It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
As always, start at the first blog if you've not read before. I'm getting admitted tomorrow, and have to phone in the morning to check there's an empty bed. Getting my bags packed. SP50 suncream, passports, driving licence, evening wear, clean underpants plus the typical things every immunocompromised and mucositic patient needs - fizzy water, baby toothbrush, non-NHS pillow, pineapple juice (apparently), rice pudding (Y not), DVD boxsets, extension leads, ear plugs, disco lights (obvs), piano, Beethoven sonatas. Definitely going to get stop and searched. I think they start the chemo straight away. I'm told the house special is very good. As part of the workup I had to give various samples. Why is it embarrassing to collect some of them? When I was first diagnosed I was given a small bowl to 'catch' a urine sample, and told where the toilet was. In the toilet there seemed no place to balance the bowl with urine, so somehow I had to PU, collect, stop, put bowl on floor, finish PU. Then I had to walk back to my room past all the other patients staring at me and staff casually smiling "yes, that's a steaming bowl of my urine" and making sure not to spill it. Last week, I was given a very useful yellow funnel device, but it still left me wondering how women give a urine sample without peeing all over their hands. Ladies, how the actual? I also had to bring a stool sample. Walking down the corridor of a hospital with a bottle of your own blood seems OK. Sort of proud "yeah, that's my blood, pretty red and I didn't even cry", but urine is a little step up, especially when you hand it over and it's still warm. But stool. Yuck. It's just come out of your bum, and everyone will know that; somehow you have to negotiate the safest strategy to get it from bottom to pot. Mine involved layering toilet paper all over the bathroom floor and then crouching. Hickman line is doing fine; not being able to sleep on my tummy is a pain, stitches still feel a little sore, but OK. Got a bruise, to be expected when you skewer through skin and you only have 50 platelets. You then end up with two dangly ends. You can put these in a small bag. They didn't have any bags with sparkles so I went for leopard skin. (£1.50 each, I paid myself) Looking at my body now, I realise how much has changed, but this little beauty of a Hickman line is going to be a lifeline over next few weeks. That's it for today. Bit boring wasn't it.
Listen, I've no idea how many of you, if any bother reading this. It doesn't matter, there's no counter or tracker so I've literally no idea. I've been really touched by all the comments on my social media pages, texts, emails etc. I haven't responded yet, but I will do. It means a lot to know I connected with so many people over the years.
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OK. Not at all sure I'm blogging in the most efficient manner - I think I've lots to say, but what interests me may not be to everyone's liking and I don't want to bore you. As always, you'll need to start with my first blog at the bottom if you don't know what's going on for this to make sense! This blog is to tell you what's happening now and over next few weeks. As I mentioned previously, there's no cure as such for MDS, so treatment is 'supportive'. However, the hope is that chemotherapy prior to BMT will destroy the rogue stem cells with those pesky mutations. Unfortunately, as with everything in medicine, there is no guarantee about that, and there is a fairly high chance of recurrence (around 30%). At present, that's the thing I most dread - I can cope with the risks of infection, GVHD (graft versus host disease, we'll come to that), complications of chemotherapy (many and varied) etc. but the dread of going through all this, to be told in a few weeks or months time that it's recurred is what keeps me awake. For now, at least. Once or twice, I googled "relapsed MDS" but it doesn't make pleasant reading so I'm putting 'relapse' back in it's box for now. Over last 7 months, I've been advised to reduce risks of infection - mainly through being careful with what I eat (I thought blue cheese was fine, apparently I shouldn't have eaten it) and social distancing - as my white cells are low and probably don't work great. Nothing you can really do about low platelets except to reduce risks. For several months I had a mental block about riding my bike again, so had great fun riding these orange e-scooters. To make it safe, a colleague would cycle behind me with an emergency bag of platelets (just like being a US president) but when my platelets dropped to 55 I thought I should stop taking un-necessary risks. That bit's not true btw. I mentioned previously that I'd been on Darbo - long-acting Epo injections I give myself weekly. Aim was to stop my Hb dropping lower - it did make some difference, raising Hb from 88 to 95-100 where it's stayed. Bizarrely, despite my job, I've always hated having my own blood taken and still can't watch the needle going in, but getting used to injecting myself was OK. It did make me think what it would be like injecting your own small child with insulin to treat diabetes twice daily. However, to me it felt like a regular mildly painful stimulus just to remind me that something serious was going on. Pretty grateful again to the NHS - I think each of these retail around £440 so this is £12,700 (I paid for my own cotton wool).
