It's pants
My journey with Myelodysplastic Syndrome and Bone Marrow Transplantation
I've thought about writing this post for 48 hrs now but somehow couldn't find the energy. But the Big News is that I did get home a couple of days ago after 27 nights. The staff on the ward have been amazing. Caring, efficient, professional; most importantly I really trusted them. Before I went in, I imagined week 1 would be horrific with chemo, week 2 would be anxious and exhausted, week 3 I'd be on the exercise bike, and by week 4 I'd be exercising, answering emails, catching up with zooms. Whereas, even now, I get tired just eating or simply brushing my teeth. Getting home means better sleep, choice of foods. The smell of most foods (even ones I could eat) makes me nauseous and many still taste weird. Fruit juice and ice gets me through the day. I was gutted to find out that Orangina actually has small amounts of grapefruit in it (forbidden if you are on cyclosporin!).
Fortunately, I live close to the hospital, so getting back to clinic yesterday was simple. I have to go twice weekly for bloods, check my Hickman line etc. I still sit in the clinic waiting area trying to work out by looking what other conditions people have. Completely pointless really, as there are no tell tale signs of most haematological disease except extreme pallor and those of us with no hair. Getting to this stage is a good start - I'm now entering the "100 days". At that stage I get another bone marrow biopsy where they look to see the number/proportion of any residual mutated stem cells. Hopefully, the chemo and the cuckoo will have done their job, but it is still possible to have some residual cells at that stage and still get through. But it is the thing I most worry about. Having two cell "lines" is called chimerism - I'll talk more about this another time. And I still need to share my frankly ridiculous behaviour on the horrific 'diagnosis day', telling the kids and 'being brave'. But for now, that's all folks. Oh, btw neutrophils are 1.22, and my platelets are the highest they've been in 2021. Not bad ...
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Taking a stack of oral tablets every day is a pain, but banana flavour energy drinks - Fortisip - actually help them go down and disguise the taste. Some are really foul. Cyclosporine smells like weed (nurses told me that). Chewable Magnesium is disgusting. But aside from that minor irritation, a bigger problem is smell and taste. I can’t now stand tea or coffee which is quite upsetting as I used to love drinking that. Many other foods also taste different and I’m now really struggling with hospital food, so family bring in an evening meal which makes all the difference. Many foods I can’t stand the smell of – just about any food smell triggers mild nausea, even food I could eat. Lips tingle and mouth feels strange, but thankfully I didn’t get any real mucositis or ulcers. Of course, cyclosporine is the guilty party, I’m sure. As punishment for getting a platelet count >50 (it’s now 111 woop woop!) I get to give myself Tinzaparin injections every day to stave off blood clots.
Slowly getting used to be completely bald, but the only mirror is in bathroom, so I only see myself once/day when I shower. Deeply disturbingly, I seem to look more like my younger brother than me with no hair. When I pull the shower curtain back, I suddenly find he's been watching me. Worse still he’s also naked. Rather alarmingly, the groin swab has grown Pseudomonas. Interestingly, it seemed to start as a small boil with no swelling - remember back when it started, I had no neutrophils so there was no ‘pus’. Many of us on NICU have seen Pseudomonas infecting premature babies, presenting as a rapidly spreading infection up lymph vessels and veins, with areas of black i.e. dead skin. I would guess half those babies die, so this isn’t a bacteria to muck about with, especially when in close proximity to one's genitals. The black spot was also very painful in a way most boils are not. At the time, we discussed with consultant who suggested pseudomonas on basis of black spot, so I knew this was a possibility, and the Tazocin is an appropriate antibiotic. Pseudomonas are clever bacteria - been around longer than we have, and have special ‘efflux pumps’ that push out antibiotics making them highly resistant. They can create biofilms e.g. around Hickman lines, which are almost impossible to treat without removing the line. For some reason, they also grow better in zero gravity: they did an experiment in the space shuttle. Why they did that, and who funded it is a mystery. [Obviously I googled that, but I knew the rest, honest]. I seem to have developed a bit of “chemo brain fog”. Aside from my constant apathy and lack of energy, I’ve found I can’t play more complex pieces on the piano. I can’t seem to read the keys (flats and sharps) and make my fingers play the right notes. I suppose that reading music and playing is a fairly complex cognitive task, and I’m OK on the simple pieces. I’m not ashamed to admit that depressed me quite a bit, but it’s just another thing to work around and I will get better. Still, along with all the other changes, it makes me realise some of what others undergoing more intense chemo must contend with, and I feel so sorry for kids who have to endure all this crap. I was full of bravado when I was first admitted. I thought the first week of chemo would be horrible, the 2nd week would be a bit miserable, but by weeks 3 and 4 I would be up, bed made and ready for kit inspection by 8am, hour of exercise, work, emails, piano, lunch and repeat. The exercise bike was next to my bed for 3 weeks until they took it away. It had been constantly mocking me. You lazy, pyjama-wearing slob, you can’t even bare to look at me. Honestly, I don’t know what I do all day. Time seems to pass quite quickly doing nothing. A few of you wondered why I brought a tape measure in with me. I’ve measured my mid-arm, mid-thigh and