I’ve been referred to Palliative Care.
Ouch, ouch, ouch. I know my chemotherapy is palliative, we’ve been through that, but actually referred to Palliative Care? It felt like another step up the staircase.
It’s a bit weird, because I’m a huge believer in palliative care. I don’t want to die bald, I don’t want to still be chasing a few more weeks, a few more days. I want to die well. And I’ve had two meetings with the PC consultant, and she’s lovely, and it’s really holistic (and there’s part of me thinking “maybe that’s what I should have done” careerwise, only I didn’t even know it was a thing when I was starting out).
Anyhow, as part of the whole thing, the PC consultant has suggested that I keep a notebook for each child and jot down memories and thoughts for them. And a notebook about what I want in terms of terminal care, maybe funeral, etc. Ooof.
So, I got some notebooks. I love a good notebook – I got some personalised ones from Etsy. https://www.etsy.com/uk/shop/PatRayDesigns,if you’re interested. I got to choose the colour and the pattern and the words. I know I’m terminal, but I can still enjoy a good notebook.
I’ve made a start. It’s hard in some ways. I’ve just put down the story I always said I’d tell at my son’s wedding. It’s a good story. Well, who knows? I might be there. I might not. At least somebody will get to share it now.
These notebooks are putting me in a place where past and future clatter together. I have 3 sisters-in-law who lost their mums very young. They really missed the day to day memory stuff when they had their own children – “Oh, I remember that you used to hate having your nappy changed…your sister wouldn’t eat banana…you always cried before you slept”. Stuff that you take for granted. I want to put some of those memories in, just in case they come in handy.
I’m thinking a lot about how this whole shitty thing has impacted on them. They’ve had this shadow sitting over the family since they were 6 and 4. They can’t remember a time without it. It has made me less predictable than I would otherwise have been. There were times when I disappeared. This is the thing that they will take to therapy with them (if they end up needing therapy). On the other hand, maybe they are more caring, more resilient, more understanding of the fact that everybody carries a bag of pain around with them? Who knows?
Anyway, I don’t know if you’ve done anything like this? I think it will be helpful – for all of us.
fantasticmetastaticme 
This sounds like a beautiful thing you are doing for your kids, Sarah. Hope you’re feeling ok ❤️
This is a good thing you are doing.
In fact, there is so much I myself would like to ask my own mother had I the chance. We should all, perhaps, be doing the same thing.
Sarah, I am doing the same thing because, at my age, I am the last one remembering the family stories and otherwise, once I’m gone, they’ll vanish. I love the idea of your notebooks, which will mean everything to your kids in years to come. My heart winces at the “palliative care” designation too. I admire your strength and courage. You are living as well as a human can possibly aspire to, in a hard situation. You shine. And your writing is absolutely beautiful, always.
That’s lovely to know. My dad is writing a memoir of his childhood – I’m worried he’s not going to share it with us before he dies (he’s 85, so I’m not being unreasonable pessimistic). I’ve been thinking of you, actually – I just read a book on NetGalley called The Wilderness Cure by Mo Wilde. It doesn’t come out until the end of July. It’s a Scottish woman who decides to only live on wild, foraged food for a year. There was something about it that made me think of you repeatedly. Anyhow, keep an eye out for it – I guess it might be a UK only publishing? Yes, the palliative thing sucks – it’s a punch in the stomach every time. But once you get past that, it’s good. I’m so glad you follow this blog.
Your act of writing for them is a very loving, beautiful gift.