As I said, don't know who my donor is, where they live, or where they're doing the donation. The donor will have had daily injections for 5 days prior, and then they will have a cannula in both arms, out of which blood is taken, passed through a cell sorter (where the stem cells are put to one side) and then the remainder of the blood is returned into the other arm. I'm sure it's not the most comfortable way to spend your day, but whoever you are, thank you for trying to save my life. I start my chemo on the Friday, they collect the stem cell donation a few days later. I keep thinking what if they start my chemo, ablate my marrow and then my donor gets sick. What if the van bringing the stem cells can't get petrol, or crashes. What if they spill it in the laboratory, or they slip over on the corridor on their way carrying the stem cell bag from the lab to my ward. What then? What if the new stem cells get to my bone marrow, but I'm not warm and welcoming enough and they decide to leave. And what should I do with my last few days of semi-freedom.
Over the years, I rarely donated blood - I always seemed to find excuses - and now feel Really Bad about that. More than that, I'm O NEGATIVE meaning my blood would have been really useful as it lacks the antibodies you get in rhesus positive or AB blood types. I did sign up years ago to be an organ donor, but to be honest don't know if I ever registered as a bone marrow donor. As a paediatric registrar in the 1990s I helped organise BMTs in children using the Anthony Nolan Trust. And for the last 30 years I have prescribed literally thousands of life-saving blood or platelet transfusions to my babies. Organ or blood donation is one of the most amazing things people do. If I can persuade just one of you to donate blood and/or join the bone marrow register it will go some way to assuaging my guilt! Contact Anthony Nolan or NHS bone marrow registries, or your own country registries if you're outside UK. Giving blood is easy and will make you feel amazing too. Do it.
When I presented in February my haemoglobin (Hb) was 87 and platelets 77. Typical Hb for someone like me would be 160-170, and platelets >200. Since then, I've been on weekly subcut injections of Darbopoetin = long acting Epo, which is the hormone that stimulates red cell production in the BM. Same drug Lance Armstrong and many others cheated with. Since then, my Hb has drifted along 90-100 but platelets have slowly dropped to 55. Trying to exercise, or just walk up stairs when you only have 60% of your normal oxygen carrying capacity makes you short of breath pretty quickly. It's a weird sensation - at rest I feel sort of OK, when I run, I am fine for about 4-5 seconds, I don't feel weak, but then the muscles can't replenish the oxygen, and you rapidly enter anaerobic metabolism, and heart rate hits 160+ pretty quickly. Despite what many of you probably think, the oxygen (O) you breathe in doesn't appear as the O in the CO2 you breathe out. Your CO2 comes from cellular metabolism of glucose and some amino acids. The O you breathe in combines with the hydrogen (H+) generated in your cells to form water (H2O) which is harmless. Without oxygen, the H+ builds up, and you get acidotic. That's what the muscle 'burn' is due to when you exercise hard. In the weeks prior to diagnosis, I was still pushing myself to run up hills. I was convinced I was just un-fit and getting old, and just needed to pull myself together. When your blood can't carry any more oxygen to the muscles, your body responds by increasing cardiac output - pumping harder and faster. That gets the same amount of blood and oxygen going around the system more quickly, increasing supply to the tissues. But there's a point beyond which you can't increase cardiac output further, and you stop delivering sufficient oxygen to all your tissues including your brain. At this point, you become light-headed. If you happened to be cycling to work up a hill, then you start to pass out and fall off your bike. The correct response at that point is to see a doctor, not to tell yourself you're a lazy, un-fit b*stard who needs to try harder. Lesson learned. A little too late. Platelets are tiny cells that help blood clot along with clotting factors, proteins like fibrinogen and other clever things. Whilst platelet count in most people is 200-300, you wouldn't know if your platelet count was as low as 50, and much of the time you'll be fine with a level of 20 - unless you get sick, septic or involved in major trauma. Recent studies in neonates taught us that not giving platelet transfusions until the level was as low as 20-50 was better than transfusing at higher levels 50-100. I've looked after lots of babies with levels <20 so I generally felt OK with the 77 I had. But, the first time I got in a car after being diagnosed, I was terrified of crashing, knowing that a stiff bump on the head or cut could kill me. I've also stopped climbing tall ladders and picking fights on a night out. But I do bruise easily, and sometimes without obvious reason. Seeing a bruise on you that has no explanation feels horrible. A visible sign your are properly sick. I've a small one below my eye that appeared yesterday without any reason. There's something unnerving and deeply uncomfortable about your body doing that, like passing blood or your skin changing colour. I don't know who my BM donor is. I think it's possible to find out in 2 years assuming etc. etc.... but whoever you are I am really grateful. I rarely show my emotions, but just thinking about my donor makes me feel quite emotional. Thankfully, people do it all the time. I don't know what I will feel like when I see the donated stem cells going in. Physically it will look just like a bag of blood, and nothing to feel. If it 'works' AND I don't relapse (that's another blog and an event I am dreading) then every red and white blood cell in my body forever will come from someone else. As will every lymphocyte, macrophage and antibody I make. In case you didn't realise (I didn't!), your bone marrow stem cells are of course the 'start' of all your immune system. So this is a little more complex than just getting someone else's stem cells to make my red and white cells and platelets. Altogether a little more profound. And scary. Not afraid to admit I am a little anxious. |
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