Three weeks since the last update. Time has flown by — which is either a sign that life is getting more normal, or that I've been asleep for most of it. Possibly both.
The headline is simple: I thought I was nearly off the steroids. I wasn't. But I'm closer now than I was, and for the first time in a few days I'm actually starting to feel better. So let's call it cautiously good news and move on before I jinx it.
The steroid wean — the plot twist
The plan was straightforward. Wind down to 4mg, then zero. I was days away.
What actually happened was that the wean hit me harder than expected. The tiredness had been building for a coule of weeks — not just tired, but the kind of exhausted where sleeping 14 to 16 hours a day starts feeling normal. And then the kids went back to school and, as reliably as autumn itself, brought a cold flu bug home with them. Combined with the steroid withdrawal symptoms I was already managing — nausea, dry mouth, weird taste and smell, headaches — I ended up feeling genuinely awful.
Not at my own request, but at Sam's insistence, I went back in to be checked over. Not an admission — just an assessment. Blood tests came back fine, which was reassuring. But sleeping 14 to 16 hours a day, even in the context of a steroid wean, warranted proper eyes on it rather than just riding it out at home.
The outcome: steroids increased back to 8mg for another week, then 4mg, then zero. A slight delay from where I thought I was. Frustrating — but after a couple of days back on the slightly higher dose I'm already feeling meaningfully better, which tells its own story about how low the cortisol had dropped.
Nearly there. Again.
What's coming in October
The MRI and CT scans are still being arranged — dates are being chased. Once those happen, there'll be a meeting with Dr Ranatunge to review the results and map out the next phase of treatment.
If the scans show what everyone hopes — continued progression in the right direction — the conversation will turn to a single dose of nivolumab. Not the full ipi/nivo combination that caused so much chaos with my liver and bowel earlier this year. Just a nudge. A single dose, carefully considered, to keep things moving in the right direction.
That feels significant. A checkpoint where we find out whether the progress that's been visible on the outside matches what's happening on the inside.
I'm not thinking about it too hard until the scans are booked.
Everything else
Still waiting for sign-off from my oncologist to go back to work — I think it's an admin delay rather than any clinical concern, but it's frustrating when the good days are genuinely good and I want to be useful again.
Dale Park Rangers are back in action for the new season — which means I'm back on the touchline, in whatever capacity the legs allow on a given morning. Football continues regardless.
Hoping to get down to West Ham over half-term — a couple of games coming up and Albert won't need much persuading.
Not much else to report. Lots of sleeping. Lots of feeling a bit rough. A small but meaningful improvement in the last couple of days.
The scans will come. The steroids will stop. The next chapter of treatment will begin.
One step at a time.
