So, how has your week been? Mine has been…intruded upon? Something like that.
I picked up the medication on Monday. I’ve been transferred to our local chemo unit, which is pretty new – maybe five years old? – and really nice. Full of light, designed really well. The staff are lovely. You are offered a cup of tea or coffee as soon as you arrive. I don’t just pick up medication, though, I have a little run through of symptoms and stuff. Just before I left, the nurse told me that she thinks it’s braver to take tablets every day than to come in for an infusion. It’s now Day 5, and I appreciate that. I look at this little pile of tablets in my hand (five of them, on top of my usual medication…) and I kind of baulk at them. And then I swallow them.
Side effects? I’m trying to find the right word for it. Lethargy? Fatigue? It’s really hard to describe. I feel tired, but not sleepy. I’m actually finding it quite hard to sleep. Also, the heat. I usually love the heat, but this is grinding me down. I don’t know how people who live in really hot countries do this. Thirty degrees is doing me in. I’ve had a bit of vague nausea, treating it with metoclopromide, which doesn’t help the tiredness. And I feel cut off from the world. The chest is still tight. I almost feel like it’s getting worse. The heat doesn’t help that, and I wonder if there’s a pollen/dust thing going on?
I had a long trip down to Plymouth on Wednesday to be fitted for a radiotherapy mask. I have two little brain metastases, one in the right frontal area, one in the left cerebellar area. They are almost a chance finding – I had a scan because I had some weird visual migraine prodrome stuff happening. There is no way that these mets are causing the visual disturbances, but they have been picked up while they are teeny tiny, which means treatment is more likely to be successful, and I’m less likely to have significant consequences. It’s a gift!!!
It is a gift. I’m lucky, sort of. A little gleam of luck in the big muddy heap of shit I sometimes feel I’m wading through. It’s a gift.
What’s helping? The kids are home, so there’s more noise in the house. It’s nice to hear about their adventures. I’ve been reading other people’s blogs and substacks. Those short reads, little dips into other people’s lives, they really suit me at the moment. I’ve read one book, that was far too good to waste on me at the moment. An intense book of quiet desperation. I’m going to go back to some full on, plot heavy, fantastical stuff. YA without too much UST. If anybody has any suggestions, that would be great. I’m going to mention Bimblings and Tramp up a mountain. Living in the present is so hard. How do you not spoil everything by worrying about the future – and the past? I try and I try and I try, and I fail and I fail.
I’m symptom tracking. That’s not helpful right now, but it’s a gift to future me, who will appreciate this. Symptom tracking gives me a feeling of control – I know Day 3 is like this. I know Day 5 is like this. It was so consistent with the last treatment, I’m hoping it will be consistent this time. And if not, at least I’ll know.
I took the plunge and ordered A matter of death and life by Irvin Yalom. I read Staring at the sun several years ago. https://fantasticmetastaticme.wordpress.com/2016/07/10/staring-at-the-sun-irvin-d-yalom-books-that-have-helped-1/ and wrote about it years ago, but even then I hadn’t read it for a long time. I was trained as a psychiatrist in the UK with this idea of the “irrational fear of death”. The comfort of Yalom is that he allows you to fear death. Fearing death is normal. That’s one of our major drives. The trick is not to let that stop you living.
I am grieving a little. A month ago I was full of energy. I had my first poetry collection out in the world and a book launch full of love. It was a great time. And now I’m lolling like a Victorian invalide, struggling to engage with the world.
fantasticmetastaticme 