There’s nothing quite like an MRI brain scan to start your week off with a bang. Literally. Monday afternoon saw me at my second home, the Royal Sussex County Hospital, for the first of the latest round of scans. One of my many new friends, the pretty Spanish nurse was on shift as usual. She knows to call me “Bill” not William, and soon had me all prepped up. She’s called Aida, a lovely name, and kind of apt as she has a bum the size of the Albert Hall. The radiographer was a newbie, to me anyway, looked like he’d come to work on a skateboard, but knew I was an old hand at this too, so dispensed with a lot of the usual preliminaries and soon had my head locked in the vice in the big doughnut to be assaulted by a barrage of loud bangs and a cacophony of other deafening noises.
Tuesday was relatively quiet by comparison. Just a trip to Out Patients for my “bloods.” I like to get there early, before all the old gits who can’t use their bus passes before 9.30, but I was still 17th in the queue. A trainee, under the watchful eye of one of the senior nurses, drew the blood and did remarkably well, despite forgetting the magic words “sharp scratch” before sticking the needle in my arm. I reckon she’ll go far, and told her as much. I didn’t feel a thing.
Wednesday was the big day though. Firstly an appointment with Dr Cool-Dude at the Nuffield to get the results of my recent bowel scan. Turns out it still shows signs of infection; it’s swollen, inflamed and restricted, and my continuing foot problems are almost certainly connected due to this Reiter’s Syndrome I’d recently heard about. He booked me in for a colonoscopy on 1st June when he would investigate further, and try to effect some running repairs using a “balloon” to clear and open my bowel up. If that didn’t work, he’d try a stent, and if that didn’t work….oh, let’s not go there….
He also warned me against foreign travel before then as, although unlikely, the bowel could deteriorate and potentially block totally, and I wouldn’t want that happening in Portugal, particularly as the last remaining insurance company that would offer me travel insurance have politely told me to get lost as they no longer entertain people with a Stage IV terminal cancer diagnosis. So, not for the first time, our flights booked for next Saturday to Faro need to be cancelled. Oh well, don’t much like sardines anyway. Too fiddly.
There was no time to hang around. It was straight back to the RSCH, initially for an appointment with the fragrant Dr Westwell, and following that to the chemo ward for JJ number 76. She listened carefully while I relayed the news from Dr Cool-Dude, was pleased that I was at least walking without a crutch now, but threw me a massive curve-ball.
She explained that it certainly could not be ruled out that good old JJ (Pembrolizumab) was responsible for or exacerbating the bowel and foot issues. She really didn’t know as there were no previous cases to compare me to. She reminded me that Pembolizumab is only supposed to be a two-year course. By then most patients have been unable to continue to tolerate the drug, or it’s ceased to be effective. Nobody under her care has been on it for six years, or anywhere close. According to her I was a trailblazer. Imagine that. But she thought that it might be prudent to defer my latest round of JJ and monitor my situation, just in case we were doing more harm than good.
Even through my mandatory standard issue Covid mask she could see that the prospect of missing my JJ absolutely terrified me. As far as I’m concerned it takes priority over everything, and I wanted very much to take my chances. Eventually Dr Westwell agreed, albeit with reservations, and subject to my promising to keep both her and my CNS, Claire, fully and immediately informed if I experienced any deterioration or other side-effects.
So, a little later than planned, and more than a trifle relieved, I finally made my way up the stairs to the chemo ward. Another pal, Ryan the specialist chemo nurse, greeted me when I made my way into the ward and towards one of the big chairs.
“Hi, Bill, how’s it going? Good week so far?” he asked.
“Not bad Ryan” I replied “pretty standard, you know.”