One year ago …
First rebirthday and continuing to kick the arse of The Bastard Beast™.
Every so often the BBC produces something that is worth the year’s licence fee alone. War in the blood, first broadcast last Sunday, is one such programme. It’s a truly remarkable 100 minutes of television.
I’d originally decided not to watch it. Somehow, it all felt a bit too close to home. The CAR T-cell therapy covered by the programme shares some similarities with the stem cell transplant I went through last year. Blood cell harvesting, long hospital stays and (ouch) bone marrow biopsies. The emotions you go through as treatment is explained to you and your carer. The periods of relative wellness, followed by total reliance on medical staff. It’s all horribly familiar. But encouraged by friends on one of the MCL forums I belong to, I decided that I needed to see it for myself.
The personal stories of Graham Threader and Mahmoud Kayiizi are at the centre of the documentary. Both had acute lymphoblastic leukaemia (ALL) which had stopped responding to conventional chemotherapy. The phase 1 CAR T-cell trials they signed up to were their best chance – their last chance – of a long lasting remission. Phase 1 trials are inevitably risky undertakings, as they’re the first time new treatments are tried in people. But as Graham observed, “someone has to go first”.
The science behind CAR T is explained in a straightforward manner using ping-pong balls by Dr Martin Pule. He’s in charge of programming the blood cells used so that they attack the cancer and kill it. His early passion for tinkering with electronics eventually led him into this career. There’s a point in the programme where he talks about the data from the trials being all important. In the midst of the patients’ personal stories this made me gasp, but of course, he’s right. You have to remain objective to make the right design decisions for the patients. You think with the head, not the heart.
Dr Claire Roddie leads the teams administering the trials. The documentary gives a fascinating insight into what motivated her to become a haematologist, and she shares in the patients’ joys and sadnesses. You see the wider NHS at its best as well.
War in the blood is available on the BBC iPlayer for another month. It’s compelling viewing, with a bittersweet conclusion. I’m glad that I watched it. The future of all blood cancer treatment may well be CAR T-cell shaped soon. I’m grateful to the pioneers – the patients and medical professionals – for their selfless commitment.
A few days before Jane was diagnosed with ovarian cancer, we’d booked a holiday in Barcelona. It’s somewhere neither of us has been. It was meant to be a sign that things were getting back to normal after my stem cell transplant last year …
Treatment obviously means that this trip has been postponed. Fortunately, we’d only booked the flights and hotel. The hotel was easy enough to cancel as we’d opted for a flexible booking (at the Catalonia Magdalenes, if you’re interested). The flights – non-refundable – looked as if they were going to be more tricky. We both have holiday insurance, but through different companies.
The flights were booked with Vueling, so I called their customer service desk to ask for a cancellation invoice. The call was answered promptly and I was offered the invoice, rescheduled flights or a full refund. The customer service advisor I spoke to was empathetic and helpful and I gratefully accepted the refund. All Vueling required was an emailed “fit note” and proof of our kinship. My credit card was refunded within 48 hours of these being provided.
Good customer service does exist, even on low-cost carriers, and Vueling now has two more customers for life.
I also needed to cancel arrangements for a weekend touring in Wales with the Seven at the same time. One of the hotels (a small, privately-run affair near the base of the Cader Idris) I’d booked was non-refundable. I emailed them to explain and hoped that the notice I’d given would enable them to sell the room to someone else. It’s tough being a small business owner and I thought this might be rather more useful to them than simply being a no-show. I said I understood that my booking didn’t allow refunds and that I didn’t expect one. Sadly, I never received even an acknowledgement of my cancellation from the hotel.
Join me, my family and friends and say Bollocks to Cancer.
Also please use your vote tomorrow to say Bollocks to Brexit.
The two requests are connected. The development of novel cancer therapies relies on close European and international co-operation. The vacuum left by a mad no-deal Brexit that Farage, half the Tory cabinet and their elitist chums want will kill the sick.
So vote for a genuinely pro-remain party. I recommend supporting the Liberal Democrats as they have the best chance of frustrating the Brexiters, but whatever. Just vote. Defeat the unpatriotic nationalist elites. And tell your family, friends and neighbours to do the same.
This is no time for our great country to become the twenty-first century equivalent of the GDR, isolated and poorer in an increasingly dangerous world.
While I remain in remission from MCL, my lovely wife Jane now has her own battles to face. I’m still too numb to process her news properly. It’s a good job that others in the family are stronger than me. So Emily will be running the Cancer Research UK Race for Life – again – later this year. You can read why here.
Any pennies that you can send her way will be gratefully accepted and well-used in funding further vital research.
“Enough Of This, Thank You”.
So today, at the fourth time of asking, success! And no, I don’t mean Theresa May getting her dreadful EU withdrawal bill through parliament, which lost for a third time, by 58.
On not Brexit day, my neutrophils were above the 1.5 mark (at 1.66) needed for the hospital to give me my first maintenance rituximab. It was a remarkably straightforward process – a subcutaneous injection, taking 10 minutes to administer. The nurse asked me to keep talking to her through the process. I happily spouted nonsense about Brexit unicorns, Gnu, electric cars and the A380 (the aeroplane, not the road).
Other than feeling a little bit woozy (probably from the chlorphenamine pre-med – a pill normally used to reduce hay fever symptoms) I’m fine. I’ve been told to watch out for fatigue over the next few days. There’s also a risk that my neutrophil count could drop very low again, so any signs of a problem and I’ll be straight over to the hospital.
