We’re packing for a holiday we might not be able to go on.
“How do you do it?” a friend asked the other day, “How do you keep being positive and optimistic and keep going?”
The answer is there isn’t really an alternative. Unfortunately, we can’t ask for any of this to stop so we can take time out. It will carry on regardless, so we have to as well.
We are waiting for test results for a scan Pete had on the 1st February. We see the oncologist on Friday. It feels like a long wait, but I try to hold on to two things. It’s February. If someone had told me in July that we’d be waiting on scan results in February I would not have believed them. Because back in July, just a couple of weeks after being told Pete had terminal cancer, the oncologist told us that without any treatment Pete would probably not live to see his younger daughter’s birthday in September. So waiting for scan results in February is a gift we didn’t expect to receive.
Since then there have been 11 rounds of palliative chemotherapy, more drugs than I can count (about 30 tablets plus potions, patches and medicines every day) countless hospital visits, weekly community nurse visits, fortnightly chemotherapy, hospice visits and emergency medication visits in the middle of the night. But there have also been birthdays for our two daughters, a holiday, gigs, open studio days, fundraisers, Christmas, a Brew Ed, Valentines day, pub quizzes, work, a book written, visits from friends, articles, meals out, presentations, trips to the shop, cars bought and sold, short breaks to York and Scarborough, school, performances, building work, chatter, lots of love and laughter. None of which we expected to have back in July.
Last time Pete had a scan we had a telephone call the following day, at 8pm, just as we were about to sit down for a meal. The NHS is a marvellous thing. We had to get to the hospital immediately, as the scan had revealed a clot on Pete’s lungs which could move and cause a stroke or heart attack at any minute. We dashed to our local hospital – fortunately it’s a 10 minute drive away. The team were waiting for us when we got there, Pete was given an injection and I was given a very quick lesson in how to administer more injections and instructed to return the following day to collect the necessary paraphernalia to administer a daily injection. Another new thing I’ve learned (it took me back to my days of training to administer injections at school for children with medical conditions). We were home by 8.30 and the NHS being what it is, the following day when we collected the medication we were told that Pete’s oncologist had been in touch, and asked for tablets instead, because she knows how much Pete hates injections. A small, but not insignificant act which makes me so grateful to be in the care of such amazing human beings.
So, we wait, but I keep thinking no news means no life threatening blood clots, and we hold onto that as a positive.
Pete is having a break from chemotherapy. We were told back in July that his cancer is aggressive and advanced, so the chemotherapy is also aggressive. It’s been working though, he is still with us, and after we got over the initial shock of the blood clot on the last scan, we were also pleased to hear that the chemotherapy had caused the tumours in his pancreas, stomach and peritoneum to shrink, and that there were no new tumours. The best news we could have hoped for. More time.
Putting a significant amount of poison into your body once a fortnight takes its toll though. So, the neuropathy which makes picking up warm or cold items uncomfortable in the first few days after treatment and causes Pete’s throat to feel like it’s closing up if he drinks cool or hot drinks (if it’s not 70 degrees he can’t drink it) was starting to last for longer, and the feeling in his fingers and toes was starting to go. The feeling that he’d burnt his tongue and the effect on his tastebuds meaning that most food tasted funny or unpleasant or just didn’t taste of much at all was becoming more of a permanent feature. The good days which we’d been experiencing fairly regularly in week 2 of the cycle were becoming less frequent and the fatigue and low feelings were lasting a lot longer than a few days. The oncologist warned that without a break, nerve damage would become permanent and the neuropathy would become painful. She also explained that if the chemotherapy was working, taking a break wouldn’t hurt, and if it wasn’t making a difference carrying on wouldn’t help. It’s amazing how quickly you learn to process life changing, often quite brutal information as if you’re talking about what to have for your tea.
Except you don’t, deep down you reflect on the reality of what that means, and it keeps you awake in the middle of the night thinking about what the future is going to be like and wondering how you’re ever going to function without the person who has been so much your other half for the last 33 years that you’re not sure who you’ll be without him. But then the alarm goes off and you crack on, because there’s the school run and the shopping to be done, prescriptions to be ordered, appointments to go to, life to be lived, bags to be packed and hopes to be hoped.
Tonight is the first night of our younger daughter, Hannah’s school performance. Back in October when I signed the permission slip for her to take part, I thought I’d be going with my elder daughter. But we’ve booked 3 tickets. Thanks to the kindness of friends we’ve managed to book a holiday in one of our favourite places in the world, St Ives in Cornwall, a place we’ve visited almost every year for the last 25, We hoped to go back, but last July when we visited Cornwall, Pete was so ill that we had to come home early and if I’d been told back then that there was a very real possibility (oncologist permitting) that we’d have one last holiday in St Ives in 7 months time, I would not have believed it. Thanks to the amazing care of the hospice team, the oncology team and the community nursing team, we are in a much better place now than we were then. We know how to manage Pete’s pain and we know what to do when the usual pain management isn’t working. So if the oncologist says we can go on Friday, then after the last performance of “Back to the 80s” (my youth has become a historical drama) we will collect Hannah from school and head off in the dark to the South West, just like we used to when the children were little, travelling through the night to arrive early, miss the traffic and make the most of the first day of the holiday, when the possibilities seem endless.
If the oncologist says no, and if the news isn’t good on Friday, what then? We’ll be gutted, of course. But we will cross that bridge when we come to it. We have friends and family who will rally round to help and support and we’ll keep on keeping on until we can’t keep on any more. We know how this ends eventually, but let’s not think about that right now, let's just be grateful for every day we've had so far, and let’s hope that it’s not over yet.
Keep everything crossed for us.