already had the MDS, I used to take on life at break neck speed. If I needed to do a 12 or 14 hour day at work, I did. I also had my church commitments at the weekend where I’d often have a sermon to write or service to take. I neglected my family at times because I felt an enormous responsibility to do all the things I’d said I’d do. I have a strong Protestant work ethic and it’s not always a good thing. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">When I had my transplant, I thought I’d give up a year of my life and I’d get back to work. Today 7 years on I’m still nowhere near to being able to go to work. However I’ve let all those shoulds and coulds go. I live life more slowly. I have all the time in the world for my family. When life’s irritations come along I just think “well this is different” and I like different things. For example, my home currently has no heating or water due to a leaking pipe. It’s been this way for just over a week. I am wearing fleece lined snow trousers and 4 tops. The problem has been diagnosed now and we are just waiting to find out what the insurance are going to do. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">As you can imagine, we’ve had offers of help from family and friends, some of which we’ve taken up. It’s hard to stay too far away because we don’t know when and who are coming to sort this out. It’s further complicated by my partner starting jury service next week. Some people would be really stressing about all this. I just think “sh*t” happens and it will get better. I also know it’s a 1st world problem. If I had no way of keeping warm or getting water like those in exile, refugees of many nations, the Palestinians currently caught up in the conflict created by the terrorist actions of Hamas and an overly aggressive response that speaks more of vengeance than justice. Most Israelis and Palestinians yearning for peace. Why oh why can’t that voice be heard louder than the fear and warmongering? It puts my challenges into perspective and I never forget how blessed I am. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">This blog marks my 7th rebirthday but it also marks my commitment to live in peace with all that my body throws at me as well as strive for peace in the world and the thing about me is I’m foolish enough to believe I can do that and make a difference. Fancy joining me? </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-36335338474494770482023-10-04T11:32:00.000+01:002023-10-04T11:32:08.559+01:00Important anniversaries <p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja-0jpspZGNBs0B-rQMkm6h0G1_pyznYmIwPDVruz7QXqGa8Qz6ft17mXphlppo8MPQope6agKRfJ4EeJAR7mGwjHC9gR2S_S9Mlvn9FKrkOHQ6cp3NygdUUNKrj3_o6LFXx7nr8KGr8764eT6Yo08z6xSKfcAS34bkrEnjPUizJ8hg9zBOowAplqcy4U/s604/IMG_3226.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="453" data-original-width="604" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja-0jpspZGNBs0B-rQMkm6h0G1_pyznYmIwPDVruz7QXqGa8Qz6ft17mXphlppo8MPQope6agKRfJ4EeJAR7mGwjHC9gR2S_S9Mlvn9FKrkOHQ6cp3NygdUUNKrj3_o6LFXx7nr8KGr8764eT6Yo08z6xSKfcAS34bkrEnjPUizJ8hg9zBOowAplqcy4U/s320/IMG_3226.jpeg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK_LIXHx5nxsFiqOkc7mdgAEZRvk17vkfPLa-o-je7cwx9Bx5ukHYsGB4xJLOxCMzrhdUsFcNNUTVMDcuSUH2ISA2Uslw92oGNepQpIcIk_I0aW7KU2aprogmF7mAkRJRbsH41un2yRYwizt-lNkLRRrzG8UdRyGE7i5TN7G7IEUDClGbY-FGk__N3j7Y/s3264/IMG_5353.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3264" data-original-width="2448" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK_LIXHx5nxsFiqOkc7mdgAEZRvk17vkfPLa-o-je7cwx9Bx5ukHYsGB4xJLOxCMzrhdUsFcNNUTVMDcuSUH2ISA2Uslw92oGNepQpIcIk_I0aW7KU2aprogmF7mAkRJRbsH41un2yRYwizt-lNkLRRrzG8UdRyGE7i5TN7G7IEUDClGbY-FGk__N3j7Y/s320/IMG_5353.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDOnicxueN14GRh6uH-ADt1-5LJvEolDd3asWnNOHFHzam-7pZRl3w6uwpYvWC8Y3LS2DBxsTidSu4eAfKGiSfQ7Oiv8EPDFROU28D02LpKEOD-2UKO4UROu7vwEFqSO0sJSqKHEHTAHcLB9cqzStdBwl6FbGnZPlXcQu1E-dDEUW6OHX4CFGiOTm0wjc/s920/IMG_5370.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="652" data-original-width="920" height="227" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDOnicxueN14GRh6uH-ADt1-5LJvEolDd3asWnNOHFHzam-7pZRl3w6uwpYvWC8Y3LS2DBxsTidSu4eAfKGiSfQ7Oiv8EPDFROU28D02LpKEOD-2UKO4UROu7vwEFqSO0sJSqKHEHTAHcLB9cqzStdBwl6FbGnZPlXcQu1E-dDEUW6OHX4CFGiOTm0wjc/s320/IMG_5370.jpeg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvM-pGu2S7JsPrXFTk0-vOPcZIZSnlwlzJYk0HwKL5AN12rsXhQds-HYBIRMQbC_x0E_77Jplw_gk-XP37EiI0yXkudIiDvvylO6JOcVdCTINMl-Rf1bHs18E0N9jrau8GnKBQ8gcSuS7amfYsd5sPJhw7C4GUzINuh3mOZAqU0UeWy7v8EHZrcHuJ7WE/s3264/IMG_7069.jpeg" imageanchor="1" style="margin-left: 1em; 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font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">A few important anniversaries have occurred recently. The first one was last Friday. On this day 20 years ago I was ordained in Southwark Cathedral. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I remember that deeply spiritual moment when the bishop laid his hands on my head and I could feel my soul sigh. I closed my eyes, which is really unusual for me, and I knew I’d finally come home to the place I was meant to be. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I served my title (trainee vicar) at St Saviours in Eltham. I already knew Wendy, AKA the Pink Vicar, who was the Priest in charge of the parish. She said something really valuable to me at the start of our working together. She told me I had the right to learn from her but I didn’t have to become her. This was good news because although we have loads in common, we are different people. There started a heathy and nurturing working relationship that sustained us both. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">The congregation took me to their hearts. They loved my funny ways including walking down the aisle on a pair of stilts to illustrate stepping out in faith. I was in full robes at the time too. Lol. Another happy memory that raised an eyebrow was when I handed out chocolate at the communion rail on Easter Day. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">After a year of being a deacon, I was ordained priest. I was loving being a curate at St Saviours but I wanted more. I realised I should have put myself forward for full time ministry. My lack of confidence about my academic ability had gotten in the way. I realised I was wrong and I wanted to swap to full time stipendiary ministry. I was put through my paces once again and sailed through the process. I was also able to get a a job as a chaplain at Lewisham Hospital with the Bishops permission before my transfer to stipendiary came through. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I had 5 happy years working with some amazing patients, relatives and staff. Our hospital was one of the first to offer baby funerals to any parents experiencing any form of pregnancy loss. I remember one very sad case. A woman contacted me after the Alderhay scandal over the keeping of specimens. She told me she hadn’t wanted any funeral at the time of her miscarriage and she went on to regret that. She wondered if the slides were still at the hospital that were taken from the foetus. I was able to locate these slides and her and her husband came in and spoke at length to me about where that were at. We decided to have a small funeral service at the crem for all that remained of their baby. I was able to get a tiny cardboard coffin that I put the slides in. The service was only 15 minutes but it was beautiful and very moving. The family contacted me several weeks later and said they felt so much easier with themselves now and they thanked me for honouring and giving voice to their grief. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">It was an amazing job that put me in the very privileged position of standing at the point where the love of God met the mess of the world. I flourished in it and was able to be really creative including becoming part of the palliative care team and attending all crash calls while on duty. I was changed by that experience and hold several precious memories deep within my heart. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">As my health deteriorated I needed to have a rethink. You know the best way to make God laugh is to tell her your plans. My next move took me back to school. I couldn’t believe it. I’d left home and school around the age of 15. What on earth did I know about schools. Our God has a good sense of humour so off I went to be Associate Vicar at St Hugh’s Bermondsey and Chaplain to St Saviours and St Olave’s School. Despite my misgivings God and the Bishop’s faith in me proved to be accurate. I loved it. I went from dealing with horrendous trauma and call outs in the night to mopping up the tears of children whose rabbit had died. I learned that if you take children’s fears and anxieties seriously, even if they seem trivial, they will come back to you with the big things. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Sadly for me the split nature of the role meant I was working crazy hours. It felt like I had two full time jobs. I didn’t have any down time. When the school was quiet, the parish was busy and vice versa. Despite loving what I was doing and meeting some amazing people when I was asked to take on a full time school chaplaincy I jumped at it. After 3 years I said a tearful goodbye and headed off to Maidstone. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">My new job was to create a Christian ethos in a school that wasn’t previously Christian. They wanted someone who could cope with sorting this out when some may be hostile. I think they also liked my unorthodox Rebel Rev ways! Again I loved it. I enjoyed the challenge of making the love of God real to all I encountered. Chaplains are there for people of all faiths and none. I’m happy working that way as I think that’s the essence of what’s good about believing in a God of love. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">It didn’t take long before the kids, their families, staff and governors all started using me and seeing the value of having someone like me around. Every break and lunchtime I had a chapel full of kids. It was great fun and there was never a dull moment. I learned so much and built on my knowledge of education already gained from my previous role. I was used to mediate with angry parents, to hold restorative justice meeting between kids who had fallen out or staff and kids or staff and staff. My pastoral role and gifts shone and excelled. I was asked to give a speech every year to the prospective new parents about what a caring school we were and how we’d look after all of their child’s needs not just not the <span class="Apple-converted-space"> </span>academic ones. I spoke at Chaplains conferences about changing the ethos of the school. I was well respected all round and again proved the people that suggested me for the job had got it right. Just to be clear I did interview for the job too. I wasn’t just slotted in. The day of the interview I was feeling really ill. My partner was away so I asked my mate Anna to come with me in case I became too unwell to continue. When we got to the venue I was welcomed. The interview was on the first floor. At that point I could still manage stairs but as I was climbing the stairs I was really struggling to breathe. I got in the room and thought I was going to pass out. I spotted the water left for me and took a big gulp. I started to feel a bit better. I don’t remember much about the rest of the interview. When I left I went to the cafe next door where Anna was patiently waiting. I told her I felt dreadful and we needed to get a taxi to A&E. Within a few hours I was admitted and given an emergency blood transfusion and put on an HDU ward. The next day I was diagnosed with a burst duodenal ulcer. How I got through that interview I’ll never know. The memory of it makes me shake my head and smile. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Sadly after 5 fantastic years I was made redundant. The school didn’t want me to go, nor did the kids or the parents. Sadly education is very badly funded these days. Many academies take over in a blaze of glory but then have to make loads of redundancies. While some get richer, the kids suffer. This has happened over and over again all round the country. Pastoral teams and student mentors are disappearing at a rate of knots. Over worked teachers then have to do all the pastoral stuff at the same time as being under enormous pressure to keep grades up and tick all the boxes that Ofsted requires. I won’t rant any further but it’s a very sad state of affairs. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">As it turned out, the redundancy came at the right time. I left in the summer of 2016 and had my stem cell transplant in the October of that year. As things stand, 7 years later, I’m still in recovery and unable to work. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I’ve had such deep and rich encounters through my ministry. I’m so lucky I found my calling. What saddens me is, since I’ve been unable to work or go to church, I’ve been allowed to fall off the edge. Who cares for the carers? Initially after the transplant I wasn’t well enough to go. Then the pandemic hit and it wasn’t safe. I feel very far away from the establishment and the formal structures. My relationship with God is ok but I know these things need to be nurtured by being in fellowship. It makes me really sad that at this 20 year anniversary I’m not able to exercise any formal ministry. I could now do some bits and bobs physically having survived a recent first covid infection but nobody ever asks apart from the odd funeral. Even though I couldn’t do things in person, I could still write prayers or offer support via zoom. No one tried to keep me connected. I don’t know where to go next. I don’t like this feeling of disillusionment but I have to acknowledge that’s where I’m at. “Faith is reaching your hand out into the darkness and finding it held.” </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I mentioned at the start that there were two important anniversaries just now. Today is 8 years since my lovely chosen mum Marlene died. I know she’s been close to me today. I had a couple of comforting signs. The nurse I saw today was called Marlene. Also a conversation with a friend later ended up with her saying something that Marlene always said. It was so nice to have these reminders but it’s a little bittersweet. I could really do with a chat with my “mum” just now. My head is full of all the above and I have to find a way through it. Marlene would always help me find my way. Love and miss you Guapa May you continue to rest in peace. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I saw my respiratory consultant today. He thinks I may have long Covid. Sigh! Great eh? My lung function is slightly reduced from the last one but that’s understandable given my recent Covid infection. I’m lucky it’s not been loads worse. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I’ve found writing this out to be quite emotional. Thank you for “listening” <span class="Apple-converted-space"> </span>God bless this mess! </span></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-73345279376536282402023-09-19T13:25:00.000+01:002023-09-19T13:25:37.638+01:00Sign and symptoms of blood cancer<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsq7T9nNVtRKrPYK57w7D3EOVlW0Ahlqs8_exMG0Co-19PZxjJND8_CnalWTrS2ZoyVhJkrMiZltzcT4OQK-XySpOU3-YeMTOMoX1k4bVovOalKQtBHvQVkmL31MfsnRLR2Y6AiiH8HNpxvoA8rC47yaM_sQ4I_ARzrPSpaAz2KnzgbVvutltB9iuHDDQ/s600/IMG_5693.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="600" data-original-width="600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsq7T9nNVtRKrPYK57w7D3EOVlW0Ahlqs8_exMG0Co-19PZxjJND8_CnalWTrS2ZoyVhJkrMiZltzcT4OQK-XySpOU3-YeMTOMoX1k4bVovOalKQtBHvQVkmL31MfsnRLR2Y6AiiH8HNpxvoA8rC47yaM_sQ4I_ARzrPSpaAz2KnzgbVvutltB9iuHDDQ/s320/IMG_5693.jpeg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7O5bPP2F5CVXiWsrpCnyy6hh0rkz_G8GUmwSxhF7vg4rYSNyeZaloOAP5HLiD-j1QdmeNhuzzV_mCKD_8PW5ADZLUYmNR2yEFS5AeBVvflEqctuQgAKK-wpjv0XVG8_OO8uvu_Hz2gSeJSVXIpL1KrhxK6-nn03xTJQFyoWRADNsx7uu6axah--HXY5g/s1286/IMG_5764.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1269" data-original-width="1286" height="316" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7O5bPP2F5CVXiWsrpCnyy6hh0rkz_G8GUmwSxhF7vg4rYSNyeZaloOAP5HLiD-j1QdmeNhuzzV_mCKD_8PW5ADZLUYmNR2yEFS5AeBVvflEqctuQgAKK-wpjv0XVG8_OO8uvu_Hz2gSeJSVXIpL1KrhxK6-nn03xTJQFyoWRADNsx7uu6axah--HXY5g/s320/IMG_5764.jpeg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkRhHv_nKdb9vqFBa4ZZ3Y7i1_1IeBYHr4SUYHKy3Ffw71pVbtSazThtDeMUeQcy9dszcqvq0OkL11WjOvH3EtXEwcE3UWrjtss6Bm_d2ZX6GnIJr-8hdbZvSX3tssIUUmbfrqhjL5jGCY1i7qsMEEAcQfrK4JDgMCta5-x-veuofjJ0bkmHSEQzVToHU/s4032/IMG_5811.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkRhHv_nKdb9vqFBa4ZZ3Y7i1_1IeBYHr4SUYHKy3Ffw71pVbtSazThtDeMUeQcy9dszcqvq0OkL11WjOvH3EtXEwcE3UWrjtss6Bm_d2ZX6GnIJr-8hdbZvSX3tssIUUmbfrqhjL5jGCY1i7qsMEEAcQfrK4JDgMCta5-x-veuofjJ0bkmHSEQzVToHU/s320/IMG_5811.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkSebNrvs0XaoG7LDj_Q4IYeYRQqhKWbE7kw5b7BEdUfLQPhfUveFtgCj4xzWmFHZTWBTMO1rh2uyQyJOCoVUAIk849Lxwv54FbMNzsZ-KYxqejiYF1O7lFWSnDBgwEEKjaqIcTLCHRI6VJrXTiQz0r1SYZqrtMKygfL2LKo3gz4AA6Iki9NqRVwKgJNw/s960/IMG_5842.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkSebNrvs0XaoG7LDj_Q4IYeYRQqhKWbE7kw5b7BEdUfLQPhfUveFtgCj4xzWmFHZTWBTMO1rh2uyQyJOCoVUAIk849Lxwv54FbMNzsZ-KYxqejiYF1O7lFWSnDBgwEEKjaqIcTLCHRI6VJrXTiQz0r1SYZqrtMKygfL2LKo3gz4AA6Iki9NqRVwKgJNw/s320/IMG_5842.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvjcg5xmaHbPoA_IHl3omSFLAKtJ43ySs7YYQrrsBCgwpFtpIBHMwyH0t0J3d6zQumgQEztjN8CBvLqxJiT3zxrZhZxC0OusSG3LsE6i_BqzGIxBdtnC50CcuuJuCnVHBkGkLImgFAtnsJsjpwOJ4Z6ldgfLBKdP2dopzWTBvW1-fwWdjLtYSINukX-ko/s368/IMG_5843.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="319" data-original-width="368" height="277" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvjcg5xmaHbPoA_IHl3omSFLAKtJ43ySs7YYQrrsBCgwpFtpIBHMwyH0t0J3d6zQumgQEztjN8CBvLqxJiT3zxrZhZxC0OusSG3LsE6i_BqzGIxBdtnC50CcuuJuCnVHBkGkLImgFAtnsJsjpwOJ4Z6ldgfLBKdP2dopzWTBvW1-fwWdjLtYSINukX-ko/s320/IMG_5843.jpeg" width="320" /></a></div><br /> <span style="font-size: x-large;">This month is blood cancer awareness month. My steep learning curve about my rare blood cancer began. In the late ‘90s. I had had abnormal blood results going as far back as the ‘80s but it was not a clear picture. I didn’t know much about blood cancer before being told I had it. Could you name some of the most common blood cancer signs and symptoms? I’ll leave you some space to consider your answer. I’ll list the symptoms at the end of the blog. </span><p></p><p><span style="font-size: x-large;"><br /></span></p><p><span style="font-size: x-large;">Regular readers will know how tough I’ve found the pandemic. I started shielding even before lock down as our haematology teams were becoming concerned about the new emerging virus. This meant I was locked away from those I love and really felt the void of not hugging my kids and grandkids. When everyone else went back to “normal” I had to carry on shielding. I have an absolutely rubbish immune system and have been known to really crash when I have an infection. My fantastic medical team just told me to continue to be cautious. Summer was better as it meant I could see people outside. If I went any where I’ve had to continue to wear a mask and practice social distancing. Visitors indoors didn’t happen unless the windows could be open and I could sit apart from others. It just seemed to be an endless forced separation. I really didn’t like it. </span></p><p><span style="font-size: x-large;"><br /></span></p><p><span style="font-size: x-large;">I’m July I took a trip to Ireland. Despite all my precautions and help from Irish Ferries to keep me separate from other passengers, at some point I picked up covid. The first day I felt pretty awful. My chest was really painful. Once the specialist antivirals that extremely vulnerable people need were prescribed, I started to feel better. This was a 5 day course. I did a test and the treatment had worked and I was negative. Unfortunately after a couple of days my symptoms came back and I tested positive again. </span></p><p><span style="font-size: x-large;"><br /></span></p><p><span style="font-size: x-large;">Before I went to Ireland I had developed a tooth ache in late June early July. I saw my dentist and had a treatment plan worked out for when I got back. Sadly this had to be put on hold due to being covid positive. While I’m still testing positive the team at Kings have been seeing me weekly to keep an eye in case of any problems. They are so surprised that I hadn’t had covid before. My shielding was obviously good. It’s now mid September and I’m still testing positive. My lateral flow test has a very faint line now so going in the right direction. The PCR is still positive. I’m adding new meaning to the term “long covid”</span></p><p><span style="font-size: x-large;"><br /></span></p><p><span style="font-size: x-large;">One of the GOOD things about having had covid is that people can now relax. I’ve had it and it hasn’t killed me. Yes I have a few problems still from it but the BIG worry is gone. The other enormous benefit is this means I can now hug people. I’ve had to wait till this week where my lateral flow is hardly registering. I just wouldn’t want to possible infect anyone. My team told me it’s very likely that I’m not infectious to most people, it’s just my poor immune system having trouble shedding the virus. </span></p><p><span style="font-size: x-large;"><br /></span></p><p><span style="font-size: x-large;">It was so wonderful holding my grandchildren, daughter, sisters, brother and other family and friends. My daughter and granddaughter and me and Maggie all had tears in our eyes. It was such a beautiful moment and one that I will treasure forever and keep locked safely in my heart. </span></p><p><span style="font-size: x-large;"><br /></span></p><p><span style="font-size: x-large;">So moving forward, I will still be cautious. All my family and friends know not to get close to me if they think they have an infection. I will wear a mask in high risk areas but otherwise I’m looking forward to rejoining society. </span></p><p><span style="font-size: x-large;"><br /></span></p><p><span style="font-size: x-large;">All of this is because I was diagnosed with the rare blood cancer Myelo Dysplastic Syndrome in 2000. I had a Stem Cell Transplant in October 2016 and then went on to develop Graft Verses Host Disease. Before all this started I had no idea about these things. I was a fit young woman still playing football. So what were those symptoms I mentioned earlier that took me to see my GP?</span></p><p><span style="font-size: x-large;"><br /></span></p><p><span style="font-size: x-large;">Blood cancer symptoms include:</span></p><p><span style="font-size: x-large;">* Weight loss that is unexplained</span></p><p><span style="font-size: x-large;">* Bruising or bleeding that is unexplained</span></p><p><span style="font-size: x-large;">* Lumps or swellings</span></p><p><span style="font-size: x-large;">* Shortness of breath (breathlessness)</span></p><p><span style="font-size: x-large;">* Drenching night sweats</span></p><p><span style="font-size: x-large;">* Infections that are persistent, recurrent or severe</span></p><p><span style="font-size: x-large;">* Fever (38°C or above) that is unexplained</span></p><p><span style="font-size: x-large;">* Rash or itchy skin that is unexplained</span></p><p><span style="font-size: x-large;">* Pain in your bones, joints or abdomen (stomach area)</span></p><p><span style="font-size: x-large;">* Tiredness that doesn’t improve with rest or sleep (fatigue)</span></p><p><span style="font-size: x-large;">* Paleness (pallor)</span></p><p><span style="font-size: x-large;"><br /></span></p><p><span style="font-size: x-large;">How many did you get? Please do me a favour this blood cancer awareness month of sharing my blog or just copying and pasting these symptoms and making people aware that these things are pretty non descriptive and can be caused by so many things including stress, that’s why people ignore them. Don’t. If it is the worst, although unlikely, the earlier you know the better. </span></p><p><span style="font-size: x-large;"><br /></span></p><p><span style="font-size: x-large;">As for me I live a very different life to the one I imagined, but I’m still here and breathing. I have much joy and love in my life and I still have new adventures I’d like to go on. For that I’m extremely grateful to my little life saving sister Gail and my fantastic haematology team at Kings and all those who love and support me</span>.</p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-58107951987380346282023-09-01T19:18:00.001+01:002023-09-01T19:18:37.984+01:00Blood Cancer Awareness Month 2023<p>September is blood cancer awareness month. You’ve heard lots from me about living with blood cancer and the effects ya of treatment. On this first day of the month I want to put out something different. Living with MDS (Myelo Dysplastic Syndrome) and having a SCT (Stem Cell Transplant)bus a big part of my life but it’s not the only thing about me. It’s so important to love and nurture the whole of you. This video shows very much that I refuse to be put in any box. I hope you enjoy it. I’m the one in the funny clothes the others are my life saving stem cell donating sister Gail, her husband Jeff and their daughter Jess The clip is just over 2 mins and you need the sound on </p><p><a href="https://youtu.be/eaQSbnBVnp4?si=U9a_s4PVp5qoy54c">https://youtu.be/eaQSbnBVnp4?si=U9a_s4PVp5qoy54c</a></p><p><br /></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-25720431837978490782023-08-16T23:38:00.002+01:002023-08-16T23:38:55.759+01:00Covid finally got me!<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgu34bGpc_hLgxiQ9ZA4fTyLf28WJaecxBx_qJxzYpgP8atzT4S6mK3gLfn2eD2Ac3tQGjaiTPjjjlyt3tf2BjOIwxYK03FyKWQqHDtQ_OoHCGI1Jx6oqaWYTiuPcFd8Lvb7x2KOLXM_ibriHt5AwtYsMhWDj7CD_sVzQtRbX-9akPi6JsykATHsRmHgew/s4032/IMG_0128.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgu34bGpc_hLgxiQ9ZA4fTyLf28WJaecxBx_qJxzYpgP8atzT4S6mK3gLfn2eD2Ac3tQGjaiTPjjjlyt3tf2BjOIwxYK03FyKWQqHDtQ_OoHCGI1Jx6oqaWYTiuPcFd8Lvb7x2KOLXM_ibriHt5AwtYsMhWDj7CD_sVzQtRbX-9akPi6JsykATHsRmHgew/s320/IMG_0128.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; 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margin-right: 1em;"><img border="0" data-original-height="485" data-original-width="736" height="211" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMfROoQLR6Y1lrOWjIySKxL72gH7Oku1SSsJlIOVbAB7OWN8v6Wxc6IBwPTy3-WluFZyFL-6pLfpmS3oJwvJpk1_humDbiV8WvWhL9-cqN_2ztAXRQMqcEbgq-ER1pSYDfNlScTlg8KCYD77RPVe9c7dd1oRprUmApQqbjPxxnNtdl5NOuBYdn6w3LtRY/s320/IMG_5556.jpeg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9rfRaSsew8FPjckXwmiS6C-5Qk8UOhQ1BLQ45WEyKpc1Os5bakiB2L-aJD4MokweXv0hDuNkzLaOadFbEyuhYgClggi5uY9UjkpqlQh875MTXc9E5lqpqtDV7mOio38XvUOAfZVG2TbarbUkpO_FLGz-mG5Sn3K8-Tfgc4XSwVKNBM-O0VAz9Gdoto-U/s4032/IMG_5599.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9rfRaSsew8FPjckXwmiS6C-5Qk8UOhQ1BLQ45WEyKpc1Os5bakiB2L-aJD4MokweXv0hDuNkzLaOadFbEyuhYgClggi5uY9UjkpqlQh875MTXc9E5lqpqtDV7mOio38XvUOAfZVG2TbarbUkpO_FLGz-mG5Sn3K8-Tfgc4XSwVKNBM-O0VAz9Gdoto-U/s320/IMG_5599.jpeg" width="240" /></a></div><br /> <p></p><p><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I’m writing this on the day that England beat Australia in the FIFA World Cup semifinal. It was an exciting match and I’m still on a high from it. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">For those who don’t know me so well, I’m a football nut. Every time I visit a country I pick up the National football shirt. Then when it’s the Euros or World Cup I can wear whichever shirt takes my fancy and enjoy the competition. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I’ve recently come back from a trip to Ireland. My oldest and youngest grandchild flew out and joined us for a week. We made the most of it but it was a challenging break. The weather was awful. I’ve been there in mid winter and had better weather. I managed to get the kids to the beach on the last full day they were there. We were all in coats and wellies. They had fun scrambling over the rock pools. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Another thing that went wrong is that I finally picked up covid. I’ve not had it up till now. The medics were all very surprised by this. It’s bloody typical when I’m up in the mountains of Kerry and the nearest hospital with a haematology unit is 2 hours away. Before I travelled to Ireland last October which was my first trip out in over 3 years, I made contact with the Irish cancer services and Cork University hospital. That stood me in good stead. I rang and spoke to one of the haematology registrars. He was so helpful. He rang Kings and spoke to my team in London. Then he sent a prescription for the specialist medication that clinically extremely vulnerable people need to the village pharmacy. The woman who works there and happens to be our nearest neighbour, brought the medication up to me. What a fantastic service and very quick too in getting me the needed medication. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Maggie and Sönke had it too. They spent a day in bed. I looked after the kids and made them laugh in my attempts to cook for them. Sönke asked me if I was bionic because I just got on with it. I told him I was used to feeling ill. That makes it easier for me to push on. Also I think the Paxlovid medication helped. After finishing the medication I tested negative. Then a couple of days later I started to feel rough again and sure enough was positive once more. It’s called rebound and can happen to those who are immunocompromised. Maggie and Sönke are clear now but 3 weeks on and I still have it. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Kings saw me yesterday and told me they want to see me once a week until I test negative. Today I’ve started to cough more and have a tight chest again. I shall keep an eye on what’s happening and get back in touch with Kings if I get any worse. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">In many respects I’m glad it’s finally happened. It’s good that I initially responded well to treatment. I hope it means that my poor long suffering family can stop being so anxious. I will still be careful as advised but not so isolated and cut off from everyone and everything. I need to get back to some semblance of normality. It’s been awful feeling so cut off from the world. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">One of the silver linings to all of this is that, despite being in the same house as 3 positive adults, they didn’t get it. It was so lovely to be able to hug them again. That Kerry airport hug bas they left to go home will stay with me forever. Can’t wait to start hugging more people. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">If the weather and covid wasn’t enough to dampen our spirits in Ireland, we also had a problem with the water that stopped working and bees in the dormer. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I still have happy memories of playing games with the kids. Pass the Pigs, Yahtzee and Jenga were the favourites. Molly loved going out wearing my wellies which fitted her perfectly. We went on a wander to the “Bat house” It showed me how poorly served disabled people are who want to be more active and out and about. I got shaken to death. Lol. The kids thought it was funny. I really need an all terrain scooter that can get me out and about. The problem is it needs to break down into the car. Also the ones that do this are very expensive. I shall have to remortgage the house. I may say this in jest but it’s a serious issue that disabled people can only do normal things if they can afford it. It’s not right is it? </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Enough of my ranting. At least while I’m recovering from the covid fallout I have plenty of good football to watch. I’m looking forward to Sunday when I hope we will be bringing it home. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"><br /></span></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-45978424948188389512023-07-11T21:00:00.002+01:002023-07-11T21:00:49.650+01:00NHS 75th Anniversary <p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNRFwVNOmUG9yJv4WNDLYXByIb0lpErg2RIONE5vj2uqyWq50urkxFyqh3BrCQ2mn2CPFY5YljhUxCvw_V9BJSMcHQ3-4QvTRiK8H6OL3m4zkyha0U9xY2RPCPG0HMzolYTJ6frHSgZxWL_kXpZxp96v__tsbThU0trtPZAOD8GtHmauLMH2OhzMJ9DcE/s2576/IMG_1848.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2576" data-original-width="1932" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNRFwVNOmUG9yJv4WNDLYXByIb0lpErg2RIONE5vj2uqyWq50urkxFyqh3BrCQ2mn2CPFY5YljhUxCvw_V9BJSMcHQ3-4QvTRiK8H6OL3m4zkyha0U9xY2RPCPG0HMzolYTJ6frHSgZxWL_kXpZxp96v__tsbThU0trtPZAOD8GtHmauLMH2OhzMJ9DcE/s320/IMG_1848.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhek4fZipJXVg2Vcn6Ejlw2FcUT_0M0-V1UPYl8oZZAEDuuseeI9xQ7fMJcocjWRRsFowY7tEyJLytIk0ATJ63ddQeS8Bso-NL6PKMlbfawxiD2ArVCGJrYmbLEF_X1e_IF-QHa5kZAiepVHluukesnzhB11cyd9eX_K1zzX7XJR0NGwvyiuN0Q20454-M/s1328/IMG_1930.jpeg" imageanchor="1" style="margin-left: 1em; 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margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5GsBJRBmAKhJTiJ2dNsjCuyBoEbJympCgHKk-veJ92EaiufpQG7OfITpG480XYlK1W6Y4GjZpsbnhvqajvHMhlvyuyJ11ws81iF4_WzcHS7ZJYuvbjf-GJajnySRErntoRVetywzSU_vFqYArWf8DOUJ_N5tijaBHxG40yE14IL-SXoxOVYh8bOh8asc/s320/IMG_5369.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXX4jhxlyDSiIUZVK9Dj-Atjd_PlxIsDkeOCXMYTtoFHzO9foAIRwAZUFO9Ejg110KrOKvXaWSdSMCfNS5M8ttFpB3G3kioWve5-_b1BL5iuryABGoDnvTi1ESmF6t8iAx-DRWpxQot-fTam78KxyBlQc9jrwYzg-0AItASoR66qexylBmPi8BWvw8md0/s3264/IMG_9056.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3264" data-original-width="2448" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXX4jhxlyDSiIUZVK9Dj-Atjd_PlxIsDkeOCXMYTtoFHzO9foAIRwAZUFO9Ejg110KrOKvXaWSdSMCfNS5M8ttFpB3G3kioWve5-_b1BL5iuryABGoDnvTi1ESmF6t8iAx-DRWpxQot-fTam78KxyBlQc9jrwYzg-0AItASoR66qexylBmPi8BWvw8md0/s320/IMG_9056.jpeg" width="240" /></a></div><br /><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 23px;">I couldn’t let this time go without sending a heartfelt happy birthday to our dear NHS on this 75th year anniversary.</span><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 23px;"> </span><p></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I was born prematurely in 1965 at the British Hospital for Mothers and Babies. This was my first interaction with the institution that was to go on and on saving my life many times over. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">As a child our wonderful NHS mended my broken bones and stitched my wounds, dealt with my nosebleeds and constant throat infections as well as removed my appendix. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">As a teenager I volunteered on what was then called a Long Stay Geriatric Ward. I loved it. The nurses on the ward saw something in me and encouraged me to apply for nurse training. I said I couldn’t because I’d already left home and didn’t have any exams to my name. They were a bit shocked by this but it didn’t stop them encouraging me. Their persistence paid off and at 19 years old I started training as a nurse. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I was taught by dedicated medics about so many deeply interesting things. I became fascinated by how much the human body can take. I realised that even though I was young, my unconventional upbringing meant nothing much fazed me and I was happy to get stuck in no matter what. I was only on my second ward and in my first year when the Sister (Ward Manager in todays terms) took me into her office. She said she wanted me to sit with a dying patient so his wife could have a break. She explained she wouldn’t normally ask someone so early in their training to do this and I didn’t have to do it, but she thought I could. Well she was right. I held that man’s hand and also his wife’s as he slowly slipped from this world. It set up in me a passion to try and ensure people had a good death. I was also happy to do the last offices for any patients that had died. Some much more senior nurses didn’t like doing that and were astounded at my ability to do it. When I was 19 I looked like I was about 12 so that probably contributed to their amazement at how they saw me. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Sadly the NHS was also there for me when I had an accident while on a night shift that sadly ended my nursing career. I tried to stop a patient falling over and managed to hurt my back so badly that I ended up on traction for 6 weeks</span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Those great experiences proved to be very useful when I went back into the NHS several years later as a Hospital Chaplain. I was privileged to collect the tears of many patients and their families and visitors as well as the staff. I became an integral part of the emergency bleep, pioneering a scheme where the chaplain attended crash calls, not to help with the patient, but to look after any family members. Sometimes when the death was very traumatic maybe a child or young adult I would also do debriefs with the <span class="Apple-converted-space"> </span>staff. They found this very useful. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I was also fortunate to train senior nurses and junior doctors in the art of breaking bad news. All these things show the NHS is responsive to change and puts value into the importance of pastoral care for patients and staff as well as communicating well at these tough times. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">During my adult life there have been many amazing encounters with exceptional medics. One of them managed to do key hole surgery on me for a myomectomy. This procedure, to remove fibroids, was normally done with a big abdominal cut. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">When I was diagnosed with the rare blood cancer Myelo Dysplastic Syndrome (MDS) in 2000 the NHS really stepped up a gear. The dedicated teams I’ve been under have been exceptional in their expertise and knowing when to do what and at the right time for me. I had a Stem Cell Transplant (SCT) in 2016 and I’ve needed more and more care from the NHS since developing Graft Verses Host Disease (GvHD) and various complications from all the high intensity treatment. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I have had sepsis innumerable times. Each time the NHS has helped me cheat death. I’ve had horrible side effects of no immunity by picking up nasty fungal lung infections, flu, pneumonia abscesses that I then needed surgery to fix the damage caused. A dedicated consultant who knows me well wasn’t due to see me on this particular clinic day but she saw me in the waiting room and told the new consultant to check me out properly as I didn’t look right. She was spot on. I had Superior Vena Cava Occlusion (SVCO). Once again the NHS stepped up to the plate and saved my life. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I am not blind to what is going on around me in the NHS. I may be hard of hearing but I want to say, I see and hear the staff around me and I observe the struggle to do more and more with a greater number of patients and less staff. <span class="Apple-converted-space"> </span>You have my full support in the various industrial actions taking place by the different groups. The press bang on about the pay deals wanted, but I know it’s not just about pay even though you deserve more. I know it’s also about the unsafe conditions you are asked to work in at times. I know what hurts me, hurts you. So on this special 75 anniversary I want to say thanks for all you’ve done and continue to do. I’m an expensive patient. If I was in a country with private healthcare I’d be dead or bankrupt. I worry so much that we seem to be allowing privatisation by the back door. Healthcare should always be free. Any attempt to get people to pay for certain things will always disadvantage the poor in greater numbers as they often have more health needs. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">My grandmother died when she was 23. My mum was only 2. My grandmother, Emily, lived in the East End. She died from a common old chest infection because she couldn’t afford to pay for medicines before the NHS came into being. I include her picture below as I don’t ever want to go back to a system where a young woman dies needlessly because of a lack of funds. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">They say you never truly know the value of something until it’s gone. I hope we never have to find that out. Instead I want to say to all the amazing doctors, nurses and allied healthcare professionals, the cleaners and ward kitchen staff, the admin workers and the volunteers, keep up the good work. You are an incredible bunch of people and deserve to be paid your weight in gold. I can’t quite manage that but I give you a big golden smile sent with much admiration and respect. Thank you</span></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-31190009644413557072023-06-15T21:56:00.001+01:002023-06-15T21:56:45.945+01:00Defending Kelly Holmes<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKuAkXaQuhTCsjNkSVUatSCHlPA3Zi5bbyuRC16dwenPV5D0lm8VytHybmpr3glvT1p-j-hMDiUJZpTp408F3XIljIF81hbpLIcb0cz-RimtkLkfZLfX9zP0faGfo7LdL6KtXegLeu97_gBXhcVi1aCZODtM9iZGPncd5CeNP_8G8xzWODSBbv1T_c/s4032/IMG_4870.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKuAkXaQuhTCsjNkSVUatSCHlPA3Zi5bbyuRC16dwenPV5D0lm8VytHybmpr3glvT1p-j-hMDiUJZpTp408F3XIljIF81hbpLIcb0cz-RimtkLkfZLfX9zP0faGfo7LdL6KtXegLeu97_gBXhcVi1aCZODtM9iZGPncd5CeNP_8G8xzWODSBbv1T_c/s320/IMG_4870.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv3C8EPPRXErwvTp3Mc7OmpO4IfDPLXjnvd1RD7q1gX4nVwCqcDr5vqfATrBXNSkvAAN2sWL3qQboHQTCGOTxtbHBlwOx94WyL6GGS-LFgfI4Zrbbxy1almBGPJmhNM3NZxvq86OheO7tTl-C_Y3uzemSeY_HtXTnHzwSRYaOcbaeRVTM07fSzE-b8/s314/IMG_5215.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="314" data-original-width="314" height="314" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv3C8EPPRXErwvTp3Mc7OmpO4IfDPLXjnvd1RD7q1gX4nVwCqcDr5vqfATrBXNSkvAAN2sWL3qQboHQTCGOTxtbHBlwOx94WyL6GGS-LFgfI4Zrbbxy1almBGPJmhNM3NZxvq86OheO7tTl-C_Y3uzemSeY_HtXTnHzwSRYaOcbaeRVTM07fSzE-b8/s1600/IMG_5215.jpeg" width="314" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSc3A0rZnLDn_6HU9F2gZscUindWgVdbyhbbe41ECF-tEYD49-1prDiXpvjzijkcslfoxuZI4Us0LnLIH792nkd8V3W7S4SbUOXq7X4GA8eS5tzF6It10BqvXuBfjb77EIKvwBcbQztjHkmRgfVH0mg0lQHCf98Q6h8iQPuGI_ZZFQigw6f3iADl1x/s4032/IMG_5226.