Post 227: Je revive — but I’m tired.
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Waking to a pain that’s deep inside
Under the t-shirt, my sleep denied
Ask again, am I still alive
Regaining eyesight, Je revive
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Tiredness draws through me like a Groundhog Day for people just about coping with all the fun of the fair in the Carnival of cancers.
It’s not my eyes that are struggling today — it’s the rest of me.
I was wondering about filling in a questionnaire regarding one’s ability to cope with life.
Luckily there’s nowhere that will give me one. I just wondered — not for the first time this week — about my spirit.
It’s easy for our carers to slip and get tired of looking after us; no one would begrudge them a few days off to recoup and unwind, to have a rest from the continuing stress and pain they’re in — caused by us mainly, but they also carry with them all the stuff we tend to forget they have too. Whether it’s their own medical conditions or some inflicted in them by us or just a need for a break from the battle, they deserve it.
As for us in the shooting alley of a prostate cancer side-show, we will only be here while we still await the hot-shot that’ll “end our fun.” We are tense and fearful every day.
I’ve said I want to know how long before the sharp-shooter arrives, but it’s hard to know when he’ll turn up and spoil the fun.
It’s hard also to get a day off to be ourselves, whatever that is?
I was watching on the Food Channel yesterday — Series 1, Episode 1 of the Hairy Bikers’ Coming Home for Christmas — which is the first (maybe last) get-together since Dave had treatment, treatment that was working for him.
He and his lovely wife were sometimes nattering about the cancer and what it’s done to them, and to an untrained eye the editing of the show had “got away with it” regarding the explanations and notes that accompany the cancer pathway. But to me I heard the pain in his body through the creaking bits-to-camera that just had to be done but were all too much for a cancer patient to explain.
He says at one point that he’s chosen not to tell the press what cancer he has so his life doesn’t turn into a press lottery of when he’ll die.
It goes without saying that it’s not easy for someone who stands in the media’s way to make foodie stories surrounding themselves and his mate — and very brave to continue through the treatments into a recovery of sorts.
But I hear the frustrations in the positivity and the many sores of life he shares with his own wife, and me.
It’s a questionnaire I want to fill out this week and maybe occasionally in the future, where my honest opinion is sought — not my preferred stance on everything.
I should add that this questionnaire is patient read-only and not something to news-flash over social media in all its forms because of its earthy nature and possible negativity.
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I start the day in bed by pushing a bed-button on my left-hand side which raises my head. I don’t raise the knee part of the bed, which means I can get out of bed easier, but I slide towards the TV as my head rises up to see.
Does the pain in my side warrant a sip of morphine?
Is the pain still there?
Is it possible I can do without for now?
If it’s a yes, I pop out of bed and take a swig, but if not — like today — I can do without. This is a decision that is made without anyone’s advice or cheering. Just me and the butterflies and moths in my recovery room, my silent TV watching my every move.
I have decided to “water my lily,” as my Darling’s apt to say, and this is possibly the first of the day — or is it the last of yesterday? It’s all a blur.
What can I fill out on that questionnaire? Are there any easy questions and how many questions are there anyway?
I think some people I know would relish the idea of a morning set of questions to check their mood and set themselves for the day with their best foot forward.
But me? I’m not certain I could find the energy to do it to a finish any day.
Here’s a 35-question list of possible questions…
⸻
Self Evaluation Questionnaire
A. Physical Health
Pain level day-to-day (0–10):
Is pain controlled? Yes / No
Breathlessness limiting daily life? Yes / No
Sleep adequate? Yes / No
Fatigue level (0–10):
Symptoms that worry me:
B. Cancer Treatment Decision-Making
My goals for treatment are:
Most important outcome:
• Reduce PSA
• Reduce cancer activity
• Reduce pain
• Maintain energy
• Live longer
• Comfort-focused care
Toxicity I’m willing to tolerate: low / medium / high
Fears about treatment:
C. Daily Life & Independence
How much help I need daily:
Is help sustainable for my partner? Yes / No
Activities becoming difficult:
What gives me enjoyment daily:
D. Travel & Experiences
Importance of travel (0–10):
Fears about travelling:
Experiences I still want:
E. Emotional Wellbeing
Anxiety frequency: low / medium / high
What helps me feel calm:
Do I feel supported? Yes / No
Unfinished emotional business:
F. Finances & Practicalities
Are finances affecting decisions? Yes / No
Benefits/support I’m entitled to:
Help available for paperwork? Yes / No
G. Future Planning
What matters most if health declines:
Preferred place of care: home / hospice / hospital
Who speaks for me if I cannot:
Wishes I’ve told my family: Yes / No
H. Overall Quality of Life
Quality of life today (0–10):
One change that would improve it:
What gives meaning now:
What makes the next months worthwhile:
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I’ve not got the stamina for this questionnaire just yet — so does that mean I’m more positive than I thought I was, or not?
It’s still an unknown.
Ah well, at least I could contemplate it at a later date.
I think the pain in my side is what woke me up, so it’s probably a good idea that I take a swig or two and fall back off to sleep.
Good night
