It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
Well, it was a pretty filthy, and long, weekend. Not one I would choose to repeat, but worse things happen at sea as they say. The hangover has gone. Truth be told, I was feeling better on Monday and better still, Tuesday, but I can see I've only got so many chapters in me so wanted to spin it out a bit longer. After the serene beauty of watching the donor cells gently trickle in, all seemed good. Pretty straightforward. Had my myelo-ablative chemo, got the cuckoo onboard, just lie back and relax. However, to stop the new cells going on a total Mad One, and to keep what's left of my immune system from joining the party, you get 'immunosuppressive' medicines - namely Cyclosporin and Mycophenolate mofetil or MMF for short. MMF was discovered by an Italian Bartolomio Gosio in 1893 as a fungus that grew on rotten corn, and having produced it in crystal form Gosio showed that it killed ......Anthrax. Now that could be useful, but no one took the idea up until the 1900s when clever folk found it for the 2nd time and got all the credit. It was finally developed by a South African in the 1970s and has been used as an immunosuppressive since 1990s under name CellCept. It has anti-tumour, -fungal, -bacterial and -viral activity but because it interferes with purine/nucleotide synthesis (DNA type activity) it really screws up lymphocytes (the other main type of white cell aside from neutrophils). Trust me, us medics love these sort of facts. Lymphocytes love to reject transplants. Cyclosporin is also 100% natural, also coming from fungus, this time found in Norwegian soil, 'discovered' in the 1970s (but likely been around a few tens of millions of years) and used widely as immunosuppressive since 1980s. Next time, you see "100% natural" on a food product just think what that could do for you. Given that eating rotten corn or soil is out of the question in a CQC-3*-rated-NHS-trust, these are now of course artificially synthesised and then you get them intravenously. They don't make you feel great, especially the cyclosporin which gives you every side effect you can think of. Everyone reacts differently and maybe I was being feeble, but I had the worst headache ever. On top of that, the infusions each run over 2-3 hours following which there is a loud alarm beep at exactly ear level. Then there's the flush that follows each run over 10-20 minutes before the next one starts. Cue more beeping. And you get CellCept 3x/day and Cyclosporin 2x/day. Oh, and there's the kill-them-all antibiotic Tazocin 3x/day over 20 minutes. Even if the nurses weren't run off their feet (4-5 patients each) you can easily see how starting at 6.30am it takes until 2.30am some days to get through it all. Each time the infusion alarms, I roll over, mute alarm, press call buzzer, healthcare assistant dons apron, gloves, comes in to mute alarm, then goes to tell nurse, alarm beeps - repeat x10 etc. And then there's the regular BP, sats and temperature checks. Sleep deprivation adds to the misery and I apologise for not playing ward staff the piano during those dark days. Along with all those infusions comes a fair amount of fluid. Crawl out of bed, disconnect infusion pumps from wall supply, drag drip stand backward half-crouching, eyes half-shut, arse first, until you feel the toilet. Obsessively wash hands. Realise there's a few more mls of urine you could squeeze out, sit, repeat, hand wash, push drip stand, re-plug, roll into bed. Repeat ad nauseam. Doze off, alarm beeps. And plenty of nausea going with the headache. But finally with a cocktail of more drugs the feelings slowly shifted and by Monday I was feeling better. My blood tests are all fine. Small f fine. No infection so antibiotics stopped, eating better, on oral CellCept and Cyclosporin since Monday afternoon so no infusions (although they just told me I need phosphate infusion overnight, but that'll be fine). Got my appetite back a bit, but packing in the odd Fortisip - need to keep myself anabolic, so my fab-abs will have to remain hidden under their protective lipid layer. Three units packed cells and two of platelets in total so far - not bad [insert tiresome but regular reminder to donate blood here]. Platelets only 30 odd, Hb 90 - no immediate need to do anything.
