It’s Friday 6th November, and today I had my second round of immunotherapy. Eight days ago I was in Sheffield with a metal frame screwed to my head.
The night before
Our friends Heather and Ryan kindly came up with their kids, Seb and Alex, the day before, so that Lucy and I could head to Sheffield and be ready for an early start. We were due at 7:45 and got there about 7:20. Another couple arrived at the same time, and I think we all assumed that whoever turned up first might be treated first. It turned out there were three of us being treated that day, and a brother and sister arrived a little after us.
We all got chatting. One lady was there for a non-cancerous tumour on her brain. A younger girl was in for her second set of treatment because she’d had so many lesions that they’d had to split it into two sessions. Next to that, my situation was seen as quite minor, which was oddly reassuring.
Gamma Knife, the sequel
Last time I was in a private clinic. This time it was Sheffield Hallamshire, and I have to say the care was fantastic, better than the first time round.
I was first up to have the frame fitted, and it’s every bit as horrible as I remembered. A big metal frame is clamped to your head, and the pins are screwed in until they touch your skull. There’s plenty of local anaesthetic, but even that hurts going in, and the feeling afterwards is awful. From there you’re taken straight into an MRI scan with the frame on. MRIs are never nice, and this one is the worst part of the day, but it’s over quickly.
About 45 minutes later we were called in for a quick meeting with the neurosurgeon, which never sounds like good news, and he did find something. As well as the lesion we already knew about, he’d found three more.
But they were tiny. The one we knew about was 4mm. My largest lesion last time was around 2.6cm. The three new ones were about 1mm each, and he said they could even have been there the first time round, just growing very slowly. They could all be treated in the same session, and the whole thing would take under an hour, compared with four and a half hours last time.
He also told me that the six lesions treated back in May have all responded really well and are shrinking, or in his words “melting away”. It’s a lovely turn of phrase, and it made me feel good about what was done and confident about what comes next.
I was out of treatment by about 11:30. They kept us for half an hour and then let us go, and we were home by lunchtime. Heather and Ryan had the kids fed and entertained. Soon afterwards Kate and Kev arrived with Eva and John, and for the rest of the weekend the house was full of friends and children. I was shattered and had to go to bed first, but it was lovely to have people around, and a great safety net in case anything happened.
Nothing did. No seizure, which was the thing I’d been dreading most. The only real side effects came from the pin sites, which gave me headaches that paracetamol could handle.
Hopefully that’s the last time I ever have to do it.
The Cinacalcet saga
The calcium tablets were the part I hadn’t planned for. They made me properly ill, and the sickness hit me in London. I’d been cutting the dose down and, after speaking to Cath at Castle Hill, I was told to take one dose a day. I couldn’t manage even that. I haven’t taken any for two weeks now, and I feel dramatically better.
I told Cath exactly that when we spoke yesterday. She understood and was glad I’d been straight with her, which is how it should work. The catch is that my calcium has crept back up, which is what you’d expect. It’s slightly elevated but not in danger territory, and it didn’t stop me having treatment. It did mean I was called in early today for a fluid drip beforehand, and I’ve been referred to a specialist to look at what can be done for the long term.
The injection
The drip went up just before 1pm, then came the nivolumab itself. It’s a single dose, given as an injection into the tummy rather than through a drip. It goes in slowly over five to ten minutes and stings a little, but it’s nothing compared with a frame on your head. After that I sat on a drip for two hours, and that was it.
I’m tired, but I think that’s mostly the tension of the day draining out. I don’t have any symptoms, and being off the Cinacalcet is helping a lot.
I’d got it into my head that this treatment came round every three months. It doesn’t. I’m back in four weeks, at the beginning of December, for the next dose. So it’s four weeks of fingers crossed for no side effects and no drama, so we can crack on and get ready for the next one. After last time, you’ll understand why I’m not getting ahead of myself.
