CANCER CONVERSATIONS ONLINE AND OFF

Cancer conversations never get old for people who’ve had it, and those living with it.

They happen in waiting rooms for chemo, waiting rooms for radiation, and waiting rooms for scans and probes.

Sound fun yet?

This isn’t a suggestion: Make it fun or a little of you dies in that waiting room.

Find something.

My current cancer guy on Twitter has reported his progress and how he copes.

That’s not my way. I took notes for a book I’m working on to help others get through it in one piece.

But this guy is going step by step from initial discovery to the effects of treatment.

Now he’s at the end of radiation reminding his readers that it has an accumulative effect, and that he’ll be having his worst days next week.

Online Talker

Tomorrow is my last day of radiation! The effect on fatigue is cumulative (and also has a delay) so my worst day will be sometime next week. It’s only weighing on me a little bit right now, and I basically didn’t feel anything until yesterday.

This all checks out.

This particular man comes from the ‘MY CANCER’ school of thought. I predict he’ll eventually say, “Cancer was one of the best things that ever happened to me.”

The first clue?

I keep talking with other cancer patients at my cancer center and I’m often astounded by what seems like a lack of interest in their own cancer. I talked to a guy today who had non-hodgkin’s lymphoma and asked what kind and he DIDN’T KNOW!

Meanwhile I’m like “In the 1830s, Lawrence Hodgkin was a curator at a museum of human anatomy…”

Followed by:

Hm? Hodgkin’s disease is named after British pathologist Thomas Hodgkin.

From Britanica:

Thomas Hodgkin, (born Aug. 17, 1798, Tottenham, Middlesex, Eng.—died April 5, 1866, Jaffa, Palestine [now Tel Aviv–Yafo, Israel]), English physician who early described (1832) the malignant disease of lymph tissue that bears his name.

Offline Cancer Conversations

“Neulasta comes in a patch so you don’t have to go back for a shot.”

When you day drink in a bar talking about cancer with the guys you know something’s up.

“Now there’s a shortage of platinum cancer drugs.”

Intas, the India-based company that — until late last year — made about half of the key cancer drugs used in the U.S. Then, after FDA inspectors found evidence of major safety and quality violations there last fall, the company’s production of key cancer drugs was halted, which abruptly cut supply. 

This is news that sends shock waves through every patient, every family, every doctor who sees cancer patients.

First you feel a lump. You get it ‘looked at.’

Then you get the, “Are you sitting down” phone call.

Who can imagine hearing, “This is a very curable cancer, but we have a drug shortage for treatment. We’re so sorry.”

What I Heard On The Way To My First Chemo

My wife drove, I made a call.

Wife: Who are you calling?

Me: The insurance to check on coverage.

Wife: Didn’t you do that yesterday?

Me: And the day before. This is a big day.

Wife: Yes it is. And I’ve got a full schedule.

Me: I mean chemo.

Wife: We know chemo.

Me: We will.

Me: (on the phone) Yes. Okay. Could you check again? Thank you, good-bye.

Wife: What was that all about?

Me: They said our insurance is cancelled.

Wife: That’s not right.

Me: The clinic said everything was a go.

Wife: Now we’ll end up fighting the insurance company.

Me: I’m canceling today before we get tagged with a bill instead of insurance.

But I didn’t cancel. Instead of the nice infusion clinic in the suburbs near me, I had the doc reschedule me to the St. Vincent cancer ward where there was no insurance question.

Before I left the clinic they accessed the chemo port so I got in a cab with tubes dangling out of my chest.

I sat as still as stone on the ride so some tube wouldn’t pop and I’d bleed out while the driver complained about Uber then over-charged me.

Did I give a big tip? Yes I did.

The rest of the day went about the same way.

A reminder: Even when everything is lined up and ready to go, something could come up.

From Big Pharma price gouging to chemo drug shortages, to some insurance office worker checking the wrong box, stay calm.

The day after that first chemo the insurance company assured me I wasn’t canceled, which is how folks feel when they’re on the outside looking in.

That’s when cancer conversations take a darker tone.

Tell me again about ‘Cancel Culture.’