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.
22 Comments
Ruurd
5/22/2022 11:56:11 am
Great to hear your are getting better as it also showed on camera recently! Maybe getting in the NEJM with such a moving subject is even better then with some big RCT although I must admit so far I never managed to get in! Take care and hope to talk to you soon again!
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Kit Yin Embleton
5/22/2022 12:55:03 pm
Good to know Nick. You are indeed a hero and you don't need to prove that to anyone. Keep at it, lots of love Kit Yin xx
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Pants
5/24/2022 04:28:28 am
:) .... truth is, I've only ever needed to prove that sort of nonsense to me. no one else cares. but a lot of my life has been proving to myself I could do things if I wanted! I blame school for never believing in me and always putting me in the bottom sets!!
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Tomit
5/22/2022 01:58:02 pm
Onwards and upwards!!!
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Michelle
5/22/2022 03:44:14 pm
You’re certainly getting to try out some fancy pants treatments! Always nice to hear how you are fairing.
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Pants
5/24/2022 04:23:22 am
I am the very definition of Fancy Pants
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Khalid Haque
5/23/2022 04:13:26 am
Glad to know you are getting better. Keep eating all those creamy things and damn the fungus
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Kat
5/23/2022 05:07:20 am
My dad suffers from the same disease, but he is not a candidate for a transplant. I have been following your journey for a while. Don't know what to write- "stay strong" doesn't sound good enough. I hope these chocolate eclairs will just keep tasting better and better. All the best from Finland :)
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Pants
5/24/2022 04:25:43 am
thanks you for your interest and wishes. It's a very complex disease and I'm learning lots. I'm sorry he is not a candidate for transplant but hope he stays stable. please send him my best wishes
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Andrea Storey
5/27/2022 11:43:55 pm
Good to see you on the EI Smart yesterday. Really glad you're feeling better Nick. 😊
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caroline king
8/1/2022 09:07:58 am
Hi Nick, only just seen this for some reason so quite a few months passed, hope things are still improving. You are managing all this mayhem amazingly. Caroline x
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Digman
8/24/2022 12:41:36 pm
Nick gutted to hear of diagnosis , we walk past often on way to Paddy ‘s with the dog and think of you . Glad things seem
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10/22/2022 01:53:23 pm
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12/20/2022 03:50:15 pm
İnstagram takipçi satın almak istiyorsan tıkla.
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1/7/2023 08:26:59 pm
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6/29/2023 05:32:03 pm
En iyi ağrı ilan sitesi burada. https://agri.escorthun.com/
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Paul
2/21/2024 12:48:54 pm
Young 40s male just diagnosed with MDS too. Would love to chat if you've time. Thanks Paul
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Paul
2/23/2024 01:52:13 pm
Thank you. Have sent email. Paul 2/21/2024 03:13:45 pm
Hi I’m getting a bmt in May, I have T cell lymphoma. Can I ask what conditioning regimen you did please
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nick
2/22/2024 01:36:06 am
sorry I can't remember! Whatever the recommended regime was in UK at the time
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