It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
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.
16 Comments
9/27/2021 04:38:42 am
Hope you'll be doing well and all this turbulence will stay as very bad memories. You' ve saved many lives yourself. You deserve the best
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Laura Astall
9/27/2021 04:43:13 am
Best of luck Nick - you’ve popped into
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Sarah
9/27/2021 06:12:12 am
These posts should not have the potential to make me laugh. But they do. Well done :-) don’t underestimate the value and power of a laugh ro smile. It kicks anxiety’s butt which is always a good thing.
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Helen
9/27/2021 07:34:19 am
Let's just hope that your donor isn't a Sunderland supporter 😜
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Esther and Maarten
9/27/2021 09:08:29 am
Hi Nick. Typically Nick style, this blog. Makes me smile. Wish you all the luck in the world and big hugs from the Zubli's.
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Sara Fernandes
9/27/2021 09:46:45 am
Don’t worry your fears about boring the reader are ill founded - for me anyway! I can just about begin to understand how bloody anxiety forming this all is for you and those closest to you and I really hope that the process of writing about it helps you in processing everything, as much as it helps those rooting for you, to understand the process in all it’s glory. Thanks for explaining it all so helpfully and clearly. Wishing you all the best with the treatment and just wondering - is wine totally out of the question right now…or not? Asking for a friend ….
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Angela
9/27/2021 12:09:00 pm
Nick, what a lovely way to keep us up to date with your progress. In your own time and we still get to appreciate your humour even in such emotional circumstances. We are with you every step of the way. Sending love. Xx
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Anupam Lall
9/27/2021 12:35:16 pm
Thanks Nick for keeping all of us informed about your situation
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Amy
9/27/2021 01:03:49 pm
This is a really lovely way to keep us up to date for as long as you’re happy to share so thank you! Your personality definitely comes across in your writing; one of the few people who could make me laugh when reading about something serious! Got everything crossed for a smooth transplant for you x been registered as a donor since I worked on ward 3 so I know how beneficial it will be if even 1 person reads your story and decides to sign themselves up as a result xx
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Guy
9/27/2021 01:46:45 pm
A lovely read, Nick. Wishing you the best we have to offer in the NHS, wishing you the best response, the best recovery.
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Dipak
9/27/2021 02:27:27 pm
Love the blog - it’s an amazing way to share your journey. Stay strong and keep writing when you can. Best wishes from Manchester. Dipak x
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Marieke
9/27/2021 02:50:57 pm
Hi Nick,
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Tomit
9/27/2021 03:43:47 pm
Gruesome as the job of a donor sounds I wish I was a better match and would swap places with them in a heartbeat to help you get better. The world still needs Dr Pants x
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Leon Cleife
9/28/2021 01:13:58 am
Well, Nick, what on god’s good earth can I say!?!
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Kit Yin
9/29/2021 05:41:55 am
Wishing you all the best Nick, praying for it a good outcome, thank you for your updates. We're all behind you my lovely. 💕
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Angela Huertas
10/7/2021 04:12:51 pm
Thank God for donors. You are so funny! Your last days of freedom? Just do the same over and over again, ah! And we must plan a study day in Cartagena!
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