One year ago …
First rebirthday and continuing to kick the arse of The Bastard Beast™.
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.
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.
Thank you all for your support during 2018. And if you have any spare cash after Christmas, I’m certain that Lymphoma Action could make good use of it.
(*) Thanks Gail!
In January, when I knew that chemotherapy for my lymphoma was certain, I wrote the beast is awake. Tomorrow I meet with my consultant to review the results from my recent PET/CT scan and blood tests.
I’m feeling rather nervous, but hoping that I can declare that the beast is asleep. A move to the final box on this sheet would be very welcome news.
I certainly feel good in myself, but I have the ‘relapse pathway’ printed out and ready, just in case. I’m hopeful that I won’t need to use it for a long time.
Carsington Water is a pleasant 30 minute drive from home. It’s somewhere I enjoy going to think, especially when it’s quiet. It was very quiet this morning, as well as being cold and rather eerie in the winter sunlight. It’s a good job the 7 has a heater – however inefficient. At least it keeps my legs warm while the top half of me is wrapped in a fleece, scarf, snood, woolly hat, driving gloves and a big coat.
This was probably the last excursion for Gnu this year as the weather for the rest of this week looks poor. He’ll be safely stored away and SORNed by 1st December for a couple of months.
I spent some time walking around Stones Island and reflecting on the last year. It’s one I don’t want to repeat in a hurry. Chemotherapy and a stem cell transplant is no fun at all. Worse than the treatment was missing out on too many social occasions – including work. But I hope that I’m now through the worst of it and that any relapse is many years away. Maybe something else will get me first after all!
Having made appreciative noises at the sculpture, my twenty-minute walk became too cold to bear. So I did what any sensible person would do and headed to the Mainsail restaurant. My sausage cob (breakfast is served until 2.30pm – very decadent) and pot of tea were a bargain at £5.25.
I’m cautiously optimistic about 2019 from a personal perspective. Maybe even my head hair will grow back soon. I hope this optimism is better-founded than my Old Timmy’s Almanac predictions were at the start of this year.
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.