When I first heard the phrase palliative care I cringed. It was offered to me by a kindly doctor at hospital, who meant no harm, but I thought it was a death sentence, and in a way I’m still convinced of it. I went next day to my oncologist, and said ‘they’re offering me palliative care, what is it? I don’t want it.’ And she concurred with the idea of it being some idea of treating you until death. I wanted no part of it. “I am not afraid of death, I just don’t want to be there when it happens”, as Woody Allen said.
I certainly don’t want to be around – so I avoid anything that has the word palliative associated with it. Which all has to do with fear of dying which I don’t deny is real. As I get closer to the time, I understand it more; but I try to deny it actually exists. How can we be afraid of what we don’t know? I do get afraid in the middle of the night, but I don’t really know what I’m afraid of. Being a burden to those around me? Not getting to the hospital on time? I don’t really know. I’m sure if I was better read, I could find someone who’s described all this, but you can’t ask so much of even the best authors. How can someone write an accurate description of their death, and die at the same time? You tell me. Maybe I’m missing something.
So here we are, offers of palliative care rejected, until BOOM reality strikes! And I had a bit of pain, and palliative care suddenly jumped into my vocabulary as a positive possibility. I was recommended to the palliative pain expert, and my life changed – at least, after a few horrible weeks (which included hospitalization – I was hallucinatory, frightened beyond belief, I could hold something in my hand that wasn’t here, I could see things that didn’t exist; why do people do these things for fun? Imagine. In fact, I can still do or see some of these things, but you know? You do get used to it. Sometimes it’s even funny.)
But now on palliative care, my drugs are all under special license (quarantine) – I have to have a special nurse to count the pills. I could sell them for lots of money, but I resist the temptation to go on the streets to do so. And I carry around a card to say if I ever run out of steroids to ring an emergency number to get some more – but I’ve lost the card.
So moving down the long line which probably ends up in hell, I now find that palliative care might move onto hospice care (dum di dum dum – ominous drum roll) scarier than ever. So next week I’m gathering up my courage to meet with what people tell me are the best carers in the world, the Macmillan nurses, from the St John’s Hospice. Of course, they’re coming to me, all their services will come to me, I haven’t been out for a week and more (bar a few good restaurants).
They promise a hospice-at-home service, which will give me intravenous morphine, a life of carefree hallucinogenics until I get to the next world. Could be alright. It’s funny how as your pain grows your tolerance for intervention grows with it. I simply don’t care anymore, but I’m trying to keep my mind intact. [I think she’s doing ok. Ed.] When you get to the stage where you’re taking more and more pills, and it takes a special nurse to count the medication, and another to apply the bandages, you start to think there must be another way out of here: perhaps a one-stop shopping service – like a hospice – might be useful.
While I’m not giving up the idea of staying at home till the very last breath, I’m not holding my breath either.