Dear everybody,
I keep thinking that I'll have the energy to write "something proper" today but it doesn't happen! I've had a pretty lousy month, with a streaming cold that made me very ill indeed... And having eventually recovered from that I'm having to face up to the fact that the "Superior Vena Cava Syndrome" - obstruction of blood supply to head - has now got a lot worse, especially over the past few days. My face is very red and swollen as a result. But I've managed to keep the related pain under control by upping my morphine dose, so that's something. And I'm still surprisingly calm, and not unhappy most of the time, so that's positive too. Plus I've managed to do some good walks since my cold got better - although by "good" I now mean a couple of miles rather than 5 miles.
That's all I'm going to say for now, except to thank everybody who's treated my progress reports as if they were personal one-to-one emails rather than circulars. It makes a lot of difference to have friends keeping in touch. I wish it wasn't such a struggle for me to write (or talk...)
Lots of love, Jos
Rapid deterioration set in on Friday 20th - pain in right neck and shoulder close to unbearable and feeling out of control. I up my morphine dose again, so my base morphine dose is now 180 mg morning and evening - nearly double what I was taking around a week ago. Sunday evening I mail my closest friends and oldest sister to say: 'I've declined rather dramatically and am pretty well bedridden + hoping it won't be too long.' I change the news summary on my website to say much the same thing, but do manage to find one positive thing to say - 'at least I can get reasonably comfortable lying down...'
Very floppy and dozy as a result of my increased morphine dose, and still getting pain after walking any distance. But today I did manage to walk a couple of hundred yards down the lane to the gate which I lean on to contemplate Highlow, which was good as the weather has been fantastic today. Who can tell how long-drawn-out the dying process will be. I think the time has come for me (plus friends) to anticipate a staged decline rather than rapid finale - something which I have avoided contemplating up until now.
Fluctuating a lot from one day to the next - yesterday pretty good, today pretty crap... I expect this is how it will continue within the overall framework of decline. Surprisingly not in a state of depression.
I feel as if I'm having to field some distressingly "either-or"-ish responses from friends - i.e. I can't say I'm seriously declining without it being interpreted as I'm going to be dead within a few days and therefore turned into a drama. Which is winding me up. But it's an unknown situation for all of us I guess and therefore not surprising.
Have rallied round fairly remarkably to my mind over the past few days while Roy has been here - but today I've lost it again. No pain to speak of, but weary in the extreme. Greatly uplifted by some photos sent to me by a friend who was diagnosed with breast cancer earlier this year but managed a wonderful trip to India/Tibet borderland in the summer. In particular there's one which she describes as follows: "Attached is a photo of the Buddhist chortens on the high Kunzum-La pass between Lahoul and Spiti. It was really windy and the prayer flags tugged and flapped at their lines and there was a real energy about them. The view was amazing and the chortens were dazzling against the backdrop of mountains." Here it is.
I start to feel very strange indeed in the early hours of Monday morning (3 a.m.), and find myself at the computer tying up various loose administrative ends relating to my death. While I'm about it, I also do some Googling on morphine dosage levels - it strikes me that, in the light of the pain from "Superior Vena Cava Syndrome" having diminished considerably since recovering from my dreadful cold and all the related coughing, what's going on could be due to my current morphine dose now being excessively high. I decide to miss out on my morning dose completely, and in the evening to reduce from 180mg right down to 120 mg again. I do this with absolutely no apparent side effects or withdrawal symptoms.
I find myself constantly cancelling proposed visits from all but my very closest friends (Debby, Maureen, Sarah, and of course Roy). At night I don't sleep for more than an hour and a half without waking up and needing to get up in order to avoid going into a drenching sweat. This isn't so bad now that I've accepted it and intersperse sleeping with periods of reading downstairs in the kitchen with a cup of tea, but it does mean that I need pretty well the whole of the morning for resting as well as the night. Late afternoon or evening visits completely impossible, and afternoons I'm just much more comfortable if I restrict myself to the company of my children and this very small number of friends.
