I want to start this one differently.
Every chapter so far has found a way to end on something positive — a small win, a moment of humour, a reason to keep going. I'm going to try to do that again here, because I do believe it, and because I'm still here and still fighting. But I also want to be honest that this has been the hardest week of the whole journey. Not medically the most dramatic — though it's been that too — but the hardest to carry.
So let me start there, and we'll find our way through it together.
The medical picture
When I last wrote, we were cautiously hopeful. The new medication — mycophenolate, MMF — was supposed to bring the liver numbers down within a week or so. The colitis was supposed to be settling. I was supposed to be going home.
Instead, the liver enzymes climbed from 1,700 to a peak of 2,500, then started coming down — and then got stuck. Not dramatically worsening, but not improving either. Just sitting there, stubbornly, at roughly the same level day after day, while the colitis continued to flare in unpredictable cycles regardless of everything I was on.
The result was a conversation I wasn't prepared for.
Dean and Dr Ranatunge came to see me together one morning, and what they said — carefully, professionally, with obvious concern — was essentially that the medication I was on should be working, and they didn't know why it wasn't. They were, in their words, running out of ideas. They'd be referring me to a liver specialist. They looked genuinely worried.
I want to say something about that moment. When two doctors who have been calm and measured throughout months of this look at you with visible concern and tell you they don't know what to do next, something shifts. The background hum of worry that you've been managing to keep at a reasonable volume gets a lot louder. Words like liver failure start to occupy the space where reassurance used to be.
A few hours later I was taken for an emergency liver biopsy.
The specialist who performed it — a liver surgeon reviewing everything in full — was markedly more confident than that morning had suggested. Looking at the complete picture, his strong view was that this was immunotherapy-related hepatitis, exactly as had been assumed, and that a different combination or volume of immunosuppressants would likely get things moving. The biopsy itself would provide the detail needed to fine-tune that approach. Results in two weeks.
I'm choosing to hold onto his confidence, because it was genuine and it was specific. He'd seen this before. He knew what he was looking at. And he wasn't frightened by it.
A new tablet has also appeared on my bedside table each morning — Ursodeoxycholic Acid, a liver-protective medication that helps the liver process bile while the underlying inflammation is being treated. Someone vaguely explains each new addition. You take it on faith that it's part of a plan even when the plan isn't entirely visible.
The colitis continues to be investigated — a CT scan of the colon is now done, giving a clearer structural picture of what's happening. An endoscopy was offered and I declined. I've had one before. It's horrible. It's a last resort and we haven't reached that yet.
The personal picture
This is the part I want to write carefully, because it matters more to me than the liver numbers.
We made a decision early on — Lucy and I — that we would protect the children as much as possible. Explain things honestly but age-appropriately, and make sure their lives continued normally. Flo carries on with ballet. Albert carries on with football. Whatever is happening with me, they don't lose their routines and their normal childhood things on top of everything else.
What that means in practice is that the milestones matter. Getting out for Albert's football isn't a nice-to-have. It's fundamental to the promise we made. And this week there were several of those milestones, each of which required a fight that shouldn't have been necessary.
Our fifteenth wedding anniversary passed during this admission. Lucy and I have been through a lot in fifteen years, and this wasn't the anniversary either of us imagined. We'll have better ones.
Florence's fourteenth birthday was Tuesday. I'd asked at 9am whether there was anything medical planned for the day that might prevent me leaving at around half past three — so I could be home when Flo got back from school, open presents together, pop along to football training just to be there, and then go for dinner at the Greek restaurant in Hessle.
No response.
I chased at half eleven. Yes, I was told, a CT scan had been planned for today.
What time?
No response.
At one o'clock someone came in to tell me the CT scan was booked for three.
I'd spent the whole day planning it. Hour by hour, building it up in my head — presents, training, dinner, all of it. The kind of thing that when you're stuck in a hospital bed for weeks becomes the thing you hold onto. And then at one o'clock, four hours after I'd first asked, I found out it had been there all along and nobody had thought to tell me.
I'm not sure I can fully describe what happened next. I think the word is breakdown, though that feels dramatic. What I know is that I couldn't get the words out to explain why it mattered. I tried, and I cried, which isn't something that's happened much through all of this. People came in to see me and I couldn't articulate it properly, which made it worse.
What I can tell you is that crying at people, as undignified as it felt, worked where rational explanation hadn't. The CT scan was moved forward almost immediately. I got out as planned. We had dinner. Flo opened her presents. It was lovely. But I shouldn't have had to cry to make that happen.
Albert's football the previous Saturday had its own version of the same battle — every outing requires navigating a system that isn't designed for the human part of being a patient. But we got there, the team played well, I had a quiet afternoon at home afterwards, and it was fine.
The pattern is consistent though: every single time I need to step outside these walls for something that matters, I have to fight for it. Explain it. Justify it. Start again with the next person when the shift changes. Even when I feel completely fine. Even when it affects nobody here and nothing about my medication. The fighting is exhausting in a way that's separate from and on top of everything else.
The honest part
People keep telling me to stay positive. I know they mean it kindly.
But I don't think it's human to stay positive all of the time. I think sometimes you have to accept what's going on, sit in it for a moment, and just deal with it. Not every negative can be turned into a positive. Not every difficult day has a silver lining worth reaching for. Sometimes it's just hard, and the most honest thing I can do is say so.
This is the first time I've found it genuinely tough in that deeper way. Not just frustrated by the system, or uncomfortable physically, or scared for a moment and then reassured — but properly, persistently struggling. The mental load of being in hospital for nearly three weeks, not knowing when I'm going home, being told by doctors they don't know what to do next, fighting for every hour outside these walls, missing milestones and landmarks and normal life — it accumulates. And I think I'm feeling that accumulation this week in a way I haven't before.
What's coming still gives me things to hold onto. Flo's ballet show this weekend. Football. Hopefully a date to go home, even if it means coming back for blood tests. Potters with the family. The biopsy results. A plan.
I'm not giving up. I'm not even close to giving up. But I am finding it tough, and I think that's okay to say.
