I jinxed it, didn't I.
Chapter 19 was called "Ten Quiet Days." I wrote about getting back to normal, feeling well, doing some work, cooking properly. I practically signed off with a cheerful wave and the suggestion that having less to write about was probably a good sign.
Within days, I was back in Castle Hill.
It started, of all things, with being called fat by two doctors on the same morning.
The Monday after my last blog, I saw Dr Aung and then Dr Ranatunge in the same day, and both of them — independently, without any apparent coordination — made observations about my weight. The steroids, as it turns out, had done what steroids do. I had been officially informed by two medical professionals before lunchtime that I had put on weight. Officially both old and overweight, as well as everything else. Lovely start to the week.
The following day I went to the eye hospital, where after five different imaging tests I was told that my vision problems had nothing to do with the immunotherapy whatsoever. I was simply getting old. So within the space of two days it was confirmed: old, fat, and in need of reading glasses. On the bright side, the prescription reading glasses I subsequently got from the optician have made an enormous difference — slightly different prescription in each eye, not very strong, but transformative for the headaches and the blurring. That particular chapter is, happily, closed.
The week that followed was actually fine. I worked, I ticked along, I felt comfortable. The glasses helped. Everything felt manageable. I should have known better than to think that would last.
The following Monday I went in for routine toxicity bloods — the regular check-in the team use to monitor how everything is sitting after immunotherapy. I'd had a slightly dodgy stomach that week, nothing dramatic, but enough that I knew the plan to wean steroids faster might need to be put on hold. I went in expecting to have that conversation. What I didn't expect was the liver.
Normal liver enzyme levels are apparently around 34. Mine came back at 283.
The working assumption was immunotherapy-related hepatitis — the immune system doing the same thing it had done to my colon, but to my liver this time. Potentially a viral infection instead, but unlikely. I was booked back in for Thursday to see whether the number held or changed.
I felt absolutely fine on the Tuesday and Wednesday. Worked normally. Went to football training on Tuesday night. Watched England on Wednesday. Completely normal week, by recent standards. And then on Thursday the number had gone from 283 to over 800, and I was told I wasn't going home.
The admission itself followed a now familiar pattern. Drips on Thursday and Friday, steroids, doctors, a plan forming. The working assumption was confirmed: immunotherapy hepatitis, the immune system attacking healthy liver cells just as it had attacked the colon. In one sense, frustrating. In another, possibly a sign of how aggressively my immune system is responding to everything — which, given that the original lump has now disappeared, might not be entirely bad news. We'll find out.
Friday was difficult. The colitis had flared up alongside the liver situation, which meant I didn't feel great. And then Saturday came.
I've mentioned the weekend staffing situation at Castle Hill before. I'll try not to repeat myself too much, except to say that this weekend was no different. The place went quiet. I made requests for drips on both Saturday and Sunday — eventually got them both times, but it felt more like those requests were granted to stop me complaining than because anyone was actively looking out for my care. I asked to see a doctor on both days because I genuinely didn't feel well — stomach cramping, dehydrated, uncomfortable. I never saw one.
The worst of it was missing Dale Park Rangers presentation day on the Sunday. Albert's end of season presentation — the day the kids get their trophies. I'd been looking forward to it for weeks. I just wasn't well enough to go. I recorded a video from my hospital bed instead, watching the whole thing remotely. The day went ahead without me, which was something. But it wasn't the same.
The boredom of a long hospital weekend is its own particular experience. I've now watched everything I can find to watch. The World Cup has started bleeding into very late nights — I stayed up for the England game, which was supposed to kick off at 1am and eventually started at 2am after a storm delay, which tells you everything about the logistical reality of this tournament. England won 3-2. Brilliant game. Worth every minute of the wait.
But mostly it was waiting for Monday. Waiting for the hospital to come back to life.
On Monday, Dean came to see me first. The news wasn't great — liver enzymes had climbed over the weekend, hitting 1,000 and then 1,700. Incredibly high for what should be a number around 34. No symptoms still, but the number itself is serious enough to demand proper management. Dean said I could potentially be out by Friday, which was disappointing given I'd hoped for sooner.
An hour or so later, Dr Ranatunge came in as well, which I hadn't expected. She was, as always, positive but non-committal — but reading between the lines, she seemed to be thinking more in terms of weeks than days. She also confirmed I'd be referred to a liver specialist and booked for a liver biopsy, just to rule out any non-immunotherapy cause and make sure nothing is being missed. She's fairly certain this is immunotherapy-related, and she thinks I'm on the right medication, but she wants every angle covered. Given the pattern of the last few months, I appreciate that approach.
The practical consequences are starting to add up. I'll miss my fifteenth wedding anniversary on Thursday. I may miss Florence's fourteenth birthday on the 14th of July. I'm hoping to negotiate day release on Saturday for Albert's next football match — similar to what happened during the colitis admission — and to find a way to mark Flo's birthday even from a hospital ward if it comes to it.
Lucy has been, as always, extraordinary throughout all of this. Visiting, bringing supplies, keeping everything going at home with the children while somehow also being the person I lean on for everything else. Fifteen years of marriage on Thursday, and this is how we're spending it. There will be better ones ahead.
The liver numbers need to come down. The MMF — mycophenolate, the new drug added to target the liver inflammation specifically — needs two weeks to show its full effect. The steroids continue. The blood tests happen every day. We wait, and we watch the numbers, and we take it one step at a time.
