For now. The big overarching ‘for now’.
I swing between feeling celebratory about it and feeling rather a sense of foreboding. It’s been such a ruthless chemo and it was only going to be for a short stint, and it does feel amazing to be at the end of it. But while I’ve been coming in having chemo, at least it’s felt like I’m doing something about the great big tumour in my skull.
Because as we know, the tumour never goes. It’s still in my skull, still alive and active, though hopefully the outside of it has ‘ossified’ (turned into bone), which will slow its progress for a while. But it’s back into no-man’s land now, just waiting until it gets even bigger than it’s ever been, until the symptoms, the pain gets worse, until I perhaps lose the hearing in my one remaining good ear or it presses on my brain… Who knows. And we have no idea how long that will take. It might only be a couple of months, it may be a few.
Some hospitals have taken on the trend brought over from America of installing a bell for people to ring at the end of chemo. I have always been incredibly grateful that UCLH hasn’t got one. I wouldn’t have felt right ringing it the first time, and I certainly wouldn’t feel right ringing it now. Knowing that I’ll just be waiting until things get so bad before I’m onto seeing if another treatment might eke out a bit longer for me. Knowing my friends and I will be on treatment forever, even if one stage finishes…
Going into a period of waiting for things to get worse than they already are is scary.
But on the flip side, I like to celebrate. I like to celebrate life. I want to drink champagne at lunchtime on a Monday. Or take myself out for lunch and a pint (or three) to celebrate it being Friday. I like to make every day special where possible. So I think I’ll allow myself a bit of relief and maybe a small amount of celebration at getting to this point. After I’ve recovered from this chemo, I’ll be the best I’m going to feel before things start to get bad again, so may as well make the most of that. And indeed I will.
My parents turn up in two weeks, and we’ve got lots of nice things planned to do while they’re here. I’m really looking forward to their visit. It’ll be interesting balancing seeing people full-time and resting. At the moment I’m only really able to do it for a few hours then I need to go and rest my face, as smiling and talking starts to hurt after a while and usually means I need to change the dressing on the hole in my face a lot more regularly. But having people stay with you for a prolonged period of time is a bit different to four hours of a catch up with a friend you haven’t seen for a few weeks, and we will do a lot more existing in each other’s company (which is beautiful) than excited chattering and laughing. Though I’m sure there will be lots of that too. And music.
I keep reminding myself that although there is only worse to come, this treatment is hopefully buying a bit more time, and I’m going to do my best to enjoy it. As Lao Tzu so wisely said “If you are depressed you are living in the past. If you are anxious you are living in the future. If you are at peace you are living in the present.” A simplification, perhaps, but it rings true to me as a reminder that if I’m stressing about my future, I need to bring it right back to this moment. Right now I am alive and things are OK. I’ll have to face the scary things at some point, but no point in experiencing them too much now too, that seems unnecessary.
So although I do sometimes legitimately need to think about my future for practicality reasons, and keep reality in my mind, right now things are pretty OK. I get some time off from chemo, which is lovely, and I’m back to three monthly MRIs to keep an eye on when the tumour outgrows its current size (which I don’t feel is often enough but they obviously know best).
So let the party (soon) commence, with lots of rest along the way. I didn’t end up in hospital after last cycle so I’m hoping to avoid it again. It was pretty touch and go – temperature is 37.9, take the blanket off, now it’s 37.4, put the blanket back on, etc etc. But it never hit the 38 required for hospital admission. So fingers crossed I can avoid it again. Then I’m hoping to have some time not having to think about cancer, aside from the (sometimes multiple) daily dressings of the huge hole in my face, the MRI in a month, the two-week trips I still have to make to the cancer centre to get my PICC line re-dressed (I’ll get it taken out after the MRI and possible hospital admission), the oncologist appointment in 6 weeks, etc.
But for now, here’s my latest eyepatch I made, I think it’s my favourite yet: