It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
This is likely to be a really boring post. Feel free to skip it and wait for a more interesting blog. I've tried and failed every day for the last 10 days to write something, but just couldn't motivate myself to write. Nothing bad has happened. In fact, nothing's happened. Literally nothing. My blood counts are all 'fine'. Hb somewhere around 110g and neutrophils somewhere between 1.7-1.9. My platelets had shot up to 230, but then about a week ago were back down to 95. That might seem alarming but I'm reliably assured that is perfectly normal to have a brief period of over-excitement in a new relationship before settling. 95 is enough.
Main issue is relentless mix of mild exhaustion, mild nausea, and moderate anorexia where most foods smell and taste disgusting, After trying a range of foods I can manage most fruit juice, Coca Cola etc. especially with ice; just about manage hot chocolate (decent energy & protein in the milk but not really a favourite); ice cream; apple pie etc. But anything bread, wheat, meat, cheese or anything with a smell makes me nauseous. On the plus side I've stopped losing weight. Fortisip (300kcal, 18g protein) in 125mls 2-3 times a day definitely helps. I'd mentally prepared myself for feeling tired, and "changes in taste or appetite" but hadn't expected to feel nausea/anorexia and dislike eating this long post transplant and chemo. Now 6 weeks since my chemo, and again I've been reassured that this is normal but after a while it sort of drags you down. and that's mixed in with total lack of motivation to do anything. Literally anything. I even find myself staring at a blank TV screen when a show finishes, wondering if I can be ar$ed to change channels. Obviously endless Netflix & similar that I could watch. Just can't be bothered. I could read medical papers, or watch webinars etc. Just can't be bothered. Still go to clinic twice weekly. Unfortunately nothing truly positive from a disease perspective can come out of those visits. The precise blood counts don't really matter (unless all my neutrophils suddenly disappeared - very unlikely). My cyclosporin levels clearly need careful monitoring and dose adjustment, and could cause some kidney/liver impairment, but again can all be dealt with. Nothing about the visits/bloods are really about monitoring disease progress; it's all about the side effects of the treatment for the disease. With other diseases as things improve (or worsen) you might feel less pain, or have X-rays or scans to check for disease remission etc. If you were a premature baby, you could rightfully see weight gain, coming off ventilation or oxygen as the disease getting better. But until I get a bone marrow at T+100d there's not much to see or feel to show 'progress'. Even at day 100 there's along period of further uncertainty. Of course, I don't really want any excitement before then, and this may all sound like "oh poor me" but it's not. Many others struggle with much bigger challenges. I'm just trying to explain how exhausted and demotivated you can get. Everyone will experience it differently. Personality clearly plays a big role here. I love projects, mainly academic/research or work related, but could be house related etc. There's little point planning projects when I've no idea when or if I'll get to do them. I'm goal orientated but try to tell myself to enjoy the journey getting there. I like "big picture" and get bored with some of the necessary detail. Like following the instructions. If you're always generally right, why would you follow them? A few of you may think that any amateur attempt to group people into 1 of 16 personality types is "Mickey Mouse" psychology, but I first completed a version of this 20 years ago and it definitely opened my eyes to how strange all of you are. You can take the test here - only takes 10 minutes www.16personalities.com . Take the test and see. If you are borderline on 1 or 2 domains it might give a result that doesn't feel quite right, but most people I know tend to agree with the type they are given. Being caring, sensitive, insensitive, self-obsessed, brave, clever, stupid are possible with any personality type. This is not about how you behave in public, this is what motivates you. I am INTJ-A , and there's nothing about this journey I can enjoy, or influence in any way, and suspect my lack of opportunities for projects because of circumstance or energy, contributes to just feeling flat and frustrated. Other personality types will struggle just as much, but in different ways. Took me half of my adult life to realise how different I was compared to others. I simply didn't understand why you weren't all interested in what interested me. When I tried to explain to you, your eyes just glazed over and you told me to get on with the ward round. How could you not be fascinated by those things? If you do the test and want to, share your personality type in a comment or message. But NEVER share it online/Facebook as that's how Cambridge Analytica rigged the US elections and Brexit vote. They worked out how caring, sensitive and easily swayed you are, then targeted posts at you. Fools. Of course, I've just done that here, however, as I'm always right (even if I'm occasionally wrong, which I never am) and can outsmart them all, I have no fear in sharing. As I said, I told you this was going to be a boring blog, and thank you for reading this far, or at least pretending to. The boring bone marrow in the title was also a pathetic and perhaps not particularly funny way of linking in that I had a bone marrow test last week. Purely for research purposes. I might do a separate blog about research, but this was my way of being vaguely heroic for the advancement of science at some (albeit brief) personal cost. I.e. it is still bloody painful as they were sucking it out even though hopefully it all belongs to someone else. And if any of it is still mine, well then it can f*&k off as I don't like you anymore. I felt this was my penance for not donating blood over all those years. Thank you Mx Donor I am very grateful for what you did for me, and thank you to all your heroes who always donated, or have been persuaded to donate blood after reading the blog. As Nike said if you haven't already, 'just fucking do it'. Right, now that I've done that, I can go back to staring at walls. Thanks for listening x
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