Dean had a stem cell transplant in 2021 and kept a diary throughout. He’s kindly shared this to give an insight into the process for anyone else going through a transplant, or their family or friends.
Day 1 (transplant day - 9)
I met with my transplant co-ordinator who escorted me to my room. Feeling nervous but comforted that most of the team who had been here for my last visit are still here.
Settled in and set up my ‘home gym’ (resistance bands and hand weights) and did some laps of the room (exactly 11 steps each lap). Expecting I’ll only get use of these for a few days and the docs may prefer I stay more sedentary but as I can’t leave the room after the chemo starts, I would say they are essential for my physical and mental well-being. Though I think I may also be kidding myself about my ability to exercise in any meaningful way after the ‘fun’ starts.
The 21-day schedule is roughly a week of chemo, then the stem cell transplant, followed by two weeks of anti-rejection meds. I’m expecting to experience nausea, vomiting, loss of appetite, mouth ulcers and rashes.
Danny (my brother) has kindly donated his stem cells - I’m told we are a perfect match which sounds good to me. Danny produced more than we need, so we have enough for a top up if necessary. Nice work bro. The jokes are that I’ll inherit his love of all things outdoor, wild camping, climbing mountains and foraging for food. I think my 30 years of travelling and staying in fancy hotels I could never afford if I was paying for them will win out!
I’m told transplant day is emotional for many. At the moment it’s trepidation I’m feeling but I can see that it could feel like ‘out with the old cancer cells, in with a new life’... let’s wait and see.
Day 2 (transplant day - 8)
Slept well despite the hard beds, had the usual breakfast of toast and cornflakes. About 10.30 they came to take me down to Radiology, this is where they will insert the Hickman Line - basically two lumens (catheters) that are put in your upper chest to allow chemo and other IV meds to be inserted and also allow blood to be taken without the need of a needle which is fine by me. It looks a little odd, but they can stay in for a long time without the need to change them (assuming I don’t get any infections).
The Hickman was inserted under local anaesthetic, a little uncomfortable but little pain. The procedure took less than an hour and was helped enormously by one of the team who distracted me with talk of all things holidays.
The stem cell transplant is essentially an IV bag of Danny’s stem cells and plasma. Before I get it they have to wipe my bone marrow and get rid of those nasty leukaemia cells which leaves me open to all manner of nasties until Danny’s super cells take over and keep me safe. Infections are to be expected and throw in the risk of me not accepting his cells (Graft versus Host Disease), it’s these things rather than the actual transplant that will be occupying my mind for a while.
It’s also a one-way street - there’s no going back once I’ve got rid of my native immune system, Danny’s has to work or I’d need to find another donor, I assume, though I’m not contemplating that yet.
There is officially no visiting thanks to Covid. This has been a feature of my entire treatment and it’s made things really hard at times. They’ve made an allowance now and my wife Annie can visit for one hour, once a week, subject to a negative PCR test. Not much but something.
Day 3 (transplant day - 7)
After last night’s excitement (England beat Denmark 2-1 after a nervy 90 mins and even nervier 30 mins extra time) I had a half decent sleep (still getting used to the bed). I had bloods taken at 6:30am which was much easier due to the Hickman.
Feel okay about being here but I did get a little frustrated yesterday afternoon when I couldn’t get the wi-fi to work or get a useable phone signal. It’s bad enough being here without frequent visitors, but without the ability to communicate easily it’s going to be really tough. Small things can get to you here!
Day 4 (transplant day - 6)
Today is the day we start the chemo regime that leads up to transplant. It takes about three hours by IV line and then another nine hours spent taking IV fluids.
I’m now getting into a routine which is surprisingly busy and recording the input and output of everything. Anything I drink, the number of times I go for a number 2 must all be recorded!
Feeling okay despite the chemo, I’m hoping this lasts until Sunday when Annie visits and England play Italy in the final of the Euros.
Day 5 (transplant day - 5)
More chemo today, same routine as yesterday. I’m basically plugged in to IVs from 9am until 10pm. Not feeling any effects from the chemo yet but reading between the lines it will start to kick in next week. I’ve heard it described as a month of continuous hangovers and some suffer worse than others. I’m hoping for an easy ride.
My daily routine of showering, exercising / pacing, watching TV, reading and updating my diary between chats with the team are keeping me going and making the days tolerable. I’m not looking forward to taking to my bed and long recovery days. I am looking forward to the weight loss everyone has promised - as someone who has always struggled to shift weight, I can tell you the ‘chemo diet’ is very effective.
