After a stop/start year for treatment I had my first maintenance dose of Rituximab since September on Friday morning. Strictly speaking I was below the neutrophil count required (1.3 vs the normal threshold of 1.5 for treatment) but it was determined that the benefit outweighed the risk. To counteract the mild neutropenia and rather more severe lymphocytopenia I have at the moment I’ve been prescribed a course of GCSF injections over the next couple of months, alongside the daily antibiotics and antivirals. Lovely.
So my immune system is really not playing ball at the moment. This is a worry in normal times, but rather more stressful at the moment as the world tries to vaccinate its way out of the Covid-19 pandemic. Although I’ve had both doses of the AstraZeneca vaccine there’s a strong chance it won’t be very effective in me. That’s not surprising given that research into other vaccines in blood cancer patients show similar poor responses. I imagine that I will be taking more precautions than most for the foreseeable future.
It’s all a bit rubbish really but I’m not going to grumble. Well, not too much anyway. Where there’s life there’s hope, after all. The cyber bunny in the stream in Ashburton that I saw on our holiday a few days ago agrees with me.
Saturday marked the second anniversary of my stem cell transplant. With everything that’s happend since last year, it was a much more muted event. I did get a fantastic card from Jane.
As the weather was good (not too hot, but sunny), I took the 7 for a trip over to Sutton on Sea for fish and chips. Some things I learned:
The B roads between Newark and Sutton on Sea are much more fun to drive on than any of Lincolnshire’s A roads. Safer too, given the standard of driving demonstrated at roundabouts on the Boston ring road. A hint to Boston’s SUV drivers – you give way to traffic coming from your right, even if (especially if) it’s a strange little yellow car that you’ve just seen from your perch in the sky.
Mablethorpe has changed beyond recognition from the 1970s; Sutton on Sea hasn’t. Unless you really want to experience Blackpool packed into 500 yards – but without the benefit of the illuminations and trams – avoid Mablethorpe and head to Sutton on Sea instead.
Waldo’s fish and chip takeaway on the High Street serves a decent portion of cod and chips – and they’re incredibly well organised in dealing with the demands of COVID-19.
The 7’s fuel tank seems to have a range of around 230 miles. Fortunately I remembered to stop at a petrol station after 229 miles of spirited driving.
On balance I would probably had a nicer day – but with much more crowded roads and less good tarmac – if I’d stayed in my usual haunts around the Peak District. But I did get to see the North Sea for the first time in ages.
On the cancer front, it’s all much the same as it has been for the last year. I remain in remission and I’m hoping to restart maintenance treatment – after a COVID-19 pause – in a couple of weeks. I continually overestimate my ability to be active. After this little adventure Sunday was spent dozing in front of the Tuscan GP. Today has been work – and my brain stopped functioning by 2pm. Tomorrow should be much better …
The world has changed dramatically since I last wrote here. The phrases “social distancing”, “self-isolation” and “shielding” are now common currency.
I’ve been working from home since March 11th as the company I work for closed its offices across the world. In normal circumstances I hate working from home.
On the 12th I suspended my ‘walk all over cancer’ challenge as I became increasingly concerned about the impact of exposure to Covid-19.
The last time I left home was on the 16th. I went to have a vaccination as part of my recovery from my stem cell transplant. The scenes outside the doctor’s surgery at 0800 that morning were disturbing. Everyone without an appointment was firmly and politely turned away at the door.
My ‘extremely vulnerable’ text from the NHS Coronavirus service arrived on the 23rd, followed by a letter from my GP on the 24th. I’m taking their warnings and advice seriously.
I have one wish. That the blasé phrase used to describe the majority of deaths from Covid-19 – “the patient had an underlying medical condition” – is binned from future media reports. It lulls the well into a false sense of security and devalues the lives of those who are less fortunate. Any and all deaths from this virus are a tragedy, and the words used to report them matter.
The last time I completed the Cancer Research UK walk 10,000 steps a day challenge was after I was diagnosed, but before I had chemotherapy and a stem cell transplant for mantle cell lymphoma. My life-saving treatment was successful because of research carried out into this and other cancers, in part funded by this charity.
After my wife’s diagnosis of ovarian cancer last Easter and treatment, Jane is now benefiting from a newly available drug, Olaparib. Again, this drug and the hope that it brings wouldn’t have happened without research.
But research costs money.
So I’m doing this challenge again, in part to improve my fitness, in part to say f*** you cancer, but mostly to raise some more funds for this vital research.
If you can spare a couple of pounds, that would be fantastic. If not, please just cheer me on as I wander around trying my best not to bump into too many people, animals and inanimate objects.
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.