Thread by @revdrduke

It's almost midnight and I'm still processing this morning's appointment, my first with this particular doctor. Having never met before, the first sentence out of her mouth (after introductions) referred to my #stage4cancer.

In the 8 months since my diagnosis, none of the many doctors, nurses, or other medical personnel I've seen have used that language about my situation. None. Yes, I have metastatic cancer. Yes, that is #stage4cancer. But the language of cancer is such a tricky thing.

In the beginning, I rejected the language of "stage 4" as unhelpful. And in many ways, I still find it unhelpful. It has a way of shutting down reality. It has a way of sounding like it is the ending of a story that hasn't actually ended yet.

For example, my mother had stage 4 melanoma. She lived for 19 more years. (And when she died, it wasn't from melanoma). Stage 4 was not the end of her story. We actually never used the terminology of "stage 4" about her situation.

So in the beginning, I rejected the language of "stage 4" because I didn't find it helpful in any way.

And then people started trying to encourage me with stories of people they knew who had survived cancer. And invariably, whatever the example was, it was not someone with metastatic disease. I realized that a lot of people don't understand the word "metastatic."

So I started using the terminology of "stage 4" to help people understand. I'm happy for your 75yo uncle who survived stage 1 prostate cancer, but please save that story and tell me instead about your 45yo cousin who is still living with stage 4 sarcoma, please.

So I have an ambivalent relationship with the language of "stage 4." It's something I'm willing to use about myself sometimes, but it's not something I generally want other people to use about my situation.

To meet a new doctor, and have her so cavalierly toss that label at me, well, there aren't adequate words for what that feels like.

Frankly, the only way the conversation could have started on a worse note would have been if she had used the word "terminal." Which, if you ever actually want to see me lose my ish, then use that word at me or about me.

FTR, no doctor has ever called me "terminal."

A distant relative casually deployed that language in a Facebook comment not long after my diagnosis and I was equal parts incredulous and outraged. Why would you ever call someone "terminal" if they had not themselves first used that language about their situation?

(p.s. We're all terminal.)

There's so much more for me to process and unpack about today's appointment. But I am struck all over again by the vast difference there is between empathy and sympathy, between compassion and pity.

When I said earlier today that it has been one of the most disempowering/disorienting/demoralizing experiences of my life to sit across from someone who in every respect is my equal except that she's the doctor and I'm the stage 4 cancer patient, this is part of what I meant.

The damn pity.

The treating me like I'm some doomed and pitiable creature.

(while at the same time using really powerful language - like "stage 4" - in such a casual and uncaring way)

Things I don't want from my doctors:
- pity
- doom
- indifference
- certainty about things you can't actually be certain about

Things I do want from my doctors:
- partnership
- empathy
- respect
- openness to possibility

I read my thread to my husband this morning and he told me that "pity" was not his perception of what my dr yesterday was expressing. And I think he's right - this was a conflation with an experience I've repeatedly had with someone else on my regular medical team.

The word I keep coming back to is "doom." Which still may not be accurate but more my perception. I got the sense the dr felt I was doomed - but she treated even that fact with an offhandedness, a casualness that was jarring.