I think this will probably be the last blog entry I’ll be making about the stem cell transplant and its aftermath. Naturally, I shall celebrate my re-birthday every 12th September and there will be cake. No unicorns, by request. But I feel that today symbolically marks the end of this phase of my life. I’m not sorry to leave the SCT behind me, but there may be plenty of challenges ahead.
I’m fairly sure that every day is an international day of something or other. I suspect that there are so many, there are diary clashes as well. Anyway, today is the international day of happiness, and coincidently, I’m happy.
Today was hospital day. After the scare of a few weeks ago, my neutrophil count has now climbed back up to 1.9. That’s just a smidge below the lower bound for normal people. I’m also just in the normal range for haemoglobin and platelets. This should mean that it will be fourth time lucky when I return for my maintenance Rituximab next Friday. So to celebrate it was coffee and cake at the Bottle Kiln, followed by a short run in Gnu to Carsington Water and Middleton Top.
I’m writing this at 4.30pm. Not even the worst UK Prime Minister
of my lifetime ever could spoil my happiness for the rest of the day.
Bloody neutrophils. Bloody absence of neutrophils, actually.
I’ve been feeling really good for the last week or so. Gnu has emerged from hibernation and I’ve racked up a hundred or so very pleasant miles in him across Derbyshire. I’ve survived a third PT session in the gym which involved a punchbag. Very cathartic. I managed a six-mile walk around the tramway trail at Calke Abbey on Saturday without ill effects and, good Liberal Democrat that I am, I’ve been out delivering Focus leaflets. So the call I got yesterday morning from the hospital was unexpected.
The conversation went something like this.
“Hello Mr. Holyoake. Are you feeling well?”
“Yes, very. Thank you for asking.”
“I’m calling about your blood tests. Your neutrophil count is low, so you’re very vulnerable to infection at the moment. Are you sure you’re feeling well? If you are feeling even in the least bit unwell you need to come to the hospital immediately so we can get antibiotics into you.”
“I’m feeling fine. I feel better than I have done since the transplant. (Pauses, while making sweary noises in my head.) How low are they?”
“Well, they’re at … 0.14. We need to give you a course of GCSF injections immediately …”
Anything below 0.5 is considered severely neutropenic. No salad, blue cheese or pâté for me for the next few days! I’d hoped that I’d left such concerns behind after finishing with chemo last year, but it appears that my optimism was misplaced. The hospital (and other SCT survivors) have told me that it’s not unknown for this to happen. I know from past experience that the injections will sort the problem out, in the short-term at least. I’m slightly less panicked today than yesterday about what will hopefully be a minor setback.
However, there’s another wrinkle in this story. GCSF (Filgrastim) injections are (as far as I’m aware) the only way to get a haematology patient’s neutrophil count back up quickly, to protect us from life-threatening infections. (With a neutrophil count of 0.14, pretty much anything could be a life-threatening infection.)
Because of this, Filgrastim is on the WHO’s list of essential medicines. It should always be in stock.
The hospital pharmacy were only able to dispense three of the five injections I need. The other two will have to be collected separately on Friday afternoon. If the medicine supply chain is already struggling, it doesn’t fill me with confidence that it will work at all in the event of a catastrophic no-deal Brexit.
Are you listening, Pauline Latham MP, and all of your fellow travellers in the ERG? (I know the answer to that question – it’s no.)
Having survived my first week back at work, I made the trek over to the Royal Derby this morning for my first Rituximab maintenance session. One of the car parks is currently closed so I left plenty of time for queueing. This was definitely needed, even with an early appointment.
Unfortunately, my blood counts decided that today wasn’t going to be the day after all. While my haemoglobin is normal again and my platelets are stable, the white cell and neutrophil counts have tumbled since Christmas. Even so they’re not desperately bad, but maintenance won’t proceed until the neutrophils are above 1.5 again. It appears to be “just one of those things” that can happen after a stem cell transplant. A bump in the road. Oh well. I shall try again in a month.
To help my immune system I’ve been put back on Aciclovir and Co-Trimoxazole for the first time since early December. This means that the pill organiser will be pressed into service once more. I’m likely to be on these for the next three years now – yummy.
One other milestone achieved this week was stepping back into a gym for the first time in years. It really wasn’t too bad, honestly. Did I mention that my son-in-law is a brilliant personal trainer with very reasonable rates? If you’re still feeling the after-effects of Christmas and live in the Derby area, then you should definitely invest in a few sessions. Ben’s website is here.
Yesterday was supposed to be Blue Monday, but I was excited to be granted permission for a phased return to work. So I did return, today. I’m going to be working reduced hours Monday – Wednesday for the next few weeks to see how it goes. I’m now home and although I’m more tired than I’m used to being at 4pm, I’m happy that I’m back.
My first Rituximab maintenance chemotherapy is scheduled for Friday. This will be the first of my bi-monthly maintenance sessions over the next three years (Brexit permitting, obviously). I’m hopeful that the Rituximab won’t stall my improving blood counts too much. It would be disappointing if it did jeopardise my ongoing return to work – and a more normal life. I’m assured that it should be more straightforward to cope with than last year’s chemotherapy regime, but I do know people who have struggled with it.
And then there’s my ‘childhood’ vaccinations (again, Brexit permitting). The transplant team at Nottingham provided my schedule a few days ago. It looks as if I’m going to be a pin-cushion again after a few months respite since the transplant.
One positive thing from last year is that I no longer have a needle phobia. I still won’t watch what my medical team are doing, but I no longer mind them doing it. Amazingly I’ll even happily administer subcutaneous injections myself.