Being articulate, pushy, and in LS8 can open a lot of doors, and apparently get you to the top of the waiting list for an electric bed - it will be delivered tomorrow afternoon. But what the social services giveth, brain cancer squats on.
Mum took a bit of a dive today, around 5:15pm. She had been snoozing, and she woke up upset and confused with a headache and feeling nauseous. I gave her acetaminophen (yeah, that’s how empowered I felt) and held her hand. I thought about what I should do for a while, and decided that since it’s clear that there is nothing to be done, I shouldn’t call anyone. Calling someone would just bring them round and create a crisis, and might conceivably end up in the emergency room. Fuck the emergency room. Fuck the ward. I want to know what’s going on, but there’s no good reason to investigate. It would involve scans and hours of waiting and well-meaning but brutally efficient healthcare professionals. And it would yield nothing of any value to us. Nothing.
So I held her hand. After a while I felt guilty about taking a decision like that all on my own, so I called Liz. She was on her way home, so we talked after she got home. She agreed. Tim got home and he agreed too. It didn’t help much that we were all of the same mind, but it helped a little.
She’s definitely worse, more confused, she keeps her eyes closed, lacks strength and control, talks like a sleep talker, drags her foot instead of lifting it. But she doesn’t seem any more unhappy, or to be hurting. This is the one thing which is missing, some way to cope with sudden discomfort. The best drugs we have here are lorazepam for anxiety. We should be getting some injectable meds for emergencies soon, which will render the question of calling someone out or getting her to a hospital entirely moot.
I know I go on about this, but it is a serious head fuck to switch from a medical/curative mindset to a palliative/comfort mindset. In the new context, understanding what’s causing the symptoms has no value. Nothing useful arises from it. All the available responses are the same, so why even ask the question? The question itself is upsetting, so it’s better to avoid the question. This is so hard to do.
Tomorrow is going to be a harrowing day. We’re seeing the oncologist at 10am (first appointment - 3 weeks after diagnosis of brain mets, a disease with a median survival rate of 2.3 months, and that is a process accelerated by articulate pushiness and living in LS8 - all noted without comment for now). After talking turkey, we go home to a home visit from the GP. In some ways, mum being more distant and confused will make these meetings easier, because she will not be engaged in this discussion of the manner of her death. But the flip side is that her lack of fitness will mitigate against any treatments. I know it’s not good to play “what if”, but seriously: What if radiotherapy was worth 3 extra months? And what if today’s sudden downturn is the difference between viability for radiotherapy and not? Fuck that for a game of soldiers.
I don’t even know if going home this week is an option any more. I’ll decide tomorrow night.