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSc3A0rZnLDn_6HU9F2gZscUindWgVdbyhbbe41ECF-tEYD49-1prDiXpvjzijkcslfoxuZI4Us0LnLIH792nkd8V3W7S4SbUOXq7X4GA8eS5tzF6It10BqvXuBfjb77EIKvwBcbQztjHkmRgfVH0mg0lQHCf98Q6h8iQPuGI_ZZFQigw6f3iADl1x/s320/IMG_5226.jpeg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMVrlYqDXF12eABToc0a1vnNHPWO7ZpD6NB40Sji-z-HnOxTIm56KbZNLxGXHkzrFhW-SWYK6XSzwnma_iW9_jxQpefCsBhhd_9nV_chX2LqqQgLSnONyP9zGDB8j8YtuXuDKZPNMMe1wJfnxgOAAxKsyWJahBu8yfK7eE3O88DUlS8vD7dKe5agFO/s4032/IMG_5227.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMVrlYqDXF12eABToc0a1vnNHPWO7ZpD6NB40Sji-z-HnOxTIm56KbZNLxGXHkzrFhW-SWYK6XSzwnma_iW9_jxQpefCsBhhd_9nV_chX2LqqQgLSnONyP9zGDB8j8YtuXuDKZPNMMe1wJfnxgOAAxKsyWJahBu8yfK7eE3O88DUlS8vD7dKe5agFO/s320/IMG_5227.jpeg" width="240" /></a></div><br /> <span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 23px;">I write this blog with the sun streaming through the windows and creating interesting patterns through the blinds. It’s always good to take a moment and just appreciate the beauty around us. Sometimes we don’t look up enough. Some of the buildings above shops are amazing but if we don’t lift our gaze we don’t notice.</span><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 23px;"> </span><p></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">People who follow my story will know I had a rough couple of months recently following an unusual reaction to an Aclasta Infusion. I lay on my couch and wasn’t even able to get in my own bed. Obviously having been so still for around 8 weeks, it’s taken me a while to get my strength back. Undaunted by this I’ve continued to move forward doing a bit more as the days go by. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I was at Kings yesterday for my long day. I had my IVIG and then was seen by the lovely Victoria. She noticed how much better I seemed just from how I walked to her room. She asked me how my guts were and when was the last time I threw up. I said it was good and I’d only been sick once in the last month. I was still having reflux a couple of times a week at night that wakes me up chocking and during the day I regurgitate if I bend over having eaten. Apart from that all is good. She was pleased, as was I. Having some energy to enjoy the nice weather Is just great. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Victoria and I spoke too soon. I woke up in the middle of the night and did one of my really large vomits with lots of undigested food. This carried on all night and into the mid morning. I also had a tummy ache and needed to go to the loo frequently. On top of this my temperature was 37.9. One more point up and I would’ve had to contact the team and be seen. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Today I feel a bit washed out and I still have a jippy tummy! My temperature is slowly coming down. It’s so frustrating at times to take one step forward and two steps backwards. It’s impossible</span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">to be consistent with any commitments and I hate being unreliable. Sadly I’ve had to get used to it as there is nothing I can do about it except plod on. For example yesterday I was meant to get a haircut. Instead I had to send apologies. Imagine though that it was something more significant than a haircut, like one of the occasional funerals I take. It’s a very hard line to hold in tension. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">One of the treatments that’s started recently for me is phototherapy. This is to help with my very itchy skin. I now go to Kings twice a week for this specialist intervention. The treatment involves being in a big light box, like a sunbed but you stand in it. The first day it was for a whole 10 secs. It takes me about an hour each way to get to Kings. So a 2 hour drive for seconds of treatment. Today I was up to a whole 29 secs. I will keep you posted if it’s effective. It just shows what a problem it is that I’m prepared to do it. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I had an unpleasant and for me, an unusual experience recently. Someone who was an acquaintance and Facebook friend took exception to me posting about meeting Dame Kelly Holmes recently. She was upset at my acceptance of the honour system that harps back to the Empire. Politically I would agree with her. This is even more the case with the latest debacle of the people Johnson nominated. That said, I would never judge an individual. I have friends who have received honours and people who have declined or sent back. All points of view should be treated with respect. I was also accused of crying out for special treatment in supermarkets and with Irish Ferries and yet I could be with Kelly and others at the reopening of the ward I have been a patient on many times. This is despite the fact that I’m wearing a mask in all photos. When I go for a blood test or x-ray or attend another outpatient department I have to be alongside people that are not wearing masks. I don’t shout because that are making it unsafe for me. I accept that the world has moved on from the pandemic and left behind a lot of forgotten shielders. We have to navigate out way through gatherings now knowing that we can be at risk. I have to continue to be cautious but I also have to live. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I think it’s great that Kelly uses the experience of her mum’s blood cancer and death to come along and highlight the issues for us. If she was a selfish honour grabbing person she wouldn’t be doing this. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I have never blocked someone from all my social media platforms but sadly had to on this occasion. The person concerned couldn’t see that her spitefulness and judgment of me was uncalled for. I asked her why she thought she had the right to attack me and that as a Christian where was her theology of not judging others? To that I was told I was being patronising. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">It’s really sad that some people feel they have the right to attack others. It’s also a sad indictment of our society that it’s not ok to disagree with people without getting nasty and personal. My partner who had done nothing at all was also denigrated by this angry woman. I know it’s because she’s been hurt and the pain that’s trapped inside her bubbles to the surface sometimes. I tried to point out an alternative perspective but it was all falling on deaf ears and making the person more angry so I had to give up. All I can do is wish her well and hold her in the light. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">It reminds me of the story about the monk and the scorpion. A monk found a scorpion that had fallen into a rock pool and couldn’t get out. If it stayed there it would drown. The old monk tried to get the scorpion out but it kept stinging him. The young monk with him said “why are you doing that.? The scorpion will just carry on stinging you.” The wise monk said “it’s in the scorpions nature to sting. It’s in my nature to love. Why should I give up my nature of love and compassion just because I get stung?</span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">It’s so true. We mustn’t let these horrible things that come along uninvited to steer us away from our true self and stop us from doing the right thing. It’s also worth noting that there is such a thing as tough love and sometimes people need their bad behaviour calling out but in a kind way. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">My encouragement to you all is to keep sending love and light into the world. At this point in our shared humanity we need it more than ever. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size-adjust: none; font-size: 23px; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-9899523307651797172023-05-28T21:10:00.001+01:002023-05-28T21:10:36.603+01:00World Blood Cancer Day 23<p> <span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 23px;">A little blog to mark #worldbloodcancerday #thisisbloodcancer. The picture is me on my new swing in the garden. Behind me you can see a large red Kes. This was made for #makingbloodcancervisible. The art instillation was sponsored by @janssen and were displayed in Pater Noster Sq outside St Paul’s. The signs were built to the height of the person and on the flat side had a bio with each persons respective blood cancer and a bit about that person. It was a very effective and sobering experience to see all the names in the Square.</span><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 23px;"> </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">The years that my body has been dealing with blood cancer and the effects of treatment have taken there toll. You can see the impact all over me in the scars I carry. The amazing thing is I’m still here. That’s only possible because my sister proved to be a match as there were no obvious matches for me on the registers. Did you know…?</span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><ul class="ul1" style="-webkit-text-size-adjust: auto;"><li class="li1" style="font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: Menlo-Regular; font-size: 18px;"></span><span class="s1" style="font-family: UICTFontTextStyleBody;">Blood cancer is the fifth most common cancer in the UK.</span></li><li class="li1" style="font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: Menlo-Regular; font-size: 18px;"></span><span class="s1" style="font-family: UICTFontTextStyleBody;">Despite being the fifth most common cancer, blood cancer doesn’t have anything like the public profile of the other four common cancers. Unfortunately, our recent survey found that this low awareness means people affected by blood cancer are paying the price</span><span class="s3" style="font-family: UICTFontTextStyleItalicBody; font-style: italic;">.</span><span class="s1" style="font-family: UICTFontTextStyleBody;"> </span></li><li class="li1" style="font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: Menlo-Regular; font-size: 18px;"></span><span class="s1" style="font-family: UICTFontTextStyleBody;">Because blood cancer doesn’t have the same profile as the other five most common cancers, people are less likely to be diagnosed quickly.</span></li><li class="li1" style="font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: Menlo-Regular; font-size: 18px;"></span><span class="s1" style="font-family: UICTFontTextStyleBody;">Leukaemia, lymphoma and myeloma are ALL types of blood cancer</span></li><li class="li1" style="font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: Menlo-Regular; font-size: 18px;"></span><span class="s1" style="font-family: UICTFontTextStyleBody;">Currently, four out of ten UK patients looking for an unrelated blood stem cell donor will not find their lifesaving match</span></li><li class="li1" style="font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: Menlo-Regular; font-size: 18px;"></span><span class="s1" style="font-family: UICTFontTextStyleBody;">Every 27 seconds, someone somewhere in the world is diagnosed with blood cancer</span></li><li class="li1" style="font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: Menlo-Regular; font-size: 18px;"></span><span class="s1" style="font-family: UICTFontTextStyleBody;">Blood Cancer Is an Umbrella Term for Cancerous Growth in the Blood, Bone Marrow or Lymph Nodes That Affect Normal Blood Cell Production or Function</span></li></ul><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 9px 0px 8px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">two_individuals_hold_the_wbcd_sign.jpeg.webp</span></p><ul class="ul1" style="-webkit-text-size-adjust: auto;"><li class="li1" style="font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: Menlo-Regular; font-size: 18px;"></span><span class="s1" style="font-family: UICTFontTextStyleBody;">The official symbol for World Blood Cancer Day is the red ampersand sign — which shows solidarity with those affected by blood cancer</span></li><li class="li1" style="font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: Menlo-Regular; font-size: 18px;"></span><span class="s1" style="font-family: UICTFontTextStyleBody;">4 out of 10 people in need of a blood stem cell donation worldwide are still unable to find a matching donor.</span></li><li class="li1" style="font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: Menlo-Regular; font-size: 18px;"></span><span class="s1" style="font-family: UICTFontTextStyleBody;">Every year, over 70,000 people in need of a blood stem cell donation search globally for a matching donor outside of their family</span></li></ul><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">So what can you do to help?</span></p><ul class="ul2" style="-webkit-text-size-adjust: auto; list-style-type: "— ";"><li class="li1" style="font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Join one of the registers. It’s a simple mouth swab sent in the post. Anthony Nolan take people 18-30. DKMS take people 16-55. Donating if you are chosen is not hard either. It doesn’t involve and operation and is like an extended blood donation procedure as they take the stem cells from circulating blood. </span></li><li class="li1" style="font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Give blood. Many of us need blood, plasma and other blood products on a regular basis. We are only kept alive by the generosity of strangers. </span></li><li class="li1" style="font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Spread the word on social media so that more people know about blood cancer and what can be done to help. </span></li><li class="li1" style="font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Join MDS UK as a supporter or donate to the charity. It really is a small charity that makes a huge difference. </span></li></ul><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">It’s amazing that I’m still here after all these years. Many of the wonderful people I’ve met haven’t been so lucky. This world blood cancer Day make a difference. There can be no better feeling than helping another. </span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCUxmJLcSE2X3x_p2kqDfs0ZbJJXw1IM0TBDfTEBtxZZQOEUijSCcx5OqOx317cee8kef_bj1asdp_E-SCSyHHrqTLZUBfW0ZMcdXJ0AcAFnvTYtF-5eOsOjPhksNCMfRUKmQzeUPBUeLVp93UuByTXw8SoBK1l9O_E5Ly4FcFBpz0TX_YPbxkiCcv/s750/6954BAB9-F416-4CB9-BD99-86FB0A4B0A23.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="386" data-original-width="750" height="165" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCUxmJLcSE2X3x_p2kqDfs0ZbJJXw1IM0TBDfTEBtxZZQOEUijSCcx5OqOx317cee8kef_bj1asdp_E-SCSyHHrqTLZUBfW0ZMcdXJ0AcAFnvTYtF-5eOsOjPhksNCMfRUKmQzeUPBUeLVp93UuByTXw8SoBK1l9O_E5Ly4FcFBpz0TX_YPbxkiCcv/s320/6954BAB9-F416-4CB9-BD99-86FB0A4B0A23.jpeg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrD_qT2H1qc_ncCndd9J0ATvQEineoyn_PDZpgnHSRJtmbMI5uPd2op9D4AOaexXWASEYLhNzue84i6B6olIa5qLmG5BNO4QbeW29qtCAZuNmwTp6g9LqI-mto2_fECHRd2CGyo-LEarbP2ZBQ-psxIhvG43Z-H0Kqdt2AQfTuJ_7tW42WuqPjCTMA/s4032/550F9B16-4DA1-4BDE-BD3B-B54BCB98982F.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrD_qT2H1qc_ncCndd9J0ATvQEineoyn_PDZpgnHSRJtmbMI5uPd2op9D4AOaexXWASEYLhNzue84i6B6olIa5qLmG5BNO4QbeW29qtCAZuNmwTp6g9LqI-mto2_fECHRd2CGyo-LEarbP2ZBQ-psxIhvG43Z-H0Kqdt2AQfTuJ_7tW42WuqPjCTMA/s320/550F9B16-4DA1-4BDE-BD3B-B54BCB98982F.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgFargoq7jjC7NJJuz6cCXqJHcOA4IkesCWXqA1qs7qyhEEfI7ofSXkihfnh605eozKWYDbWy-_c-cv_T7QD6npOY6jlkI6tP0bHho2IaImB7_9txF0OaYs1dox8y3ycev3mqXfTUrA6BpO4PuJJBbwJNWT-u-MWc0ELgHb_9LJztwSJPahqOGz5jJ/s908/7B17B394-70C6-4CCD-8AC3-57E502FCD9BD.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="511" data-original-width="908" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgFargoq7jjC7NJJuz6cCXqJHcOA4IkesCWXqA1qs7qyhEEfI7ofSXkihfnh605eozKWYDbWy-_c-cv_T7QD6npOY6jlkI6tP0bHho2IaImB7_9txF0OaYs1dox8y3ycev3mqXfTUrA6BpO4PuJJBbwJNWT-u-MWc0ELgHb_9LJztwSJPahqOGz5jJ/s320/7B17B394-70C6-4CCD-8AC3-57E502FCD9BD.jpeg" width="320" /></a></div><br /><p></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-22143791134257483152023-05-02T19:33:00.001+01:002023-05-02T19:33:42.972+01:00Life’s been ganging up on me! <p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC-B5NFc1_QyYgWmgH1iIqHm2nn208CUVp6uv3t498CqTy7dKL1HgZnb8EA_czunC-U6-q6EXPEz-T-BhqGo6F7pHjOOK5yyz_N4QmnFiZnTGjNtKF_RVbJkO_3xjlcLzuoAmef7Qfsg4Fs3MqxD2Rznm4pbBplxFc6Hn16xp_ypeQeStQ6CA-oTnX/s253/2A63EB51-9C29-42CD-B82E-3D7030F71029.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="199" data-original-width="253" height="199" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC-B5NFc1_QyYgWmgH1iIqHm2nn208CUVp6uv3t498CqTy7dKL1HgZnb8EA_czunC-U6-q6EXPEz-T-BhqGo6F7pHjOOK5yyz_N4QmnFiZnTGjNtKF_RVbJkO_3xjlcLzuoAmef7Qfsg4Fs3MqxD2Rznm4pbBplxFc6Hn16xp_ypeQeStQ6CA-oTnX/s1600/2A63EB51-9C29-42CD-B82E-3D7030F71029.jpeg" width="253" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCPIE13kARo_t5ptyQW2G8f_D4xFBjPSWu5r9gU4eHnGUYzXrV3GV-qPlsOV-Ac_nEiBaIBkwSk27mxWoVZNwY4gTBG0vsAm19hamKX-m2RpCQbCwRhRqGSaeIbjW9ASYskubeT0NdLqP0CoiNUJ_mwLWVXQmt7ckXOci79JDc2WBi4wmAx1UNxaB8/s2048/3CFC37C9-34E4-4E12-A106-F093D110792E.jpeg" imageanchor="1" style="margin-left: 1em; 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margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimRyvR3s_5iLyRZngfexLHJYCVt1ksBgphv-sMPyAZ3A9YHMA_N3V991pl0pjgTSLwM8yESqOQjcxjjvAnLvM4TSNEZoAosZIH7_GOWHwaat0yvP_8G4BCbz9DgAuGMyOeLYXw_NGnZ4A4cifHLaWfxRvM1Z_HTWy7XTFCpn8NSoC2R--FuU-GJc2B/s320/03600868-527D-42CE-ACE2-7D4994100529.jpeg" width="240" /></a></div><br /> <p></p><p><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">It’s been a while since I’ve written a blog. This one will be meaty because so much has gone on. Sometimes it’s hard to see things for what they are when you’re in the middle of it all. Hopefully writing it all out will help me to continue to process life, the world, the universe and what you do when it seems life is ganging up on you and winning. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I have four beautiful grandchildren. The three boys are all over 6 foot. The youngest of these is 15. He thinks he is a man as he has a man’s body but those of us looking with the aid of perspective know that he is still a child. The following saga unravelled on a day where myself and my long suffering partner had just sneaked away for a few days break in my cousins granny annex in Nottingham. We were just relaxing and catching up when our daughter rang really very distressed. It turns out that this young grandson had been set up by a former girlfriend and he was beaten up by her brother and 3 of his mates. These 4 men jumped out of a car wearing balaclavas. They stamped on him and stole his very expensive trainers. They were disturbed by someone coming out of a nearby house. This poor woman called the ambulance and police. She thought my grandson had been killed as he was so still. She was very relieved when he moved his head. She took him into her house bleeding and crying. That woman is owed a huge debt of gratitude. I hate to think what would have happened without her intervention. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">When something like this goes off uninvited in the middle of a family, everyone is affected. It’s not just the person in the middle. The ripple effect means parents, grandparents, siblings, aunts, uncles, cousins, friends etc all become caught up in it. It takes reserves and resilience to work through it all. It’s important that the anger and fear have a voice but it’s also important to try and be objective and reasonable. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">As a family we have many resources we can tap into. We are fortunate in that respect. Despite all of that it seems there will be no criminal charges because the police didn’t gather enough evidence. This whole experience has made us realise how decimated the police service has become and how ineffective their communication systems are. One of the officers did a good job but despite all this, it seems the criminals will get away with it. In the meantime we, as a loving family, gather around each other and support each other. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">The next thing to come my way was that I had an MRI of my hips due to some increased pain. I hadn’t had the results of this when I had an appointment with the pain consultant. That appointment was to give me a trigger point injection into my sore and stiff neck. I’ve been complaining about my neck for ages. It’s often got knots in it that radiate down my shoulder blade and over my collar bone. At times it’s becoming a quality of life issue. While the Dr was preparing the injection she also checked the MRI as I mentioned I’d had it. She told me a small area of avascular necrosis had shown up in my right hip. This is not good news. It means that the steroids I’ve had to take over the years have caused a bit of my hip bone to die. It will eventually lead to a hip replacement. I was a bit shocked about this on one hand but not surprised on the other. I had my injection and went home to digest the news. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">It’s so important to give yourself time to process these things that come along unexpectedly. Sometimes just sitting with it and letting it wash over you is a way of becoming acquainted with the latest challenge. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">The following week I had an Aclasta Infusion. This is because I have osteoporosis, again caused by all the steroids I’ve had over the years. The osteoporosis consultant had delayed the infusion by a month as my calcium was a little low and she wanted to boost these levels as they help with the absorption of the infusion. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">The infusion is given via a drip once a year for 3 years. This was to be my 3rd dose. I’d not reacted to the other 2 so had no worries. The next night I woke up shivering and with a temperature. I threw up and had the most painful neck spasm I have ever encountered. I’m quite stoical and don’t show my pain externally. This was so excruciatingly painful that it made me yelp and cry out loud. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I contacted my wonderful haematology team. They got me in and prescribed a short course of diazepam. This wasn’t quite strong enough. Then my wonderful haematologist and rheumatologist made a joint appointment to see me. This coincided with the junior doctors industrial action. I fully support all the medics in their protests. I can see with my own eyes how badly affected the NHS is by serial underfunding. It’s not safe at times now on ordinary days. Something needs to change. The consultants are often 100% behind their colleagues and they run the wards in their absence. Despite all that going on these two wonderful women and a CNS gave me their time and wisdom in looking into what was potentially going on. I was prescribed a different medication and once that was at the right level it began to have a benefit to me. They also organised an urgent MRI of my neck. How amazing is that! </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">The MRI showed ongoing wear and tear changes. Also the previously seen neck fraction and upper back fracture. There was also a rib fracture too. There is nerve compression due to the collapsing vertebrae as well as a shift apart creating a bit of a step on the vertebrae. It’s no wonder it bloody hurts. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">It took me 5 weeks of lying propped on my couch before I could try my own bed again. It was the only was I could get comfy. My poor long suffering partner had never seen me like it. I never just lay still. I awkward try and do something even when I’m very weak. Once, when I had pneumonia it took me 45mins to make my bed. I was determined to do it. This neck pain was off the scale. I couldn’t concentrate. I was still throwing up. I couldn’t drive and my infection and inflammation markers which should be below 5 had jumped to 170. I felt bloody rubbish. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I was given ongoing pain meds and regular appointments to keep an eye on me. Victoria, the haematology consultant was very close to admitting me. My weight was still not good and I was just getting frailer and weaker. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I normally do all the driving as I like to and my partner likes to be driven. It was hard to have to rely on her and see her getting stressed at some of the traffic conditions as we made our way through London. She also had to listen to me wincing every time we hit a pot hole or a speed bump. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">On one of these check up days we got in the car and Maggie said to me “where’s your bike?” Regular followers of mine will know I recently got my 125cc scooter back on the road. I’d only ridden it a few times when something made me think again. I went to go in the bathroom and caught my arm on the handle. This caused my fragile skin to rip and flap backwards. I knew it would be foolish to keep riding the bike with skin that rips so easily and bones that could fracture with very low force. I had decided I would sell the bike and treat myself to a new big tele. At least that’s something I can still do. It was hard to make that decision. <span class="Apple-converted-space"> </span>I first started riding bikes when I was a kid in the woods. I got my first 50cc when I was 17. As I improved and had a bit more money so I got bigger and bigger bikes. Going from 50cc to 125cc then 250cc before halting at my SV650cc. This was the largest bike I could ride with my short little legs. It was possible because it was one of the few bikes you could lower the seat on. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I’ve included pictures of my various bikes so you can see what I’m talking about. The bike for me was a symbol of my freedom. I could go anywhere and I wasn’t afraid to drive round Hyde Park Corner of take off through the New Forest. I felt as one with the bike and fluidly moved through the air. I’ve suffered from nausea for many years. When I am on the bike and have the air blowing through me, it takes the nausea away. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I enjoyed turning up for services in churches that didn’t know me or at the crem and people would do a double take at this small woman on a big bike. You could see the nudges and the smiles when I undid my leather jacket and they could see my clerical shirt. I’ve always defied being put neatly in a box. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">So you can see that me deciding to give up the bike was a big thing. I had intended to go for one last ride to say good bye but some thieving scumbags took that away from me. To add injury to insult they also scratched my car getting the bike around it. I was gutted and really upset but had to continue to Kings for my appointment. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Now a month on I think that maybe whoever took it did me a favour. At least I won’t have to try and sell it privately. I’ve also decided I will not be denied my last ride and will find a way to do this even if I just have to hire a bike for the day. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">A few days later Maggie and I were heading off to Kings again and this time the car wasn’t happy. None of the keys worked. I knew it wasn’t the key fobs as I’d changed the batteries recently. We had to make alternative arrangements and I would ring the RAC when I got home. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">The RAC told me they would be with me around 9pm. The length of the wait was due to me being at home and less of a priority. Sadly the fella didn’t turn up till midnight. The 12v battery was dead. The car is only 4 years old. This shouldn’t happen. It was being driven less frequently because of me still being propped up on the sofa and unable to do much. The mechanic jump stated it then poor old Maggie had to take it for a 45 minute run. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Sometimes you really feel the weight of these problems and it seems that life is not being very kind. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">One of the hardest things that happened was my lovely friend Fiona died after her transplant failed. She and I had been MDS pals for 23 years. We were both sporty, women and young. Most people diagnosed with MDS tend to be older men. We didn’t fit the bill so we stuck together. For a while we were joined by another woman called Sharon. All 3 of us had different types of MDS and were committed to setting up a patient support group. MDS UK was the fruit of our labour. Once it was up and running I bowed out as I was raising my family and studying theology as well as working full time. Even just writing that now makes me feel tired. It almost seems incredulous to me that I had that energy and drive at that point in my life. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Sharon was the first of us to need a transplant. Sadly there were no donor matches. Despite a brave campaign by her family, she died before a donor could be found. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I had my transplant in Oct 2016. As regular readers will know this how not been plain sailing. The cancer may be in remission but the effects of treatment have ravished my body and I’m now very frail compared to how I used to be. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Fiona lasted the longest before needing her transplant 2 years ago. I was desperate to attend Fiona’s funeral and honour my long term friend and MDS buddy. Problem was I was having enough trouble getting myself together to go to Kings. There was no way I could have safely got myself to Birmingham. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I was so upset by all of this that I couldn’t even bring myself to watch the live stream of the funeral. I’m not a big why me type of person because I do think why not me. Thinking about Sharon and Fiona and being the last one still around makes me wonder why am I still here? What is there still for me to accomplish. These are all heavy questions that show a spirit in angst. Once again all I could do was sit in the pain of it and wait for things to improve. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">A few days later I had the strength to watch the funeral recording and see the love that went into sending my friend back to God or The Universe whatever belief works for you. Her loving husband and family did her proud. Thank you Fiona for you companionship over the years I’m proud to say you were a friend and I know you will reap the rewards of a life well lived. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Another important event I missed was as my lovely friend Michelle’s inquest into her tragic death. I wanted to be there for her family as I know how hard these things are. Instead I was propped on the couch and all I could do was send messages of support. It’s so frustrating when you can’t rely on your body and you miss out on so much. I was always a very reliable person. If I said I was going to do something, I would do it. Sadly that’s not true anymore. I’ve had to learn to say I’d love to do that but may be unreliable due to long term illness. It’s a real frustration for me but there’s nothing I can do about it apart from own it. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">After the best part of being on my couch for 6 weeks I started to turn a corner. I was wincing getting up rather than yelping. I always wake up in pain. If I didn’t, I would think I was dead! Lol. I can manage the pain being a dull roar and that’s where I’m back to. I must confess though I’m slightly anxious that it will happen again I told the consultant that if I knew that walking over hot coals would fix the problem, I would do it. I was desperate. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">The last couple of months have been tough on me and those closest to me. I always hold on to the belief that tough times don’t last but tough people do. Sometimes all you can do is grit your teeth and know that “this too shall pass” </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I wouldn’t say I’m totally out of the woods yet but I’m able to do a few things again. Last week I was one of the patient reps at the opening of the newly refurbished haematology ward that I’ve been a patient on. Dame Kelly Holmes was the invited guest. She spoke movingly about her mum who had blood cancer. She used to come to Kings for her appointments. It was a lovely event and it was great to see the thought and care that had gone into the refurbishment. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I’m at Kings again today. This time I’ve driven myself. Things are gradually getting back to what my normal is. My encouragement to all of you is just be brave enough to sit in the pain for a while. Sometimes that’s all you need to do and it will pass. “I love the light for it lets me see the way and I love the dark because it lets me see the stars.”</span></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-289875585295921952023-02-28T23:01:00.001+00:002023-02-28T23:01:50.736+00:00Rare Diseases Day 2023<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKwMpX6jOrfrvwU4F8nrVH7DBN0BwB2NJ1ONlAlfzF-nitNwHVIokfehFAg8CwDHFTQ9b2P9iMSvHS5roqdezpwpbD4XR1Zxl7jm_JHO6ZDNB3c2F-A7_NbfmcSJAu7vYm3-Xw82iedw7oUlV1-Y84CUXSNTqH_xzT4MeFM-_UEdaeVu5qm5cHAWmn/s2309/9B675595-E828-4E3A-B3E2-A028E9844699.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1298" data-original-width="2309" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKwMpX6jOrfrvwU4F8nrVH7DBN0BwB2NJ1ONlAlfzF-nitNwHVIokfehFAg8CwDHFTQ9b2P9iMSvHS5roqdezpwpbD4XR1Zxl7jm_JHO6ZDNB3c2F-A7_NbfmcSJAu7vYm3-Xw82iedw7oUlV1-Y84CUXSNTqH_xzT4MeFM-_UEdaeVu5qm5cHAWmn/s320/9B675595-E828-4E3A-B3E2-A028E9844699.jpeg" width="320" /></a></div><br /><div class="separator" style="clear: both; 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margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyl2WCBm6GO7OK-nLjrfyEcFAgo9wWH0CuCbk-_BzlMWbAfZCnHP5PKVFb8Rm9xVZ0OTWc7JMAWIB4NSN9e01vSZ42bcvwyxJKxQm1xe8PfQr645fMBrRkJO4MWA4ClXPGJbnC2dMHsWLIHkrSbx-lLGxDYO8wrBycBIdB_QXggZAYv8LCpau1aK33/s320/CAA5C960-4702-4E32-94AA-C133A0F48105.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-fP4T2btaVcSQlCCFsRaoS_9QKRQWts1OufhySL7ipJLBoq1QBTfsTr9ypKpW84AsfGMsfmMrdhG0Ab1e2ukg7zi8XxrOgMQhVP2dlsofDOonaqfJhHZ3ff467Cf7-_X_ASCoZYTbnvmBIY5-zGFlESDP1TEssyIF4EwPpQu7N4UYrWPsUwr0USjn/s604/E7B2025B-9CA0-4D91-A256-4485FD0F8513.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="580" data-original-width="604" height="307" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-fP4T2btaVcSQlCCFsRaoS_9QKRQWts1OufhySL7ipJLBoq1QBTfsTr9ypKpW84AsfGMsfmMrdhG0Ab1e2ukg7zi8XxrOgMQhVP2dlsofDOonaqfJhHZ3ff467Cf7-_X_ASCoZYTbnvmBIY5-zGFlESDP1TEssyIF4EwPpQu7N4UYrWPsUwr0USjn/s320/E7B2025B-9CA0-4D91-A256-4485FD0F8513.png" width="320" /></a></div><br /> Today is Rare Diseases Day. I’m going to try and paint a colourful picture of what life is like when you are diagnosed with a rare disease. <p></p><p><br /></p><p>I was in my early 30s when diagnosed with the rare blood cancer MDS (Myelo Dysplastic Syndrome) This is an illness that affects more men than women and also occurs more in people 60 plus. I was a young fit football playing hard working manager of a women’s centre. I did not fit the typical picture. </p><p><br /></p><p>Many of us now understand the economy of scale when it comes to health now. The pandemic has created a mass of data that will be analysed for years to come. Because so many people have had covid all medics are aware of it and have treated it. They recognise it and they now go to techniques that they know work for people. </p><p><br /></p><p>Imagine now that you have an illness where a GP might see a case once every 15 years. They are not going to be so familiar with what to look for or how to treat it. For a few years prior to my MDS diagnosis I was prodded and poked by many great and good medics who just scratched their heads at me. Then within this rare diagnosis I’m also an anomaly. That has never left me. It means that often, no one knows why I’m the way I am. Many times I have a test and it comes back not quite right. For example I’ve been having treatment for osteoporosis caused by being on steroids for so long. I’ve had stress fractures caused by the illness in my back and neck. Despite gold standard treatment over the last few years to treat the osteoporosis, the illness has progressively got worse. The doctor looked at the results and said “this is highly unusual” I just sighed. She then organised some extra blood tests. Surprise surprise these have shown something unusual. </p><p><br /></p><p>I’ve had to learn to live in that space where you can’t know everything that’s wrong with you. You just have to live with it and trust that the right thing will become obvious at some point. I also have faith in the consultants charged with my treatment. </p><p><br /></p><p>Show your colours is the theme of this years Rare Diseases Day. I’m blessed to live in a time and a country that despite the rarity have kept me alive and functioning for nearly 23 years. My colours get a bit dimmed at times when I feel rough and don’t have an answer to why but I refuse to let the darkness take over me. Instead I find myself always looking for the light. I’ve learned the more light you let in the brighter your world becomes. #rarediseasesday</p><p><br /></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-26116997039756493472023-02-04T20:34:00.001+00:002023-02-04T20:34:28.935+00:00World cancer Day 2023<p> </p><p><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">As it’s World Cancer Day I thought I should do a short blog. In this blog I shall take you through my appointment with a new consultant which created much hilarity for me and my family when I regaled them with my tale. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">This week I had my first appointment in the Osteoporosis Clinic. I met a really lovely consultant who was genuinely interested in looking at the whole of me not just her little specialism. She explained that each of my Dexa bone density scans have got progressively worse despite being 2/3 of the way through treatment. She said this was somewhat unusual. The plan is to have the last treatment to complete the course and give it time to work. Then repeat the scan and depending on the results move to the next level medicines. In the meantime she wanted me to have a blood test and also to do a urine sample. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">After saying goodbye to the doctor I trotted off to the loo. Now for those of you who have never given a sample before, the pot you get to pee in is a small tube. Women are not able to as easily aim as men. I managed to pee all over my hand. Sigh! As I was trying, rather awkwardly because of my wet hand, to sort myself out, I managed to knock the sample and spill wee all down my leg. I managed to only save a dribble in the tube. Bigger sigh! The nurse told me there wasn’t enough and I should come back another day. It takes me an hour each way to get to Kings so that’s not my first choice. I had to get a blood test anyway. Next I head off downstairs and pick up a bottle of water so that I can pee again. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">The blood test was completed very quickly. I waited a little while and then I headed to the loo again. Now though, I’m in the public loos and not the ones upstairs in outpatients. It means I have to keep my coat and rucksack on as I don’t want them on the floor. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">One of the problems caused by all the treatment I’ve had is that I suffer from urge incontinence. When you’ve gotta go you’ve gotta go and the closer to the loo you get the stronger the urge is. Now I have to quickly get my trousers down, next my long johns and then undergarments. Then I need to raise my thermal top, tee shirt, hoodie and coat and finally need to position this tiny bloody tube and try and look to make sure the wee is going in the tube all the while fighting off the urge to panic that you will start weeing before getting clothes out the way. As you tilt your head to look if all is ok, the final insult is that your varifocals move off your nose and you are now as blind as a bat. Bigger sigh! </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Despite being a great multitasker I struggled with getting this sample. I managed to only get a couple of mls in the tube but I had a very warm and well washed hand! Lol</span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I could really see the funny side and had my partner in stitches as I was explaining my predicament. Having a sense of humour and being able to laugh at yourself is invaluable and a great way of keeping one’s sanity. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Having serious osteoporosis at my age is a bit of a blow but is not unexpected. I’ve taking steroids since 2014. Steroids ravish your body in so many ways. Alongside the osteoporosis I also have a cataract and adrenal insufficiency all curtesy of prednisalone. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">This World Cancer Day I want to raise awareness of the late effects of cancer and its treatments. Many of us maybe clear of cancer but have a whole host of issues due to all the toxic medicines we’ve taken. We may look healthy on the outside but that’s just a facade protecting a very fragile body. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Today I stand in solidarity with all cancer patients and their families but I also share a smile and a giggle at the amusing moments this journey brings me. </span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWP7NH-9J5ZCW2FrqBvMWME8FZXY2pSpkzO2GOOZWJuh_qdsn59uK_c1EcR5SIe0OMhlzxE5FtqSUclb7mxDiDT-UwnJT2kAhCBpSjWWQmOL2QcTPNix5X2EQYbMhREt0WSFRlbNmRPaM89j7NMPrFeJi1ZkTazG7EmOLPwgGe1noq2MkJJkFeaPJC/s4032/B5D3004B-0D7D-409E-AD90-EF56802B4CB8.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWP7NH-9J5ZCW2FrqBvMWME8FZXY2pSpkzO2GOOZWJuh_qdsn59uK_c1EcR5SIe0OMhlzxE5FtqSUclb7mxDiDT-UwnJT2kAhCBpSjWWQmOL2QcTPNix5X2EQYbMhREt0WSFRlbNmRPaM89j7NMPrFeJi1ZkTazG7EmOLPwgGe1noq2MkJJkFeaPJC/s320/B5D3004B-0D7D-409E-AD90-EF56802B4CB8.