Day 6 (transplant day - 4)
Annie was finally allowed to visit, and this made a massive difference. I’ve been unable to have any visitors during the five months or so I’ve spent in hospital over the last year. It’s not only good for me but important for her to see how well I’m being looked after and to feel involved in my treatment. She brought dry fruit, apple juice and chocolate treats and cookies for the staff. Lord knows they deserve a treat.
I had another full day on the IV. Starting to feel a little trapped but looking forward to tomorrow as less IVs, so more walking and movement in the room will be possible.
Day 7 (transplant day - 3)
Woken early by a very enthusiastic medic to take my ‘obs’ - observations are generally done every two hours during the day from early (some would say too early) until late at night. They check heart rate, blood oxygen, blood pressure and temperature.
Sleep was difficult last night. The IVs were finally removed about 1am. I was also disturbed by nurses entering the little vestibule that separates the room from the ward outside. Every time they do this the light shining from the vestibule illuminates the room. They are all lovely but sometimes it feels like they are treating the disease and forgetting there is a human attached.
You might hear a number of grumbles from me (don’t get me going on the food, for example) but believe me this place is the Ritz of hospital stays - the rooms are large, it’s modern (the hospital was only opened last summer), everyone has their own room, bathroom, TV, kettle, fridge and safe - like a rather austere Premier Inn would probably be more accurate but I’m very grateful for being looked after so well.
Feeling grumpy here is to be expected, some days I can be fine and then have a spell when the smallest thing becomes the source of great irritation.
Day 8 (transplant day - 2)
Today I start taking the ATG - an immunospressant that’s taken in advance of the transplant to control Danny’s cells (I think). I’m told it causes a mild temperature and the familiar cold feet and chills are the first sign my body is unhappy with this new drug.
I spend the rest of the evening and night having hourly observations and feeling pretty rough, like a really bad hangover. It turns out my symptoms are not uncommon with ATG. Steam ahead with the transplant in two days.
Day 9 (transplant day - 1)
Woke feeling pretty rough, a combination of lack of sleep and the ATG I think. I have more ATG later, but I’m told the reaction should be less severe today.
My infection marker has risen, so doc is putting me on antibiotics. An infection won’t stop the transplant going ahead, because it’s a ‘one way street’ according to doc. Shit or bust is how I would put it.
My appetite has been waning for some days and eating anything seems like a chore rather than a pleasure. This is frustrating as meals are one of the highlights of a very dull day in hospital.
I’m excited for tomorrow, though I think it may be an anti-climax. I’ve had many messages asking me how the transplant went, thinking it’s a procedure or operation, not just a bag of cells on an IV drip! An anti-climax that might just save my life though I suppose!
Day 10 (Day 0 – transplant)
Danny’s stem cells arrived about 1.30pm, they come frozen and enjoy a warm water bath to defrost before being allowed to drip naturally (without the aid of the IV machine) into my Hickman Line. I had four of the smoked salmon colour bags, about the size of a hand. It took about two hours to complete the transfusion, it was explained I might not feel great not because of the stem cells but because of the preservative they come in. I was given Pirition and Paracetemol but apart from some tiredness, feeling hot and a mild headache things were okay.
The most exciting part was seeing the cells in the IV lines, I never expected they would be visible to the naked eye, it was encouraging to see how many were going into battle on my behalf, I feel like saluting every one of them.
Day 11 (Day 1 post-transplant)
Woke feeling a little rough, nothing specific just a general listlessness, everything seemed a bit more of an effort. Continuing with antibiotics after my temperature, this probably wasn’t due to infection but it will help see me through the most risky next few days as my own white blood cells crash and my new healthy ones attach slowly. Keeping up my mouth care routine with thrush prevention treatment, a saline mouthwash and a minty green one which isn’t too bad. Four times a day is a bit of a bind but infections of the soft tissue in the mouth and throat are common, and it seems a small price to pay.
Felt up to some walking today, nothing too extreme (11 steps across the room after all) but any exercise helps with sleeping I find, I may even get the resistance bands out and work on the guns!!
Day 12 (Day 2 post-transplant)
Annie visited. Not sure I was great company as feeling a little rough - a little headache, a little stomach pain, a little nausea, a lot of listlessness. I was grateful for the change of clothes and goodies. In here I crave fresh food, so she brought salads and my guilty pleasure: those little Lindt chocolate balls.
Day 13 (Day 3 post-transplant)
I’ve been gaining weight, about 2.5kg (slightly miffed as I had been told I would lose pounds). The docs put me on a diuretic to help shed the water. It was working fine but perhaps too fine - I was up peeing most of the night. During one of my trips I found myself collapsed on the bathroom floor. Investigations centred around my blood pressure, I felt it was a one off caused by all the peeing and probably getting up too quickly.
