The best time of your life
I started Erbulin today. I saw Naomi the brain doctor on Monday, where she was pretty happy with everything – the report from Mr Kitchen was that everything had gone according to plan, there were no surprises when he popped my head open. I’ll have a brain scan in 8 weeks, then every 3 months. Increase the anti-seizure meds gradually, and stay on them indefinitely probably. No driving licence for at least a year. All very mad and almost feels like it never happened now. Wound is almost healed completely and The Weave goes back on tomorrow. Thank God.
So Eribulin it is. One session today, veins kaput but they got there on 4th go. Another hit next week then a short break.
Mentally? Still a touch wobbly and confused. But I think I figured out the reason why: that my utter panic is very much driven by my fear of death and if I can somehow look that right in the eye, then it stands to reason that I won’t be afraid any more. Doesn’t it? There is a part of me that might, just might, be starting to come to terms with what might happen to me in the future. I knew a woman who died of breast cancer last year and she was so afraid. Like almost dribbling with fear afraid. I never want to be like that.
There is so much of my life I have no control of any more. I’ve been in and out of hospital for a variety of reasons since we got back from Thailand really, I’d forgotten how much of your time it takes up. So much of it is just admin as well. Blood tests, lymphoedema clinic (had a swollen left hand for the best part of a year, Google it if you’re really interested). And today, I was reminded that that’s all the lead-up to the chemo itself, that’s the main event. I have no idea what the side-effects will be, I hear not too bad which is encouraging. But I am now coming to realise that any chemo I’m on now will only prolong the inevitable. And there is a balance to be struck. The last thing I want is to cling on to the very bitter and painful end, having to put myself and others through something so horrific and mentally scarring. There has to come a time when enough is enough and I have to be as ready and willing to make that decision as possible. When it’s time, which it’s obviously not.
I have been privileged and lucky to have lots of support from many fantastic organisations such as Breast Cancer Care and Macmillan. Now I’m increasingly turning to others, like Marie Curie and a website called Dying Matters. They help make people’s last stages of life as worthwhile and peaceful as possible. How can you argue with that? They want to change people’s perception and attitude towards death and dying. And I think I might want to, too. There was a famous Labour peer who died last year, having been told he had three months to live. If you saw The One Show tonight, you’ll know who I mean. Philip Gould. Again, another one for Google. He made a video in his final months, including an interview with him. He was even photographed on his own grave and he wrote a book in dying. His view was that, once he knew he was actually dying, it was the best time of his life as finally he got some control back. And he was ok with it. Amazing.
Anyway I’m definitely not there yet but I have made a will and I hope that in the coming months, my friends and family will help me plan my funeral. That may sound bleak but it’s not. It’s my way of wrestling control back. It means my precious loved ones don’t have to sit in their own grief, scratching their heads wondering what they’re supposed to do next. It’s all written down, bosh. If they never need to look at it for years, brilliant. That’s a result.
So, raise a glass to it never being for years, but to peace and humour when it does.