But, I have no neutrophils, none, zero, nada. Neutrophils are pretty important - once they're made they don't hang around for long normally, but there's always lots of them out there on patrol, checking your defences, just waiting for bacteria. And I have none ... and it's a little scary. I'm in my lovely, en suite, room service 3x/day with laminar air flow and sealed window luxury pad, so there's not a lot getting in here. But we are all teeming with bacteria. Especially in our guts where we have something like 10,000,000,000,000 of them from more than 1000 different species. You've heard it before, but 1kg of our weight is bacteria and we have 100x as much bacterial DNA telling us what to do, compared to human DNA. And they are everywhere, all over your skin, in your ears, your mouth is a veritable cesspit of bacteria - every time you brush or floss you probably push a few into your blood stream. I'm still using the Octenisan Old Spice wash into all my nooks and crannies. Walking very careful. Don't want cuts or bruises, to bite my tongue when eating, chew my nails. I lie very still on bed sometimes imagining that if I keep very still and quiet the bacteria won't find me, and then when they do come I'll dodge them Keanu Reeves Matrix style. I could be over-thinking this. And trust me, I don't see myself as Keanu. More Russell.
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Rest assured I won't be writing daily blogs, so if you struggle through this one you might get a day off. But this was a Big Day in that I got my donated stem cells. My faux-fear that something would go wrong wasn't realised. But it would have been an awkward moment for all concerned to be sitting here with a largely ablated bone marrow and nothing to fill the space. Definitely job for the consultant.
In the end the donor didn't get Covid on a weekend night out, and no one tripped on the way from the lab. I watched as the i.v. 'spike' perforated the bag of what looks like dirty platelets - no accidental punctures, spills or slapstick moments - although a script writer could have a field day with the bag slipping over the floor to be crushed by the departing food trolley and my life disappear in a sea of slowly congealing hospital gravy. All very professional. And in around 30 minutes it was all over. Thank you Mx Donor, we love you. Now, It would make uncomfortable reading to take the First Dates analogy a bit further because even if I had offered a welcome cocktail, it would have been laced with rohypnol and I would have effectively kidnapped and drugged my date, and refused to call a cab. That's not me. So, it'll have to be the MAFS analogy winning out here. But even that isn't quite correct. I'll try to explain. MAFS with a complex pre-nup and no guarantee of love everlasting. Anyhow, I had a lovely post-coital moment playing my new cells music from my favourite Carlos, Gil, Stevie and others whilst I was infused with more anti-rejection drugs. What next? It'll take a few days/weeks for the new cells to find my marrow and set up home. But they may not be totally alone, as some of my pesky mutated stem cells will still be hanging around. You're going to have to give me a break here, because my knowledge of haematological immunology stops at stem cells, B and T cells, and antibodies. In recent years, just like A levels, they've had to make it more complicated as everyone started understanding it. The chemo I got was basically sent in as ground attack to give my marrow a good bloody kicking. Entirely reasonable behaviour given that until the mutations occurred we were getting on just fine. Bastards. The chemo will have killed quite a lot I hope (and I hope it really hurt), but there's always collateral, like feeling a bit shit and losing your hair. The harder you go in, the more collateral, so there's a balance. But it's quite likely there's a few of them bastards hiding under cover of darkness. Cowardice frankly, but hey ho. The stem cells are in part a new marriage, but they come with their own set of conditions. Like a cuckoo, they're taking over someone else's nest. They're going to pull their weight, and start making new red and white cells in time, but they've had a busy few days. Just 3 days ago they were happy in their own nest until they were jabbed in the bum, sucked out, jiggled about in a clever spinning blood sorting machine (technical term), bagged, transported, chilled etc. They're checking the pad out, unpacking, resting, bit of marrow Feng shui...I just got here, what's the rush? Like the cuckoo, the new stem cells will help to give a heave-ho to the mutant bastards left behind. Let's hope they find them all. But for the time being (and weeks and months) there may well be two gangs fighting it out - this is called chimerism. We've made a good start, set up T&Cs, and it is a good day. But .... this is only one part of a very complex disease, and the unique set of mutations I carry mean no one can predict what I will do next. But if you know me, that won't come as a surprise. Wasn't at all sure I'd write anything today. Hb had dropped to 77 yesterday, enough to earn some blood which got started in the evening, inducing yet another boring old temperature, resulting in blood cultures out of old Hickey and peripherally (awarded myself bravery sticker). So 2nd unit blood postponed until this morning, which I preceded by shower with good old Octenisan wash (basically an NHS version of Old Spice that gets rid of skin germs). I also got a platelet transfusion - they had been 17 (should really be >200) so perhaps were lower still by the time it got started. First time I've ever had something from someone else inside me (rabbits excluded obviously, bizarre a fluffy animal got there before a human). It sounds so normal "blood transfusion" but these are cells which literally started life in someone else's body. Possibly yours. Thanks. I do this weird thing of holding the back of my hand in front of me and staring at the blue veins thinking that's not all really me. I'm 'different', I get it. After thinking I'd defeated the worst of the mephitic bile that is Rabbit ATG, the team had another cheeky one lined up today, intravenous cyclosporine. Another bastard that plays with and befuddles the brain, whirly headache and yet again meant I dropped BP. However, this time I re-earned my place in the nurses good books by pressing the buzzer. {.....I learned back in 1990 how important it is to stay on the right side of the nurses. Ask any nurse who's worked with me in the last 30 years. They will all say I do what I am told. Problem being then, that because they don't always tell me, there are occasions where I go rogue....}. To tell the truth, I'm actually a little embarrassed at how easily I drop my BP, thought I was as hard as Maximus. It's been a better day than yesterday I think. Had some nice chats and found good use for the drip stand. But the reason for squeezing a blog out of not very much is to remind that it's "T minus 1" and I've got a first date with my new stem cells tomorrow. Not sure what they're going to look like, whether I'll fancy them and how we'll get on. I'm sure they'll be up for it, they volunteered after all, and might have come a long way. Or they might be true Geordie from just around the corner. It's more than First Dates though. No room for embarrassing pauses or crappy jokes over dinner, and a chance for a separate cab on the way home. Really it's Married at First Sight. Hoping it doesn't end in divorce or murder.
