It's been another three and a half weeks since I last wrote one of these. And if I'm being honest — not much has happened. Which, after the summer we've had, is exactly what I was hoping for.
The bear remains unpoked.
The steroid wean — the thing that's dominating everything
The main focus right now is the steroid wean, and it's taking up more mental and physical bandwidth than I expected.
Some days I wonder if it's going too fast. The tiredness can be extraordinary — not just tired, but a level of exhaustion that means sleeping on and off throughout the day without really meaning to. I'll take my steroids at six in the morning, feel reasonably okay, and then by eleven or twelve o'clock I'm completely wiped out. I'll sleep for a while, wake up feeling woozy and not quite with it, have some lunch, start feeling tired again, cook dinner, sort out the kids, and then collapse into bed — only to sleep straight through until further into the morning than I'd like to admit.
Other days I feel absolutely fine. That's the strange part — the complete unpredictability of it. A good day followed by a day where the sofa wins. No reliable pattern, no way of planning around it, just taking each morning as it comes.
I'm not very good at this. I'll be upfront about that. I'm not naturally someone who does nothing well. I get bored easily, I flip between projects, I have wonderful plans for the day and then the steroids have other ideas. I've started approximately seven things in the last three weeks and finished none of them. This is not a complaint — it's just an honest description of what recovering from four months of cancer treatment actually looks like from the inside.
The numbers — mostly fine
Blood sugar has been almost completely normal. The logic that it was always steroid induced rather than true diabetes appears to be entirely correct — fasting readings consistently normal, levels tracking almost perfectly with steroid activity. The diabetes checks continue, but they're becoming increasingly routine rather than concerning.
Phosphate has been low on a couple of blood tests — something to keep an eye on. Calcium remains stubbornly high — no symptoms, but it's the kind of thing that causes complications if it stays out of control for too long, so it continues to be managed.
The medication box is full. Colitis medication — still on it, can't wean until steroids stop. Liver medication — still on it, same reason. Diabetes medication on top. It's a lot of tablets for someone who feels, on the good days, essentially fine. But the logic is clear: the steroids are holding everything else in place, and until they're gone nothing else can move. Three weeks left on the steroids, then a two week settling period, then the liver medication can start coming down too.
Slow, but moving.
The work situation
I'm not back at work yet — not because I don't feel up to it on the good days, but because my oncologist needs to complete some documentation for my workplace before anything can be formally agreed. Dot the i's, cross the t's, and — as Wayne's World said — dot the lowercase j's. These things take time. I understand that. It doesn't make the waiting any less frustrating when you're someone who wants to be useful and contributing and have somewhere to direct the energy on the days when the energy actually shows up.
We'll get there.
The things that have happened
Because it hasn't all been sofa and steroids. There's been quite a lot, actually.
West Ham again — a second London trip with Albert. My mum's eightieth birthday. A football tournament. Albert's Dale Park Rangers back in training for the new season — which means I'm back on the touchline, in whatever capacity my legs will allow on a given morning. A pub quiz, which we won, and I'm taking full credit for because they've clearly been missing me.
Normal life, reassembling itself. Not at full speed. But reassembling.
What October looks like
I met with Dr Ranatunge recently and there's a clearer picture of what comes next — at least in terms of the next step.
In October I'll have both an MRI and a CT scan. These will be followed by a meeting with her to review the results properly. This is the moment that will really shape the next phase of treatment.
She won't commit to anything yet — and I respect that, because she shouldn't until she's seen the scans. But the direction of travel, if everything continues to progress as well as it has been so far, is toward a single dose of nivolumab. Not the full ipi/nivo combination that caused so much havoc with my liver and bowel — just a single dose of nivolumab, a nudge in the right direction rather than the full assault.
If the scans are good — and the signs so far have been encouraging — that's the conversation we'll be having.
October feels significant. Not scary, just significant. A checkpoint. A moment where we find out whether the progress that everyone can see on the outside is matched by what the scans show on the inside.
I'm cautiously looking forward to it.
Where things stand
Three weeks of steroids left. Two week settling period. Then the liver medication starts coming down. Then October — scans, results, Dr Ranatunge, and the next chapter of treatment.
