Post 121: The Invisible Man.
I’m over here. 
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Do you ever get the feeling that you’re not as important as you thought you were? Not in a selfish or sulky way, but in a way that leaves you feeling guilty — as if you’re making a nuisance of yourself.
Today, as yesterday, I had AFib. Every time I got up to do anything I found myself reaching out to steady myself, then stopping somewhere safe to wait for the buzz to stop in my head. Both episodes were nine hours long, and if you haven’t had them before — they’re exhausting.
But that’s on top of the fourth straight day of diarrhoea, only briefly relieved this morning when the local hospital cancer day unit phoned with the good news that the stool sample showed no infection. No antibiotics needed. And because chemo has been pushed a week, I should be able to get my health back.
Why didn’t that fill me with relief?
I should have been happy, but instead I felt even more down. I didn’t know what to say.
Maybe it’s the fact this diarrhoea has worried me so much — especially with the sight of blood — that I feel like everyone’s moved on to the next patient without knowing what I’m suffering from and why.
Life’s not like that, I know. Not everything can be understood or explained. I’ll need to get used to being a “question-marked individual” where the unexplained box is ticked.
As the cancer care nurse told me yesterday, it’s “another chemo side effect,” so: eat bananas, drink plenty of water, and Dioralyte. I still have unanswered questions. It’s my body rebelling, and it doesn’t feel right to do nothing — or nothing much — except endure it because that’s just what happens on chemo.
While on the phone (from the day unit), the lovely nurse — who had no idea how my mind was whirring with anxieties— asked if I wanted to know my PSA. That woke me up.
“Yes, please,” I said.
“It’s down to 484,” she replied.
And as there was nothing else to say, we said our farewells.
PSA 484!
My mind started whirring in a new direction.
Bloody hell — down 29, that’s rubbish.
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My Darling had come downstairs earlier and still looked tired. The pills and potions are settling some of her issues, but she was glum today.
I’ve been trying lately to help her — not with chores or practical jobs (mores the pity), but mentally, when I can. Today, though, we escalated each other’s glumness.
She asked for my PSA score, and I told her. I followed with a rant about the puny drop being another nail in the coffin for Carboplatin, and I brushed aside any utterances she was trying to offer for my comfort. I was in a very controlled fury.
The one thing that might have cheered me up today was a PSA drop over a hundred, like three weeks ago. But a drop of 29? Not what I — or my oncologist — would call anything but a disappointment.
For me, on top of everything else, it’s breaking my sense of humour and resolve. Yes, I’m fragile because of many things, but I normally pick myself up, dust myself off, and start all over again. Each day that’s my mantra:
It’s a new day, so start it with a clean slate.
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So, in my current mood, I wrote a quick email to my ever-helpful cancer care nurse — to tell her the news about the all-clear on the diarrhoea sample and the pretty rubbish PSA drop of 29.
I thought she might now better understand how under-par this Carboplatin is. A reply from her later might have lifted my mood…
But within seconds, her out-of-office reply arrived.
“Sorry, I’m out until Monday…”
Bugger hell.
Drat and double drat.
This is not my day.
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Right. I’m not dropping this ball. I’ll try instead to get a longer, fuller message to my oncologist, Dr S — to advise her of my intentions during this week’s suspension. To ask her to look with fresh eyes at my statistics and, if necessary, override the current plan to find the most appropriate treatment for me now. I’ll accede willingly.
Unfortunately, my cancer care nurse is my only direct line to Dr S — but there are oncology secretaries. So, I sent it to them, hoping they can forward it.
Yes, I’m being pushy.
If I’ve learned anything about self-advocacy lately, it’s this: if you don’t do it, no one else will.
I’ve not heard back — which I’m taking as a success, for now. I might ring them tomorrow to see if they’ve looked at the message yet. It’s not worth giving up. I need action now.
All my efforts in the last three months have got me nowhere except into more discomfort — without pushing back the cancer, which was the whole reason for taking this path in the first place.
I feel like I’ve wasted three months, and I’m being treated like a guinea pig in a lab. A number, not a person.
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Yes, I’m bitter. I’m in pain, worried, unsatisfied — and boring the hell out of my dearest Darling (and you, if you’re still reading?). That’s the hardest part. She has her own problems that I, mostly, ignore, because of my selfish focus on this invisible horror lurking in my bones. I try to be a better person and help her, but truthfully — I don’t do a great deal at all.
I sit in my rocker (which isn’t that comfy right now), complete sudokus, and watch TV. Sometimes with my Darling. But it’s nothing like it ought to be.
My shoulder rotator cuff is sore; I can’t cuddle her on my right side for long before it’s uncomfortable. My mood ebbs away as the day fades, and all the while I’m scared of eating something that will cause me pain within an hour in my derrière.
Is this what you’d call living?
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The buses are awaiting instructions. So am I.
I’ve got a Zoladex injection tomorrow morning. What’s that even doing for me? Why am I still on HT? My PSA is in the stratosphere, and my hot sweats seem to be for nothing.
I despair sometimes.
Tomorrow I’ll wipe the slate clean and try to be myself again — something I’m really not today. Today I feel invisible.
Hurrah for the end of the day. 
