23 Jan 2020 – Thursday
I have a set day for my chemo. Every other Thursday. Each time there’s a set of drugs taken by mouth and by infusion. The nurse sets me in front of the TV set. A nice lady comes in from the kitchen with the set menu. Trouble is I’ve been here so often, there’s an association, ham salad sandwich equals drugs and beginning to feel crappy. I don’t order anymore.
So the scene is set, and the nurses set to work on me – this chemo stuff is not as simple as setting a bone, but they check the iPad and monotonously progress though the same set routine. At each drug change the pump is set to new timing, and while they set off to see other patients, I wait. My chemo day starts at 8am and at this time of year the sun had often set before I leave.
Thursday is day 1. I leave attached to a pump, which runs chemo into my blood for another 46 hours. Each subsequent day of my 14 day repetitive set is different. I’ve started recording them, building up a set of data to which I can refer. It sets my mind at rest to know that feeling sick, hiccupping, and nauseous is the way it goes for days 1-3; day 3 is disconnection from the pump; day 4 is blood boosting injection; days 4-5 add burning reflux; day 6 is usually bloody nose and stomach pains start. That sets the stage for days 7-11 where I work from the small room. Days 12 and 13 I feel good – last time I even spent an hour on the bike.
The good news – it would seem my blood pressure has dropped, my heart rate is down, I think my blood clots have dissolved and my lungs have started to recover. I won’t be joining the jet set any time soon, but I might manage some more outdoor activities. Just got to cram them into 2 days each fortnight.
Going back to the hospital each Saturday to disconnect my pump was proving a pain, and since I have to live with chemo for life, I thought I could do it myself. So before Christmas the nurses and I rehearsed our set and now I’m a solo performer. 3 infusions, removal of the needle from the docking station in my torso, and the painful bit – removing a 3 inch square plaster set fast on a hairy chest. Chemo doesn’t seem to have slowed chest hair growth.
Unfortunately though, it appears I’m not part of the in set. The PIPAC trial entry criteria have been set. I got, a presumably set text, rejection. Only the NHS can run trials, and they don’t like taking chances. The scans show the peritoneal cancer has progressed significantly from September to December. PIPAC is unproven at controlling the spread, the current standard approach is systemic chemotherapy. Since PIPAC replaces 1 in 3 chemo cycles, they will not risk skipping a cycle for someone with advancing disease. The logical argument – to all but the NHS risk assessors – is if chemo is working for a patient, why trial PIPAC? Surely PIPAC should be specifically for those where conventional approaches have failed? But – no – their mind is set.
Go back many years and I know I was never in the top set for English. But I do remember, about age 13, flicking through a dictionary, set on finding the English word with the largest set of definitions. There, set on the page, I came across SET with pages and pages of definitions – that moment is set in my memory. And It’s true! The Guinness World Records acknowledges SET as the winner. Referring to latest Oxford English Dictionary (1989), set has over 430 listing just as a verb, but it can be noun and adjective too. No wonder then it also has the longest entry at 60,000 words.
Returning to now – I’ve found Facebook friends for which chemo has shrunk their peritoneal cancer, so I’ve set an alarm for 3 months’ for a PIPAC review.
The fat lady has not yet started her set.
Up the Back Passage 