It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
I've never done anything like this before, and not at all sure if it's a good idea. If it turns out to be rubbish I'll just ditch it. I think I'm writing it for people I know so you can follow my journey. But maybe others will find it interesting or helpful. Spoiler alert - if you don't know, I've got some serious sh!t going on. It's not good news. I've told lots of you, but turns out there's quite a lot of people I haven't told. To be honest, it's quite tiring telling people, getting the right tone, being honest without being dramatic or down-playing. But as I now step back from work and the job I love, now's the time to let everyone know. Also, by the way, sorry if it's upsetting and you clicked a link thinking this would be more upbeat. At the end of February 2021 I had been feeling more tired than usual. If I'd had COVID then I'd have said I had long Covid, but I knew I hadn't. I told a medic friend that it felt like I couldn't "offload" enough oxygen to my muscles during exercise. It made no sense and I didn't really have any other symptoms. Turns out I was right, in that I couldn't get enough oxygen to my muscles, but not because of some weird and complex metabolic problem, but because I just didn't have enough blood AKA severe anemia. The 24 hours between turning up to work at 8.30am thinking I was going to work another normal day, and the next morning, when I finally plucked up the courage to tell my family, were the worst of my life. I'll save the gruesome and horrific day-of-diagnosis for another blog, but let's get to what's occurring and the diagnosis which is myelodysplastic syndrome. You'll see this is a rare form of 'blood cancer' and not, on any level, fair. I vaguely remember it from medical school days as an unusual disease of old people that can't be treated. Couple of years on average. Thankfully, things are a bit more optimistic nowadays and those clever people worked out how to test all manner of genes, and what sorts of treatments might help. I'll blog about what it's like coming to terms with being told you've got cancer, carry mutations, can't work anymore and might die, in another post. Most important priority for now, is to tell you what's about to happen and update those of you who already know some of this. Last week I had my 2nd bone marrow aspirate test - not a pleasant procedure. This was to see how many pre-leukaemic blast cells I have (<5% for what it's worth) and whether I needed additional chemo (I don't) before getting me ready for a haematopoetic stem cell transplant (HSCT) - 'bone marrow transplant' - BMT - to you and me. Yesterday I had a Hickman line put it - basically a large venous catheter tunnelled under my skin and inserted into my right jugular vein. Turns out that LOCAL ANAESTHESIA is amazing - you only realise that when it wears off, but boo hoo me, it's OK. Just makes me realise what I might have put my patients through all these years. Good old NHS I got a cup of tea afterwards, and custard cream biscuits, but not the hoped-for "I've been brave" sticker. Shortly, I will get admitted for myelo-ablative chemotherapy - I get a week of that, following which I receive the BMT - it just goes in like a blood transfusion through my line. Then there's a few days and weeks when the doctors do lots of blood tests whilst I try to avoid getting sepsis and then ....
That might be enough for now. I need to work out if writing this feels OK, or pointless, or un-necessarily 'open'. I'm not by nature someone who shares many details of my private life. Sure, I like to travel, work and meet people, and I love my friends and family, and my work buddies ... but I've never shared anything so personal and all-consuming, and I'm still not sure whether I should. So, that feels like an OK place to end for now. Love ya.
10 Comments
Pants
9/25/2021 10:26:50 am
You are definitely brave
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Sarah
9/27/2021 06:07:51 am
Nick this is firstly a sad read but also beautifully written - honest and from the heart. It’s a great way to keep everyone up to date on your own terms. It will also give people an idea of what you need from us all ( let us know in another blog). The content is obviously a total shock and difficult to read BUT you may well be saving yet more lives by talking about your experience and encouraging donations. You are a very special soul. I hope you know that. It’s easy to hear people’s words and not digest them. You are very very special. Looking forward to reading more posts and learning and understanding xx
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Anup
9/27/2021 06:53:22 am
Dear Dr Embleton,
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Rachel Bisset
9/27/2021 12:08:53 pm
Praying for you Nick 🙏🙌🏻
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9/28/2021 11:23:34 am
Hi Nick, I won't add to the comments above - all very well stated. I do want to let everyone know that your influence stretches well beyond the UK. You have been an inspirational member of our "NeoNuNet" - our fledling network of neonatology folk in sub-Saharan Africa. How do you find the time?? Not surprisingly, it seems that you have started with exactly the right attitude to overcome this and are facing the challenges head-on. And you have to - as we need you for the Network!
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Susan Hintz
10/5/2021 11:25:23 am
Dear Nick,
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Richard Fretwell
10/7/2021 03:43:36 am
Nick,
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Angela Huertas
10/7/2021 03:50:36 pm
What can I say. Read your October blog before this one despite you saying to read this one first. Glad you got your treatment. I’m hopeful for a speedy recovery and normalisation of your life! What a crash this must have been, stupid disease that manages to unbalance everything in a second. Im thinking of you.
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Julie Lanigan
12/13/2021 09:49:37 am
Hi Nick I only just heard this news from Mary, hence at T minus 12. I’m sad to hear you are going through this and will be thinking of you and reading the blog. Stay strong. Sending lots of love x
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11/23/2023 03:47:26 pm
Continuation of the News
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