Post 63: Three days to go and all’s well
When I say three days, I mean three days till it’s a week after the last A&E visit for another AFib — which will trigger a review of the date at which I can resume the chemo.
That said, I’m hopeful that in three days I could start the chemo if I’ve been pencilled in for treatment and I can get the all-clear from Dr A.
But today’s another day, and I hope for some good news from anyone and everyone — to boost flagging spirits and to help me believe there is a plan for the future.
Being in limbo is where I’ve been for so long now, I’ve lost all sense of continuing care and just feel like I’m being a thorn in the NHS’s side — having an unpredictable problem causing endless delays.
But the AFib has been switched off these last few days. That’s wonderful.
The ectopic beats of my weary heart are now counted in seconds, not hours. I can still feel the missed beats and the palpitations, but they come and go, and the observations the watch makes are rapid rises and falls that are barely noticeable.
Each day I feel more confident that the new Sotalol tablets are the key to unlocking a future plan of action regarding cancer treatment.
I’ve had a second night of restless sleep and woke many times in a hot night sweat.
Mentally I feel dirty, and physically uncomfortable — but because it happens so often, I have to live with it. There’s not much I can do. I can have a lighter sheet replacing the duvet, but I then wake up cold after the night sweat and shiver.
It’s one of those side effects that rarely get mentioned because it’s caused by personal choice (bed covers) not by medication or bad practices.
This is all due to the three-monthly HT (hormone therapy) injection — which seems like a waste of money and time to me, now that my PSA is over 600.
I must ask Dr A if there’s any point in HT when it seems to be ineffective.
In fact, it is a question on that sheet I sent her last week. I should ask again and force an explanation as to whether my body is now officially immune to the HT.
This afternoon, I’m hoping that the cardio consultant, Dr S, will call me for the PE (Pulmonary Embolism) follow-up — even though I know nothing will be done until after chemo finishes when I’m invited to a valve clinic for more observations and possible treatment.
Whether he rings or not isn’t going to help me much, but it will help me understand his expert thoughts about my leaky mitral valve.
It’s just another side issue distracting me from the overriding primary concern: prostate cancer.
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I stayed in bed most of yesterday — because I could.
My bed is an office most days, with emails and app reports to deal with, and appointments to arrange and rearrange.
It’s not just a place for rest, but I do try my best.
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My mind is full of choices and confusion over my untreated cancer, and it’s very hard to kick it into touch.
Like everyone else on a cancer pathway, there’s little you can do but wait patiently while the specialised medical experts ponder their reactions to your condition.
It’s a lonely time. Time ebbs slowly.
Frustration and apathy increase one minute, followed by intense anger and activity — giving me the energy and attitude to self-advocate in some way.
Positive and negative thoughts run together in a race for my attention, and only my mindset can let one win me over.
Positive thoughts and emotions one minute, and negative the next — cycling in depressing regularity.
Yes, I need counselling. My brain needs a rest from all this upheaval.
I’m the LM (leading male) in a scene from a disaster movie, where everything looks hopeless; the spotlight’s on me.
The decisions I make set the next scene, and the story unfolds with my every step.
I’m not happy as LM. I’d rather be an extra — looking at the limelight on another character in the convoluted plot.
Oh, to be a spectator, or in the audience right now.
Away from the centre stage and hiding in the wings.
To be left alone to my own thoughts and deeds — not forced to deal with horrible adult stuff and nonsense.
I want this Act to end happily, but the writing on the wall is terrifying.
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I got up in time to pick up our DIL (Daughter-in-law) from the local HQ, where she was working for two days for some essential professional duties — all the way down from Cumbria (on a train), on her own, as she’s now quite used to. She a big girl now.
Heading home, there was a lot of catching up with decoration plans and ongoing preparations for her dad’s stopover in their new home in the north.
He’s bringing the beagles, so there are three guests to accommodate and care for.
We had dinner at ours in a comfortable setting where more recent histories were exchanged.
The time went fast, and soon she was gone — back to her seafront hotel and her temporary residence. The photo of the room looks great.
It’s only when we’ve dropped her off that My Darling and I feel the enormous distance we now live apart.
Modern technology aside, it’s a changed part of our lives we live with — but miss the closer contact we were used to.
It’s fantastic for both kids to grow and move on with their lives; wherever that may be.
Being parents, we know adjustments have to be made and accommodated.
Have a safe trip home, K xx
Three days to go.
It’s all going so well.
