I have moments, particularly in the middle of the night, when I’m frightened of dying. Every week I get a little weaker, and I’m frightened, it would be churlish not to fear death. I’ve studied how people react to and suppress such phobias, but in the end it doesn’t help very much. I understand why people repress their fears, why they invent amazing stories of heaven and hell, and why they sacrifice chickens in order to project their fears. I certainly had enough analysis to have some understanding of all that.
Am I afraid of being alone at the moment of death? Of course I am, but then again not really; most of the things that have happened to me, the traumatic and life-changing experiences, have happened to me while I was more or less alone. Being a single woman forces you to face things alone a lot.
I often think I might stop breathing tonight, or tomorrow night. I’m very conscious that things are getting worse every week, but I’m also conscious that the days are good, and I don’t want to die yet. There are certain friends I haven’t seen enough of, even now. I said I would write 100 blogs, and I’ve nearly got there … wouldn’t it be amazing if I got it right on the mark?
Plans are being made still: I’m getting more equipment; my room becomes more and more like a hospital; more carers are here to help. I’m frustrated by how little I can do for myself, but I don’t wish I was dead; I still want that extra day, or that extra week, or that extra month.
The physical space I live in is getting smaller and smaller, and once the hospital bed arrives I’ll be finished. My activities are not what they used to be – I read less, I watch more junk television. But what does it matter, if I see my friends, once, twice, maybe 3 times a day? And I still enjoy my food – perhaps not like before, but I know what tastes good. And I have so much work to do still. Work on my finances (boring), work on my family (emotionally testing), and things, the right things, to give away to the right people (tricky).
Two weeks have passed since the above was written. I lie now in my hospital bed, waited on hand and foot, 24 hours. We’ve gone through the commode stage and beyond, and now I have a catheter, so no more falling over on the way to bathroom. I’m now bedridden, but I have to tell you it’s not as bad as I thought it might be; I’m not finished yet. Stage by stage as I deteriorate, I still find pleasure in small things – even if it’s just feeling fresh after a bed bath. I look forward to my meals – that hasn’t changed – and to visits from friends and family.
I wouldn’t have believed four months ago that my body would deteriorate so far, so fast, but the months have gone very quickly; and the down and down has been clear to chart, step by step. But I can still, just about, engage with people , thanks to drugs. I never thought I would ever take, much less need, so much morphine, which now I welcome, drug addict that I am.
I’m shocked; the door is closing rapidly. My oncologist just left and she is very saddened by my condition and the fact that on one occasion I’d been left in pain – it’s only been one night, no maybe two actually, but they were horrible times, mistakes were made or it wouldn’t have happened. I’m now on double the pain medication and hopefully will never have this problem again. I feel like I’m waiting for pain to come, but I hope that all my doctors are right and that I’ll never get that pain again, but that takes a lot of trust when once the system has gone wrong. There’s a lot of wishful thinking, and trust, that goes into this. I’m going to do the best I can to believe it.
What is the worst pain? The psychological pain or the physical? That’s a difficult shot to call. When you’re sitting and watching the deterioration of your own body, it is an excruciating psychic experience, even when the drugs eliminate the pain.
Let’s look at how things have changed: from having friends over for dinner, and going out together, and the theatre and all that, look at how much time I spend asleep now. Last year my oncologist and I went out and had a lovely dinner at a restaurant I couldn’t possibly remember the name of now – couldn’t think of going there, let alone walking there now. I struggle to write this blog, with my friend Antonia. I can’t think very well because of the morphine, but I don’t mind, I must get rid of the pain.
I know this will be a tough blog for people to read, but I think it’s important for you to know the truth. Maybe this is the war on cancer people talk about, more hopeless than the Afghanistan war, no exit strategy. It’s impossible to believe, you can’t believe in your own death. The idea of your own death is very difficult to get your head around, I can tell you. It’s tough to live through, and it’s tough to think about and write about, and at the end of the day it’s very scary; but it’s even tougher on your friends and family and those around you every day.