Post 62: Tired with 4 days to go.
Yesterday was a day of counselling and self-advocacy, but it really needed to be the other way around; to help digest the disappointment.
This morning I’ve woken to the birds chirping and lightness behind those thick blue curtains means it’s later than my usual first wake up. It’s six a.m. — and that’s the longest I’ve slept for a very long while. I need to drink more, obviously; I haven’t been for a wee at three. Drink more, Mr U.
Although that was an astonishingly long sleep, I feel like I’ve been up all night. It was a quarter to nine when we went to bed. My Darling was tired — it had been a long day and she couldn’t shake off a thumping headache — so an early night was called for. I can’t remember anything except the usual silliness and giggling as we got cosy on our lovely cool pillows.
I think the bedroom door was creaking to and fro and slammed with the breeze passing over the bed from the open windows, so My giggling Darling decided to jam the door shut. Peace broke out, and we slept.
Have you ever had the intense, dream-like recollections I had last night? It seems to me, as I write, that it was a shock-response from being in a hospital ward recently.
I was in my bed one minute, then in a ward bed the next. Cables and tubes held me in a loose constriction — without horror or pain — but as much as I wanted to wriggle out, I couldn’t.
It wasn’t so much a nightmare, but like a rerun of the first night in CCU a few days ago.
At no time was I panicked or bothered by noise or nurses — it was like I was alone, longing to move or get away, but safe.
I only mention this because I wanted to be strong enough to take My Darling out today on the bus or drive her somewhere special for a bit of us time. To ease her visions of me at home, watching for changes, pains, anything that she might need to act on to rescue me from my placid self and bring to light a side effect that might need medical attention.
Life is tiring enough when you’re ageing — but ageing with a team of terrible tablets can be too much.
My energy levels have plummeted since the new Sotalol beta-blockers, but they are doing a fairly good job in keeping the dreaded AFib away. That’s all that matters with four days to go.
I’m eating well and tucking into the treat basket, which is still full of treats — yet I don’t get any boost in strength with those or all my normal foods, just a little fatter around the middle. Which I don’t mind.
The extra plumpness gives me more to aim at for the morning anticoagulant injection — ha-ha.
Moving on to the end of yesterday’s calm and misery: I had a call returned from the GP surgery questioning the two emails I had sent earlier in the day.
The first was about the blood(y) test forms I now can’t get from the day unit. It seems that I can get a repeat of last week’s bloods for Thursday’s “vampire.” Great. Sorted.
The other was advice. I was put on Atorvastatin, a cholesterol drug, and I questioned why?
The practice nurse gave me the good news that there’s no reason right now that I should be on them — and the GP’s happy for them to be stopped. Thank goodness.
A nice and surprising end to the working day. Peace shall break out, as no one medically trained will bother me from now on. They’ve all gone home to their dinners.
So.
Onto the uncomfortable and frustrating part of the day — basically the afternoon call with my new bestie, Fri Oncology.
She is my specialist nurse N — the main conduit to the workings of the dreaded, aloof Onco consultant.
I sent a text to my siblings and sons etc., which I shall embellish with a bit of meat on the bones for clarity:
⸻
Hi all,
Omg what a bloody horrible day of frustration and self-advocation. My head is spinning.
Update:
There is no forward motion on the multidisciplinary meeting for oncology, cardiology and family to form a plan for my treatment and who will take charge.
There is no chemo appointment booked this week.
The transition from one oncology consultant to another is unofficial but, in a practical sense, a done deal. Dr A will be my new chief.
This Thursday will be a week after My last A&E visit and will trigger (if there’s no more A&E visits) my new consultant oncologist’s review for the restart of my chemo. (Dr A)
To save another week being wasted, I have volunteered to go to see Dr A in another nearish hospital clinic on Thursday F2F.
I have suggested that a provisionally booked Carboplatin infusion be pencilled in for this Friday at my local Onco Day Unit — to save another wasted week for the restart of chemo.
I have a consultant cardiologist (Dr S) call appointment on Wednesday afternoon as a follow-up to the PE and echocardiogram. (Not the AFib or the drugs, I fear.)
The faraway hospital will call me Thursday for a follow-up on bloods from two weeks ago and maybe a drug and scan review — perhaps. We shall have to wait and see.
In other news:
Last Thursday’s oncology blood test has seen the 505 PSA jump up to 636.
And after all that arranging today, I’m supposed to be resting and keeping calm.
Some bloody hope.
Luckily, there’s nothing planned for tomorrow (Tuesday) — the only day this week when I expect to be left alone and free from medical advocacy stress.
And after that…
I need some chocolate and a couple of Valium.
Love you all 
️️ ️️
⸻
Advocating at home is a time-consuming, frustrating, challenging, somewhat useless — but necessary — pastime, leaving your head in a spin.
And the only people you can vent anger on are the only two life forms available in the house — the only two life forms that care about you deeply and wholly.
Mind you, Mr Vicious only loves me for my feeding abilities and a warm lap.
However, My Darling has to pick up the pieces of my shattered prospective plans and deal with Mr U while he calms down — while reassembling and mentally reassessing the medical notes in his messed-up mind.
And with that lovely link, I move on to the best part of the day for me — and a challenge and new experience for My Darling.
Counselling started for me with a wonderfully welcoming counsellor, which the both of us sat in on.
Although My Darling is holding out on the process, I wanted her in on this first session — to allay her worries about what counselling is, and that it might even help her.
All I can say is that I blathered on for 95% of the allotted time in a focused outpouring of advocacy diarrhoea.
Enough said.
I can’t wait for next week’s session — both for my mental health and for the coffee and cakes in the café on the way out of the hospice.
It’s got to be done.
Everything’s going to plan.
But I wish I knew the plan.
