“Can you do me a favour then? Can you let him have his weekend without feeling like you’re reporting back to me?”
They were as good as their word. A quick text to let me know they’d arrived safe. Another confirming that they’re reminding him to take meds. But otherwise, silence. They handled all of it. And I got to be completely alone.
I thought I would be scared by the idea of someone having died here, but actually I am strangely comforted.
I’ve spent a few weeks now reading everything I can about Arthur and Edith. I am considering writing into a few Facebook groups just to see if anyone has context – is that too much? It feels too much, some days.
We had asked him, for his last day, who should take him. Usually his mum. But I wanted to be there. To mark it in some small way.
In the end, it was something of an anticlimax. A traffic-jam left me dropping him at the door before heading off to park. He filled out a few forms:
Q: Did you feel like we treated you as a whole person?
A: No, I felt like a severed leg
And then he was in and out within 10 minutes, just as usual.
But he didn’t want to ring the bell.
“My husband has a brain tumour,” I told her, “we don’t know how long we’ll have.”
She might not have her sight anymore, but I swear she looked into my soul for a moment.
“My daughter died of that,” she said, “it was just a few months after I’d lost my husband. You have to keep talking to them. All the time. Like they’re still there. And you have to find the happy things now. For as long as you can.”
‘Get your affairs in order’ is about so much more than just the paperwork (and there is so much paperwork). You have to go through all your assets, list them out on paper, and allocate them. You have to figure out how to distribute all the tangible parts of your life that will be left behind. The sum of almost four decades of life doesn’t go far in cold hard cash.
Somehow, despite how devastating the subject matter of the book is, the story itself manages to bring light into the situation. The reality of all this, four months into our journey, is that you can’t live in a state of dread and despair all of the time. You have to find a new normal.
The thing is that anticipatory grief makes us all crazy. The day after we got the histology back and had a name for this horrible thing, I broke my favourite coffee mug. And was utterly inconsolable.
If someone met me for the first time right now, they would have such a strange idea of who I am as a person.
Beeping. Rustling. Whispered conversations. A prayer in a language I don’t speak or recognise that wrapped around the whole ward like a blanket.
Quiet existence. A tiny pause in the onslaught of terror and grief. Horrifyingly beautiful – the “Ma” (間) or breath before the phrase.
This is a blog about navigating the world when the love of your life gets diagnosed with terminal brain cancer.
