Oct 232015
 

After my tumor removal surgery and before I found my way to my wonderful doctor’s alternative cancer program, I did three weeks of short-course radiation. To get the radiation, I had to visit the hospital’s cancer center. It was one of the most traumatic parts of my experience.

Walking through those doors — just the act of going in there — made me feel sick. I felt labeled. Stigmatized. It might have been irrational, but if I could have just gone to the regular hospital, to get treated there like regular people do, I’d have felt a lot better about the whole situation. Having to go to a special building, with giant letters on it proclaiming that everyone in there had cancer, felt invasive. It felt as emotionally invasive as surgery was physically invasive.

Intangible Costs of Labeling Patients

Why this deep aversion?

In a normal hospital, people are sick but in all sorts of different ways. Most of them are expected to recover. Also, no one knows why you in particular are there, so you have some semblance of privacy.

In a cancer hospital, everyone knows why you are there, and there’s an aura of pity, suffering and despair that’s hard to explain or escape. It’s an invisible mental pressure that takes a toll.

One of the reasons I didn’t mind office visits with my surgeon and oncologist was that they WEREN’T based out of the cancer center. I loved the relative anonymity and normality of entering their offices. (Important Note: The PRIMARY reason I chose my surgeon and oncologist was that they were the best in their field. Even if they had been based out of the cancer center, I would have chosen them. I’m just extremely glad they were elsewhere.)

No such luck with the radiation oncologist. I had to visit the cancer center every day for weeks. I felt like I was wearing a scarlet letter C.

Lingering Trauma

To this day, when I walk past the cancer center, I cross the street. I try never to go near it. I feel traumatized by the idea that people might associate me with such sickness when I’ve worked so hard to get healthy. I feel exposed and stressed near there, like every nerve ending is raw and electrified. It’s all in my head, but my feelings are quite real.

My oncologist recently moved into the cancer center, and I’m actually putting off my appointment. I hate admitting that my distaste for re-entering that building is a major factor. But it is.

What Could We Do?

It would help a lot if cancer centers were more generically named. Maybe just tagged with a donor’s name, like, “The Smith Center.” Or a doctor’s name, like the Block Center in Illinois run by Dr. Keith Block. Those names don’t trigger stress and fear. They don’t label the people who walk through the doors. They allow some preservation of anonymity and therefore dignity, especially in a city where throngs of people stream past the entrance every day.

Re-naming cancer centers is something people without cancer might never even think about, because they have no idea it could be a problem. I’m writing this to tell you: It’s a problem, at least for me, and I suspect for some other patients, too. In a population that often develops PTSD as a result of treatment, one easy change could have significant benefit to patients’ well-being during and after treatment.

We know we have cancer. Don’t tell the world, too.

Sep 292015
 

I hate Pinktober.

I’m relieved to learn I’m not alone in this feeling. When I was diagnosed with cancer, September was spinning into October, and Pinktober was much bigger and more widely accepted than it is now. I felt like I was supposed to get behind “the cause” when all I wanted was to get as far away from “the cause” and anything having to do with cancer as possible.

I painted my room pink when I was a child. I loved pink – flowers for my mother, shirts and toys and my bike.

During and after my diagnosis, I had a visceral reaction to the color. I felt like wearing it would remind me of cancer. I felt like I would be supporting companies that slap a pink ribbon on products that are unhealthy. I chose to wear black, because that’s how I was feeling. Later, as I recovered, I chose to wear bright colors – blue and green and orange – but never pink.

Finally, I calmed down a little and bought a pink sweater. I wore it. It didn’t change me. It didn’t make me get cancer again. It made me feel soft, feminine. And that was progress.

As October comes around again, the month of autumn and falling leaves, the juggernaut of sponsorship and races and pink and fundraising still feels like something I’d rather shut out. I want nothing to do with it, because I don’t believe they have the answer. I wish cancer were a non-factor in the world, something no one worried about and no one had to worry about. I wish it never tore apart another family.

But throwing money down a hole that isn’t getting smaller isn’t the way to go. And supporting companies that make unhealthy products as they “stand behind” cancer patients seems hypocritical and self-defeating. If they took all that money and invested it into removing unhealthy ingredients from their products, that would be progress. If everyone took a little step toward making everyone else a little healthier, that would be progress.

But Pinktober? No. It’s not for me.