I took my last methylprednisolone tablet on the 8th of October.
I’d been waiting for that moment for months. And then it arrived, and I was still tired, and nothing felt immediately different, and the anticlimax was almost impressive in its completeness.
That’s steroid withdrawal for you.
Coming off the steroids
The wean itself has been one of the more unpleasant chapters of this whole journey — and given what the last few months have involved, that’s saying something.
The tiredness is constant and strange. You can sleep, but sleeping doesn’t make you feel better. You can stay awake, but staying awake doesn’t make you feel worse. It just sits there — this permanent, hovering fatigue that nothing quite shifts. You live inside it rather than escaping it.
The nausea is the same. It never fully arrives and never fully leaves. Sometimes eating helps. Sometimes not eating helps. Sometimes neither makes any difference and it just loiters in the background, making everything slightly worse than it needs to be. Paracetamol takes the edge off it. Peppermint tea is the only home remedy that gets anywhere close. I’ve tried most of the others.
And then there are the phantom smells — my personal favourite side effect of the whole experience. Certain places in the house, cleaning products, sometimes just being out and about — and suddenly something smells absolutely awful. Lucy guarantees me, every time, that there’s nothing there. I believe her. My nose disagrees.
The honest answer is that steroid withdrawal is unpleasant, it affects everything, and there’s no quick fix for it. It can last anywhere between two and eight weeks. I’m about two weeks in. I’m also now coming off Budesonide — the bowel-targeted steroid I was put on for the colitis — which adds its own layer to proceedings. The body is doing its best. I’m trying to be patient with it.
The scans
In the middle of all of this came the scans. A CT for the body and an MRI for the brain — the first proper look at what’s been happening since everything kicked off with the liver and the colitis and the admission in the summer.
I’m so used to these now that the scans themselves barely registered as events. It was the meeting with Dr Ranatunge on Monday that I’d built up in my head over the preceding days. I’d started to feel the size of the original lump again — there had been a point where I’d genuinely thought it had gone — and that had set my expectations somewhere between cautious and quietly dreading it.
The results came in two parts.
The body: The lump has grown slightly. The cancer on the adrenal glands is still there. The spleen wasn’t mentioned again — that’s two scans running now where it hasn’t appeared, which feels positive. No new sites. No spread to anywhere previously unaffected. The growth that was there was described as fairly common given the circumstances — my second round of immunotherapy was due in August, which is now almost two and a half months ago. Some regrowth in that gap, apparently, is not unexpected. And the absence of any new locations at this stage of the journey was described as a good sign.
Frustrating, but not as bad as I’d feared.
The brain: The six lesions treated in the original Gamma Knife surgery back in April have all responded well. But there’s a new lesion. One new one, which Sheffield would need to assess as a candidate for further radiosurgery.
A few days later I heard that it is a candidate. And so next week I’ll be going back to Sheffield.
The thing I really wanted to avoid
I’m not going to pretend I’m fine about this.
Going through Gamma Knife surgery once was one of the most frightening things I’ve experienced. The mask, the frame, the stillness, the machine — none of it is pleasant. A few people have said “at least you know what to expect now,” and I understand why they mean that kindly. But I think not knowing what to expect last time actually helped. Knowing exactly what’s coming is its own particular kind of dread.
What helps — only slightly, but genuinely — is two things. First, that we know it worked. All six original lesions responded. Whatever else has happened since, the Gamma Knife did its job. Second, that this time we’re treating one lesion rather than six. Last time the treatment itself took four to four and a half hours. This time, once the scans and the faceplate are done, the actual time in the machine is likely to be around thirty minutes. That’s meaningful.
The other thing that helps is that I’m already on Levetiracetam — the seizure prevention medication that wasn’t in place last time. If it wasn’t for the brain seizure that followed the first Gamma Knife, I think I would have been absolutely fine afterwards. The treatment itself wasn’t what derailed me. So there’s some reason to hope this time is more straightforward.
The plan: Sheffield on the morning of Thursday 29th. Lucy and I are heading over on Wednesday evening for an early start — 7:45am. Our friends Kate and Kev, and Heaven and Ryan, are coming up with their children for the latter part of the week, which means the kids will have a wonderful time whatever state I’m in. And hopefully — genuinely, cautiously hopefully — I’ll be well enough to enjoy it too.
And then immunotherapy the week after
Single dose nivolumab on the 6th of November. Administered by injection this time rather than a drip. Expected to have no major side effects, or at least significantly reduced ones given the lower dose and the absence of the ipilimumab.
Everyone is conscious of what happened before. The colitis, the liver, the months of hospitalisation. Nobody wants a repeat of that, least of all me. But the cancer that has been quietly growing during the treatment gap needs something to push back against it. A single nudge, carefully delivered, with much closer monitoring from day one this time around.
If it works — and the first dose showed it can work remarkably well — we’re looking at a more regular schedule going forward. Treatment every three months. The body lesions monitored closely. Surgery or targeted radiotherapy on the lump and the adrenal glands as options if needed. More tools in the box than we had before.
Monday’s meeting was actually, in some ways, one of the most positive I’ve had with Dr Ranatunge in terms of what’s available and what’s possible. I came out of it slightly deflated — because the Gamma Knife news was the one thing I’d genuinely hoped to avoid — but looking at it clearly, the picture is more manageable than it could be.
What’s coming
This weekend — London. West Ham with Albert, food, a few activities with the family. Half term. Some time to breathe before it all begins.
Then next week — Sheffield. The mask. The machine. Thirty minutes. Home.
Then the week after — nivolumab. A single injection. Fingers crossed.
It’s taken a long time to get to this point. It’s going to be a tough couple of weeks. But it’s time to get on with it.
