Post 44: Self advocacy.
On the day Joe Root hit his 13,000th run in world cricket—only the fifth batsman in history to reach that milestone.
Where do I even start to explain the everyday pain of self-advocacy?
Today I’ve written around eight emails, made three calls, received four replies, and one call back.
And I’ve got absolutely nowhere.
The circles I’m running in all lead back to the start—again and again—and it’s beginning to feel like there’s a conspiracy against me.
⸻
I got a call today…
“Are you coming in for your second chemo tomorrow?”
Sounds okay, right? Nothing wrong with a quick check.
Except the person calling was from the day unit where I had the first Carboplatin infusion.
And that means… yesterday’s conversation with the registrar was
meaningless.
I told the caller, “No I’m not ready yet”, “My chemo is on hold pending a cardiology review. It’s postponed again probably for another week. But you should’ve already been told that by the oncology team.”
“Oh, okay. Next Friday is good—I’ll move it back,” she said.
“Great, I suppose,” I replied.
In the grand scheme of things, it seems like a good and healthy conversation.
But when exactly did I become the middleman between oncology and the chemo ward?
Apparently I’m now handling bookings too.
At least I know what’s going on. First-hand.
That’s got to be good… right?
⸻
The next issue is with the registrar’s one very important job:
To organise an urgent cardiology referral.
After several emails and a phone call, I found out that the letter reviewing the clinical meeting I attended yesterday, still needs to be typed up (sometime in the next two days).
Then it’ll be sent to cardiology.
Then they’ll review it.
Then—if they agree—I’ll get a phone or face-to-face appointment.
But since Monday’s a bank holiday, there’s no point in chasing it before Tuesday.
What!
Is that what they call “urgent”?
Because it sure doesn’t feel like it.
That means the cardiology appointment—where an assessment of the PE and AFib would help decide if it’s safe for me to resume chemo—and this might not happen before next Friday.
The chemo that’s already been postponed might need postponing again. Grrrrrrrr.
If it is delayed again, it’ll be more than seven weeks since my first infusion.
That can’t be good.
⸻
To be fair, this break in chemo was originally my choice—just so I could recover from the PE and understand any further care I’d need before restarting.
So in some sense, I’ve only myself to blame.
But wait just one flipping minute.
Yesterday afternoon I had my second-opinion oncology appointment—two counties away.
By 9 a.m. this morning, I’d received:
• One email confirming a follow-up phone appointment (in a month),
• A full after-meeting summary,
• A treatment suggestion and timeframe,
—sent not just to me, but also to my GP and my local oncologist.
How, in God’s name, can they be so organised and helpful—when I’m just some guy asking for a second opinion?
The care shown to me by these strangers—clearly experts at the top of their field—made me cry with happiness.
But the sad reality is that my local service is overwhelmed, inconsistent, uncommunicative, and snail-paced.
The contrast between the two extremes is shocking.
And now I can see why My Darling is off work with stress…
And why we’re seven weeks out from the first chemo with still no second infusion in sight.
It’s mostly because I am the only one coordinating this.
I’m the one pushing, liaising, coaxing—being a persistent pain in the neck to every department at my local hospital.
All for what?
⸻
I’m wondering how the speed of standard practice at one hospital is half a week faster than an urgent request at my local hospital.
———
I’m ready for another oncologist to lead me back to the promised land.
I’m ready to give up waiting for a cardiology to stroke my ego.
Ready to gamble and restart chemo.
It’s what oncology wants.
It’s what I want.
It’s what’s best for me.
Why am I so worried about my heart?
What have I got to lose?
Why am I being such a baby?
Just do it Mr U.
⸻
In other news; tomorrow I have a blood test and a GP appointment. I’m looking forward to that. Maybe the GP can answer my questions.
Big Sis came for lunch again today—complete with another goodie bag for me.
This week’s treat? A homemade marmalade cake. It was lovely. I’m properly spoiled.
The only downside? I bored her silly talking in medical circles the whole time. Poor Sis.
I know she sympathises with my marathon medical misery—but I really need to know when to stop, and let healthier, lighter conversations take root.
I’ll try harder.
⸻
The positives in each day are the best things to put in the blog—proof that we are coping.
That we are thriving.
Yes, my mind is consumed by the details of my predicament… but there’s so much that makes My Darling and me smile and laugh out loud.
Some moments are so silly they don’t even make it into the blog.
Me going up and down in the stair-chair, for instance—always a guaranteed giggle.
And Mr Vicious? He’s feeling the strain too.
He’s a tricky customer lately.
I try not to spar with him like I used to, but that’s just making him more independent—and grumpier.
⸻
I suppose I’m like most of my fellow travellers:
Never far from the next disappointment.
But with an unhealthy disregard for reality…
We get by.
Keep smiling.
Find the funny side.
Don’t brood too long on lost causes.
Be your best version of normal—even when your heart is crying.
I need to focus on My Darling more.
I need to focus.