I made it back to the bed and told the nurse in the morning, she told me off for not pressing the call button or pulling the red plastic emergency pull in the bathroom, by way of penance she makes me wear a bright green wrist band to signify I was now a fall risk, I told her this was the worst all-inclusive hotel I’d ever stayed at!
Day 14 (Day 4 post-transplant)
I’m now getting daily ECGs to check on my ticker, the usual fight between sticky pads and my body hair ensues. My body hair seems to have come back from the rounds of chemo with a vengeance, the nurse says some people get a new head of hair in a different colour or with extra curls, no such luck on my bonce.
Although I thought I’d escaped injury when I collapsed, I woke with pain in my shoulder. Codeine and paracetamol helped, and they sent me for an x-ray on level 0. It’s almost worth the pain for the rare chance to leave the room. I try and stall my entry back into my ‘cell’ by engaging the nurses’ station with witty repartee, I fail and am ushered inside for my own safety.
Day 15 (Day 5 post-transplant)
The docs seem very happy with my progress. So far I’ve avoided any spikes, I’m eating (though with a reduced appetite) and I’ve avoided the dreaded mouth ulcers so far, and my neutrofils are on the rise (.2), I’m reluctant to write this, I know from experience things can change quickly and recovery isn’t always linear.
Day 16 (Day 6 post-transplant)
Quiet day today but possibly a landmark date, according to the medication schedule I’m due to have my third dose of Methoxtrate. As the fourth planned dose is rarely given this could be the last bit of chemo I have this visit and hopefully ever.
Methoxtrate is an immune-system suppressant and known to cause some very uncomfortable side effects such as mouth ulcers and severe skin rashes, I have seemed to escape the worse of these side effects and so far avoided the insertion of a nasal feeding tube, something approx 40% of patients require. I was also told to expect my appetite to reduce considerably, whilst this was an issue in my first week it feels like it’s coming back already and I’m eating relatively normally.
With nearly 3 weeks left of my planned stay I’m reluctant to say I’ve escaped all the worst effects, especially as spikes/infections are almost always experienced but it’s certainly been a good start.
Day 17 (Day 7 post-transplant)
Well, me and my new cells are a week old today. So far, I feel pretty good, tired and still feeling the effect of the fall on my shoulder but otherwise pretty good. The doc described my recovery so far as exceptional; I’ll take that.
Day 18 (Day 8 post-transplant)
My neutrophils are practically zero (.1) today. The plan is to get down to zero and then bring them back up again so it’s nothing to be concerned about, but it’s the time I’m most at risk of infection. I was told to expect infections as part of this process so keep telling myself not to worry too much if one happens.
Annie came in today to celebrate my 50th Birthday. I really enjoyed seeing her and receiving 50th birthday wishes from far and wide. Annie brought in birthday cup-cakes for the staff and in return they gave me a card written by all the staff and cake.
Day 19 (Day 9 post-transplant)
Feeling okay today. Neutrophils staying stubbornly at .1 and I’m really missing my family. The eldest wrote me a letter which was lovely, and I will treasure it forever, the youngest brought me Lego, which we like to do together. They are both very special girls and I feel very lucky to be their Dad.
Day 20 (Day 10 post-transplant)
A quiet day led to a very disturbed night. The pain in my shoulder was relentless. Whilst every intervention from nurses gave me 30 mins relief, I was not getting off to sleep for any length.
Day 21 (Day 11 post-transplant)
My reward for doing so well on the Methotrexate (i.e. no mouth ulcers) is that they are giving me a fourth and final dose today. This should be the last instalment of chemo for this visit and perhaps forever.
Day 22 (Day 12 post-transplant)
Three weeks since I arrived. It’s not exactly flown by but I’m pleased to be in a relatively good state.
I’m having platelets today as my platelet count is just 9, below the magic figure of 20 they like to maintain. I would urge readers of this to give blood, plasma or platelets if they can. I’ve had countless bags of each, and I assume my outcome would haven ben very different had there not been many generous donors. If you happen to be a donor, then you have my heartfelt thanks.
I’m enjoying the Olympics along with the Euros. Sport has been a distraction and helped time pass more easily. I’ve noticed a routine of showering, mouth care, diary writing, reading (Louis Theroux), FaceTiming home, exercising and generally staying busy helps the time pass more quickly and mentally helps me not lose the plot.
Day 23 (Day 13 post-transplant)
Spent much of the day resting or catching up on sleep after a disturbed night. My neutrophil level remains low at .1 but hoping to see it rise over the next few days, with 1.0 being the magic number to get me home. I get no points for good behaviour around here it’s all about the science!
