After a rather sleepless night, there was excellent news from the hospital this morning. I have almost normal blood again and there was no evidence of lymphoma on my PET/CT scan. In January I will start on maintenance rituximab injections, every two months for three years.
It’s not beaten, because MCL never is. However, the beast is soundly asleep and snoring ™ (*) which means I can return to being a productive member of society. I’m starting to feel good about myself again.
As part of my recovery from the SCT I’ve just returned from a long weekend in York. Other than a few day trips and a weekend there when my children were very small, it’s somewhere I’ve never spent much time. There was also a weekend at York University on an Open University management course in 1990. All of the smart students seemed to be WHSmith trainees. How times change. But I digress.
York was wonderful. We went in the museums and galleries, met friends and enjoyed time together. Some of my favourite experiences were:
Food & Drink:OXO’s Restaurant. Now that I’m getting my appetite and taste buds back, this was a brilliant place to spend an evening. Well cooked and presented food, an excellent host and waiting staff plus a barman who made great cocktails. Non-alcoholic for me at the moment!
Culture & History: York has this by the bucketful, obviously. We enjoyed the Castle Museum, York Minster and the Jorvik Centre, but the stand-out for me was the Art Gallery. Specifically the Strata | Rock | Dust | Stars exhibition, which is there until 25th November. Agnes Meyer-Brandis’ installation, drawing on her Moon Goose project, is both charming and bizarre. I especially enjoyed the weathered samples of goose eggs showing how they crumble to dust over 500 years or so on the moon (*).
Trains: The National Railway Museum. Free entry (although there is a £5 suggested donation – still a bargain). We spent a few hours on Sunday here before catching the train home. The museum has lockers (£3 or £4) which are handy for overnight bag storage, making it an ideal final stop. The ride on Agecroft No.1 was an extra £4.
The railway ephemera in the collections room is as bizarre as the Agnes Meyer-Brandis’ Moon Geese. An encased cheeseburger package has pride of place in one of the cabinets.
Walking: York is an easy city to walk around, if you avoid the crowds. While we didn’t manage to walk all of the remaining walls, the view of the Minster was rewarding from near the railway station. I managed to clock up more than 30,000 steps in the 3 days we were in York. Thankfully, I seem to be making faster progress on the recovery front.
(*) Pedantic bit. Technically there is no weathering on the moon, as it has no air or water. However, a similar process occurs through micrometeorite impacts. But I’m not convinced that a goose egg would be dust in as little as 500 years, even so.
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.