Today I had my first check up back at Derby after my stem cell transplant. My blood test results were reasonable, if a little on the low side. (Haemoglobin 125 (normal is 120-180), Platelets 116 (150-450), Neutrophils 1.03 (2.0 – 7.0)). This means I’m still neutropenic, but at least I won’t bleed to death 🙂 . I have a shiny new stock of Aciclovir and Co-Trimoxazole to help fight off any bugs I might pick up between now and Christmas. Physically I appear to be getting there, but I’m still feeling very fuzzy mentally. I’m hoping that I’ll start to feel a little sharper as my blood counts improve.
The consultant has scheduled a PET/CT scan for mid December, which will show if I’m still in remission. I’ll get the results the week before Christmas at my next check up. I hope Santa thinks that I’ve been a good boy this year. My (not) fit note has been extended until the end of January. Hopefully my December test results will suggest that a phased return to work will be all right early in 2019.
All being well I’ll also start maintenance chemotherapy with Rituximab injections in the new year. These will be given two months apart, for 3 years. When I started on my MCL journey maintenance chemotherapy wasn’t widely practised, as the results from studies were inconclusive. However, more recent evidence suggests that the benefits of maintenance chemotherapy after a stem cell transplant for MCL outweigh the disadvantages for people in my age group.
I’ve one big Christmas wish for Santa this year. I’d like my head hair back please. I know it won’t improve my looks, but at least I won’t shiver with every little draft that comes my way.
Since I last wrote on T+30 I’ve continued to make progress. I’m still tired much of the time and if sleeping was an Olympic sport I’d be a certainty for the gold medal. However, it feels as if some kind of normality might not be that far away.
This is the easiest to measure. Since T+30:
I no longer need my walking stick.
I’ve managed to drive both the Alfa and the 7 a couple of times, although not very far.
I’ve walked around the woods on Oakwood (several times), Kedleston Hall and yesterday spent some time walking around the gardens at Chatsworth (when I wasn’t eating cake, naturally). My daily step count has gone up from around 1,500 to averaging 5,000 or so. Yesterday I exceeded 8,000 for the first time in two months. My resting pulse has continued to come down (73 today), although it’s still a little above my mid-sixties norm.
This is a little harder to measure, but since T+30:
I’ve built a surveillance camera for the driveway. This was motivated by the possibly paranoid belief I hold that an intruder tried to get into the house the first night I was home from hospital. It consists of a Raspberry Pi 3B+ inside a custom case, running MotionEye on Raspbian. (I originally tried MotionEyeOS, but it proved to be unstable). So far the only intruder its spotted is a spider.
I’ve been thinking about what it might be sensible to stockpile ahead of what looks like is going to be an increasingly difficult Brexit. I’ve not gone “full prepper” – yet – as my list currently consists only of tinned tuna.
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.