And that's the main point, that getting my new cells isn't somehow the end of it. Emotional yes, hugely so, but for me no sense of relief that's all over. It's not. Not by a long way. More immunosuppression, bloods, headaches, nausea, drugs, temperatures, complications, sore mouths, skin and the lurking fear of relapse. A mini-celebration maybe. Tequila and pineapple smoothie. And a big shout out to my donor. I only wish I could have been more thoughtful and donated more when I was well. I live with that regret. I could have been that hero. Take note the rest of you. For now Mx Donor - I love you. x I've been genuinely overwhelmed with all the comments people have posted both on the blog, but also on Facebook, twitter, email, msg etc. It's great hearing from everyone and sorry not to respond directly to all of you. Also many thanks for the comments on how to get piss into a bottle without getting it on your fingers. My heart goes out to person who had to shit crouched over a sheet in front of medical students, admiration to the person who shat in a yoghurt pot (hopefully not the little ones) and Mrs C Hart for her detailed drawings of urine collection with a gravy boat. But you're not here to hear tales from others. More about me. Finally admitted on Friday and have had two rounds on i.v. chemo everything going via that Hickman line ( I think he/she/them deserve a name). Iv'e also swallowed a lot of tablets- surprised how institutionalised I've become - just swallowed without asking what they were. Urso, acyclovir, Ivermectin amongst others I think. Busulfan works by sticking to one of the two DNA strands, thereby stopping it dividing, but also apparently causes lots of side effects - in fact, easier to list the side effects it doesn't cause. None. You also get given clonazepam to stop you getting a HIE 1/2 type presentation but that just gave me roundy roundy eyes. Other drug is fludarabine which is a purine analog and thereby stops DNA repair. Nice. Hospital food - not going to waste any time on this. You basically get room service twice a day and breakfast in bed. Complaining about free food in a free health service is a first world problem. It was all fine. (small f fine). Chemo Fri/Sat/Sunday was all totally uneventful- - wasn't even sure there was anything active in the infusions. Me {to nurse}: "Not sure I feel that chemo" Nurse: [scoffing] "don't worry love, it's coming". Monday was altogether rather different. Enter the rabbit. Rabbit ATG, an evil concoction of anti-thymocyte globulin (ATG) designed to seek and destroy your lymphocytes (lymphocytes being the cells that fight virus/fungal infections amongst many other microbes). As the lymphocytes start to complain they release loads of chemical ' cytokines' which basically announce "party time" to your inflammatory system. You also get quite a temperature and tachycardia. I had been told to push the buzzer if I felt sick, but lay there shivering like really bad flu so when I did ring (or maybe I didn't, they found me perhaps), Systolic BP was only 50/. That's a fairly average BP for one of my 25 weekers. As punishment for not ringing the buzzer, they then give you loads of fluids to ensure you are up peeing all the time - this time in cardboard receptacles that I worry lack the structural integrity to cope with the volumes of hot stuff I produce. Today I get more Fludarabine and more naughty rabbit. Rabbit Rabbit Rabbit Rabbit Rabbit Rabbit Rabbit Rabbit Rabbit Rabbit Rabbit Rabbit Rabbit Rabbit Rabbit Rabbit; You got a beautiful chin, You look like gin, you got a beautiful face, You got taste, You tell me beautiful lies, You got beautiful thighs, You got more rabbit than Sainsbury's, It's time you get it off your chest, Now you was just the kind of girl to break my lymphocytes in two, I knew right off when I first got my infusion from you, But how was I to know you'd bend my earholes too, With your incessant destruction? You're becoming a pest. Now you're a wonderful girl, You got a wonderful smell,You got wonderful arms, You got charm, You got wonderful hair, and a lovely pair (of Y shaped bonding site obvs), Now I dont mind havin' a chat, But you have to keep givin' it that inflammatory response etc. Platelets and Hb are now dropping - they might give me some blood today a little reminder please GO AND REGISTER TO BE A BLOOD AND MARROW DONOR. Big love and thanks if you already do. You are saving my life. I could be getting your blood today.
