Tomorrow I take my last methylprednisolone tablet.
I say probably, because life has a habit of proving me wrong on these things. The last time I said I was nearly off the steroids, I picked up a cold from the kids three days before the finish line and ended up back on a higher dose for another ten days. So I'm being cautiously optimistic rather than triumphant. But tomorrow, all being well, is the last one.
There is a small asterisk. I'm still on Budesonide — a steroid specifically for the gut, left over from the colitis. But it doesn't have the same systemic effect on the rest of the body that methylprednisolone does. Dr Ranatunge has also told me that I'm actually quite immune to steroids — they don't typically do much for me, and it's been other drugs that have done the real work. So the chances of needing them again at this dose are, hopefully, low.
Which is good. Because coming off them has been one of the harder things about this whole journey.
Three months and counting
When I look back, I first started on steroids at 200mg somewhere around the beginning of July. That's well over three months ago. Three months of never quite knowing what you're going to get when you wake up. A bad day can mean being in bed all day — genuinely sleeping for the whole thing, completely wiped out. A good day can feel almost normal. Not 100%, but good enough to get up, do things, think clearly, feel like yourself.
The uncertainty is its own kind of exhausting. You can't plan. You can't commit. You can't promise anyone anything because you don't know how you'll feel tomorrow, let alone next week.
And somewhere in those three months, my fitness has just disappeared.
Less than six months ago I was playing football every week. Active, coaching, running around with the kids at training. Now I can barely walk for ten to fifteen minutes without being completely out of breath. The weight has gone on. The face has changed — I've developed what can only be described as a big fat steroid face, which I'm reliably informed will start to resolve once the medication stops. I'm holding onto that promise.
Getting the fitness back is another journey in itself. One I'm looking forward to starting properly — but realistic about how long it'll take.
What's still ahead
Being off methylprednisolone doesn't mean being off everything. There's still the colitis medication, the liver medications, the diabetes tablets — all to be weaned off one at a time, in the right order, at the right pace. It's a longer tail than I'd like.
But the big one ends tomorrow.
And in the next few weeks — MRI and CT scans. The first proper look at what's happening with the cancer since everything kicked off with the liver and the colitis and the hospital admission. That will shape what comes next. A meeting with Dr Ranatunge to follow, and then — hopefully — a conversation about the next phase of treatment. A single dose of nivolumab if the scans show what we're hoping. A nudge in the right direction.
October feels significant.
The honest bit
I don't talk about the financial stuff much on here. But it's there, quietly in the background — the uncertainty about what happens if things don't go to plan, what that means for the kids, for holidays, the house, for the future. It's hard to plan anything when you don't know how you'll feel from one day to the next. So everything becomes spontaneous. Which works, up to a point, but we probably need some bigger things to look forward to when the time is right. Things that don't carry the weight of not knowing whether I'll be well enough to enjoy them.
The kids have been the priority throughout — keeping football going for Albert, keeping dancing going for Florence. We've managed that. That matters more than most things.
And people. I had so many messages at the beginning — more than I could properly respond to at the time. Some of those check-ins have naturally drifted as months have passed, as they do. But there are a lot of people I want to properly reconnect with. Real catch-ups. Actual (non-alcoholic) drinks. Conversations that aren't about how I'm doing medically.
I'm nearly ready for that. Soon, hopefully.