abdomen weekly (once a growth and nutrition expert, always a growth expert etc.) The results are in and rather surprising. When I was first told back in April I would need my HSCT in October I asked what I needed to do, and my consultant told me I need to put on some weight. That was deeply irritating given I’d spent lockdown exercising to get down from my porky 74kg to a trimmer 72kg. Most transplant recipients lose <10% body weight, so I ate every pastry going even when I wasn’t hungry and weighed in as a Super Middleweight at 77kg. I’m now around 74kg but forcing myself to eat even when not hungry. My mid-arm circumference has only gone down by 0.5cm. Not much at all. But my mid-thigh has gone from 55cm to 50cm. You might think that is only 10%, but actually it’s more. Circumference is 2*Pi*r and volume is Pi*r2*height, and doing the math, that’s actually a 17% loss of muscle mass. You would also imagine my abdomen had shrunk, using those carefully accrued fat stores. I was 99cm – I had quite a belly – and now my mid-abdomen is…. 99cm. No change. My muscles (lean mass) have slowly atrophied releasing plenty of energy as the amino acids are converted into glucose and fat. That looks to have provided all the extra energy needed, and there's been no need to start burning the fat, although longer term that would happen. It also shows you why BMI, or weight alone, doesn't really tell you the important changes. Losing weight by eating cabbage soup and not exercising is not only pointless, but harmful. Loss of muscle mass results in higher levels of tiredness, muscle weakness and more trips and falls. This is why being bed bound as an older person is a real worry. On the plus side, there's plenty of spaces to launch the dart at for my heparin injection. I didn’t get any bloods checked today, but things are heading in the right direction and yesterday my Hb was up to 90, and neutrophils up to 0.33. Slowly slowly catchy monkey. Once again, thanks for all your comments and wishes, and support. It's good to hear from you even if I don't reply. That's all folks. End of last week and the weekend were largely un-eventful. White counts and platelets stayed down, neutrophil count 0.00 and spent most days lying around watching rubbish TV and snoozing. Somehow, I’ve been in this 4x5m room for 19 nights already. The room is in positive pressure so there’s a constant flow of filtered air into the room which then outflows via gaps around the door. Although the temperature is constant, there’s a continual slight draft, and it feels dry. You wake after a few hours of mouth breathing with cacky mouth and dry lips. Still taking daily showers with Octenisan; showers are deeply un-satisfying, slight draft from the airflow, not quite powerful enough, feel chilly when you get out. I’m not complaining, appreciate how lucky I am to get all this for free. The food is fine, but hard to eat when you never feel hungry, and when you ordered it 24 hours earlier – know I could eat more if I could choose my own food there and then. Force it down best I can, cocktail of tablets for desert; must be eating enough as weight is steady.
Woke up on Sunday morning to realise my hair had suddenly started falling out - bed looked like a dog had been sleeping in it. My jumper changed from cashmere to mohair. One of the nurses shaved it short for me – at that stage I was rocking the Ragnar Lothbrook look with my beard but then that last 1cm fell out, and my beard started disintegrating. Still got the eyebrows but think they’ll go next. Apparently getting your eyebrows plucked out and tattooed back in is all the rage. I think Ragnar does that in series 3. I also realise the last time I had no hair and a naïve immune system was as a newborn baby. It goes without saying that I was beautiful, and back then my immune system was fully supported by breastmilk. Sadly, I now look like an grossly oversize 25 weeker yet I’m no more likely to get breastmilk than I am to get a bed-bath. Have been Octenisan washing, gargling with stuff that tastes like sea water and thought I’d kept it all pretty clean. But Monday I didn’t feel right. Temperature went to 37.6 and I got a sore spot in groin which developed into a shallow ulcer. You don't get 'pus' when you don't have neutrophils. Later on Monday, my temperature hit 38.9, CRP went up to 40, then 59 and I started feeling shivery. Peripheral and Hickman line blood cultures etc. then started back on Antibiotics (Tazocin plus shot of Gent) which is i.v. infusion every 6 hours so they finish at 1am and start again at 6 am. I’ve never had more than 4-5 hours of sleep at a stretch since I arrived. I feel a bit better today, but good news is I HAVE A NEUTROPHIL. You should normally have a neutrophil count of about 3.0 or more, but it could be OK to be a bit lower. Yesterday mine was 0.06 and they have to have come from the donor stem cells. My platelets are also holding up (44) some of which will also be donor. Today my neutrophils are 0.09. Slow but ‘convincing’ I am told. So, thank you Mx Donor; it does feel good. Long, long, way to go and many other future issues to contend with, but for now I’m grateful to get through these first steps. Thank you to all of you for commenting either via social media, on the blog or directly. I’ve been genuinely touched by how many people have contacted or messaged me and apologies if I didn’t respond. I was trying to be consistent and not comment or ‘like’ on social media but I may not always have been consistent! Thank you for all your offers of support. I’ve currently declined all the offers of travel, and most gifts of >£1,000, but I have accepted delivery of this boat. Designed by Stinky Jim Dad Bad Donkey (long story), who also designed the tugs that finally shifted the Ever Given in the Suez. True story. That’s all folks. x 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. 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. |
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