Before my stem cell transplant, I was told that recovery would take around 3-6 months. If I’m honest, I chose not to believe it as I recovered from most of my earlier cycles of chemotherapy in about 2-3 weeks. After my 6th cycle of cytarabine and rituximab I even felt well enough to go away on holiday for a week. I enjoyed walking, dining out and being terrified on the Heights of Abraham cable cars. Anyway, I’m now at the point of conceding that 3-6 months recovery is probably going to be about right. That’s a long time. Definitely slow going.
A month on from my transplant and some days (like yesterday) are incredibly tough. Definitely worse than anything I experienced during the first six rounds of chemo. Shortness of breath, crushing fatigue, being unable to eat very much, nausea … but this is fairly standard fare by all accounts. Today has been better, but I’ve not moved very much. Reading the gas and electricity meters took real effort to achieve. I’ve not left the house (except to walk to the post box or nearby shop) since I came home from hospital. I’m worried that I’m becoming a hermit. Driving a car again feels like a distant ambition.
My Fitbit agrees that the process has taken a lot out of me. My resting pulse is still in the high 70s/low 80s, when normally it’s in the mid to high 60s. No wonder I feel tired and am finding it difficult to put weight back on.
But on the positive side I’m still here. I am getting better – albeit more slowly than I’d like. It does seem to be a case of three steps forwards and two back, but that is progress nonetheless.
Today is the last day of blood cancer awareness month 2018. DKMS is a charity which maintains a register of potential blood stem cell donors to help fight blood cancer. While I was fortunate to be able to undergo what is known as a autologous stem cell transplant – one from my own cells – others require donor transplants to have a second chance at life.
Only a third of donor transplant candidates find matching donors within their own family. In the UK, this leaves 2,000 people a year who depend on other donors. As only 2% of the eligible population is currently on the register, some 40% sadly fail to find a matching donor.
What can I do to help save a life?
This three-minute video explains how to become a potential blood stem cell donor and what’s involved in the process.
I returned to the hospital this morning for a blood test, with a view to them removing my Hickman line. The results were encouraging (Haemoglobin 99, Platelets 33, Neutrophils 0.5), especially after I’d felt absolutely shattered the day before. So the line came out. Another small milestone on the road to recovery. I’ve been given a course of three more gcsf injections to help get the neutrophil count back up.
My appetite is improving. I enjoyed eating half a large pizza for tea today. That’s a good thing, as it looks as if my final ‘low’ weight will be 82.4kg … just 9kg under what it was before the stem cell transplant started.
I’m in good spirits, but very tired. Over the next few days I’m hopeful that the tiredness will ease a little and I can start to do some gentle walking. I’m not ready for the Monsal Trail, but hopefully it won’t be too long before I am.
In the end they decided not to remove my Hickman line as my platelet count is still marginal. I’ll be back for an outpatient appointment on Thursday. My bloods will be checked again, and the line removed assuming all is well.
It’s been a positive experience. Not something that I wanted to go through, nor would I wish it on anyone else. But yes, a positive experience.
Time to recover and build my strength back up. It’s likely to take a few weeks, but I feel in reasonable shape to make a good start to my second life.
Yesterday’s blood test results were hugely encouraging. Haemoglobin was up to 110, platelets 35 and … I Haz Neutrophils! 0.8, to be precise.
The threshold for discharge is platelets above 30 and neutrophils above 1.0. My blood samples have just been taken, so there’s a possibility I may be discharged today. If not, it will almost certainly be tomorrow. A 19 or 20 day stay, against a more usual 21+. After all of the problems I had earlier on this week, I can scarcely believe it.
I’m not going to miss being confined in my room when I leave, that’s for sure. I’m looking forward to breathing non-filtered air again and knocking a few conkers of the trees outside the ward. But I will miss the people who have been looking after me. They are a credit to themselves, the hospital and the NHS – without exception. Like many wards, they’re under staffing pressure a lot of the time, they deal with some very poorly people on a daily basis and yet their care and compassion is amazing. If there was such a thing as TripAdvisor for hospital wards, this would get a 5/5 from me!
I will write again once I’m home. In the meantime, if you’ve enjoyed my missives from room 6, why not make a small donation to the Nottingham Hospitals Charity? You can choose what your donation goes to support, if you wish.There are numerous ways to donate, including by text.
Last night saw my final dose of IV antibiotics administered. The blood cultures they took from me a few days ago grew nothing nasty and my temperature has been nicely in the normal range ever since. I’m still being given drips to protect my stomach, but these are short in duration. I’m slowly reaching for normality again. My Hickman line will be removed before I leave here – another sign of things returning to normal. It will no longer be needed to accompany the “Boom-ooh-yatatatah” of the medicine pump.
However, I’ve still quite a way to go before I’m ready to resume my place in the world. Fatigue is nearly always a problem for the first few weeks. I have to get some strength back as I’ve lost around 7 or 8 kg since I was admitted on September 4th. I’ve definitely lost what little muscle tone (please don’t laugh too loudly Ben) I had. Maybe I should take on the services of a personal trainer … I know a couple quite well, and one doesn’t live too far away from me. Perhaps in my second life I’ll become a gym bunny.