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEbDV0yAUYMe7HOvTyI5rTfpp171OyruOfZWF4gh9re1qsJhOPGpMHY_uMcV6DjBDJq2_YfLMkJZj_EAhp3kRSVXZ6rWr-Q2A_4zww12EByFN5wiG77RMU9ZRThtZAs2z6N9H_wFIK0UBp1GV5-ocYDWXZJTnPBUCDH6xpiS4n8ocpoRdLpb940Pgl/s2048/416B970E-9F8A-461A-A1CC-8A766E113899.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="946" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEbDV0yAUYMe7HOvTyI5rTfpp171OyruOfZWF4gh9re1qsJhOPGpMHY_uMcV6DjBDJq2_YfLMkJZj_EAhp3kRSVXZ6rWr-Q2A_4zww12EByFN5wiG77RMU9ZRThtZAs2z6N9H_wFIK0UBp1GV5-ocYDWXZJTnPBUCDH6xpiS4n8ocpoRdLpb940Pgl/s320/416B970E-9F8A-461A-A1CC-8A766E113899.jpeg" width="148" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijy_EWiDm9EWiFsspLvRApJxrKXln9cgcv_gXzAllPas6UmRJ3B2XPP29Q_jKKO_joBet1TMj4vLEdy4JSLVL_27VeheMWTnhnFSNbBnS_gekT0xQW1PDtC9JVmaqajm8cOXz7ka5N5lL1s3w_vtJH1IJ1s8CiWf5b1FBOJCW1YLzEhvEGgaRKW2gd/s640/11D4ADF7-D0C4-4477-90BC-A20C62D89305.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="469" data-original-width="640" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijy_EWiDm9EWiFsspLvRApJxrKXln9cgcv_gXzAllPas6UmRJ3B2XPP29Q_jKKO_joBet1TMj4vLEdy4JSLVL_27VeheMWTnhnFSNbBnS_gekT0xQW1PDtC9JVmaqajm8cOXz7ka5N5lL1s3w_vtJH1IJ1s8CiWf5b1FBOJCW1YLzEhvEGgaRKW2gd/s320/11D4ADF7-D0C4-4477-90BC-A20C62D89305.jpeg" width="320" /></a></div><br /><p></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-36893654733293849822023-01-22T21:18:00.002+00:002023-01-22T21:18:37.598+00:00Missing Neighbours! <p> </p><p><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1vkN5pypXQEMKo2jPhaIwj3WeQGpKG-usBaBHgnIJbadqEP5bqd2j2zCP5Ity639kjhtCSYneohvLyq9RGq7w4jMdhkzZEdn4ktN9VbGHmqRcX4nezQqf9mmOhtOSIpa3fsOA1hJbz6ETWDhCL9Yy0fpNoLlL2NXXIotK4Ay41oPocHccv_eoZY_L/s542/EB91CA15-A2D1-4288-84B1-438C35825CC3.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="542" data-original-width="408" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1vkN5pypXQEMKo2jPhaIwj3WeQGpKG-usBaBHgnIJbadqEP5bqd2j2zCP5Ity639kjhtCSYneohvLyq9RGq7w4jMdhkzZEdn4ktN9VbGHmqRcX4nezQqf9mmOhtOSIpa3fsOA1hJbz6ETWDhCL9Yy0fpNoLlL2NXXIotK4Ay41oPocHccv_eoZY_L/s320/EB91CA15-A2D1-4288-84B1-438C35825CC3.jpeg" width="241" /></a></div><br /><div class="separator" style="clear: both; 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text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI54oIJ1MoEeDNibjkjQmy5bzDEzXEUyTZH9QDP7y8ofOcpx2RdZbTybVe72SYXHMWE2OfLAut_T2dHK3VT7rHzCmo99FOmJqTy8KsTee4c-al6Y9Wz6jDdNw-1zonFzkhuAW9HGsibEvrDg3-q7aAIriyWbIW7Xw_7BMyicODZ8C1CdmxbcRkGthO/s2048/0B0B5DFA-9596-4A24-89CF-8F405B3DD6A3.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI54oIJ1MoEeDNibjkjQmy5bzDEzXEUyTZH9QDP7y8ofOcpx2RdZbTybVe72SYXHMWE2OfLAut_T2dHK3VT7rHzCmo99FOmJqTy8KsTee4c-al6Y9Wz6jDdNw-1zonFzkhuAW9HGsibEvrDg3-q7aAIriyWbIW7Xw_7BMyicODZ8C1CdmxbcRkGthO/s320/0B0B5DFA-9596-4A24-89CF-8F405B3DD6A3.jpeg" width="320" /></a></div><br />Having spent so much time shielding over the last 3 years, I’ve had the space to be even more of a reflective practitioner. I’ve recently been thinking about the little ways we comfort ourself using psychological techniques without really realising it. <p></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">When the soap opera Neighbours started, I would watch as I was young at the time. Also my lovely “chosen mum” Marlene was <span class="Apple-converted-space"> </span>Australian and it made me feel closer to her. I loved the unusual sounds of the birds in the garden or outside shots. I also picked up lots of Aussie turns of phrases such as:</span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">You’ve got Buckley’s or Buckley’s chance, meaning you’ve got no chance</span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">You little ripper</span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Crack open a tinny</span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Put another snag (sausage) on the barbie </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Thong for flip flops </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Bludger meaning lazy</span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Cobber meaning friend. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I continued to watch neighbours as the years went by. I went with Marlene to Australia when she went back to do a book launch. I went back several years later when she retired back to the place of her birth. She loved showing me her country. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">6 years ago Marlene became seriously ill and was diagnosed with 4 brain tumours. She died within 2 months of becoming ill. I had just come out of ICU and wasn’t able to travel to see her. I was heartbroken at not being able to say goodbye. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">The following year I had my transplant. It was something she always wanted for me as it was a chance to get well and reclaim my life. I felt her love and encouragement but missed her so much. I’ve always been a street urchin and a really stubbornly independent feisty imp. She was the only person I ever let fuss. She would put a flannel on my head if I had a temperature or a headache. She’d tuck me into bed. She would cajole me to eat and drink. I know Maggie’s life with me was made easier by Marlene teaching me how to give and receive love. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Neighbours continued to provide a small link for me to Marlene despite her untimely death. When it was announced that Neighbours would cease production in July, I was so upset. Weird how these small things have an impact. I just haven’t been able to bring myself to watch the last 40 episodes that I have recorded. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I’ve been feeling a bit rough the last few weeks. As often happens after I’ve had a serious infection, my counts have significantly dropped and the team decided to put me through another bone marrow biopsy. These are awful and a necessary evil if you are a haematology patient. The procedure requires you to lay on your side and bring your knees up. Local anaesthetic is injected into the skin and the needle is pushed in further and further until it hits the bone at the back of your hip. That needle is then removed and a very fine needle is pushed into the centre of the bone marrow. Once located properly a syringe is attached to the needle and the liquid part is taken out. Once they have enough for 4 vials and several slides, they then take that needle out and insert what feels like a cork screw. This is twisted in to the solid part of the marrow and is the separate slice you see. That bit is the worst part of the procedure. After this pressure is applied to control any leakage and then a pressure dressing applied and you have to keep it dry for a couple of days. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I like to hold my phone while having this horrible procedure done. It’s a way of being connected to all those who I know are thinking of me. Strangely my phones screen save came up with a lovely shot of me and Marlene. It was like she wanted me to know she was with me. Also in the middle of the procedure, Maggie called. I couldn’t answer but I did text her back. The nurse doctor and Maggie were impressed that while having something so horrible done, I could still interact with the world. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">So coming back full circle, I spent a day in bed this week. That’s highly unusual for me. I had heard the news that Neighbours was going to come back on our screens after new sponsors were found. I decided that as I’d been thinking so much about Marlene, I should watch the last episodes of Neighbours that I had recorded. Hopefully I can drag it out long enough to join up with the new edition of Neighbours when it is resurrected later in the year. Like I say, it’s strange the things we do to comfort ourselves. I’m just really glad that I can continue to feel connected to my lovely chosen mum. One day I hope to be well enough to go back to Oz and pay my respects to Marlene by visiting where she was laid to rest. Until then I have my memories and I also have Neighbours. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I wrote this a month ago but didn’t post as I felt rotten and wanted things to settle. I needed blood transfusions and antibiotics to get me over my serious blip. My neutrophils were at 0. My HB only 73. I had no puff and everything was hard work. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I’m happy to say things are better. My counts are sorting themself out. The team are happy it’s my inability to deal with infection rather than the transplant failing. It’s weird to think that my transplant is deemed as successful. There are no cancer cells in my blood now. Yet despite this, my quality of life is much worse and the physical disabilities that I’m living with make life a challenge at times. I know that I’m one of the lucky ones. I have friends who aren’t or haven’t been so lucky. <span class="Apple-converted-space"> </span>My heart goes out to them. I also extend my love and prayers to all who for one reason or another have struggled with regaining their health post transplant. Thank good there are a few success stories too. These people help to keep the balance. One day I hope to join their ranks but for now I just grit my teeth and plod on. </span></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-8314010721207891172022-10-22T12:14:00.000+01:002022-10-22T12:14:16.248+01:00Body Story<p><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 38px; font-weight: bold;"></span></p><div class="separator" style="clear: both; text-align: center;"><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 38px; font-weight: bold;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1HxDyUO2OnYJEuRXigp15iSnq-0YADDmLg_9T9fPXt9N2IpTSU2jIIsBO2NR_3_-20mtyxd1-cPeaiCJmXM1rHuj_PDN04SLcWtm10ZIGvG6UUHHME_N3qB6HR87DoHGU_wnBpPOu-SM/s2048/0E90C0BB-AAAF-4169-87E0-F81FFF5D5AC8.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1HxDyUO2OnYJEuRXigp15iSnq-0YADDmLg_9T9fPXt9N2IpTSU2jIIsBO2NR_3_-20mtyxd1-cPeaiCJmXM1rHuj_PDN04SLcWtm10ZIGvG6UUHHME_N3qB6HR87DoHGU_wnBpPOu-SM/s320/0E90C0BB-AAAF-4169-87E0-F81FFF5D5AC8.jpeg" width="240" /></a></span></div><span style="-webkit-text-size-adjust: auto; 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margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1536" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhW5m84qcj0R61KV-frg8rRPs2nLdNdjK5xkUz42zj1O9TjWb0wSdezD1zOX79pKX9Z5TMkisCapq5ptCXktgT33VX08nOxiO56DNN-wyogqgYeVvB6U5Ht74PeneZnc_AUB-cSbK4Sm7enqxVhWWIEAQFzSK3K2uSvbTwA5TCvem5T4Qvs0NFaVJ-7/s320/998B5EBE-C617-48C5-B019-A92FD183D1EC.jpeg" width="240" /></a></div><br />Body story</span><p></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Let go of the idea of perfection — you are not perfect, you are real. Let yourself be flawed, and allow yourself to make mistakes. Recognize that you’re not always going to have it all together. Don’t apologize for being broken — every time you break you become a little more alive. Every crack tells you a little more about yourself — your strength, your courage, your tenacity — what you’re made of. Do not hide these pieces from the world, they are a part of who you are. You see, the most beautiful people are beautifully broken. Their hearts are heavy but they love the deepest. They have seen the dark but they appreciate everything that shines. They’re compassionate, understanding, and empathetic. Beautiful hearts just don’t happen — and you my friend are going to show the world just how beautiful you are.. ~ Bryan Anthonys</span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I came across the above recently and thought it was a really good way to express what it’s like learning to live alongside a cancer diagnosis. Living with cancer is only part of the story though. For me I’ve had to learn to live life differently because of the impact of treatment on me too. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Today marks 6 years since I had my life saving stem cell transplant. Before I had my transplant I was working full time. My health was slowly deteriorating and I would end up in hospital at least once a year with a bout of neutropenic sepsis. I could and did become very sick very quickly. After being treated I would slowly claw my way back and return to work. As time went on the bouts were becoming more frequent and it was taking me longer to bounce back. My team decided it was best to have the transplant as one day I would not bounce back. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">A transplant is no walk in the park. It takes a whole morning or afternoon to go through the consent for the procedure. It’s a sobering process as you hear one thing after another of what could go wrong and ultimately cause life changing disabilities or death. The people offered a transplant are those who will likely die if there’s no intervention, so really the choice is to gamble on the transplant to regain you life before cancer or to take your chances and slowly decline until an infection sees you off. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Once a transplant is decided you need to have a load of tests to make sure you are well enough to survive the process. <span class="Apple-converted-space"> </span>At the same time they are taking samples to see if there is a suitable match on the registers. For me I had an unusual haplo group so didn’t have a 100% match. My lovely sister Gail came forward to be tested. We were warned there is only a 25% chance of a match with a full sibling. As Gail is my only full sibling, we were both on tenterhooks waiting for the result. Luck was on our side as Gail proved to be a match. We were both ecstatic about the news as were our partners and family and friends. The picture of us on the bike was taken when we went out for a celebratory meal the day we got the news. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I went into hospital on 10 October 2016 and had my first bag of chemo on the 11th which was my 25th anniversary with Maggie. Maggie and Gail came every day. They were an amazing support and tower of strength for me and each other. We were lucky in how it turned out as Gail had recently had spinal surgery and so was off work while recovering from that. It meant Gail and Maggie could see each other and travel together during this arduous and intense time. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">As I received more and more chemo every day I became weaker and felt grim. Sometimes in situations like that when you feel absolutely dreadful all you can do is just breathe and get through it moment by moment. Day by day is too long, sometimes it’s just hour by hour or even minute by minute. Maggie, Gail and I settled into a routine. We’d watch the quiz shows or listen to music every afternoon. They’d help me if I hadn’t had the strength to get showered. Despite the intensity of it all, it was a time of real <span class="Apple-converted-space"> </span>closeness and bonding between us . I still cherish those memories. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I also had a tower of support coming into me every day via social media from family and friends. People were so creative in their outreach to me. I was really blessed by the outpouring of love and positivity that came my way. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Recovering from the transplant hasn’t been a walk in the park. I ballooned to 72kgs as a result of being on high dose steroids. None of my clothes fitted me any more. I developed GvHD (graft verses hosts disease) My skin was painfully itchy, my muscles and joints became stiff and sore. My breathing was affected. I had serious hearing loss as a result of some of the powerful drugs. My liver wasn’t happy and my mouth and eyes were very sore and dry. I also found absorbing food a challenge and had to have a NG tube and eventually a PEG. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Now on my 6th rebirthday, I can say I’ve learned to live with lots of these issues. Some have improved but in general I would say my body doesn’t function well. I may have a crap body but I have a six pack spirit. At one point when things were so tough my consultant asked me if it was worth going through the transplant. At that time I said to her no because I’d felt awful for years and was dragging myself through life. Today I’m happy to say I don’t feel that anymore. My fantastic team at Kings have given me the time to see my daughter raised and settled. It gave me time to be alongside my four delightful grandchildren. It gave me extra years with my long suffering family and friends. These days I relate to the World differently. I let go of the life I thought I’d have and I now embrace the one I do have. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">You never know what medical breakthroughs with come along. I do my best to keep myself active and interested in the world. My brain still works even if I can’t physically work. I just hope that one day there will be an intervention that gives me a better quality of life and who knows it maybe some limited form of work too. I choose to continue to live in hope. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">For now I celebrate the small victories. I’ve been shielding for nearly 3 years due to Covid. I’m fortunate to have a family home in Ireland in the Kerry mountains. Not to be in that lovely house amongst the spectacular mountains and beautiful beaches has been hard. I’m not one to sit back on my laurels. I contacted the ferry companies to see if they could help in keeping me safe and away from people on the crossing. The disability team were fantastic. They told me what would be the best ship to book. They said they would arrange for us to be boarded early and kept away from the crowds. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Maggie and I were slightly anxious at attempting this. We boarded at Holyhead. The wonderful staff were true to their word. I was boarded first and taken in the lift before others came along. We had booked club class as that is often less busy. A really friendly woman welcomed us from the lift and said that Irish Ferries would like to offer me a complimentary cabin. They felt this would be safer for me. I was blown away by their thoughtfulness and kindness. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">As we were arriving and before people had been asked to start moving to car decks and to foot passenger exits, we were escorted down to the car deck. No one was around. It was strange being on such a quiet and empty car deck. The friendly and helpful young man talked to us from a social distance until it was time to get in the car. I can’t tell you how relieved and impressed Maggie and I were with Irish Ferries. They really deserve some love and respect. We are living through challenging times. Customer service in many organisations is at an all time low. People can be quick to complain. I think it’s also important to be quick to compliment too. Thank you from the bottom of my heart to Irish Ferries who made my soul smile and physically and emotionally gave me a real boast. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Being back in my “happy place” has been a real tonic. It’s been great to spend some time with my sister Sandra and her husband Terry. They came out and joined us for a few days. They coped very well with the need to have windows open and wear masks. It’s been lovely to see and catch up with some of our Irish family and friends too. It’s been a joy to be back in such majestic scenery. It just makes you breathe easier. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">October 25th is World MDS Awareness Day. What MDS UK and other blood cancer charities are doing this year is to raise the issue about how some people are not told they have a form of cancer. MDS can be low or high risk. The various aspects of your blood work and bone marrow results indicate what’s the best treatment for you. Many years ago MDS was called a blood disorder, then it was called pre- leukaemia. After this it was known as bone marrow failure until recent times when it’s defined as a blood cancer. MDS affects mainly older people and many of them are on what’s called ‘watch and wait’ Some of these people with low risk MDS are not always told it’s a cancer by their local hospitals. MDS UK and the other groups are launching a campaign this year to get some consistent labelling and not to shield people from the reality and possible ramifications of having a blood cancer diagnosis. I know from my time working as a nurse and more latterly a hospital chaplain that people will worry about receiving a cancer diagnosis whether you tell them or not so you might as well tell them. Also those that don’t want to talk about it or accept it will make their wishes known. Many people prefer to know and to get good quality info to support them. Some may want to put their house in order. We need to treat people like the adults they are and not make decisions for them. I feel quite strongly about this so I am right behind all those making a noise about the issue this year. If you are realty scared and worried about a new diagnosis of MDS, please shout and ask widely for information and support from the hospital as well as patient support groups. There are also Facebook groups where you can chat to others who have been down this road before you. There are no stupid questions. Keep asking away until you are satisfied. I’m still here 22 years later and there are improvements in knowledge and treatments all the time. