Post 223: Steroid Rosy Cheeks Again.
I reached the back teeth with the cleaner-than-white toothpaste before my Darling tonight — the first time in weeks. Mostly because my chairlift was given the green light before she was ready to climb the stairs. I say my chairlift, and I suppose it is now, but I bought it for my Mum years before I ever imagined needing it myself. What a cost-effective purchase in the end, and a good decision not to give it away after Mum passed.
Opps! That “passed away” came out as castaway thanks to my dancing fongers (here we go again) — bloody nerves and age and drugs and cancer. Any old excuse will do right now.
I’ve eaten well today, partly because of my Darling’s constant calls from: “Do you want anything to eat while I’m up?” But also because I vividly remember eating those Dexa- something-or-others before radiotherapy yesterday — steroids, doing what they do best, making you hungry and making you look like an elf with glowing red cheeks from dawn till dusk.
Other than that, I’ve had stronger legs today and felt less tired. My oedema hasn’t been too bad considering I’ve not had my sexy blue stockings on today. I cancelled the compression socks and have been putting my legs on and off the leg-rest downstairs as and when my bum allowed. There’s only so long I can sit legs-up before having to get the blood flowing back down to my legs and sit down again feet to the floor.
So I’m pleased with my general health and feel much better than yesterday in every department… except my mind.
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For those wondering why this blog is called “To hop on, hop off is the question,” I have to go back to a week before starting chemo.
It was a big moment, a reaction to my very poor health and a PSA rising from under 16 to 133 by mid-April when I had my first Carboplatin infusion — hopping on. And the reverse thoughts of whether to continue treatment or not — hopping off. So the blog was titled thus but the reason for this first ever tippy-toe onto the realms of blogging was to clear my mind of all the unraveling and misconceptions in my poor head trying to deal with my cancer treatment upgrade to big-boys chemo. I was going round the bend with it all. So my blog was going to be my outlet.
If you read the Day 8 chemo post, you’ll know I wished I’d hopped off and spared myself the massive bilateral pulmonary embolism that landed me in hospital right at the start, and without a doubt remains the biggest cause of my current health crisis — to be settled next Thursday, the 4th of December.
At that meeting, all the assessments I’ve rationalised differently now will finally be brought back together. Back then at the start, the oncologist’s advice was my primary compass, with mine second. This time it’s not so clear and may be easier to hop off.
The problem now is that there’s little else that can help. The choice is starting to feel less like a free decision and more like a must-do-or-else. An easy hop-on decision, but that’s not fair.
Not fair, and I want a break from all this nonsense.
The buses are gearing up for next week’s meeting and will be there to take me on the next pathway if I choose. If not, I’ll hop off and have a rest — a Christmas without pestilent doctors and worries about the PSA numbers, thrashing around at 360 at the last bloods.
The route is unclear even with the best advice. My prognosis will help, but only I can make the decision for my family and for myself — and especially for my Darling.
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There’s nobody under more stress than my Darling right now.
It was written on her face and in the way she gripped my hand when the delivery arrived: the metal object that was basically an urn — though that’s putting it too simply. It’s really my home beyond this realm, the place I’ll be for my Darling to endure its unwelcome and sad existence, wherever it ends up being placed. Inside or outside, I won’t care, but she will.
My great pal — who took on the commission (ha ha ha, undertook) — put a very special effort into it as I said it was for my Mum, spending a whole lot of time on it as if it were for me.
Who knows who’s bluffing who here. Only he’ll find out in the end.
But the feelings it conjured today were elemental — the sort you can’t control. My poor Darling struggled to hold back her tears, torn between supporting me and facing the reality of something she does not want to think about, yet wants to honour because I wanted it.
I’ve had this idea for years, but getting it onto paper, and then made, has been a challenge both practically and spiritually. My Darling has to live with its presence in my head and now in sight — and its reminder of its eventual use.
After my pal had staged the item in all it’s glory, out of our sight, in our darkened kitchen — then gave us the full dramatic smoke and lights reveal — and after a few hugs of appreciation, my Darling was left even more sensitive to it all, more real, more present in time.
She went off to wash the new towels she’d bought to replace our tatty old ones. I quietly packed the barn into a transportable bag to take to the funeral directors in a couple of weeks, to start plans for my big day where all my and her mates and our family would be there.
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I was left with a gut feeling that I should be making headway on other important matters. The woozy sense of unfinished business wouldn’t go away. Bills, MOTs, insurance — all needing doing. But I’m not quite there yet, not mentally, not practically. My Mum called it “nurdling” when my dad did it. In my case, my Darling never says a word. She doesn’t know I’m putting things off — and what’s unknown she can’t worry about.
I’ll get to it soon.
Some things, though, have to be shared decisions — like the funeral plans. One step at a time, when we’re both able. I can’t rush it. We have to be on the same page.
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I wonder if little Toblers will help with the rosy cheeks?
Or ease the burning on my left breast where the rib radiotherapy was aimed?
I do hope so.
It looks like I’m going to give them a good chance anyway (see photo).
I hope my Darling forgives my chocolate abuse — it’s in the name of scientific research into the pain-relief properties of Matterhorn-shaped sweets.
Perhaps I could get paid for this under-appreciated trial.
In any case, the results aren’t in yet.
So I’d better conduct more tests.
Wish me luck.
Good night.
