Thread by @you_me_we_today

Strange meeting with oncologist today. After three months of Private Health appointments ending with a #prostatecancer diagnosis I changed course to be treated in the public health system.

Suddenly this private appointment is Bulk Billed.

They wanted to know how it was going in the Public system. At least thats what the guy who made the appointment said. But the oncologist pretended to not know I was under treatment. It was weird.

It made little difference to me, I was there for another reason.

I was there to tell them about the massive holes in their treatment approach so that maybe other blokes can have a little less distress during this deeply troubling episode.

I had 9 points.

1) Appalling lack of information.
Each consultation info was postponed til the next.
Dragged out for months.

Could plan NOTHING.

Tip: Give people these

Prostate cancer Science_of_Living_Well.pdf
Prostate cancer understanding.pdf

Its like a uni degree in an arvo read.

And while the urologist or oncologist is at it, stock this book @bytimbaker. Maybe give it out as part of the #prostatecancer diagnosis process. I have shared page 23 which outlines the diagnosis trauma with both my specialists today. penguin.com.au/books/patting-…

2) Abandonment. My diagnosis was bang on the cusp of Christmas. Happy 2023.

Every doctor I had involved in my case went on holiday. The GP, Urologist, Radiologist, Oncologist even the Doc I got a second opinion from went on holiday that afternoon.

Nothing against people going on holiday but mid January their offices were still closed.

Weeks without a treatment plan, no information to plan for the year – just wilderness.

3) Confusion. Two months after all the data was in, still unsure as to the exact treatment plan.

4) Cost. Suddenly, today we can bulk bill?

The cost for the proposed radiotherapy and ADT without Chemo was $40,000. 85% paid for by gov, leaving $7,500 with some other discount to make it 4k.

But more that this was the financial cost of not being able to plan our year.

Moved to GC 3 years ago, spent a year getting premises prepped then covid hit. This was the first Christmas we could launch for since moving. Money came in in October. All set to catch the first big wave in three years, then all plans Molotoved.

5) Language.
ForFckSake! Stop saying "Castrate". Castrate-sensitive prostate cancer.

Yep, I'm a bit sensitive but… also called androgen-dependent prostate cancer, androgen-sensitive prostate cancer, CSPC, hormone-sensitive prostate cancer, and HSPC.

So choosing that word is?

6) Disregard for sexual health.
None of the Private heath docs even asked. It was some kind of given that, well we are here to save your life so forget about that. This was depressing and distressing for both me and my partner.

7) Unaware of trials running in Public Heath at the hospital in the same suburb.
Seriously?

My second opinion was able to point at the exact trial in GC from Melbourne – in the one and only consultation.

8) was the financial cost of being unable to plan as touched on before. The thing is it affected more than just me.

9) In our first consultation the chemo oncologist talked extensively about moving to another city.

Ahuh. Right.

Lost and confused mid January, on a Tuesday I stood in the radiology department of the hospital and said
"I have grade 4a prostate cancer, type 4 on the five type scale and I think I qualify for the DASL HiCap trial. All my doctors are on holiday and I could do with some help"

That afternoon, a referral was arranged.
Noon next day met with radiation oncologist and trial manager.
Friday had ADT drugs in hand.
Monday had ADT drugs in arm.
Following Friday commenced the trial.

The quality of their care has been nothing short of wonderful.

Before that first meeting with the Public hospital oncologist I was given a questionnaire. One side of an A4 sheet was all about how you pee. The other side was about your sexual health.

I nearly cried.

But here is the real kicker.

The oncologist said the average life expectancy with treatment is 15 years – and we are going for cure.

The first time since I began eating this shit sandwich anyone had given me anything I could plan my life with.

Today’s meeting/appointment was weird and felt like it was private health trying to win back a lost customer.

Yeah, nah.