So good news, my carbon dioxide levels have decreased, which means the ventilation is doing its job. What a relief. And the respiratory team are so pleased with how well I’m getting on with it (and how brilliantly Sue is doing putting my mask on with minimum leakage) that they’ve increased the pressure twice more as well. I sleep really well with it on, it’s quite soothing,
I must confess, I reached a point last weekend when I no longer cared. I’d had enough. I know I’ve taken a downturn and am resigned to it so my focus now is quality of life rather than quantity. I have a DNR in place and I’ve spoken to the palliative care consultant and my GP who fully support my wishes and will help me be as comfortable as possible.
So I’m now on lorazepam twice a day to keep me calm, which seems to be working. It makes me sleepy but I tire so easily now anyway.
We had a bit of a shock this week when the powers that be in the community care team decided they could no longer provide the care I now need and pulled their carers immediately after the first morning call, their intention being to move me over to specialist Marie Curie-trained end of life carers! Just like that, no warning, no consultation. Sue was having none of it and nor was one of the carers and between them they got it sorted. So instead I’ll be assessed each week and in time I’ll be slowly transitioned across but for now they’ve agreed that my current carers are still able to give me the help I need. In fact, the carers themselves had decided if they were pulled, they’ll sort out a rota between them, around their personal time, and keep coming. They continue to blow me away with their kindness.
It’s an odd thing, facing up to one’s death. To be honest, I’ve been doing it since diagnosis and am fairly at peace with it. I’ve been reassured that when the time comes I’ll be made comfortable and calm and that’s my main wish. That and to be at home. The GP has sorted out the necessary medication to have at home and district nurses will be on hand. More importantly, so will Sue and the dogs.
We talk so glibly about death but only from a safe distance. When it’s so close we become less brave. Having no faith, I have no concept of what happens but I hope that my spirit will live on, in peace, so I can always be at Sue’s side.
But none of that is immediately imminent. I tire far more easily and am weaker but I’m not ill as such – no chest infections which often trigger the very final stages.
Of course none of this has happened without Sue’s undying love and support. She astounds me every single day. She uncomplainingly and lovingly attends to my numerous needs (wipe my nose, scratch my head, roll my sleeves up, roll them down, shift my ankle, bend my leg, cover me with a throw, take it off etc etc), while dealing with everything else that needs to be done, all with patience and good humour. She never complains just cheerfully gets on with everything with unfailing kindness and humour. I am in total awe of her.
Thanks for all the messages I’m getting, it’s so lovely knowing people care. Please don’t be offended if I don’t always reply but I promise I’m very grateful.
I took further emergency measures this week too and ordered a case of Ned Cabernet Sauvignon blanc for Sue – can’t have her running out! 🍾😀