Post 120: Is “OK” Good Enough?
Where do I even start trying to explain today — with all the calls, the emails, and the questions?
Maybe it’s best to start at the end and work backwards to go forwards.
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My chemo has been postponed a week.
My health hasn’t been good enough.
I’ve taken the first steps to officially divorced my backside.
It’s been a nasty piece of work all week.
I still don’t have culture results from the hospital, to explain the cause of the diarrhoea, but maybe tomorrow something will grow in the sample dishes that will tell its tale — and eventually gets me some help.
Right now, I’m so sore I don’t know whether I need to go or not. This is a new kind of pain, and it’s not easy to manage. Sitting and lying down — the two things I’ve become very good at during chemo — are now a slow, tricky and uncomfortable dance.
I’m suffering from Sit-phobia, along with Shit-phobia.
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In other news, I finally got a response about the scan report I asked for. I can have it — once it’s been located by the cancer care nurse — but I don’t have it yet.
While I was discussing that and my current health with her, I also raised a bigger question: Is this chemo actually working for me?
I was emotional, yes. But I was also clear-headed. Strong-willed.
I told my wonderful cancer care nurse that if we look purely at the facts from the start of chemo to now — the halfway point — then:
• PSA has risen from 133 to 500
• Bloods are good (no infections, no infusions needed)
• Scan shows: some cancer is better, some is worse
That’s a Bad, a Good, and an OK.
And speaking for myself — the one who’s going through all of this — I’d call that OK for the mid-terms, with a footnote: could do better.
But I’ve done my bit.
I’ve stayed home.
I’ve rested whenever I could.
I’ve cancelled and lost two big holidays with special meaning to us (with flights).
I’ve kept myself as fit and healthy as possible.
And all I get for that is…
“The chemo is going OK.”
Well — is OK good enough?
Because it doesn’t feel like it. Not for me.
Not when I’ve battled through pain, clotting, back issues, and this current gastric nightmare.
We’re now delaying a week.
The cancer will thrive during that.
The PSA will be uncontrolled again.
Yes, I’ll recover in that week. I’ll be ready to fight again.
But I asked her — sincerely — if Dr S and the team could step back and reassess everything, from a fresh angle.
And maybe ask themselves — Talking Heads-style — “and I ask myself?”
Is Carboplatin really helping here?
If they believe it’s not, I said, then I give my full blessing to start the “big boy” chemo — Docetaxel — now.
I’m as fit as I’m going to be.
If the two and a bit months of remaining cycles of Carboplatin can’t do the job, and you leave me to AS for another three months, then I’d rather take on the tougher chemo now — while I have the strength — than wait for later in the new year, when I may not.
There were a few hums and arrs… but the idea landed.
The message will be passed on to Dr S.
So, I ask again:
Is OK good enough?
Is the plan set in stone, or can we pivot and adapt this week? We have time to rethink.
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Right now, it feels like the bus missed my stop.
Worse still, I’m not even sure I’m on the right bus anymore.
I’ll wait for the updated timetable and try to hop back on when I can.
But tonight?
No chemo.
No sign of the diarrhoea ending.
No clear answers.
And no silver linings.
I’m miserable. I’m worn out. I’m running out of ideas.
These last two weeks of chaos have felt like a trial by fire, and now, instead of resolution, I’ve been handed a week’s suspension.
It feels like the cancer’s laughing at me.
And the toilet is in on the joke.
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Let’s hope tomorrow brings something different.
Please.
