Love, Poetry and Revolution - Monday 2nd September 2024

September arrives before I find the time to write more in August, but last week was busy and fun, hence no time to write.

E seems to be enduring a difficult phase, with many short but frequent mini-seizures. It's been going on for over a week now, and, in conjunction with the Sue Ryder nurse, it's been agreed that we increase the dose of the anti-seizure medication she takes.  The GP has agreed to it so it's just a matter of getting official word to the carers so they can enact the change, legally.

It must be a living nightmare for E, being locked in, confused and experiencing pain and discomfort that we can often only guess at. I'm powerless to do anything to ease her suffering, other than by informing nurses or the doctor so they can act if they agree it's justified.

Whilst I'm away the sense of relief and easing of tension that I feel is noticeable. It may seem cowardly to be away from E so often, but the stage E is at now is even more stressful than it was before she became a palliative care patient. It feels that way at least.  I don't think we fully understood what it would be like to keep E at home for this phase rather than admit her to a nursing home.  I think it is difficult for my sons too, though they don't say much to me about it.  I still think it was the right decision so that she could be in familiar surroundings with the people she loves and who love her. That's something we need to review as she endures things - maybe twenty-four-hour nursing care would be more comfortable? Who in hell knows?

Set against this, from my perspective, I have been enjoying life.  Big changes are underway in the garden (how do I get rid of the jungle?) with the goal being that I can take over and do the gardening myself.  Oddly, I am getting excited about the prospect.  I must be losing my marbles.

I'm also beginning to see myself building a potential friendship group in Liverpool, beginning with the Speke Aviation Heritage Group. Who knows what else I will get involved in?

Set against this - and maybe this is because I'm enjoying life again - I've been having more frequent thoughts about my own mortality.  A cheery subject at the best of times. Enough of that.  Positive thoughts only, please.

Q and I - and now my sons and I -  watched a really good BBC detective drama set in Australia, called 'High Country'. I thoroughly recommend it for the story which unfolds slowly and comes to a surprising end. Q and I have also started watching 'The Wire'.  No need to say how good that is.  (I've seen it before, but Q hasn't, though I'm happy to watch it again.)

(Reality intervenes) A district nurse has arrived to change E's catheter and I need to reorder catheters, as we have none left. I've done that, but I think that's ended my flow here. (Unintended pun)

Ophiucus /  'Ne Cherche Plus'  / Ophiucus

[[An obscure French band and album from 1971, with something that veers dangerously close to folk music. I think the title translates as 'Don't Look Anymore', but don't shoot me if I'm wrong! I think it's beautiful.]]