It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
Long delay since my last blog. Read on, no disasters. Trigger alert - photos of blood and bad language. I struggle with writing stuff down, partly because I think it’s a bit boring for others now, but I do get asked how I’m doing so I figure maybe I should write another blog page. For a long while every day was ground hog day. Where did I get to? I had my transplant in October, I didn’t die from septicaemia and my blood counts all started to come back fine. November I was exhausted, but by December I had more energy, walking more using a cunning disguise of sunglasses and masks which probably only served to draw more attention to myself in Newcastle mid-winter. New Year’s Day I started falling apart with graft versus host disease, GVHD, when the new donor T cells started attacking my mouth and liver. Felt dreadful for most of January, started getting a bit better and steroids were amazing. Most of February though I was still on soup and yoghurt. Amanda Trollope’s virus came and teased my B lymphocytes. Still no apology. Even though I felt better in March I wasn’t really on solids as my mouth was still a sewer. Then my excessive swilling of oral steroids resulted in the inevitable oral candida. Nystatin did nothing, nor did Fluconazole. I remained on Posaconazole which is a super expensive oral anti-fungal with activity against almost everything. But with a suppressed immune system you can’t shift candida. If it gets hold that’s it and explains why it’s so serious for preterm babies (and others with dodgy immune systems) once it ‘gets in’. Every morning I look at my tongue trying to work out if it looks a little less disgusting. It does look better in last week or two but it’s still there. I’ve tried scraping it off. With some gentle scraping you can generate a bit of yoghurty froth. But you can’t detach the hyphae which are firmly attached. I don’t want to rub too hard and push the fungus into me. I’m guessing this picture is making it less likely Amanda will ever snog me again. Her loss. Over the last few weeks my steroids have been slowly decreased. Really slow 1mg decrease every two weeks. But I’m now down to 11mg. This has mainly been achieved by starting a new treatment, I’ll get to that in a bit. I had my Hickman line taken out 3 weeks ago so no longer is there anything dangling out my chest and waking me at night. Procedure was OK and I had a nice chat with the registrar as he first just pulled it. Tied string to the end, then to the door handle and a big hard slam but to no avail. Some local injected and then a nice sharp scalpel alongside it taking care not to slice into it because my right atrium blood would just empty onto the bed. After the incision you then do “blunt dissection” with forceps and no sharp metal. Slightly weird feeling having forceps poked in and them some furtling, but if you didn’t know what was happening and you didn’t look it would be fine. Then another bone marrow biopsy. I took a photo this time of it – the blue handled object in the photo below. Need a handle to get a good bit of purchase. Just like a corkscrew. Good firm push and then some sucking. Best not to watch. Still smarts a little. Bone marrow looks OK I'm told, working well, no rogue elements to be seen for now. Obviously quite a way to go, but I’ll take that for now. GVHD can go on forever, but I’ll take a cacky mouth and itchy rashes over being dead. New treatment is called Extracorporeal Photopheresis (ECP). I get it for 2 days every 2 weeks. Decent sized cannula in your elbow out of which a machine takes some blood - maybe 150mL. Nothing to feel but with a cannula in your elbow you can’t bend your arm so I can’t email or write when I’m on the machine. But this is then an excellent time to do PhD supervision sessions and project meetings. I blur the background. But if I feel my heroism hasn’t been sufficiently acknowledged, I might turn my video off, slightly tilt my laptop so you could see the machine, and then turn my video back on without the blur until everyone has seen said machine and then I apologise and pretend I forgot to blur and so on. The 150mL of blood goes into a centrifuge where it gets spun around. This leave red cells at the bottom, plasma at the top and a small layer (Buffy coat) in the middle where most of your white cells are. This is put to one side, the 148mL goes back into you, and then whole process is repeated. After several cycles of that, the few mls of white cells are then mixed with a psoralen which makes the white cells more sensitive to light and UVA light is shone at them (all inside the machine, nothing to really see). The combination of being spun around and made to feel really dizzy, and then given a phototherapy sun tan makes the lymphocytes more chilled about life and they become less pro-inflammatory. Same thing happens the next day. For a few days after I felt a bit tired, but my mouth is better over last few weeks. I’m now being weaned from stage 1 foods onto lumpy solids, and it feels great. I feed myself. Still a bit of choking and pain on swallowing but I can drink coffee again, still can’t do bread or anything ‘meaty’ and most fresh veg still tastes like mud. I can manage chocolate eclairs, chou pastry, crème caramel and I’m finally putting weight on again. Basically, if you can put cream on it I can eat it.
Also, some academic success. Getting a paper in a medical journal like New England Journal of Medicine, is often seen as the pinnacle of many research careers but very few people ever read those sorts of magazines. Unlike Closer. Massive readership, high impact, top drawer. Sadly, it was in relation to Georgina and Cristiano’s loss of a co-twin and our Butterfly project, but media has a short attention span and you get the message out when you can. That’s probably enough for now.
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