Day 24 (Day 14 post-transplant)
What a difference a good night’s sleep makes. A combination of stronger sleeping tablet, oral morphine and anti-sickness medication seems to be doing the trick. I’ve had the MRI this morning to rule out anything more suspicious, the prevailing opinion is I damaged my shoulder muscle when I took a tumble. Despite my dislike of scans generally they are always a reminder of how grateful I am for complimentary access to the NHS.
Day 25 (15 post-transplant)
Slept through the night for the first time in a week. I felt refreshed and full of beans, amazing what sleep can do for you.
More great news my neutrophil score is on the way up but less positively my infection marker score had also raised a little. This can be an indication of infection so the docs will keep an eye on it. It’s not unusual to get blips and doesn’t necessarily mean I’ll become unwell.
Day 26 (Day 16 post-transplant)
Visit from Annie cheered me up today, my chance to receive fresh food (salad and fresh fruit!). Treats, newspaper and clean clothes and a treat for the staff completes the UN emergency parcel!
Her visit coincided with a visit from my lead consultant who effectively said I was a “once a year wonder!” in as much as I hadn’t (yet) spiked or experienced any serious issues with ulcers, loss of appetite, skin rashes etc.
The best way to measure the success of the transplant is the good old neutrophil level and white blood cell count. Whilst these are still very low this isn’t unusual for me, previous rounds of treatment have resulted in a long (say 7-10 days) period of almost zero neutrophils, before rising to normal levels after about 14-21 days, we just need to be patient.
All round a great visit and reasons to cheerful.
Day 27 (Day 17 post-transplant)
A memorable day for us, a year to the day I was admitted to hospital last year. I’ve spent around 5-6 months of the last year in hospital.
Our parents have been amazing, but financially it’s been difficult. It’s easy to see how many families must go under when faced with battling this long running of diseases.
Blood wise I’m at .1 for neutrophils and borderline for blood and platelet transfusions, we’ve agreed to have a day off and have these tomorrow.
Day 28 (Day 18 post-transplant)
It’s been a bit of a challenge today, I’m in serious discomfort from constipation and I’ve stopped eating. I’ve asked what else can be done and they suggested an enema. They don’t like to give them because of risk of infection but I’ll try anything right now. I’m losing my sense of humour and being argumentative with the nurses. I don’t like bunged up Dean and I suspect neither do they.
Day 29 (Day 19 post-transplant)
So, I had the enema and finally got things going, so to speak. I’ve been slightly distracted from the neutrophils count but I’m at .4 which is amazing!
Day 30 (Day 20 post-transplant)
Bum problems have near resolved themselves, shoulder pain in the night but the physio called in today and gave me exercises that should help. Neutrophils are still .4 and I’m feeling a bit fed up. I’m trying to get back into my routine but being in one room day after day with no change of scenery is no fun I can tell you. I’m bolstered by all the great stuff on the telly though. Caught up with Mia today by FaceTime, she has had her date for college and I’m glad we will have some time together before she goes, I’m so excited for her.
Day 31 (Day 21 post-transplant)
My neutrophils count is .3 and I can’t wait to get home now. I’m missing Annie and cuddles with my girls, the random chats we have, not to mention my own comfortable bed and daily walks in the sunshine.
Day 32 (Day 22 post-transplant)
Neutrophils at .4, a small increase but not enough to get me out of here. One of the things I’ve struggled with in hospital is the lack of control, wake when they say, eat when they say, don’t leave the room, can’t have visitors etc. etc.
Day 33 (Day 23 post-transplant)
A great day! Neutrophils are at .7 and the doc says she is happy with all my other blood results. Departure next week is definitely on the cards. Annie visits with supplies.
Day 34 (Day 24 post-transplant)
Countdown to home takes a blow, still .7. It’s been so long in confinement I need to get home to the girls, my own bed and daylight, fresh air, nature. I went through all the discharge info this afternoon in preparation which made me happy.
Day 35 (Day 25 post-transplant)
A day of disaster and triumph, my neutrophils came back at .6, they’ve gone down!!! Anyway, Dr Toth still says I can still go home, so this will be my last entry.
By all accounts I’ve had it easy. I think exercise, mouth care and having a little routine to make the days pass more quickly (at least in the early days) all helped. And I suppose I should also thank Danny for his excellent stem cells!
I’ll have to go into hospital twice a week for check-ups and transfusions, if necessary. I’m keeping my attractive Hickman line for now and will no doubt be taking a multitude of pills each day, but I will be home and that’s all that matters.
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