Just wanted to say a little something about human touch. I am not a touchy feely person. Not at all. But when I was sick and a little out of it, it felt so good for someone to put their hand on my shoulder, wipe the hair out of my eyes and tell me I'd be fine (always know I will be, but it's nice to hear it). Touch of humanity in a scary world. I've written about this in our Butterfly project. It's the little things that count. If you're feeling up to it you can see that project here. My room's directly opposite the doctors office so they didn't have far to come when I was being attention seeking. I watch them in there, busy ensuring their portfolios are replete with reflective comments and ordering "blood tests". Not sure what else haematologists do. The rest of us order blood tests and also do stuff. Well, ask nurses to do stuff. Bit frustrating I can't find out what's wrong with the other patients. Pretty sure I could offer an opinion. Hardly watched TV, haven't watched any DVDs. Quite frankly, not at all sure what I've been doing. Frustrated with my lack of productivity. All rather surreal. Sleep's been OK, ear plugs and a mask. Until the drip finishes at 6am. As always, start at the first blog if you've not read before. I'm getting admitted tomorrow, and have to phone in the morning to check there's an empty bed. Getting my bags packed. SP50 suncream, passports, driving licence, evening wear, clean underpants plus the typical things every immunocompromised and mucositic patient needs - fizzy water, baby toothbrush, non-NHS pillow, pineapple juice (apparently), rice pudding (Y not), DVD boxsets, extension leads, ear plugs, disco lights (obvs), piano, Beethoven sonatas. Definitely going to get stop and searched. I think they start the chemo straight away. I'm told the house special is very good. As part of the workup I had to give various samples. Why is it embarrassing to collect some of them? When I was first diagnosed I was given a small bowl to 'catch' a urine sample, and told where the toilet was. In the toilet there seemed no place to balance the bowl with urine, so somehow I had to PU, collect, stop, put bowl on floor, finish PU. Then I had to walk back to my room past all the other patients staring at me and staff casually smiling "yes, that's a steaming bowl of my urine" and making sure not to spill it. Last week, I was given a very useful yellow funnel device, but it still left me wondering how women give a urine sample without peeing all over their hands. Ladies, how the actual? I also had to bring a stool sample. Walking down the corridor of a hospital with a bottle of your own blood seems OK. Sort of proud "yeah, that's my blood, pretty red and I didn't even cry", but urine is a little step up, especially when you hand it over and it's still warm. But stool. Yuck. It's just come out of your bum, and everyone will know that; somehow you have to negotiate the safest strategy to get it from bottom to pot. Mine involved layering toilet paper all over the bathroom floor and then crouching. Hickman line is doing fine; not being able to sleep on my tummy is a pain, stitches still feel a little sore, but OK. Got a bruise, to be expected when you skewer through skin and you only have 50 platelets. You then end up with two dangly ends. You can put these in a small bag. They didn't have any bags with sparkles so I went for leopard skin. (£1.50 each, I paid myself) Looking at my body now, I realise how much has changed, but this little beauty of a Hickman line is going to be a lifeline over next few weeks. That's it for today. Bit boring wasn't it.
Listen, I've no idea how many of you, if any bother reading this. It doesn't matter, there's no counter or tracker so I've literally no idea. I've been really touched by all the comments on my social media pages, texts, emails etc. I haven't responded yet, but I will do. It means a lot to know I connected with so many people over the years. 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.