I’m going to take things very steadily. Nothing would waste all of the effort expended by the NHS faster than me overdoing it. I need to find my limits, they should improve over time, but I have to be sensible about things. If I can get back in the 7 by the end of October that would demonstrate to me that I’m making physical and mental progress.
The mental side of cancer is often neglected. Fortunately, my psychological training gives me a number of tools that I can use on myself. I haven’t found the emotional side of the original diagnosis and my eventual treatment too traumatic, so far. It helps me to talk though – to other people going through the same experiences and to my friends out here in ten pence piece land. You are all my therapy – thank you for putting up with me!
Yesterday lunchtime I was given the encouraging news that my white cell count had started to move up slightly from zero, where it had been for a few days. My stem cells are clearly little beauties, as that happened slightly earlier than is normal. Today’s blood samples were taken at 6am. I’ve been waiting with high anticipation to see the verdict.
The consultant has just been to visit me and the encouraging trend is continuing. My total white count is now 0.4. My haemoglobin is stable at 88 and my platelets are back up to 30 (having been in single figures 72 hours earlier). There’s still a way to go before I’m fit for discharge, but there is an outside possibility that could happen as early as Sunday. Realistically, I’m steeling myself to be here until Tuesday. That would match the predicted 21 day stay I’d been given before admission.
I can’t tell you how happy I feel. It’s like Christmas with foot-long pigs in blankets ready to eat with lashings of cranberry jelly (*).
Because I’ve not been shaving to try to minimise any issues from nicking myself, I’m hairy in all the wrong places and losing hair from where I’d like to keep it. I am Mange Man. Suggestions for my potential superpowers are welcome …
(*) I hear that Aldi have these on their Christmas offerings. This news immediately enraged the more traditional of my daughters, Jessica, who believes that the best bit about pigs in blankets is being able to eat 50 at once. She may be right …
Another night, another set of blood transfusions, antibiotics and iv fluids for which I’m grateful. I feel stronger again today. However, lack of sleep over the few days means fatigue is kicking me to Devon and back.
I’m also grateful that my MCL treatment has been possible at all. As a rare cancer, it was only identified as a specific sub-type of B cell lymphoma around 25 years ago. Survival times were short – typically less than 3 years. The introduction of the Nordic Protocol Chemotherapy regime followed by an autologous stem cell transplant has subsequently improved survival times. International research and cooperation, particularly within Europe, is directly responsible for the improvements. However, by the time I am well again, it will have been something like 9-12 months since I started treatment on an unseasonably snowy day in March.
None of my treatment would have been possible without research. Because MCL is rare, that research has required funding and coordination across the world. New ways of treating MCL are showing promise. In particular, something I don’t claim to understand known as CAR-T offers a potential cure, at a far lower physical cost to the patient than the treatment I have had.
Lymphoma Action is the specialist UK charity supporting people with lymphoma. They provide a vital voice for the patient. I want to help them demand better for all of us in this position. I know that any donation you can make to them will be gratefully accepted. It will be used effectively to support people like me.
The best way to donate to Lymphoma Action is directly. There are a range of options, including by text. If you’ve found the blogs on my stem cell transplant informative or entertaining in any way, could I encourage you to make a small donation please? If everyone who has read my posts over the last couple of weeks were to donate the cost of a posh coffee, then we would collectively raise a few hundred pounds for them very quickly indeed.
Good morning! Following some unusual side-effects to treatment yesterday, I’m pleased to report that I seem, for the moment at least, to be turning a corner. Yesterday felt like the whole team went up at least a gear or two to make sure that I was supported. I’ve never spent so much time talking to haematology consultants and doctors as I did yesterday.
Anyway, my side of the bargain was that I needed to pull an all-nighter. I haven’t done one of those for some years (My friend Matt Smith will remember one in particular) … and in the end, my part was mostly to sleep through it. Since 9pm yesterday I’ve had two infusions of tranexamic acid (the second is currently underway at 6.15am), two units of red blood (for those that don’t know, a unit takes approximately 2 hours to be transfused) and intravenous antibiotics.
It hasn’t helped that one of the inevitable chemo side effects, diarrhea, has also kicked in at the same time. But at least I’m now an expert in using a commode, as they’re not keen on me moving around too much at the moment in case I have a fall. It’s a brilliant device, and I feel that every home should have one. I may invest in one myself when I get home for those days when I really can’t be bothered to walk 10 metres to the bathroom. Or not … !
The real test of processes is when they have to veer off the “happy path”. That happened here yesterday, and the hospital’s exception handling was executed impeccably.
The storm continues to rage around me, but I’m comfortable. Lots of drug infusions and blood transfusions are helping. Because my platelets had dropped below 10, I’ve had a transfusion of those this lunchtime. I feel rather better than I did first thing. Nausea is proving to be a bigger problem than it usually is for me, but the platelet transfusion should help with that as well. I’m writing this while nibbling away on tiny pieces of fruit, with a fluid drip clicking away in the background replacing some of the salts I lost earlier on. I’m definitely comfortable.
I took this rather blurry picture on the Monsal Trail in August. The way is lit, but you can’t see the end of the tunnel as it curves away to the right. This seems like an appropriate metaphor for where I find myself today.