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

Bittersweet Times

 

Today was one of those days. I experienced a real bittersweet moment. I’d had the engineer out to the washing machine. It was pulled out from under the work top. I thought I could easily slide in and hunch down and pull the plug. Instead as I hunched down my legs slowly gave way and I gracefully ended up on the floor like a snow figure melting. Me and my long suffering partner were in fits. She had to pull the washing machine out more so that I could shuffle on my bum out of the confined space as I didn’t have the power in my legs to stand up. It wasn’t dignified as I had to get over on all fours and then be hiked up by Maggie. We both kept laughing about it. She said to me “why on earth did you do it?” All I could say was that I forgot my body was so feeble and went to do something that normally a 56 year old should be able to do. That’s the bitter part. It’s very hard to be reminded of all the things you can’t do. Luckily for me, I feel the pain of the situation and let it wash over me (pardon the pun) and then I move on. It’s so important not to be trapped by the harsh realities. 

I’m not really enjoying this cold weather. I don’t like it at the best of times but now it’s more significant because it means it’s hard to socialise as I can only see people outside. I do have a plan to try and tackle it but the practicalities are proving to be challenging. I have a side return on the house that’s just under 2 metres wide. Most rectangular gazebos are 2 metres, so just too wide for the gap. If I got a rectangular parasol that was 2 metres, that might work as I could put it above the boundary. I just need something that would create a temporary shelter where I could see family and friends. I will also purchase a heater once I can locate a solution to the shelter. Any of you handy type people out there are welcome to make suggestions around what may work. 

We are fast approaching Christmas. I love Christmas, especially all the twinkly lights. It makes me smile as I drive around and see the festive decorations. This year the ads on tv have the additional dimension of it being great this year that we can all be together after all the restrictions from last year. I am really pleased for those of you who are able to meet up and have these special celebrations. For us blood cancer sufferers or those who’ve had stem cell transplants or are immunocompromised for any reason, life hasn’t changed. We are still shielding. It is just stretching on and on without a solution so far. I know scientists and medics will keep going until an answer can be found. 

Alongside the heavy emotional and psychological impact of our times, I’m also struggling physically. My appetite is waning. I keep getting nose bleeds and I’m absolutely covered in bruises. I get breathless easily and feel light headed at times. I know where all this is pointing but I hope I’m wrong. 

During my time of living with MDS and the consequences of treatment, I have met many amazing people. It seems no one has a straightforward diagnosis, treatment and recovery. We all work in different ways and heal in different ways. It’s so good to have an MDS family around you who identify with shared experiences and are willing to share and support and give of themselves. Evie is a teenager who bravely battles all this. Emma is a young woman who’s still not in remission despite 2 transplants. Fiona and I have known each other for over 20 years and she’s struggling to get her cells to make the right response to her transplant. The lovely Ted is also having a rough time following his transplant. While it can be difficult to experience what we go through, it’s vital that we still feel empathy and support others. It also shows that there is no one type fits all approach. 

Alongside those of us struggling there are some great examples of what we are aiming at. Russell had 3 transplants and went on to run marathons. I love reading the accounts of our members who are thriving and back at work. It’s always important to keep perspective and balance and not only see the challenges. 

Regular readers of my blog will remember that back in March I had a mini stroke. It was scary. I lost the power of speech for a while and had weakness and numbness in my arm. It didn’t last long fortunately but I have noticed some lasting effects. When I’m chatting I often can’t remember a specific word I want to use. I’m much more forgetful too and I don’t concentrate so well. 

As I finish this blog, as well as giving thanks for all the people who accompany me through these trials and tribulations, I also want to thank and give a big shout out to all those working in the NHS. In the last month between myself and my partner we have both been vaccinated with our 3rd dose of covid vaccine. Im also due a 4dose as a booster. We’ve also both had our flu jabs and Maggie had a shingles vaccine too. She also had her bowel screening done and tomorrow we both have our breast screening mammograms. Oh and I mustn’t forget that I’ve also seen a professor in haematology, received IVIG, seen a consultant rheumatologist, had surgery to remove my PEG and a few polyps and assess my stomach acidity via the bravo clip. That’s an incredible amount of skill and care that we all have access to in this country. It makes me feel very lucky and really blessed. My heart always goes out to the people from abroad who’s stories I read who can’t afford the treatment they need. Please protect the NHS at all costs. It’s priceless what we are offered. Let’s not follow other systems that don’t do nearly as well as our system. I know it’s not perfect but when it comes to looking after you when you are seriously ill there’s no better. 