Over the years, I rarely donated blood - I always seemed to find excuses - and now feel Really Bad about that. More than that, I'm O NEGATIVE meaning my blood would have been really useful as it lacks the antibodies you get in rhesus positive or AB blood types. I did sign up years ago to be an organ donor, but to be honest don't know if I ever registered as a bone marrow donor. As a paediatric registrar in the 1990s I helped organise BMTs in children using the Anthony Nolan Trust. And for the last 30 years I have prescribed literally thousands of life-saving blood or platelet transfusions to my babies. Organ or blood donation is one of the most amazing things people do. If I can persuade just one of you to donate blood and/or join the bone marrow register it will go some way to assuaging my guilt! Contact Anthony Nolan or NHS bone marrow registries, or your own country registries if you're outside UK. Giving blood is easy and will make you feel amazing too. Do it.
When I presented in February my haemoglobin (Hb) was 87 and platelets 77. Typical Hb for someone like me would be 160-170, and platelets >200. Since then, I've been on weekly subcut injections of Darbopoetin = long acting Epo, which is the hormone that stimulates red cell production in the BM. Same drug Lance Armstrong and many others cheated with. Since then, my Hb has drifted along 90-100 but platelets have slowly dropped to 55. Trying to exercise, or just walk up stairs when you only have 60% of your normal oxygen carrying capacity makes you short of breath pretty quickly. It's a weird sensation - at rest I feel sort of OK, when I run, I am fine for about 4-5 seconds, I don't feel weak, but then the muscles can't replenish the oxygen, and you rapidly enter anaerobic metabolism, and heart rate hits 160+ pretty quickly. Despite what many of you probably think, the oxygen (O) you breathe in doesn't appear as the O in the CO2 you breathe out. Your CO2 comes from cellular metabolism of glucose and some amino acids. The O you breathe in combines with the hydrogen (H+) generated in your cells to form water (H2O) which is harmless. Without oxygen, the H+ builds up, and you get acidotic. That's what the muscle 'burn' is due to when you exercise hard. In the weeks prior to diagnosis, I was still pushing myself to run up hills. I was convinced I was just un-fit and getting old, and just needed to pull myself together. When your blood can't carry any more oxygen to the muscles, your body responds by increasing cardiac output - pumping harder and faster. That gets the same amount of blood and oxygen going around the system more quickly, increasing supply to the tissues. But there's a point beyond which you can't increase cardiac output further, and you stop delivering sufficient oxygen to all your tissues including your brain. At this point, you become light-headed. If you happened to be cycling to work up a hill, then you start to pass out and fall off your bike. The correct response at that point is to see a doctor, not to tell yourself you're a lazy, un-fit b*stard who needs to try harder. Lesson learned. A little too late. Platelets are tiny cells that help blood clot along with clotting factors, proteins like fibrinogen and other clever things. Whilst platelet count in most people is 200-300, you wouldn't know if your platelet count was as low as 50, and much of the time you'll be fine with a level of 20 - unless you get sick, septic or involved in major trauma. Recent studies in neonates taught us that not giving platelet transfusions until the level was as low as 20-50 was better than transfusing at higher levels 50-100. I've looked after lots of babies with levels <20 so I generally felt OK with the 77 I had. But, the first time I got in a car after being diagnosed, I was terrified of crashing, knowing that a stiff bump on the head or cut could kill me. I've also stopped climbing tall ladders and picking fights on a night out. But I do bruise easily, and sometimes without obvious reason. Seeing a bruise on you that has no explanation feels horrible. A visible sign your are properly sick. I've a small one below my eye that appeared yesterday without any reason. There's something unnerving and deeply uncomfortable about your body doing that, like passing blood or your skin changing colour. I don't know who my BM donor is. I think it's possible to find out in 2 years assuming etc. etc.... but whoever you are I am really grateful. I rarely show my emotions, but just thinking about my donor makes me feel quite emotional. Thankfully, people do it all the time. I don't know what I will feel like when I see the donated stem cells going in. Physically it will look just like a bag of blood, and nothing to feel. If it 'works' AND I don't relapse (that's another blog and an event I am dreading) then every red and white blood cell in my body forever will come from someone else. As will every lymphocyte, macrophage and antibody I make. In case you didn't realise (I didn't!), your bone marrow stem cells are of course the 'start' of all your immune system. So this is a little more complex than just getting someone else's stem cells to make my red and white cells and platelets. Altogether a little more profound. And scary. Not afraid to admit I am a little anxious. 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. |
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