Post 241: Queer correspondence and a sleepy wife.
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It’s safe to say in my last two days I have been well and healthily happy.
Not only has my heart beaten soundly — except for a bout of atrial fibrillation that lasted too many hours to count last night — I’ve mentally felt able to lock away the weekend email replies and the usual Monday apprehension.
My stomach has been giving strict instructions from the doc to move once in a while, and it has tried. More luck than judgement at the moment, but getting there.
My new meds are settling the pain directly, over and above anything else I do to help. For example, I haven’t taken any oramorph for two days — yippee. That clearly means the injury from a week and a half ago has been put to bed.
More about the future hospice pain-check later.
The mind we’ve touched on already, but it’s clear things are better due to the daily hankie count. It’s lowering nicely. Not out of the woods yet, but it’s good to smile and cope.
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My strength in my legs and back has returned so much that things like getting out of bed are a breeze now. Sometimes I forget how disabled I was just a few days ago.
I’m not so much being pushed in a wheelchair — more like pushing one.
My fingers are dancing more, but it’s mind over matter with that one. I can’t see that ever improving while I’m getting older and taking more nerve-killers.
Anyway, when I got up I checked the towels I now ritually sleep on to collect any night sweats. They were dry. Another yippee.
They’re a new idea and working well. If you can’t stop ’em, get a good workaround.
As my Darling was working away cleaning down in A&E, it was my turn to clean recovery room one. I took the three “woolly blankets” off the bed, the sheet off the bendy mattress, and the cover off the foam topper. When I was fully abluted (made-up word) and smelling fresh as a Marc Jacobs advert, I descended the electric stair with a pile of laundry balanced on my lap — so much I could barely see over it.
The pile and I made it to the kitchen, where Daddy’s little helper was behind the glass door crying his eyes out for breakfast. So the washing machine had to wait until Mr V was fed.
Once done, the drum was charged, fed with a spongy blue tablet, and off we go. Monday was laundry day: two loads, one tumble-dried, one not. The kitchen duly turned into a Chinese laundry and stayed that way all day.
It was cold and windy outside, so I stayed in and tended to the bedding. I whiled away the time with various useless tasks and eventually realised I hadn’t written any self-advocacy for days — two days in particular. Well, it was the weekend.
There needed to be an explanation for the thorny question of the city hospital meeting two days before Santa arrives. The lack of explanation on Friday’s phone call was the problem, and I was up to the challenge of asking what the score was.
Because if I’m right — and the meeting is in a special investigation suite — there’s going to be no chat about all the lesions around my body, only the ones they might want to zap.
So I sent off the same old questions in a different order, settled among the laundry, and waited with the TV remote and an easy-peeler or two. Yummy.
By the time I retrieved the 15th chocolate from the Lindt advent calendar, I had a call from the hospice.
“Is that Mr You-Know-Who?”
“Yes, it is.”
“How are you? Are you able to make it in for your meeting with Dr M on Wednesday, or do you need a house call?”
“I’ll be able to get to you,” I said — with such confidence and grace I surprised myself.
“Okay, that’s it. You’re sorted. Bye.”
Fantastic. That’s got that done. Afterwards we can have a coffee in the café and watch the hospice-world go by. Not much but a reason to enjoy it.
The laundry was in full swing and my heart was pounding with a happiness that only comes from doing a job that helps my Darling — purely because she doesn’t have to do it.
And now for something completely different.
I’ve talked this over with my Darling, my youngest, even Mr Vicious — and I’m still not happy with my understanding of it.
It’s a reply from the oncology secretary to my questions earlier today. It goes like this:
“I have forwarded your email to Dr S and team.
They have asked me to let you know that they will be updating the palliative care doctor that is seeing you on Wednesday [about] your email below so that he can discuss with you the purpose of the proposed appointment in the City Hospital on 23/12/25.
Kind regards,”
So — as I understand it:
My oncology team will talk to my pain-relieving hospice team about my questions regarding where my lesions are.
And the pain-management appointment on Wednesday will be used for oncology communication with me — especially about the reasons for the proposed city hospital appointment.
Wow.
Am I understanding this correctly?
I’m not an idiot, but I do not like being jerked about.
And I am being jerked about.
This email chain dates back to early last week, after the pow-wow with Dr S.
I realise more radiotherapy could be arranged for the worst parts of my anatomy — but why not do it in a more normal way? For example:
Chat with me about the lesions.
Ask me if I want radiotherapy for pain relief.
Then send me to the city hospital to get sorted.
I’m always battering the NHS lately for bad communication, and things are at an all-time low between me and my team.
Anyway — there it is. I await my sideswiped pain-relief meeting at the hospice with keen interest.
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I nearly forgot my Darling. Bless her.
She had returned after a long days work to head upstairs for a recovery nap.
It was 6:30pm by the time she woke up and returned to the me and the messy laundry room.
But she had a great sleep at last.
When I’m well she sleeps better, long may my improvement continue.
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Two days until Byron comes for tea on Wednesday. For the first time. Exciting.
What could go wrong?
Good night.
