An adventurous spirit

I remember when I was young asking my nan what it feels like to be old. She explained to me that you still feel the same but you do things more slowly. In my youthfulness I did not understand how an old person could still feel like a young person inside. Now that I’m a grandmother of 4 who are 20, 18,16,& 13 I understand her words. 

I still feel the impish and feisty street urchin inside. My 24 year battle with ill health has taught me to live differently but inside I still have that adventurous spirit. As a younger person and a fit adult I was always tireless. I suppose you could say I was a bit of an adrenaline junky. 

These days of brittle bones and skin that rips with the slightest knock I need to be more cautious. I’ve given up my motorbiking but I still crave that feeling of being free when you are riding around and cutting through the air with the wind in your face. There’s no better feeling. I’ve suffered from chronic nausea for many years. Interestingly I never felt it on the bike with all that air in my face. 

These days I need to be more clever about possible adventures. One of the things I’m really up for doing is the longest and fastest zip wire experience. It’s located in Wales. One day I’ll make it happen. Today I’ve been looking up quad bike hire or trike hire. Not been too successful so far but where there’s a will there’s a way. What suggestions would you have for me? I’ll give most things a go at least once. 

Enjoy the pictures of some of my adventures. 

Health wise things are slow to improve. The cough I had is much better but still present. The sinusitis is much better but still there and still producing thick green snot at times. Even I’m shocked at how long this is all taking to clear up. This all started with me getting Covid for the first time last July. I then tested positive till Nov. I then had two weeks grace and got Covid again. I also had flu and rhinovirus. One or a combination of them has been with me all the way till the beginning of March. 

I have an ENT appointment next week to talk about the sinuses. Then next month I have a respiratory medicine appointment. These of course are alongside my haematology appointments. Hopefully they will give me some pointers how to shake the last effects of these viruses out of my system. 

On top of all this my kitchen is still not finished. This is due to damage caused by a leak which is the 2nd time in two years. The kitchen furniture is coming back in a few days and then it should be another 2 or 3 days to finish it all off. We’ve been taking refuge at my cousins in Nottingham but need to be back in London Friday. I guess we will live on take aways for a few days. 

When we turn on the news there seems to be so much horror going on around us. My final thought for this blog is “don’t curse the darkness, light a candle instead.” 

International Women’s Day

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. 

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! 

The biggest challenge

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.  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. 

On one of the days I was told I needed to have a CT scan  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. 

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” 

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. 

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. 

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. 

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. 

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. 

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. 

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. 

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

Plague tablets!

A short blog from me. 

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 

Fingers crossed that the results are better today and they let me home. I just need an end to all this snot!

Rebel Rev at it again!

 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. 

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. 

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. 

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. 

Have a good day folks.

World Cancer Day 24

Today is world cancer day so I decided it was about time I wrote another blog. 

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! 

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. 

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.”  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. 

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. 

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.  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.

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. 

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. 

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”

“There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow.” Orison Swett Marden

“Cancer opens many doors. One of the most important is to your own heart” Greg Anderson 

Badly timed blip

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. 

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. 

It was so good to have a creative liturgy to write for this special occasion. 

St Peter’s 

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. 

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. 

 

All of this was made possible by the fact that I had Covid from July to Nov and it didn’t kill me! 

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. 

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. 

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! 

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.

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. 

Despite all that I’m keeping in good spirits. I’m just a bit weakened and even more frail than normal. 

I’m really pleased I managed to get the Christmas decs up. At least I have beautiful twinkly lights to look at each night. 

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. 

Merry Christmas Xx

The gift of life in the form of a bag of platelets 

An early Christmas pressie to keep me alive. A bag of nice juicy lifesaving red cells