We knew that the tumour would return, of course, and we knew there was another treatment to try after the last lot. I guess that I thought the last lot of chemo would’ve been this lot – PCV – as it’s specifically for brain tumours. However, it seems we were to endure the first and second round of chemo before this more gruelling one of six cycles lasting 42 days.
So what is it?
- P – Procarbazine (taken at home)
- C – Lomustine or CCNU (taken on day one at home
- V – Vincristine (given on day one through a cannula at the Chemotherapy Day Unit)
A week before our first cycle Nige had a blood test. This needs to be done before each of the six cycles to ensure that he’s okay to proceed. Then on the 24th July, at 2.15pm, he took his Ondansetron (anti sickness) pill. They tell you to take this between 30 and 60 minutes before the treatment although I never give it an hour before in case the appointments are running a bit late. Nigel’s appointment was at 3pm but we would’ve been fine until quarter past. The 24th was a mixed up kind of day. Firstly, it was Harrison’s 24th birthday – 24! I was so thankful his girlfriend was down for a few days and we did have some birthday giggles in the morning whilst Nige slept. But it seems that the tumour has really taken hold of him, causing his speech to slow down and even affecting his eyesight. Still, we made it to the RUH and Nige shuffled into the Oncology Unit where we waited just a short time before being called through to the Chemotherapy Day Unit. Our chemo nurse was Annie and she went to great lengths to explain what was going to happen. Apart from struggling to remember his name (slightly alarming) Nige coped brilliantly. The cannula was placed first time and after just 20 minutes or so we were all done. Annie brought over the bag of drugs that needed to go home – Procarbazine, Limustine, Ondansetron and Metoclopramide – and went through the dosage and timings with me:
- Day 1 – Ondansetron (home), Vincristine (hospital), Ondansetron & 5 x Lomustine (home)
- Day 2 – (all at home) Ondansetron, 4 x Procarbazine (after food), Ondansetron
- Day 3 – (all at home) Ondansetron, 4 x Procarbazine (after food), Ondansetron
- Day 4 – (home) 4 x Procarbazine (after food)
- Day 5 – (home) 4 x Procarbazine (after food)
- Day 6 – (home) 4 x Procarbazine (after food)
- Day 7 – (home) 4 x Procarbazine (after food)
- Day 8 – (home) 4 x Procarbazine (after food)
- Day 9 – (home) 3 x Procarbazine (after food)
- Day 10 – (home) 3 x Procarbazine (after food)
After which there’s 32 days rest before it all starts again.
In the hospital we were given a ‘Chemotherapy Diary’. It’s full of all Nigel’s medication and has two pages of symptoms to check for. If he’s experiencing any highlighted in yellow, I need to ring the Chemotherapy Helpline. The problem I have here is that many of the symptoms, I feel, are related to the tumour and not the chemo… It’s so tricky to judge. Let me explain.
When we returned from the hospital, where he was already a bit disorientated and had spoken slowly, he went to bed and wasn’t hungry at all. In fact I struggled to get him to take his medication as he was so sleepy! Tuesday, he ate breakfast in bed and got up just before lunch, when he ate a tuna mayonnaise salad sandwich. He managed a large dinner too, going to bed at about 10pm. Hmmm, things were looking up. Wednesday he awoke with a headache and refused breakfast but went on to eat a large lunch and dinner. He went to bed at 7.30 though. By the end of the week it was clear that the chemo induced tiredness had kicked in but that the appetite was still there. Nige was struggling to use cutlery though and I definitely need to rethink soup in bed.
By Tuesday, 1st August things were looking grim. Virtually no speech and some very crooked facial expressions, along with a complete collapse down the right side of Nigel’s body induced me to call 999. And not a moment too soon. We were admitted to hospital at 7.30pm and Nige was rushed through for a CT scan.