Post 168: Waiting in vain – for an email again.
Today was to be the day of the last chemo, but its abandonment is a good thing. Still, there was no celebration.
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Three weeks have passed after chemo, blood infusions, pain and smiles, but there’s no bell to ring or feeling of relief.
The whole bus issue for me has been one of continual frustration and sometimes panic, but I got there. My Darling has suffered as much as me, and my youngest has seen me in hospital and at home in the worst states I’ve ever been. Call it growing up, perhaps, but I call it unnecessarily harsh.
I still feel too young for this big cancer thing. I’m not ready for the choices we have to make to get to the other side of the incoming storm. But it seems that where the storms were far apart at the beginning, 3 years ago, they’re now lining up — and will cause physical damage eventually.
Today I hoped for a judgment on my bloods and a PSA reading, but in the end it was a no show.
I had the distraction of great ideas from the forum for a day out in the sunshine (which I dearly wanted), but instead we had my so-called “surrogate” mum P for a visit, and D the plumber later for a boiler check and a review of the new bathroom plans my Darling’s been pouring her heart into.
P is such a boiling pot of enthusiasm and positivity that if ever I wanted a bag of cheer she’d be there. I was a kid in ragged childhood when we met and became firm friends, and she and my “surrogate” dad V (now passed) were a breath of fresh air and a guiding light of vision and confidence all through my life. I think they gave me more than my own mum and dad in most ways — which sounds harsh, but it’s true.
However, today was the first time P just sat and held my hand and asked me how I was. The excited curiosity and energy weren’t there beside me. It was only compassion and care. It was telling, and it found me feeling awkward and tiny.
Later, after a huge lunch, we split and I was left to the TV for a while alone. I settled into my tiredness and wondered about the bloods and further treatment plans which might be hatched with future tests and scans. But I can’t force these things and have to be patient.
I wanted a rest from the bus. The bus has departed without me, and I’m glad. But I don’t know how to rest. My mind is still active with worries and thoughts about what’s next and when. Why do I do this to myself? All I wanted was a break from it all, and now I have a break I want to be back on a plan.
Am I mad?
The surrogate left and the plumber stayed. Big hugs and knowing glances ended the visit I really enjoyed, but this is a new chapter in the type of reactions I’m getting from friends and family with all that’s gone on.
I had a follow-up call from the hospice and the nurse was pleased to find me much better off, with much less pain. Job done.
The steroids will need to be reviewed again, but a course of reduction was put in place.
Still no email about bloods.
I also had a few texts from the GP surgery on the Accurx.NHS texting system, but that was a damp squib. I was asked what (if anything) I needed help with, to which I replied: the finger twitching and tiredness. The message back was: I’m your GP and not qualified, so ask your oncology team — but I can help with an OT assessment at home for a bed and wall rails that could help you.
I just answered back that that was already done, and the texting ended.
You win some, you lose some. Hey-ho.
D the plumber headed off and left my Darling and I alone, sitting together in the lounge with some satsumas and the tail end of a K-drama to die for. Peace at last.
I could only manage half an evening’s entertainment, but that was nice.
Worries roll on. Why do I worry so much?
I’m a “simple man” (Lynyrd Skynyrd).
