Capricious Cancer

Update: It does seem most unlikely that I'll reach 80 but there was a time in mid-May last year that I was "given" weeks or maybe a few months to live. 

So now I'm going to pick up on the story I left off in June last year[1]. By now it should be clear that the the earliest predictions were pessimistic. In other words, there is still a bit of life in this old devil yet.

Above: Jonathan hasn't made 70 yet. In fact far from it, but it would appear that he's eyeing up another new renovation project during a recent walk along the Thames early last year! I was crossing my fingers that he wouldn't go forward with this new plan because he'd already just started his house plan and I'd somewhat rashly promised to make him some outside doors for the capacious "estate" they'd just bought in Coleshill a few miles from us in Oxfordshire.

​How much time left is the obvious question?​

A year ago I did have expectations of at least a few more years. I was in reasonable nick and enjoying being a grandfather. I needed to stay around for at least enough years to allow little Niamh to remember that she had had two grandfathers at one point and that they had been a bit of a laugh and were nice to cuddle occasionally. 

Now, who knows? I have surprised the most eminent of haematologists and, given that I'm one of very few people who has broken the mould, there really doesn't seem to be a positive (or negative) indicator that I can put my finger on. At the outset of this journey the plan was to undergo multiple injections of venetoclax and azacitidine every day for 6 days, approximately once a month for approximately 6 months.

It all started when I was diagnosed by our GP on the 4th of March 2025 with suspected diverticulitis and quickly dispatched early the next morning to the John Radcliffe (JR) (technically our local) Hospital in Oxford. There was nothing for Shelley-ann (Shan) to do but to return home to Faringdon and wait for a call, hopefully to come back and collect me. The medical staff in the JR were outstanding and very quickly confirmed our GP's diagnosis. The day wore on and I was shuffled from ward to ward and the process was increasingly leaning towards the presence of some blood abnormalities. 

Evidently I didn't help matters at home when I phoned Shan to deliver a sitrep, the last of these to blurt, allegedly: "they think my blood is fucked". Shortly after that I was moved to a high-security (in the medical sense) ward in the bowels of the JR. So deep in the bowels that there was no phone signal. Just before 7 PM on this long day I was paid a visit by a senior Consultant who sketched the outlines of his and his colleagues' concern that I had Leukaemia. He wanted to speak to Shan and told me that he would treat her sympathetically. I knew he would. He just seemed like that kind of bloke.

Being in a WiFi free zone I couldn't keep her up to date. I didn't know at the time that I was to be whisked away up to the JR's roof to occupy the only isolation room remaining vacant in the building. But isn't communication wonderful between people who love each other; somehow Shan was standing outside the ward door when staff opened it at 6am.

Above (l-r): the view from the isolation private room within the rooftop ward; a helicopter provided daily distractions landing nearby; my arm having atrophied during a period in which my weight dropped more than 3 stone; my infant granddaughter Niamh visiting me in the Great Western Hospital in Swindon after I was moved, just down the corridor from where she was born 4 months earlier..

Most people with Acute Myeloid Leukaemia (AML) get two or three choices:

1. Give up and probably die quite quickly
2. Elect to have the "standard" chemotherapy which may add a year or two to their life's expectations. After the first round, if successful, continue for a number of rounds (approximately 1 a month for six months) until the cancer is judged to be in remission. It is not an exact science.
3. A sort of in between state where some glitch with the first round, in my case osteomyelitis, interferes with the chemo. In my case I spent two-and-a-half months in hospital while they tried to eradicate the osteomyelitis from my big toe and failed. 

At this point (May last year) I and most of the medical staff thought I was a goner with weeks or maybe a few months left. I was holding out for a second round of chemo but medical advice seemed to be that there was as much chance of the treatment killing me or committing me to many, many more months in hospital. There was a suggestion that I might never leave hospital.

I went with the best advice and decided against more chemo and here I still am, welcoming in 2026 with some of my key indicators still not looking too bad.

Above (l-r, top to bottom): Shan and Niamh in June; me, Kate, Shan and Niamh, also in June; Niamh and Georgie (her sister) sorting ou the plumbing; champion on real food last month; waking up after a car journey to visit us; slightly overwhelmed at her first nursery nativity party.

​I thought at one point that I might never be able to bond with Niamh outside of the hospital. Now she smiles in recognition and evident pleasure whenever I see her. I have no idea how long I'll still be around but I'll sure as hell cherish all the new gestures unfolding for as long as is possible.

So, I must stay positive and see what the next blood tests bring in February.

And, if things are looking good I'll have very little excuse to renege on my offer to Jonathan to make a few doors for the Puddifeet current house renovation.

[Endnotes]:

1. June: ​https://www.marksadventures.co.uk/all-personal-blogs/no-more-chemotherapy-chemo
2. Last key indicator test results - Blood element; my score; normal range
   1. Haemoglobin (Hb);          106;       130 - 180
   2. Red blood cells (BC);      6.4;         4.5 - 6.1
   3. neutrophils;                     4.6;         2-7
   4. platelets;                         136;        150 - 450​​