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">To finish off on my transplant rebirthday I’d like to say thank you to each and every one of you that make a difference in my life. Here’s to whatever comes next! </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"><br /></span></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-20677757104045120642022-08-21T13:24:00.001+01:002022-08-21T13:24:18.945+01:00Football crazy<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijfu1AHtjf7LzaXalxh-Ms7vS2WsPcWV-Tk3PbdgfL2fXp3-00jF_UGhBaynsmwSTaFVlhmmsMgarlf9z_q92of8E5tQM5Q4oVaEF6CMOC184wz_miWicX_MA12WEgwQDiUYroqjMDe3Ol_LTJCvBZg-mALtCqoIsxSnYUoKubPA_pwkp_lcgbmLxH/s960/0CD5B126-3FB1-4F57-BF69-B959EB13F8FB.jpeg" imageanchor="1" style="margin-left: 1em; 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margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim0hxAuEcXEbbASQCnQwUS9dOwC69Me-rrOYeQ8G-wCRr7otCczak51KuTs7qFuFgXkouV6-nRjZJfFu6vNnOhNXGdtv2S5FOqz4vJL1WnGobPiqDA0k4jQtpwLPO4MFClO0Ns4kIv91gtkeizUoR8uEWKCiwdUlNVdfATn_KO7jLNP3LOpyAtIjR9/s320/F3A086C5-30E9-42A9-AFC9-C24EC81C2143.jpeg" width="320" /></a></div><p><br /></p>I <span style="-webkit-text-size-adjust: auto; font-family: "Helvetica Neue"; font-size: 14px;">haven’t written a blog for a while so thought I should get down to it.</span><p></p><div class="" style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 23px;"><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 16px;"><br class="" /></div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px;">I really enjoyed the recent Women’s Euro’s. England had a fantastic tournament and I found the final quite emotional. For those that aren’t aware of my background, I played football from a very young age. At primary school I played with the boys as I was better than they were. I had short hair so they all thought I was a boy any way.</div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 16px;"><br class="" /></div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px;">When I went to Plumstead Manor Secondary School I was not happy. My parents chose it as it was an all girls school, so no football. I agitated constantly about including football in the curriculum. I was very good at all sport so my PE teachers would have to listen to me going on and on about it. While I was doing this I played endless hours of football on Plumstead and Winns Common. In my final year 5th or year 11 depending on how old you are, they finally started playing football.</div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 16px;"><br class="" /></div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px;">My parents had issues with alcohol and I spent a lot of time hanging about pubs and clubs. Sometimes if there was space in the car park or a spare blank wall I would kick the ball about. It gave me something to do while I waited. A bloke called Jim I think, saw me and said we have a girls team at our youth centre. So off I went to St Peter’s Woolwich and joined my first girls team. After this I went on to play for Millwall Lionesses and then Charlton.</div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 16px;"><br class="" /></div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px;">Football gave me a release for all the pent up emotions I had because of my troubled home life. I used to imagine the ball was my dads head sometimes and took great delight in thumping it into the back of the net. I played on the right wing because I was so fast. When I ran down the wing with the wind whistling in my ears I felt free, like a bird floating on the air.</div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 16px;"><br class="" /></div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px;">I played until my mid 30’s when I was diagnosed with the rare blood cancer myelo dysplastic syndrome. I was devastated not to be as physically active as I used to be. I ended up putting all my trophies and medals away as they made me feel sad when I looked at them. Eventually I gave myself a talking to and reminded myself that at least I’d had that experience in my life.</div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 16px;"><br class="" /></div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px;">To keep me connected to the game I decided that every time I went on holiday I would buy the football shirt of that country. I have amassed quite a collection. When I’m watching international competitions I get all my shirts out and wear the strip of that country if I have it. It’s my way of not getting into the horrible tribal nature that happens in mens football. Football is a sport for all.</div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 16px;"><br class="" /></div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px;">In my last job I discovered that a disability team was hiring our school sports hall for their training and practicing. I went along and was so impressed by what they were doing. I volunteered my time for a while. I also used to drive our school teams to their matches. I used to joke with the kids and say to them “how many school football teams have God on their side?” Lol. They loved it.</div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 16px;"><br class="" /></div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px;">One day I decided to do a football based assembly on issues of equality. I was able to share Farah Williams story. She was homeless when she began her football career and no one else knew. She went on to play for England and was regularly commentating in the recent Euros. She is a fantastic ambassador for the homeless football teams and tournaments.</div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 16px;"><br class="" /></div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px;">Football is so much more than the bad press it gets. I am so proud to have been part of the pioneers who paved the way for the women playing today. We were banished to council run pitches like Hackney Marshes or Clapham Common. We had to put up with sexist comments from blokes passing by. Some would say “We’re only waiting for you all to change your shirts at the end” We had to pay our own fare and subs train twice or 3 times a week as well as play matches. We took it in turns to wash the kit. The women today have a very different experience and I am so pleased to see the popularity it’s gaining.</div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 16px;"><br class="" /></div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px;">I had to opportunity to go to one of the Lionesses match’s. Sadly because I am still shielding, I couldn’t go. I hope that at some point very soon I can get back to accessing live events and joining the rest of society. For now I live through the successes and lives of the people and friends around me far and wide. I’m proud to say that my eldest grandson got 2 A’s in his A levels. My daughter also had the good news of a new job today and the final thing to celebrate in that after a month of not only no bath but then no shower, I can finally stop handing pegs out at the door and get clean!</div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 16px;"><br class="" /></div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px;">For those that aren’t so keen on football but like to follow my story of MDS and the transplant and GvHD journey, here’s my latest news. Over recent months I have reduced my steroids to the lowest maintenance dose. I have to stay on them for life due to adrenal insufficiency. I also had to take less of my immunosuppression because I was on a strong anti fungal drug for my lung infection. The two drugs didn’t mix well, hence the reduction. Sadly my immune system went crazy and I ended up getting psoriasis. I had this as a teenager but it went during my twenties. My sister Gail also has it. Hers has stayed with her. I used to have it on my elbows and knees and knuckles. This time it’s all over my torso front and back and up into my scalp. It’s being treated and is lessening. Also my immunosuppression is back to it’s usual level. Hopefully it will go in a few months.</div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 16px;"><br class="" /></div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px;">Another challenge I’m facing is that without steroids I have no appetite. I was hoping it would have improved by now. At my heaviest on large doses of the drug I was 72kg. I didn’t recognise the face staring back to me in the mirror. Now I’m 48kg. Thats a bit too light though. Fingers crossed my appetite comes back. One of the advantages of the reduction of steroids is that I look more like myself again. When I was bigger as I said I didn’t recognise who was staring back to me in the reflection. I felt frumpy and old. Now I see my fit 17 years old self with 40 years of experience etched in my face. I may have the body of a 95 year old but weirdly I feel younger again. When I felt old and frumpy before, it just wasn’t me. I’ve always been little and slim as you can see in my footballing photos. It’s weird how these things get inside of you. I wouldn’t say I was vain and yet being bigger had an impact. It’s worth noting that and looking at why we all feel these insecurities. Are we comparing ourselves to airbrushed images? Are we succumbing to stereotypical images? I know there was nothing I could do about it. I know I needed that treatment. It didn’t stop me having my photo taken and going out and doing things because, fortunately for me, my self esteem is good. It’s healthy to acknowledge that disquiet though.</div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 16px;"><br class="" /></div><div class="" style="font-family: "Helvetica Neue"; font-size: 14px; font-stretch: normal; line-height: normal; margin: 0px;">Where ever you are and whatever you are doing I wish you a good day. If it’s not so good a day, I send you all the love and hugs I can muster.</div></div><div class="" style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 23px;"><br /></div>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-41716004030309220662022-07-20T21:31:00.004+01:002022-07-20T22:50:47.060+01:00The abuse in our education system <p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc5fUc_tpgF1Q9-Y-_bDThFpsv2YlXgFpHESTloseFURA4cZJTRslbhhw0Re4D_P7biD-nm3JIzemnFHM6Lk-GL952WimEzR5YyRB2BJ7r44azaZTWoef66tOJjbmE9wX9B4L-XAzx9we-0xiwFLgljtxitoAPcW7OMLDuFw3sKRcmYjKaPVsobR2w/s1080/75FA517C-729B-4DD7-AFF2-426429751D0C.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc5fUc_tpgF1Q9-Y-_bDThFpsv2YlXgFpHESTloseFURA4cZJTRslbhhw0Re4D_P7biD-nm3JIzemnFHM6Lk-GL952WimEzR5YyRB2BJ7r44azaZTWoef66tOJjbmE9wX9B4L-XAzx9we-0xiwFLgljtxitoAPcW7OMLDuFw3sKRcmYjKaPVsobR2w/s320/75FA517C-729B-4DD7-AFF2-426429751D0C.jpeg" width="320" /></a></div><br />There is a Chinese curse. It says “may you live in interesting times”. That is certainly true of our current times. Wars, cost of living, Trump and Johnson playing with our democracies, pandemic, Brexsh*t. On top of all this we have chaos in our car industry and also in our airports. Just to round things off we also have a record breaking heatwave. <p></p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">I live with the consequences of cancer and the effects of treatment. It makes me look at things differently. I have four adorable grandchildren and I look at the world through their eyes. I was at each of their births and held them when they were just a few minutes old. It was such a joy to sing to them as I welcomed them to the world. I told them what a wonderful world it was and that they will always be loved. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">Before my bone marrow transplant I worked in secondary schools. One of the amazing facts that blew my mind was that children were being educated for jobs that didn’t yet exist, such was the changing and developing pace of technology in employment. I worked in two very different schools. One was an outstanding school in inner London amongst some of the biggest council estates in the country. The deprivation and gang culture of Elephant Castle and Bermondsey were rife in the community. In the school the young people were met with love and respect and they responded well to it. There was a very well resourced pastoral care team. Discipline was firm but fair. All mobile phones had to be handed in before school and collected after. If a student was found with a phone it was confiscated till a parent came and. collected it. If a detention was set the teacher that set it and a member of the senior team would meet with that student and talk about what happened. The young people responded well to this all round package of academic excellence and care. Behaviour was not an issue in this school. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">My next school was in Kent. This time an academy chain took over a previously failing school. Some of the behaviour was problematic. Some staff and some students couldn’t really be bothered. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">I was asked to be part of the team to change the ethos of the school. The young people flocked to my office as word got out that I could be trusted. Some big and angry boys would come to me having punched holes in walls just so I could help them calm down and give them a much needed hug. Girls would also come telling me of chaotic home lives and various teenage traumas. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">Alongside changing the ethos, there was also a new school to be built. I decided on the final spec for my chapel. It was situated right over the entrance to the school. When the students were asked in a questionnaire what they thought of the chapel, one student said “Its like the beating heart of the school” The head teacher endorsed that observation. We had a successful Autism Resource Centre, there were student support workers. There were lots of teaching assistants. Alongside this there was a fantastic SEND department, a counsellor, a careers officer, specialist safeguarding officer. This was all under the banner of a well run inclusion department </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">On one occasion a student came to me for our usual chat. Her dad had died and she needed extra support. Her mum was on benefits and there were other children. As she went to leave she said to me “I didn’t have any dinner last night” I asked if she was in trouble with her mum. She said no but her mum had been sanctioned by the Benefits Agency and they didn’t have any food. I asked the student to come back to me at the end of school as there was something Important to do. She came to me very quizzically and I told her I was giving her a lift home. I then pulled out 3 bags of food. She was a bit scared and said mum had told her not to say anything or else social services would take the children. I reassured the student and said it was our secret. I explained that my work was confidential. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">When I got to the house there were sheets up at the windows and no carpet on the floor. I explained to mum that my role was very confidential and no one else would know about the donation. I asked her to contact me if there was any thing she needed in future. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">The student kept coming to me and then I arranged a referral to a fantastic child bereavement charity. They would take young people six months after their bereavement and do a two day workshop. Mum didn’t have a car or the confidence to do the parenting aspect of coming at the end and hearing and seeing what they’d been doing over there 2 day workshop. She asked me if I would take her daughter to a fro each day as it was a few miles away and not served well by public transport. I spoke to the head who gave me permission. That workshop was so beneficial for that young person. She was so different after and did well for the rest of her schooling. It was all these small acts of kindness that made such a difference. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">I lay this all before you because I want to show the contrast between what I did up to 5 short years ago and the lived experience of watching my wonderful grandchildren suffer from draconian behaviour policies, poor teaching where one size fits all, lack of pastoral care and support and a very inflexible and harsh system. This has totally destroyed their love of learning. My eldest grandchild is 18. He is a very smart cookie. He got 7,8 and 9s for his GCSEs. He refused to stay in the school any longer and chose himself to enrol in a good Local Authority school for his A levels. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">He said the teaching was much more thorough in the new school and they finished the curriculum before the end of term and had plenty of time to revise. In the previous academy school he was tested on things that he hadn’t been taught because they ran out of time and actually failed to complete the curriculum before his GCSE’s.</p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">My next grandchild has some special needs but is very private. His image is important to him and he is quite sensitive. He likes to fit in and go undetected. Unfortunately he was involved in a horrible prank in the playground. He didn’t want to go back into his lessons because he was traumatised and humiliated. He was out of lessons for 4 months. In the end I had to make a complaint to the local authority. They stepped in and we moved him to another Local Authority school. My daughter gave this school the same info as she gave the previous school. He was at the previous school 4 years and no phone calls home of concern. Within weeks of starting the new school staff were in touch with my daughter about some concerns over his concentration. They got him through his GCSEs which was amazing. He is not academically made but is in no way stupid. He should get enough qualifications to take him into college or an apprenticeship for an electrician. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">My next grandchild is wired very differently from his brothers. They are fairly quiet and reserved. He is not. He has a very strong sense of justice and will stick up for himself and others. The school have a policy of no dissent. As he answers back he gets in trouble. He often has detentions and ends up in the isolation room if he fails to comply. If he is caught doing something he shouldn’t, he doesn’t argue back and takes his punishment. In the isolation area that they call DFL distraction free learning, he will be there for 6 hours with poor quality worksheets and not all the subjects either. At one point he had a good run and wasn’t in DFL. One of his core subject teachers complimented him on how much he had improved since not being in DFL so much. Just that fact alone shows that DFL doesn’t work and in fact detracts from students learning. He is not a bad kid. At home he is a dream. He is kind and considerate and very funny and friendly. I know he will go far despite the bad school system he is the victim of. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">My professional experience of many many years of working in trauma and deprivation tells me that silencing children is dangerous. Abuse occurs in silence. Students have to be able to express themselves. If he was allowed to make his point, he would settle down and get on with it. Just like at work. Sometimes we have to say to colleagues, “I disagree, I don’t think you have the full picture” That’s all he wants. Just for things to be seen from his viewpoint. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">My final grandchild is in a state school. She loves it. They are always doing innovative things and the children have fun. Learning should be fun because when it is, you learn more. One day I asked her how school was. As quick as a flash she said “I didn’t do too well” I asked her what she meant and had she had a hard test? She replied “I obviously didn’t learn enough cause I have to go back tomorrow!” Her humour and cheekiness show how comfortable she is with her school. They didn’t have to go in yesterday because of the heat but she went anyway as the school was open. I feel dreadful that I wasn’t able to do enough to keep my older grandchildren's love of learning alive. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">Today is the last day of the academic year there are often high spirits as the young people look forward to a long summer in front of them. When I worked in both my previous schools the final assembly had a light and celebratory feel. All were happy to be finishing staff and students alike. Today my grandson told me that his cohort won the chocolates for having the most points. Everyone was cheering and whooping. I know that when students respond like that it can be very loud. I always took the whole school assembly at the end of each term. I would let the kids let off steam then get them to hush and they always did. I’m small and could be seen as a pushover as most kids were bigger than me. That never happened because they respected me. When working in schools it’s vital that you learn how to take the heat out of situations. Your actions as the adult dictate whether the situation escalates or calms down. All teachers and youth workers have to have this emotional intelligence so as not to inflame a situation. In the assembly today when my grandson and his friend were clapping along with everyone else the two of them were singled out. They were told they were being disruptive and interrupting the assembly. As mentioned earlier, this school has a no dissent policy, these two were astounded as they were doing the same as everyone else. The girl tried to explain. In response the teacher at the back started shouting. His actions disturbed the assembly. He yelled at the girl to get out. I know this child. She is a good kid. Never a problem. She is bright, does her homework and is a really nice and friendly student. It makes it all the more astounding that she was ordered out of the assembly. Does that sound like it was well handled? Sometimes I just despair. To continue to make the situation worse, this teacher phoned the girls mum and said my grandson was a bad influence on her. How can that be as he complied and didn’t argue and was left in the assembly. Sometimes I just have to shake my head in disbelief. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">When United Learning Trust took over control of the school they promised many things. They said they had fantastic SEND provision and were concerned for the whole child’s rounded education. They said they had no plans for changing things. The rot started after the first year or two 32 staff were made redundant. There were some voluntary redundancies. The support staff team was decimated and reduced to 12. The behaviour policy was changed and was very rigid. Students had to line up in the playground before going into school to have their uniform and equipment checked to make sure they were “ready to learn” They were also told that they had to track the teacher with their eyes and there was no room for dissent. The policy for behaviour is warn and then remove to DFL. No emphasis on reconciling the situation. There was certainly no restorative justice in sight. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">ULT also have a policy of centralised lesson plans and everyone has to follow the same sequence. That totally stifles creativity. One thing I’ve learnt about good teachers is they are always very creative and no matter what government policy is in vogue they will find a way to teach their students. What puzzles me though is why they don’t get through all the curriculum before the end of term? </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">Another question is why do they think they have such a good SEND department. My grandson who had some additional needs was never asked if he needed anything. My daughter had given detailed information about his condition. In four years no calls. When he transferred to the new state school the SENCO phoned to clarify things with my daughter and got a more accurate understanding by doing so. Within weeks they had picked up that he wasn’t concentrating well. I don’t think he changed but the two approaches from the different schools is quite stark. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">I’ve also listened to some of the other parents and children and heard their dissatisfactions. Inconsistent teaching, unqualified teachers, supply teachers. The psychology department was drastically cut. I know first hand from an A level student, the impact of having many different teachers some who were teaching out of subject and how detrimental that was to him. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">I know of children with a diagnosed autism spectrum condition who have not been picked up by the specialist autism unit in the school and not given any extra help or support. Teaching/learning assistants have been taken out of the classrooms. I cannot in a month of Sundays get my head around that one. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">I could go on and on about all the problems as there are so many but I won’t. Some of the charter schools in America that some of our academy system is modelled on have apologised for developing the draconian behaviour systems. They now realise that children and young people need a voice. One school issued an apology to all students and parents for the harsh system that tried to make kids comply to. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">I know from my own children and decades of working with young people that children learn what they are modelled. Heaven help us when they leave school and fail to listen to voices less powerful than theirs. We are going to also churn out really angry people who will spit the dummy if people don’t comply with their instructions. </p>
<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">I’ve always held the belief that you can catch more bees with honey than vinegar. I learnt that at school and it served me well. It’s time we all woke up to what is happening in some of these unaccountable academies and how our children are being given a disservice. Government guidelines say that Multi Academy Trusts should only have a certain amount of schools. That figure is 10 schools per MAT. ULT have 93 Please wise up if you are a parent choosing a school for your children. Check out the culture and ethos. Look at the salary of the chief exec. Ask other people about their experience. Don’t be fooled by the glitz and the polished delivery. </p>
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<p style="color: black; font-family: "Helvetica Neue"; font-size: 11px; font-stretch: normal; line-height: normal;">When we were fighting to stop our secondary school from being swallowed up by ULT, Jon Coles, the Chief Exec decided to try and bring me down a peg or two. He was on £250k, I was on disability benefits. He has friends in The DFE where he worked formally, I have years of experience in pastoral care. Not much of a power imbalance! I’m not frightened by that though. He took it on himself to threaten me in several exchanges between us. He researched my background and the background of two other vocal people in our group. He then sent me a message saying “how would your colleagues be if they knew you worked in an academy?” He then went on about what he had discovered in the background of the other two, sharing with me their personal information. That’s how unprofessional he is. There is enough bullying in schools where children are learning how to manage all those raging hormones and emotions. We don’t need more bullies at the top who turn staff and teachers into bullies which means the school sends out bullies. I really don’t think it’s rocket science. A good education can change anyone but a good teacher can change everything. Let’s get back to that before it’s too late</p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-11029121244001657002022-07-09T22:02:00.001+01:002022-07-09T22:02:52.413+01:00Ta women’s football<p><span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 23px;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0RBo6ANN3CfDuXcSnWgpNoXkyBkiYPSKf525wAzE3TTkJVKl1ZYCFZKvo_W0JnWTqbT_yoYx2gU9PKxXElfiyoWn0y-SPl9mFa6brvCiU-bhgYFPkZSb8Omue-NB1Bq10vlnzypg12H3gkMZk0wqIqDPl2altK_zOcwenbhYHKNy4QjIyX-07sz4m/s1613/2D146895-E146-4307-8768-9FAF0A2B15B5.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1613" data-original-width="1257" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0RBo6ANN3CfDuXcSnWgpNoXkyBkiYPSKf525wAzE3TTkJVKl1ZYCFZKvo_W0JnWTqbT_yoYx2gU9PKxXElfiyoWn0y-SPl9mFa6brvCiU-bhgYFPkZSb8Omue-NB1Bq10vlnzypg12H3gkMZk0wqIqDPl2altK_zOcwenbhYHKNy4QjIyX-07sz4m/s320/2D146895-E146-4307-8768-9FAF0A2B15B5.jpeg" width="249" /></a></div><br /><div class="separator" style="clear: both; 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margin-right: 1em;"><img border="0" data-original-height="3088" data-original-width="2316" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi93FOxzhFkgq821-yaCV2F4nZ_ejWdiomSVqyBMmICiBS0zDjhF3Kn8SJmF12Iu0KMtZOBQ0osIAYuRoe9LljNDEeLQ_sRBt4O3pw6r86TKYyuxBoRzJgoXinOKeAJU2ro6MeXxSXADLQl--Hq_YkV_t_WQz8tw051nh8NG9tcZhPZB72eY8iZl6K/s320/A9130210-9677-4D20-B6E8-735295067C13.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDn5THV6sfIud6THjNlA_nL8U7MwiTHTpSsziGoGUuuFaiwJsfOaNgpD2Kr04T5pVdVOvvS1UqVYwU72Xj-yo9PKP_yMdTGsvff5MIReTSVn8PoGw9E8B4gB2C7FBJC09lbAKCB0y_lu2coqrsGtY-1T7-NUiHYt91_Gslq0M1Liw-XraAx4chPvHE/s660/AEE8D2E8-C37D-4F1E-B6FD-09D760712620.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="660" data-original-width="660" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDn5THV6sfIud6THjNlA_nL8U7MwiTHTpSsziGoGUuuFaiwJsfOaNgpD2Kr04T5pVdVOvvS1UqVYwU72Xj-yo9PKP_yMdTGsvff5MIReTSVn8PoGw9E8B4gB2C7FBJC09lbAKCB0y_lu2coqrsGtY-1T7-NUiHYt91_Gslq0M1Liw-XraAx4chPvHE/s320/AEE8D2E8-C37D-4F1E-B6FD-09D760712620.jpeg" width="320" /></a></div><br />It’s been a fairly busy time for me lately. One day I had 3 zoom/teams meetings. I said to Maggie that was more like a work day. Lol. One of the things I find difficult about zoom and teams is that because your comfy at home it’s more likely that you will show how tired you are. I yawned through a couple of sessions. It wasn’t to do with the content as that was interesting. It’s just due to the fact that it takes a lot of energy to concentrate that hard. I have enjoyed it and it was good to give my brain a workout. On top of that my sister Gail and I planned a surprise garden party for my niece Jessica.<span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 23px;"> </span><p></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Jessie has been studying at Greenwich University. Her cohort were really badly affected by the pandemic. Despite all that uncertainty and most lessons being on line she managed to graduate with a 2:1. I’m one proud Auntie. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">As we move forwards (please note I don’t say as we move to a post covid phase) with the pandemic I find myself being disabled by society around me. When people were wearing masks and still practising social distancing I was able to go to quiet and out of the way supermarkets in a safe way. Now I often end up sitting in the car as it’s a bit too risky. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Sadly I also feel disabled by the NHS. When I go to haematology they are of course brilliant and really on top of infection control measures. All patients are vetted at the door. Visitors of relatives have to wait outside the unit till called by doctor. Everyone wears a mask and social distancing is practiced wherever possible. Sadly for me I’m also seen in many other departments. I have appointments in rheumatology, dermatology, respiratory medicine, ophthalmology, gastroenterology and of course all the scans and X-rays and blood tests that go with it. Now I’m expected to sit next to people who are unmasked. There really need to be safe zones for clinically extremely vulnerable patients. It’s a mess and I feel I’m being left behind. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">On top of all that my car was vandalised. It’s seems they were either trying to steal the car or the catalytic converter. They have no idea of the damage they cause and the impact it has. My car is my lifeline. I cannot go on public transport. I use the car for all my appointments. It’s a Motability car which is the only reason I have such a nice big vehicle. My mobility scooter has to travel with me hence the need for a big boot. Despite the helpful Motability people it’s still a right royal pain. On the day I found it, I ended up being on the phone e or computer all day. Repair garages only have small curtesy cars. Again helpful Motability said they would hire one from me that I could keep my scooter with me. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">On the medical front things are okish. I have read a lot recently about opiates not being good for chronic long term pain. Without consulting anyone I stopped my pain patch. I’d had it since at least 2014. Oh my days, it was like withdrawal. I couldn’t sleep, eat, sit still. I wore a path to the bathroom because I needed it so often. I was determined I wasn’t going to give in. I’m fine now but it was rough for about a month. Of course I’ve now given myself another problem. I’m in a lots of pain. I spoke with the pain consultant. She congratulated me on coming off the patches and said it would have been better to do it more slowly and gradually lower the dose. I’ve learnt that lesson. Lol. She is going to try some different types of patches with lignocaine in it. Lignocaine is a local anaesthetic. I’ll be interested to find out how well it works. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">I had a really fascinating test the other day. I was having nerve and muscle assessments. As you can see if the photo below it was like a torture session. </span><span class="s3">😃</span><span class="s2" style="font-family: UICTFontTextStyleBody;">The doctor was holding something like a small cattle prod. When she places it in the right place, it vibrated at that spot but would make my foot twitch. Weird. After testing many nerves in this way, she then went on to place these long fine needles in different muscles including feet, calf, shin, thigh front and back, hand and finally neck. Each time she moved the probe to a new place she would make me flex and relax my muscles. I could hear the energy used in the form of white noise on the screen. It was really interesting. I shall look forward to hearing the results. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Another great distraction for me just now is womens football. The #Weuro22 #lionesses. For those that don’t know me I love me footie. I played 40 years ago. It’s great to see these amazing teams getting such airtime. It’s about time too. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">We are living through interesting times. Politics and governments are in a mess. Health care is under enormous strain. The cost of living is hitting people and yet people still do acts of kindness everyday and live lives that make a difference. It can be easy to forget that when surrounded by so much crap. This week alone I’ve had an unexpected present, an offer of £1000 from a lovely friend after hearing about my car. I’ve had offers of lifts to get me the hospital if needed and my caring neighbours all tried to help find the culprits. One of my young neighbours was woken by a noise and he looked out of the window. He saw the two people at my car and shouted at them and they ran away. There are so many good and honourable people out there. Don’t give to much energy to all the negativity. For me, integrity is doing the right thing when no one is looking. Why not this week be kind to someone? You might be the only person who is, so that kindness will make a huge difference. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;">Take care people and stay safe. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2" style="font-family: UICTFontTextStyleBody;"><br /></span></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-46509890836765569612022-05-28T20:23:00.000+01:002022-05-28T20:23:20.690+01:00World Blood Cancer Day 2022<p><span style="-webkit-text-size-adjust: auto; 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margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-0X-kcWZ3nOHJHGPSGkpBtTou41iARkXEMpwbjgCRoGJ2x0Ouqq8H5CUYrlMDCT8_2cvkdOvtsq4N2f1SN7RmG_AqaApm3nh7EMavtER5dGLTR1sVWqpU8cs0UBtRn_VzXtlhpthEpuJB0_o8mDsUefir_l-ZslOKvLfm7nMcmO9pcU0yHY08e8lD/s320/DA60347A-F700-4DCD-BF76-AA537C048BE8.jpeg" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilVXo6yf74fX7FuhOIoTu1bdKo8vv4a_4miDh3yh2CF5DAo2l5vRrepl2OAUhDUqGk8N_M6JEOZTo7JA9AkF3BlC7N5IgK-iFp_sCknCokgQi5tL2fKaDGaYlKPHiObVdD3XCwlknUe7CkqLgQdj57Z6tGSq8GssEWgaBLzkHT4wX4e9-prvu7IzI8/s4032/E4609596-C2FE-47A3-966C-DBA2715A5871.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilVXo6yf74fX7FuhOIoTu1bdKo8vv4a_4miDh3yh2CF5DAo2l5vRrepl2OAUhDUqGk8N_M6JEOZTo7JA9AkF3BlC7N5IgK-iFp_sCknCokgQi5tL2fKaDGaYlKPHiObVdD3XCwlknUe7CkqLgQdj57Z6tGSq8GssEWgaBLzkHT4wX4e9-prvu7IzI8/s320/E4609596-C2FE-47A3-966C-DBA2715A5871.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibP0APCmD-kDQEUrijpUoh8LDAQz6hfHXKzzpUfV9pfOmrHXJBszY6Fh3I_Wi48X10uWAr7H9b0TxA_AM78LryidDFyq4T7oL8Ay5n4Ul1NQ_ud0Cltkc0Za0T6IvEnQELSkViog_v1vCi__gavxRYbifiuDypCG81ZIbBD46cpfSVy819Aqd2VtpY/s2046/FF7D4A8D-5D18-4C29-8F84-56201BA67B3C.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2046" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibP0APCmD-kDQEUrijpUoh8LDAQz6hfHXKzzpUfV9pfOmrHXJBszY6Fh3I_Wi48X10uWAr7H9b0TxA_AM78LryidDFyq4T7oL8Ay5n4Ul1NQ_ud0Cltkc0Za0T6IvEnQELSkViog_v1vCi__gavxRYbifiuDypCG81ZIbBD46cpfSVy819Aqd2VtpY/s320/FF7D4A8D-5D18-4C29-8F84-56201BA67B3C.jpeg" width="320" /></a></div><br />As today is World Blood Cancer Day I thought I should do a post about the continuing trials and tribulations of a life differently lived due to blood cancer and the effects of treatment.<span style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 23px;"> </span><p></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Many of you know but for new readers this story started when I was diagnosed with MDS (Myelo Dysplastic Syndrome) a rare blood cancer when I was in my early 30’s. I’d had weird blood tests back as far as my early 20’s so there had been a problem for a very long time. It took a while to diagnose me because statistically I was not in the demographic. Most people with MDS are diagnosed when they are older and it effects more men than women. Trust me to be different! </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I lived with the condition secretly for many years. My poor old long suffering partner knew but I even kept some facts away from her in the beginning in my bid to not worry people. I used to say when people asked why I looked so pale that I had a funny blood disorder and left it at that. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">As the years went by I was hit by more and more bouts of sepsis. Sepsis is a very serious condition with a 40% mortality rate. The reason I kept getting it was because my blood wasn’t producing enough white cells. This makes you prone to infection. MDS also affected my red cells and platelets. Some MDS is confined to one aspect of blood but mine was what they call multi lineage. That means I would bruise easily at times and also become seriously anaemic and need blood transfusions. Each time I got sepsis, I would fight my way back and after recovering I would get back to full time work. The dips and hospital admissions were getting more frequent and I was beginning to struggle. For my 50th birthday I wanted to go on holiday with my extended family. 13 of us went to Majorca for a couple of weeks of chillin’ in the sun. We had a super time including a brilliant day out in a speed boat. The day before we were due to fly back, I was taken seriously ill. I’d been sick in the night and I had a temperature in the morning and was a bit confused. My partner marched me straight down to the doctors. Thank heavens she did. The doctor didn’t speak English. I don’t speak Spanish. He took my temperature which was really high. Then he took my blood pressure, pulse and oxygen levels. All were in my boots. He looked at me, then looked at his readings and he banged the machine and did it again. Same thing happened. He was in disbelief that I was still upright. The next thing I knew I was put on a bed and I was surrounded by medics and had needles put in my neck and my clothes cut off. I had developed sepsis again but this time it had developed into septic shock and that has a 60% mortality rate. I was placed in ICU and my poor family were told I was going into organ failure and I may not survive. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I can’t image how hard it was for my daughter and sisters and extended family to fly home not knowing if they would see me again. Our travel insurance enabled my partner to stay on with me. The Spanish system was excellent and they certainly saved my life. I got out of hospital after 11 days and then had the best part of another week before I was well enough to fly. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">It seems I have more lives than a cat but my medical team were worried that one day I wouldn’t bounce back. They prepared me for a bone marrow transplant which happened in October 2016. They started to search the bone marrow registers but no one was a good match for me. They said they would test my younger sister as she was the only full sibling I had. They warned us both that there was only a 25% chance of a match with any sibling. Fortunately, Gail was that match! </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">The transplant was a gruelling process but I embraced it warts and all as I hoped it would put me into remission and give me longer on this earth. It has certainly done that because 5 years later I’m still breathing. