Nobody told me it would feel like someone was slicing my penis in half.
That's not the kind of thing that appears in the immunotherapy leaflets. The leaflets talk about fatigue and flu-like symptoms. They mention, in passing, that some patients experience urinary discomfort. They don't quite capture the reality of lying awake at 3am, counting the minutes between trips to the toilet, audibly screaming in pain every time you pass water.
But let's start at the beginning.
The first sign came on the Wednesday evening — the night after immunotherapy. I went for a wee and felt a burning sensation that I can only describe as deeply unpleasant. I mentioned it to Lucy, who told me calmly that it sounded like a UTI. Women get them all the time, she said.
I had never had one before. I said so. She gave me a look of complete sympathy and said she hoped I never had another one.
She was right to say so.
Through Wednesday night I was up repeatedly, constantly feeling like I needed to go, knowing that by morning I'd need to phone the acute assessment unit. I called on Thursday morning. Increase your water intake, they said. Come in for bloods and a urine test. I went in, waited five hours, came home with antibiotics. Frustrating but manageable. One side effect, one prescription, sorted.
Or so I thought.
Our friends Kate and Kev and Heather arrived that weekend with their children — John, Eva, Eleanor, Seb and Alex — for a couple of days during half term. I'd been looking forward to it enormously. What actually happened was that I came to bed early every single night, barely surfaced during the days, and felt a creeping guilt about not being present in the way I'd wanted to be.
They were wonderful about it. The adults cooked, looked after the kids, kept everything running. I sat and watched and tried to be there in the ways I could manage. I know they understood. It didn't stop the guilt.
On the Saturday — after they'd left — the symptoms started escalating.
The pressure began building around what I thought was my prostate or bladder. The urge to go was constant — every fifteen minutes, back and forth, nothing coming, just the sensation of urgency with nowhere to put it. And then when I did pass water the pain started climbing. Five out of ten. Six. Seven. Eight. Nine. Ten. The fifteen minutes before and the fifteen minutes after each visit to the toilet became their own particular kind of ordeal — audible screaming, not theatrical, just genuine involuntary pain response. It was not nice in the slightest.
I called the unit on Sunday. Urine results still not back. Could be the wrong antibiotic — we'd know when the results came in. Come in Monday if no improvement.
Monday I came in. Lucy dropped the kids at school and we drove to Castle Hill knowing, from the Thursday before, that five hours was the minimum. What we didn't know was that by five o'clock I'd be told I wasn't going home.
The word colitis had been mentioned. Inflammation of the colon — a known but serious immune related side effect of ipi/nivo. Potentially significant enough to require stopping one or both of the immunotherapy drugs, increasing steroids, and pausing treatment for an unknown period. They couldn't confirm anything without a CT scan. And later in the week, I was told, a colonoscopy.
For those unfamiliar with what a colonoscopy involves — it is a camera. Going up. You can probably fill in the rest.
The preparation for this procedure involved an enema at 8am the morning of the procedure. Someone turning up at exactly 7am with buttered toast — low fibre only — was a lovely start to the day. What followed was rather less smooth. The nurse responsible for the enema didn't appear until an hour and a half after I'd been waiting, by which point the drip I'd asked to have removed at 7am was still very much attached to my arm and I had been desperately needing the toilet for the entirety of the intervening ninety minutes.
When she finally arrived and administered the enema I lasted approximately two minutes before informing her that the situation was becoming critical. The enema is supposed to be retained for five to ten minutes. Two minutes was what I managed.
As it turned out, two minutes was enough.
The colonoscopy itself lasted about five minutes. Afterwards I sat in the recovery area for thirty minutes waiting for a porter while the staff around me discussed their plans for Saturday night. When the porter eventually materialised, the job took thirty seconds. The thirty minutes preceding it remains a mystery.
I was brought back to the ward having missed lunch, with a stonking headache from dehydration — nobody had offered me water or biscuits until I asked despite three hours nil by mouth — and was placed on yet another drip. This time ten hours.
The drip alarm started going off because it was running out of battery. I asked three times for a plug to be found. The same nurse heard me each time and didn't return. Eventually someone else came in response to the alarm, found a plug within five minutes, and the problem was solved.
I want to be clear: ninety-five percent of the staff at Castle Hill have been extraordinary. Genuinely, remarkably good. The remaining five percent have just been having a difficult day, or a first day, or a distracted day. I understand that. I just mention it because when you're lying in a hospital bed in pain, waiting for things that don't come, it is easy to feel invisible in a way that compounds everything else.
We called him Weird Doctor when he first appeared — unfairly, as it turned out, because he's actually brilliant and clearly cares enormously. He came to see me today, asked about the colonoscopy results — no visible colitis, biopsies taken for confirmation — and listened carefully when I told him that the weakness and lack of coordination on my left side had returned. Nine or ten near falls today. The wobbliness is back and it's horrible — that constant sensation of being about to tip over, of the ground not being quite where you expect it.
He's ordered an MRI scan — tomorrow most likely — just to check there's nothing concerning. He thinks it's probably a combination of dehydration, three days in bed, and the underlying weakness flaring up again. He was reassuring about the weekend — confident I'd be home in time for Albert's football match on Saturday, where my mum and dad are coming up to visit. If not Friday then Saturday morning at the latest, he said.
I'm holding onto that.
This week has been difficult without being the worst week. That feels like an important distinction to make.
I slept a lot — not in the thirty minute fragments of the steroid nights but in proper three hour chunks, day and night, the body insisting on recovery in the way bodies do. I watched every World Cup feature on BBC iPlayer. I watched Dear England — the four part Gareth Southgate series — and loved every minute of it. I paid £2.99 each for Netherlands vs Algeria and a few other friendlies on Amazon Prime because there was literally no free football available and my brain needed it. I built a World Cup app for The HBP Group from my hospital bed and launched it to the company. I validated a betting system against 2022 knockout stage data at 3am.
The wobbliness is what gets to me most. Not the UTI — as awful as that was, it's improving. Not the endoscopy — camera up the bum, five minutes, done. The wobbliness, the near falls, the left side not doing what I ask it to — that takes me back to the worst of the Castle Hill recovery, to the catheter days and the commode days and all of that. I don't want to go back there.
But I also know what the alternative looks like.
Several people have said to me this week that they feel guilty complaining about their own days in comparison to what I'm going through. And I understand the sentiment entirely — but I want to gently push back on it. I can hear people on this ward going through things ten times worse than me. I have no monopoly on pain or bad days or difficult circumstances. Neither does anyone else. Context is everything, and everyone's version of hard is valid.
What I do know is this: immunotherapy is not what I expected. I expected tiredness. I expected flu-like symptoms. I did not expect colitis, or a UTI that escalated into screaming agony, or the wobbliness returning, or a week in hospital ten days after my first infusion.
But the alternative is letting the cancer do whatever it wants. And that is not something I'm prepared to accept.
So we adjust. We learn what my body does with this treatment. We manage it better next time. We carry on.
One step at a time. As always.
