Retrospective: Communication Missteps

I had intended to go to a local No Kings protest yesterday, but I wasn't feeling well enough to and spent the day resting instead. Anand went, though (with the pictured sign), as did Gita in Atlanta.

I was all ready to protest, but...

I think I overdid things this week. I've been feeling so much better that it's been a little hard to rein myself in. I could feel the fatigue building on Thursday and Friday, so I guess I should have paid better attention. Another time I'll stop and rest a bit earlier.

Meanwhile, I thought I'd share some thoughts that have accumulated along the way on my cancer journey but have not yet made it into this blog. 

I have been lavish in my praise of the medical staff I have encountered so far, and with reason. However, there are a few ways in which medical communication has gone wrong. I'll take the opportunity here to vent about them. 

1. Toxic positivity. This one is my particular bugbear. As I came out of the minor surgery to implant my port, I happened to mention to the attending nurse that a friend of mine was having surgery the same day but for prostate cancer. She remarked that that was a more serious surgery. "Yes," I said, "but my prognosis is more serious." This was absolutely true. The prognosis for pleural mesothelioma is much, much worse than that for stage 1 prostate cancer, even now that I am in partial remission. But still, she scolded me for saying it, on the grounds that it was too negative. As they say, denial is not a river in Egypt. And forcing it on people who are suffering is outright cruel.
2. Reflexive Cheerfulness. This one can be nearly as bad as toxic positivity but is less intentional and therefore more easily forgiven. When I called the oncology office to schedule my first round of chemo, my world had just imploded, and I was feeling very ill. The scheduler and I agreed on a date for the appointment, and as we were wrapping up the conversation she said chirpily, "Have a great day!" I'm sure she didn't mean anything hurtful and was merely reverting to her normal conversational script, but it struck me that people who work for oncology practices should learn to avoid such reflexive cheerfulness. It can land badly.
3. Automated Cheerfulness. This one combines the frustrations of reflexive cheerfulness with the particular rage that comes of dealing with an unfeeling machine. When one of my infusion appointments approaches, I get an automated reminder in my email that begins, "We're exciting about your upcoming appointment!" Well, I am not excited. I am grateful beyond words for my chemotherapy and immunotherapy, but "excited" is never a word I would use about the experience of receiving it. 
4. Automated Assumptions. This one brings more rage against the machine. When I go to see my cardiologist, I get a report from the visit on my way out. There is always some boilerplate prose at the end about heart-healthy behaviors, including exercise and weight loss. "Limit your daily caloric intake to 1800 calories," it advises. Limit calories? With cancer? Seriously? Don't they know that cancer kills by starving its victims? By the time I started treatment I had lost nearly 20 pounds, and I wasn't overweight to start with. Fortunately, I have gained a lot of the weight back—by ignoring this advice!