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.
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.
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.
The researchers found that 34% of participants simply restated their thoughts with no justification. Of the remaining 66% who attempted a justification, 20% were subjective. Subjective justifications favoured personal experience, cultural identity, false reasoning and conspiracy theories over scientific evidence.
45% of participants said that no new evidence would change their minds for at least one of the four topics investigated.
This research is interesting because it questions the received wisdom that giving people more factual information about a topic will enable them to come to a valid conclusion. It could certainly explain why a ‘referendum on the facts’ about Brexit may still deliver the same verdict as in June 2016. Brexit, as the Prime Minister and her cabinet demonstrates, has become an article of faith.
Which brings me to the topic of cancer. Judging by some of the reviews on the Cancer Research UK Facebook page, scientific knowledge about cancer is controversial. Many of the reviews made me feel sad. Others made me angry. Some examples and the facts (even though it appears that facts may not be powerful for some):
Cancer research has NO intention of finding a cure, merely conning people out of money on the premise of such a possibility … You manufacture antiquated TREATMENTS that eventually kill the sufferer! More patients die from CHEMO than cancer!
In the 1970s, only a quarter of people diagnosed with a cancer survived. More than half now survive for at least ten years.Novel chemotherapy drugs and other treatments developed through research programmes are responsible for this dramatic improvement in survival rates.
Cancer Research UK is a scam!!! Established 1902 and stil no cure? Makes big pharmaceutical companies billions so, ever wondered why there’s no cure?
As cancer is not a single disease, it is unlikely that there will ever be “a cure” for it. Many different approaches will be required. Cancers that used to kill quickly in 1902 but now have a five-year survival rate of around 100% include cervical cancer, prostate cancer, many thyroid cancers and early stage breast cancer. My own non-Hodgkin lymphoma has a rapidly improving survival rate thanks to improved chemotherapy drugs, stem cell transplants and immunotherapy.
Why give cancer patients fatty food and sugar WHEN cancer thrives on sugar.
There’s no scientific evidence that removing sugar from your diet improves your survival chances.
And then there’s the comments from the green crayon brigade that really aren’t worth any response at all, but just make me angry.
A cancer charity that doesn’t tell you what causes cancer, or how to cure it. A low fat plant based diet both prevents and cures cancer. Please watch **** and **** and stop supporting corrupt charities like this one.
… what in hell are you researching there’s a cure already it’s called marijuana …
Scare tactics 1 in 2 people will get cancer? Smoking is down, Drinking down yet cancer rates are up..really why don’t you just say everyone will get cancer so just give us all your money.
The cancer research shop window displays have no mention of the ww1 100 years memorial. No poppies. No ” lest we forget” message. Nothing.
THE CURES ARE KNOWN BUT HIDDEN. VITAMIN B17, CBD OIL ETC
I could go on, but there’s only so much stupidity I can cope with in one day. Nick Clegg is certainly going to have his work cut out cleaning up fake news or whatever it is he’ll be doing at Facebook in 2019.
(*) The participants were 244 American university students and staff, which may explain the inclusion of evolution as one of the controversial topics.
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.