Blood cancer awareness month and 20:20 Challenge

 September is always blood cancer month. It seems apt that my body decides to give me a reminder of how fragile my health is at times. You may remember I had a couple of fairly good weeks and was able to significantly reduce some of my medication. This pleased me no end. Then I gradually started to feel crap again. 

I was in more pain than usual. My hips are awful and really ache. My wrists jolt me every now and again with a sharp pain. Same goes for my ankles and knees except they also really ache. 

Then I started to have pains in my stomach and my appetite was lessening. This soon turned into a mega vomit of undigested food. The vomiting went on and on. At one point I was being sick every 2 hours throughout the night. In the end it was just dark green bile. I felt dreadful. I couldn’t eat. I couldn’t really drink and I virtually just slept for 24 hours. 

I gradually started feeling better but still have bad muscle and joint ache. My Reynauds Syndrome has started up again. My skin is also incredibly itchy to the point that wearing shoes and socks is a challenge as they irritate my feet and make them itch. 

I would’ve never believed that an itch could be a medical problem. My partner was giving me a shoulder massage as my shoulders were hurting and I had a headache. It felt really nice at first and then all of a sudden the itches started where my back had been rubbed. It was like a tens machine had suddenly come on and was buzzing with loads of fire ants all over my back. It was AWFUL. It was an hour before we managed to calm it all down and I could sit still once more. 

I try to not scratch when I’m awake but is really hard not to. I do pinch, slap or rub the itches. I also fidget and tap. I’m normally such a still person that people often look at me sideways. I have loads of different lotions and lots of medications for this problem. When it’s having a flare, it seems nothing much helps. 

The vomiting has stopped but I still get a lot of reflux. This goes on day and night. Last night even though I was sat up, I kept waking up with acid from my stomachs in the back of my throat. It makes you cough and sometimes choke. It also tastes awful and burns. 

When you have cancer and have had such serious and extensive treatment, it seems your body is never quite the same afterwards. It’s so difficult having to adjust to living in what I feel is a 95 year olds body. I just hope that 95 year old is having fun with mine. 

My appointment with the haematologist went well in as much as most of my blood results were good. There were a couple of tests that showed something had been or was going on. My neutrophils and CRP was raised. They couldn’t, other than that, work out why I had taken so many steps backwards and had such a rough time. 

I also saw the lovely new physio. I explained to Shana that I hadn’t been as diligent with my exercises due to feeling unwell and also a possible slight groin strain. She was ace and totally supportive. I also explained my mobility scooter had broken and she said Macmillan might be able to help pay for it to be fixed. I’m not so sure as I’ve asked for help from them before and even though my partner receives the state pension and I’m on ESA we have too much coming in! Pensioners have it hard when it comes to looking after disabled partners. If you receive your pension, it means you can’t claim carers allowance even though all the care you give to your partner saves the NHS and local authority loads of money. It’s just not right. 

As well as seeing the lovely Shana I also caught up with the equally lovely Katie who is the dietician. I’d completed a food diary for it but she only received 2 of 7 pages. She was good about hearing what I was saying and put no pressure on me to push more in while I was recovering. We can see more about where I’m at next month. 

At present we have some fairly nice weather. That means I can still see friends and family because I can sit out in the garden with them. Heaven only knows how I’m gonna get through the winter. I’m thinking about getting an awning to protect from the weather. Then I can put a patio heater underneath it. Has anyone else done this? Is it expensive? 

Yesterday I had a lovely time. My older sister and brother and their partners came over and we sat outside for hours. These are 2 of the 3 siblings that I met on the TV show Secrets in my Family. This is the link and password to the show should you wish to see it. 

https://fmebrandmanagement.box.com/s/3hz6o4ge1drxg5evx2aswqskba65e2bp

 

Password: sft17

I’m so blessed to have met them and for us all to find healing from the challenges our different childhoods had. Thank you Sandra, Linda and Russell for welcoming me, Gail and Dawn into your lives. I’m so pleased I was brave enough to find you. 

