The meeting that followed Tom's early morning visit was, in its own way, just as significant as the visit itself.
If the problem was that nobody had full oversight of my case — that decisions were being made in isolation, that information existed but wasn't reaching me, that I was getting a different story from a different person every day — then the solution needed to be structural rather than symptomatic. Not just better communication on a given day, but someone actually owning it.
That's what the meeting with Alistair and Dr Ranatunge established. Alistair — the ward doctor who had already distinguished himself by reading the Clatterbridge guidelines on a Friday afternoon, actioning Vitamin K, and spending twenty minutes explaining things properly on his way out of a shift — would be my named point of contact. Dr Ranatunge would retain overall clinical responsibility. But day to day, Alistair would be the person keeping me updated, the person who knew what was happening, the person I could go to rather than whoever happened to walk through the door.
It was exactly what I'd been asking for. And for about a day, it worked beautifully.
The two things that then went wrong
The steroids had been reduced on the Saturday following our meeting. 145mg instead of 200mg — the first proper reduction, carefully agreed, part of a plan. By Sunday they were back to 200mg. Someone — a cover doctor, a different prescriber, someone who didn't know the plan — had put them back to the original dose without explanation, without telling me, without telling Alistair, without telling Dr Ranatunge.
I found out because I noticed. Not because anyone told me.
It was, in miniature, the entire problem of the last three weeks compressed into one incident. The plan existed. The right people knew about it. And then someone else undid it because the system doesn't have a reliable way of making sure the right hand knows what the left hand is doing.
And then on Monday, Alistair was off.
No explanation. No cover arranged. No handover to anyone who knew my case. The person who had been designated as my named point of contact — the structural solution to the structural problem — simply wasn't there. And Tuesday. And Wednesday.
I want to be clear: I don't blame Alistair. People get ill. Things happen. He came back and when he did he was, as always, excellent. But the system that was supposed to prevent exactly this kind of gap failed again, in exactly the same way it had been failing for three weeks.
I was, by this point, genuinely struggling. Not just frustrated — struggling. The mental load of nearly four weeks in hospital, of fighting for every hour outside these walls, of a liver that wouldn't move, of promises that kept not quite being kept — it had accumulated into something heavier than I'd felt at any point in this journey. Not heavier than the diagnosis. Not heavier than the seizure. But heavier than I'd expected the side effects to be, and heavier than I felt equipped to carry alone.
And then, completely out of nowhere, the liver started coming down.
Nothing had changed. No new medication. No biopsy result directing a different approach. No Infliximab. No escalation. The same drugs that had been doing nothing visible for weeks were suddenly, quietly, doing something.
Monday: 1,900.
I didn't want to get excited. One good reading after weeks of bad ones isn't a trend.
Tuesday: 1,700.
Okay. Two days. Still cautious.
Wednesday: 1,600.
Thursday: 1,400.
Friday: 1,300.
From a peak of 2,500 — a number that had frightened Dr Ranatunge, that had prompted emergency biopsies and talk of liver specialists and escalation plans — to 1,300 in the space of a week. Without anyone quite being able to explain why. The MMF reaching therapeutic level perhaps. The body finally responding. The inflammation running out of steam. Nobody knows exactly. But it's happening.
Dr Ranatunge, when I saw her on Friday, seemed genuinely relieved. The steroids have now been properly reduced to 145mg — not for one day before someone reverses it, but properly, with a plan. Three days at this level, Monday bloods to assess, and if the liver continues to drop or even holds steady — discharge. Tuesday or Wednesday next week. Home.
The things that kept me going
Somewhere in the middle of all of this — the steroid confusion, the missing Alistair, the waiting, the not knowing — there were moments that mattered.
Albert's football on a Saturday morning. Being there for it, even for a couple of hours, even exhausted and walking carefully and probably not looking much like a football coach — it was worth every bit of the effort it took to get out.
Florence's ballet show. Once a year she performs — this year she'd specifically taken extra classes to be in more shows, which tells you everything about how seriously she takes it. Mum and dad came up for it. Watching Flo on stage, knowing what she'd put into it, knowing what the last few weeks have been for our family — that was something I won't forget in a hurry.
And today — Ben. One of my two best men at our wedding, someone I've known since university in Lincoln despite us growing up twenty minutes apart in Colchester — he drove up from a family weekend in Mansfield to have lunch with me. We went out, ate properly, talked properly, laughed properly. The kind of afternoon that reminds you there's a world outside these walls that's still there, still warm, still waiting.
And then there was Brian.
Brian arrived on the ward on Saturday — nearly ninety years old, RAF Wing Commander, veteran of Iran, Iraq and the Falklands, and apparently on first name terms with both the King and the Prime Minister. He was grumpy, confused, and kept setting off his bed alarm in the night by getting up repeatedly — which did very little for my sleep pattern during what was already a difficult week. He needed a blood transfusion and wasn't happy about any of it. He wanted to go home. He threatened to call the Prime Minister about it on several occasions.
One night around 1am I got up for a wee and checked on him — he'd mentioned cutting himself and seemed a little uncertain. He said he was fine and had pressed his buzzer, so I went back to bed. I was woken shortly after by nurses rushing in. Brian had, in his words, been trying to turn his drip machine off so it didn't wake me. What had actually happened was that he'd unscrewed the drip and blood had gone everywhere.
He was due home the following day — and, after what I can only assume was a significant cleaning operation, he made it. I like to think he got his golf in somewhere (if he even plays!).
Where things stand
The liver is coming down. The steroids are being reduced properly. The bowel has been settled for well over a week. The cancer, as Tom told me at 7:30am on Wednesday morning, is responding in ways that a doctor who'd been on call for twenty-four hours called amazing.
Tuesday or Wednesday. Home. Potters on the 7th of August.
Monday's bloods will tell us whether that's real. I've learned not to get too far ahead of myself in here — promises have a habit of meeting reality and coming off worse. But for the first time in four weeks, the direction of travel feels genuinely right.
