We have just been up to the hospital to begin a year’s course of chemotherapy. Abi also had a scan this morning. That was so we had a benchmark against which the success of the treatment could be measured. So it’s been a busy day. In fact, now that I’ve stopped ferrying Abi between appointments, and I am not using all my mental resolve being a reassuring presence for my daughter, I’m only just beginning to realise just how momentous it has been.
The whole trip began the evening before. Sarah came and fetched Kara at 5, and Abi and I jumped on a train shortly afterwards. We stayed overnight at my goddaughters so we could get to our 9 a.m. MRI appointment more easily. I would have gladly got the train on the day itself. Unfortunately, a return train ticket, leaving at 7 a.m., cost an extortionate £86. That meant that 2 hours and 30 minutes of travelling equated to a pro-rata hourly rate of £34.40, or more than five times the UK’s national minimum wage. At that rate, can trains still be labelled “Public Transport”? Going up the night before meant the fare was less than half that cost (but still expensive). However, Sunday train travel in the UK is a bit of a lottery, and, unfortunately, it proved to be the case. We had just four minutes between connections for our train, and when we arrived at our local station, the first train was already shown as delayed by two minutes. Meanwhile, a train going in the other direction (which we could have taken to get a slightly later connection further down the line), came and went. As I was watching that disappear into the distance, suddenly the board showed our train was going to be twenty minutes delayed, not two. The upshot was that we would miss our connection, so we had to cross the platform and wait twenty-five minutes for another train. And it was cold, wet and windy too. The only consolation was that Abi and I snuggled up tightly, which was lovely. Thankfully the rest of the journey was uneventful, and we made it to my goddaughter’s around 8.30, albeit an hour later than we should have done.
By 7.30a.m. the next morning, Abi and I had washed, changed and had eaten breakfast, so we set out to the hospital amidst all the commuters. Not one of the faceless grey people offered Abi their seat, so she had to wait for someone get off a few stops later before one became available. It’s a shame that people have become so selfish. If only they realised that giving up something for those less able brings joy.
By 9 a.m., Abi was happily watching Finding Nemo while being scanned. I was sat beside her, reassuringly stroking her left foot. A nurse came in to give Abi a shot of contrast halfway through. She applied some numbing spray on the crease of Abi’s left elbow and injected the contrast into one of the large veins there. Abi seemed totally unconcerned. In fact, she watched the whole thing, enthralled as ever. About 40 minutes later, the scan was done.
Abi and I then made our way up to the ward to get her shunt reset. We had to wait a while, but that was done by 11.15. We then made our way up to another ward to meet Abi’s Oncologist. More waiting, but by 12.15, I was looking at Abi’s scans on the Oncologist’s computer screen. At last, here was some good news; Abi’s tumours were stable. We talked briefly about his hopes for chemotherapy treatment for Abi; not cure, but tumour shrinkage and for Abi to stay mostly unaffected by her disease. We also spoke a bit about how a tumour had appeared in the hypothalamus. It was probable that tumour cells had “broken off” from the tumour of the cerebellum and had travelled around to the hypothalamus via Abi’s CSF. That’s why Abi’s tumour was now referred to as a Disseminated Pilocytic Astrocytoma - this was not a new tumour, but a kind of “son of” her original tumour on the cerebellum. CSF also moves down the spine, so that’s why that had also been scanned a few weeks ago.
By about 12.45, we had finished our discussions and the Oncologist had gone through his usual strength and coordination tests on Abi. He then led us through to Safari Day Care, where Abi was going to be given her first bout of chemotherapy. “Good luck,” he told me, shaking my hand.
Abi was weighed and measured (19.04 kg, 1m 23cm), and then some numbing cream was applied to her port, ready for an injection of Vinblastine. The cream would take forty minutes to work, so Abi and I went down to the canteen to get some lunch.
Abi wasn’t happy at the thought of another injection. She wouldn’t walk beside me and we arrived at lunch five yards apart. “Do you want a fruit salad, Abi?” I asked. She shook her head, sulkily. “A sandwich?” The same reaction. “How about some chips, Abi?” She nodded, still sulkily, but chips were too hard to resist. “Sorry Abi? Was that a yes?” I asked. “Yes, Daddy”, she told me, stubbornly. Half a plate of chips and a few games of Angry Birds later, and her mood had improved remarkably. So we went back up to the day care ward in far better spirits than we left.
Back upstairs, I managed to frighten one of the nurses, who thought that my pretending to be shot by Abi was actually me collapsing with a heart attack. Oops. We had a laugh about it afterwards, though. “If whatever you do now doesn’t work out, I think you could have a decent career on stage,” she told me.
It wasn’t until 2.45 that we were led through so Abi could be given Vinblastine. In the treatment room, Abi herself took off the plaster that had been put on the port to hold the numbing cream in place. The nurse then gave the area a wipe, at which point Abi cried out in pain. She refused to have anything else done. “Come on Abi, you can do this”, I told her. “No. I can’t,” she moaned. “Yes you can, Abi”, I said firmly, while simultaneously attempting to reassure her by stroking her forehead. “No. I. Can’t. Daddy,” she repeated through her tears. “Abi, you have to do this. Now come on, be the big strong girl I know you are.” “No, Daddy”, she pleaded. But I could feel her resolve melting away. “The nurse will be really gentle now, Abi”, I said, half asking the nurse to be exactly that. The nurse understood and proceeded very slowly and gently. Without any more drama, a sample of Abi’s blood had been taken and she had been given anti-sickness and Vinblastine. A plaster was put on the small wound caused by the needle, and then we were done. We were allowed to go home immediately afterwards.
I had hoped to avoid chemotherapy, but with all the recent bad news, I was glad to be acting and getting it underway. And I hoped the unremarkable start to treatment would continue throughout the year.