One of the things that’s been nice in between my last blog and this one is that I was able to take a funeral for a family that I did another funeral for just before lockdown. It was hard not to be able to do some of the things I would normally do but it was also good to be able to be alongside them through another family bereavement. Funerals are still being kept to a limited number of people. In this case it was 20 people. This means an awful lot of people can’t come. I suspect we will end up needing to have lots of memorial services in order to give others the chance to say goodbye. 

As I sit here and write this I have an awful pain under my ribs. I also have a bad ache in my right calf. My hips are on fire. My left ankle aches. My back, arms and torso is very itchy. My mouth is so dry that my lips sometimes stick to my teeth and my tongue sticks to the roof of my mouth. My eyes are blurry and sting and are very dry. I also feel very bloated and nauseous. The list of things we have to put up with is endless. 

Sadly because of not being so great I’ve had to go back on some of the medication I got off. It’s always a rollercoaster and I never know when I’m gonna have one of these dives. It can make planning for anything in advance difficult. However it doesn’t stop me planning because it’s always good to have goals and dreams. 

In my last blog I mentioned how worried I was about my eyes. Having been to the optician after suffering a very brief incident of partial blindness, I was told by the optician that I had moderate cataracts in both eyes and dot haemorrhages at the back of my eyes. I take most things in my stride. I have dealt with my mortality and death holds no fear for me. I’m lucky that I’m not often stressed and I’m not a worrier. When it comes to my eyes though, I am more cautious. The reason for this is I only have one eye that works. My left eye sees light and dark but even the large letters on the sight test are now wiggly blurred lines that I can’t make out. 

I asked my GP if I could go to Moorfields. The medic that phoned me about it was not someone I knew. She questioned me and was quite abrupt, initially she was saying I didn’t need a referral based on what the optician had said. I told her about the episode of temporary blindness and she said “you didn’t tell me that” to which I replied “you didn’t ask”  I’m so used to dealing with medics who know me well and know I wouldn’t raise something unless it was a real issue. In fact I’m more likely to put up with it for too long before I mention it. This woman wasn’t very empathetic and seemed a bit miffed at having to do the referral. It’s a shame but maybe she was just having a bad day. She did refer me and Moorfields were great when I finally got to the right place. 

When I arrived I went into the main building, then after queuing to get in, I was sent to another building over the road. After that I was sent back to the original building and had to queue all over again. When I got to the front of the queue I was told I couldn’t come on till 3pm as the letter said my appointment was 3,30pm. I explained I had received a call from the doctor asking me to come at 1pm. The man on the door said he had to go by the letter and wouldn’t listen to me or my partner. In the end another member of staff let us in. Two things are wrong here. Firstly no one should be sent to the wrong place, yet alone someone with a mobility problem. Secondly staff should listen to what the patient says to them. Why would anyone turn up 2.5 hrs early for an appointment? This just shows that not everyone has caught up to the fact that patients have a voice now. It’s also why we need patient advocacy for those who are not as assertive as I am and need some help navigating a confusing system. 

When I got to see the doctor she was lovely and reassuring. She explained the cataracts would need doing but not just yet. I said that’s what concerned me because I know it’s a straightforward procedure but with my wonky immune system, the chance of infection is higher. She said not to worry and they would take good care of me when the time came. She also said that whatever the optician had seen was now gone and the haemorrhages had been reabsorbed. I was relieved by this but also slightly perturbed. If I could afford to pay for it I could have cataracts surgery now. Instead the NHS says I have to wait until the symptoms start getting in the way of my quality of life. How annoying is that! I don’t do private medicine. I think it’s wrong that if you can afford it you get treated ahead of those who aren’t so fortunate. It’s just not right. Oh well, no point having principles of they don’t bite your bum from time to time. 

Thanks everyone for continuing to read about my exploits and recovery from cancer and a transplant and it’s complications. If you have any questions or comments for me I will happily answer. I appreciate all your messages and virtual support. It helps to keep me as sane and cheerful as I am. 

I also remember all the others I have journeyed with who sadly never made it. As it’s blood cancer awareness month, I would like to dedicate this blog to all those brave souls.