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Sadly though I live with the consequences of such harsh chemotherapy. I also have muscle myopathy (weak muscles) probably from all the steroids I’ve had to take. I have still got a wonky immune system that is not strong at all. I am treated with IVIG to give me some antibodies but I can easily pick up infections. If I do get an infection it seems to have a dramatic effect on my weak bone marrow and it goes into free fall and all my counts bottom out. My fantastic medical team at Kings keep a good eye on me and if they spot that process happening they admit me and fill me up with strong antibiotics. As I am fragile in that way covid has been a nightmare. I’m still having to shield. I haven’t hugged my daughter, grandkids, sisters, brother, extended family and friends since this horror started. I’m very tactile and I miss that contact. However I am blessed to have a garden that I make really good use of during the warmer months and entertain people. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Some of the side effects of all that treatment have been serious damage to my hearing, lung damage which leaves me breathless on exertion, muscle wasting, skin itching, cataracts, dry mouth and eyes, gut and absorption problems, gastroparesis and reflux and dental issues. I had a condition called SVCO which has left a few issues and I had a small stroke last year. I have also developed osteoporosis. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Despite all that I count myself lucky. I’ve seen my daughter grow into a beautiful young woman and a fantastic mother. I’ve seen my 4 grandchildren born and grow. I’ve proudly watch my niece finish her degree and start to make her way in the world. I’ve celebrated more than 30 years of love with my amazing soul mate and partner. I’ve presided over my sister and mothers funerals as well as many other family members and friends. I’ve welcome new life to the world and given thanks in baptism for them and I’ve married people and celebrated love. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">If you are newly diagnosed, do not despair. I was diagnosed in 2000 and I’m still going. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">One of the things that ill health has taught me is to live deep within my soul. I don’t sweat the small stuff or the big stuff. I know I’m blessed to live in the time I do where all these treatments are available to me. I’m blessed to have such a supportive family and friends. I’ve also got to know many virtual friends all over the world that I wouldn’t have known otherwise. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Living with blood cancer is not easy <span class="Apple-converted-space"> </span>but it doesn’t have to be the end , it just means letting go of the life you thought you’d have to then live the life you do. It’s ok to struggle. These things are not easy but the struggling helps you to be the best version of you that you can be. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">On this World Blood Cancer Day I wish you every blessing for all your experiencing and going through. Just hang on in there, some of the best days of your life hasn’t happened yet. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0tag:blogger.com,1999:blog-6044528721145230651.post-3483945823493873222022-05-07T11:27:00.001+01:002022-05-07T11:27:55.880+01:00Garden Blessings<p> </p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Sometimes I just don’t know where to start. I’m in the midst of one of those times where I just have to keep breathing. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Today is a big Kings Hospital day. I left home shortly after 8am. I was due to have IVIG at 9.30, then a skin biopsy at 12, then haematology clinic at 1.30 and finally rheumatology at 3.20pm. It will be a minor miracle if all that happens without any hiccups. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Tomorrow I’m back at Kings to be admitted for a small op to tighten up the muscle between my oesophagus and stomach. What a life eh? </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">I’ve been feeling really tired for the last few days. Let’s hope the good sleep with the general anaesthetic perks me up. I can live in hope. Lol. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">One of the good things thats been going on recently is being able to get back out in the garden. It’s been so nice to hang out with family, friends and neighbours and share some good wine and food as well as great conversations. My poor mate Alison came from Cumbria for a visit. Sadly it was bloody freezing that day. We wrapped ourselves up in blankets and enjoyed the conversation. I hope we have a warm and dry summer so that we don’t have to freeze when catching up with people. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">One of the really good things that’s happening for me just now is I’m almost there in getting my bike back on the road again. I haven’t ridden “Theo” for just over 7 years. Being a motorcyclist is part of my DNA. I’ve had bikes since I was 17. It gives me such a sense of freedom. I feel like I’m at one with the bike as I glide through the air. Many of you know I suffer with terrible nausea and vomiting. When I’m on the bike that goes away as I feel the air whistling around me. It’s so refreshing and invigorating. I’m very happy about that but I know my poor long suffering partner isn’t that impressed. What I always say to people is that it’s really important to live until you die. Being wrapped up in cotton wool is like a slow death to someone with an adventurous spirit. Watch this space as I get back on two wheels and have a new set of adventures to blog about. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Last week I found out that a lovely man who had been very important to me as a teenager died. David was the priest when I showed up as a street urchin come new chorister. The choir trainer at the time was called Gerald Gostling. He used to keep me behind after choir practice to sort out my diphthongs. Lol. For those who don’t know what they are it’s the point in the word where the vowel sound changes. If you have a South London accent like me you change the diphthong early. When singing it’s important to change it late. He also made me practice my vowels so I wouldn’t stick out. I remember all that so fondly. I still have my London accent but you won’t hear it when I sing. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Any way getting back to David. He was a fairly traditional priest. He had a big pastoral heart and helped a lot of people. I was encouraged to speak to him about my unhappy home life. I felt he listened and understood me. Even when I ran away several times and he was left with the task of taking me home, he never berated me. He made me feel that I had some genuine grievances and he didn’t judge me. He was the first person to stand up to my dad for me and I loved him for it. When he hugged me I felt safe and loved. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Despite all that love and good church based influence, I was still a mischievous imp. David and his wife Mary had 3 children Peter and Stephen who were twins and Carol. When we were younger teenagers we were all really close. At 17 Peter and Stephen went in separate directions. Peter Became a Verger at Norwich Cathedral and Stephen joined the army. There was one occasion when David was away on retreat. Stephen and I “borrowed” his car and drove to Norwich to see Peter. I did some of the driving despite not having a license. It was great fun and we never got caught. Funnily enough I think the car was a green hill man imp. Lol. Those were the days eh. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Sadly Stephen died in an accident about 10 years ago. My heart goes out to Peter, Debbie and Carol and their families as well as Honor at this sad time over the loss of David. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">It’s taken me a couple of days to write this as I’ve been so busy with hospital appointments. On top of what I mentioned above over the last 2 days as well as seeing the 4 consultants in their different specialisms, I’ve also had a skin biopsy which left me with 2 stitches, a photo session with a medical photographer and an X-ray of my neck. The next day I had the ARMS procedure (anti reflux mucosectomy) <span class="Apple-converted-space"> </span>under general anaesthetic. The anaesthetist was lovely and had read up about me waking up under anaesthetic before. She said I would be fine and she would look after me. I warned her I had problem veins and it took 3 attempts to cannulate me the day before. She said she was confident and was only using a small one. I didn’t like to say they even have trouble trying with paediatric ones with me. The first try didn’t work then bled everywhere when she took it out. Typical. She got in on the second go though. She gave me a strong painkiller and said I should begin to feel woozy. It was nice. For the first time in ages my neck didn’t hurt. Then she slowly put in the anaesthetic. She was talking to me and said to go to my happy place. I told her I felt drunk. She said that’s nice, I said yes and very unusual, then I don’t remember any more. It was lovely. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">When I woke up I had a bit of a sore throat and a slight chesty cough that hurt <span class="Apple-converted-space"> </span>my chest when I coughed. My stomach felt like it had been messed with but it wasn’t too sore. They had booked me a bed for the night as I’m a complicated patient but I’m also very tolerant of all these medical interventions and I cope well. I asked if I could go home and they were happy to let me. I just need <span class="Apple-converted-space"> </span>to stick to a soft diet for a few days. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Since I’ve been home I’ve taken it a bit easy as my tummy feels a little delicate. I went to vote on my mobility scooter and went to the wrong polling station. It’s all changed with the new ward boundaries. Never mind. Serves me right for not reading my info properly. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Today I had a lovely time in the garden. First I had a leisurely lunch with my daughter. I’m so proud of her and the mother she has become. I miss hugging her enoumouswith 3 of my neighbours. Over a few glasses of wine (them no me) Lol we put the world to rights. It was a lovely sharing of the lives of 5 women. All of us come from differing backgrounds but shared the common human experiences of life. We drank from the well of lives deeply lived and experiences had. It’s such a shame that people don’t gather regularly to just chat. We all learnt from each other and I’m sure we each took things away from the richness of the conversations. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">One of the good things about the pandemic is that it has built community in places. In the last weeks I’ve had lemon drizzle cake from two different neighbours as well as rock cakes and rhubarb crumble. When my partner makes nice bread or rice pudding we share that with people. All these little things add up and really help in getting through this tough time of continued shielding. Of course I long for the day when I can be free again but I also count my blessings to have so many great family, friends, neighbours and NHS staff in my corner. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Wherever you are in the world reading this blog I hope you also have some good people in your corner too. If not go and find some. I promise they do exist and the more light you let into your life the brighter your world will become. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIOhLEejzXRi5OPyeP0Vu6oX5nLYWxKIx_9Owlopl_D02IANil8xoQiOwZo_5NUqPepeojPYQfOaaYXEhmTTjr1MA0wDmn4iV97fcKbsiEhGcKsP8RsVxH1yzyDIF0sZ5SmOtFCNUov_4WU0Vux4K10yqXXw0a-JM8o0FqYMW21hutlC08PWRAw1Pc/s4032/FAE093B6-A712-4F87-B4C5-FFB42AEE824C.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIOhLEejzXRi5OPyeP0Vu6oX5nLYWxKIx_9Owlopl_D02IANil8xoQiOwZo_5NUqPepeojPYQfOaaYXEhmTTjr1MA0wDmn4iV97fcKbsiEhGcKsP8RsVxH1yzyDIF0sZ5SmOtFCNUov_4WU0Vux4K10yqXXw0a-JM8o0FqYMW21hutlC08PWRAw1Pc/s320/FAE093B6-A712-4F87-B4C5-FFB42AEE824C.jpeg" width="240" /></a></div><br /><div class="separator" style="clear: both; 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margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEgfEGk2NJ3dEWWBKqVgrPnAUU6enIj4VjzxjYUDLpXkvqtH7d5ZZF0u3DIGrlVT_e0z_5u4qCx4WY_rB8XYW9VIFPBEkJufo8IFK35eIbQGpkrhmu2HH6h_mlsrd8d4AnVCUSOQEIIHj9uiKnNWdM6IZPRmQy7vMv55JysjqsaBpTDVASSbZxzoMs0-=s320" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgiid6bUj0-CzezqE6mRWP8buZbD_p5vDim-ecEgHKERGcGYcagzzTmj1RNen93OFPuulzKohXLlMHCT4WiP6hT3Q1CFGzqBoKiZO-aAMuYz4q0xcIgOJgN41vSGWW5PEe_JGYJKkPwpxNm0c1i2J_raNd7dYGHUO3CO-sqQ3d1UXNr4F8zpEEu0EEg=s2778" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2778" data-original-width="1284" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEgiid6bUj0-CzezqE6mRWP8buZbD_p5vDim-ecEgHKERGcGYcagzzTmj1RNen93OFPuulzKohXLlMHCT4WiP6hT3Q1CFGzqBoKiZO-aAMuYz4q0xcIgOJgN41vSGWW5PEe_JGYJKkPwpxNm0c1i2J_raNd7dYGHUO3CO-sqQ3d1UXNr4F8zpEEu0EEg=s320" width="148" /></a></div><br />Today is #internationalwomensday so I thought it was a good day to post. It’s also been a year since I had what up till last week was described as a TIA or trans ischaemic attack (mini stroke). I remember the day so vividly. We had a couple of workmen in who were installing a new boiler. I had a mask on as did everyone else in order to protect my immunity. My partner came in the room and asked me something. I tried to answer her and was looking straight at her but no words came out. She turned on her heels and went off thinking that I was distracted or something. Then I started getting this tingling feeling in my arm and leg. I say down and pulled my masks down as I knew something was wrong. My partner came back and spoke to me again. I was trying to write her a note on my mobile but I couldn’t work out how to even open it yet alone write a message. It was weird. She said you can’t talk can you? I was able to shake my head. She said “we’re going straight to the hospital” And we just put our coats on and left. The workman were left wondering what on earth was happening. <p></p><p><br /></p><p>Now we wind on a year. This week I finally had my appointment with gastroenterology. This was the first one since October when they took the PEG out and did various biopsies. The lovely consultant was apologetic about all the mistakes that had happened previously. He explained that the muscle in the top of my stomach was too lax and needs tightening. He said that can be done endoscopically and after 3 months they would check again if it’s worked ok. Then he said the muscle in the bottom of my stomach was stiff and not always letting food through. This is a slightly more complicated procedure but still should only involve an over night stay. The biopsies were all fine. </p><p><br /></p><p>It was good to have this info and to know there was a plan to hopefully improve things. </p><p><br /></p><p>I was feeling rough that day as originally I had been told my appointment was at 12pm. I then got a text telling me it was at 10am instead. I find getting up early and taking all those horrible tablets really quite challenging. It leaves me feeling very delicate. When I was phoned and asked if I could attend an MRI on the same day I said yes as it’s always good to have two appointments on the same day as it cuts down on the travelling. The scan was booked in for 2pm. </p><p><br /></p><p>So after I finished with the gastro appointment at 10 instead of just sitting around and waiting till 2pm, I went and knocked on the door of the MRI suite and asked if they could see me earlier. They were lovely and fitted me in straight away. </p><p><br /></p><p>I was home by 12.30pm so it all turned out ok in the end. Sadly though I still felt pretty grim. The effects of getting up so early were still hanging over me. </p><p><br /></p><p>On that day I also had a phone call appointment with the stroke/Tia doctor. He was checking if I had any lasting effects from what occurred a year ago. I said that sometimes I forget what I’m saying and I still reach to find words at times. This is unusual for me who is so used to expressing myself and writing things. I also said I still get numbness and tingling in my arms and legs but that could be nerve compression. I explained that I’d had an MRI that morning and was he able to see the results. He asked me to wait why he looked into the computer. He then told me the MRI was available but hadn’t been reported on yet. Then came the bit that I really didn’t see coming. He told me the MRI showed that in fact I’d had a small stroke last year not a TIA as first thought. I was a bit gobsmacked. He said the treatment was still the same and he was happy to discharge me from that clinic. I was happy to be discharged but did feel a bit overwhelmed by the news. My life continues to be unpredictable and challenging. </p><p><br /></p><p>Later that day after unsuccessfully trying to war some supper I ended up doing some of my huge vomits. This went on for 24hrs and left me feeling completely washed out. I gradually started eating and drinking again. Then blow me down if it didn’t happen again yesterday. I’ve not eaten and I’m feeling quite weak and wobbly. </p><p><br /></p><p>I know there are several thing against me that contribute to the nausea and vomiting. Alongside the weak muscles and gastroparesis there is also all the medications I take as well as bits of GVHD. Sometimes I would just like a simple life. I long not to feel nauseous and to be able to enjoy food. It just doesn’t happen. </p><p><br /></p><p>I sent an email to my haematology consultant. I said I wondered if the antifungal and antibiotics I was currently on for my chest infection. They are stronger than the normal stuff so that’s what makes you feel ropey. She has suggested I stop taking one lot and see if things improve if not reintroduce them and stop the other one. This is alongside me already increasing my anti sickness drugs. </p><p><br /></p><p>I often say to people I don’t mind being this sick but I really hate feeling unwell. What I mean by that is I know I am limited in what I can do. I can’t breathe very well. I can’t walk without pain. I have no energy etc but the throwing up and constant nausea is awful. That’s the bit that gets me. </p><p><br /></p><p>As well as all these challenging things there have been some lovely events going on. My beautiful granddaughter was finally brave enough to do a backwards flip. I’ve been encouraging her and she sent me a video of her doing it. I was so proud of her and loved to see the delight in her eyes. I had a lovely “walk” in the park with some of my sisters and brother. I caught up with my lovely cousins and celebrated their amazing daughters 18th birthday. It’s always important I think to try and see the light as well as walk unafraid in the darkness. </p><p><br /></p><p>In my life I have met many amazing women. They have all helped me in different ways to be the strong woman I am today. Among the women that influenced me life are:</p><p>My nana</p><p>Cagney and Lacey </p><p>Mrs Wilson my French teacher</p><p>Ros</p><p>Wendy</p><p>Commander Kira</p><p>Frances</p><p>Captain Janeway</p><p>Marlene </p><p>Charlie’s Angels</p><p>Mo Molem</p><p>Greta Thunberg</p><p>Maya Angelou</p><p>Germaine Greer</p><p>Uhura</p><p>Jane Hobday who taught me about prejudice</p><p>Diana</p><p>Demi Moore</p><p>Mala Yousef</p><p>Suffragettes </p><p>Mary Magdalene</p><p>Princess Leah</p><p>Then of course I have the wonderful women in my family:</p><p>Maggie </p><p>Annie</p><p>Molly</p><p>Gail </p><p>Jess</p><p>Dawn </p><p>Karen</p><p>Helen</p><p>Sandra </p><p>Sarah</p><p>Charms</p><p>Abbie </p><p>Sallie</p><p>Linda</p><p>Caity</p><p>Gill</p><p>Hannah</p><p>Anne-Marie</p><p>Mya</p><p>And supporting the women some fairly good blokes</p><p>Jeff</p><p>Will </p><p>Russell</p><p>Terry </p><p>John</p><p>Nick</p><p>Josh</p><p>I also can’t let this moment go without paying tribute to the amazing women medics who have kept me going over the years:</p><p>Sophie</p><p>Geke</p><p>Janet</p><p>Ashleigh </p><p>Leonie</p><p>Kavita</p><p>Katie</p><p>Victoria</p><p>Carmel</p><p>Shu</p><p>Pramila </p><p>Anna</p><p>Ciane</p><p><br /></p><p>On this special #IWD22 let’s give thanks for all the women who have and who do make us the women we are. Thank you for your love, encouragement and support. I shall finish with some strong womens quotes:</p><p><br /></p><p>“I raise up my voice – not so I can shout but so that those without a voice can be heard… We cannot succeed when half of us are held back” Malala</p><p><br /></p><p>“Well-behaved women rarely make history” – Eleanor Roosevelt</p><p><br /></p><p>“Feminism isn't about making women strong. Women are already strong. It's about changing the way the world perceives that strength.”</p><p>G.D. ANDERSON</p>Rebel Revhttp://www.blogger.com/profile/07484447172441422083noreply@blogger.com0