Gladly Dragged into a Leadership Role

My job as confidant to the newly diagnosed usually started with a phone call. Someone from Memorial’s radiation/oncology department – usually one of my nurses – contacted me with a name and number of a patient who just started their radiation treatments.

The nurses, doctors and radiologists knew I was doing them a favor. They might be around cancer patients all day, but most of them never had the disease, so they gave people information about side effects but they didn’t know how those side effects felt. They saw the fear, uncertainty and isolation on the faces of patients, but only another patient understood what went through the minds of the people watching television in the lounge waiting for their name to be called.

I wanted to help the patients. But I still had plenty of questions about what happened and was still happening to me. I was still dealing with my bouts of depression. And I wondered what help would I be. Would my advice be useful? Did I speak with the right mix of sensitivity, humor and fact based conversation? Did a provide comfort or was I scaring people?

I had no way of knowing. The staff told me that the new patients all appreciated talking to me, but I didn’t know if I was helping or making things worse. I didn’t know if I my advice helped because I never spoke anyone afflicted with a cancer similar to mine.

That changed a year later when breast cancer survivor and activist Joan Lennon asked me to model for the Secret Sister Society’s annual fashion show. The Secret Sister Society helps women pay for mammograms, and the fashion show is the group’s biggest fund-raiser.

All of the models are cancer survivors. The society pairs each model with a survivor who participated in earlier fashion shows. My mentor was Susan Coulter – an oral cancer a survivor who happened to also be the wife of a dentist.

Like me, Susan had children in grade school, meaning that she had to fight the disease while also preparing lunch and shuttling kids to school and extra-curricular events. Susan served as the Secret Sister’s liaison. For example, she sure that I knew when to get measured for the suit I wore at the fashion show.

She did so much more. A call to introduce myself turned into a hour long talk. Susan answered all of my questions about the disease that took away my sense of taste and my ability to produce saliva. You just don’t know how important spit is until you can’t spit.

Susan was a compassionate and calming influence. She understood the humor and the seriousness of the situation. She was patient and always willing to talk whenever I called. Her friendship became a source of strength, and our discussions about my illness, treatment and recovery became the model I use when talking to recently diagnosed people.

I’ve been cancer free for eight years. The nurses in the radiation/oncology unit don’t call me that much anymore. I’d like to think that maybe researchers have licked oral cancer, but I know that’s not true. It’s more likely that the folks in radiation/oncology recruited a new generation of survivors to guide newly diagnosed patients through the opaque and frightening empire of the sick.

I still see some of the people who I advised and they shake my hand and tell me how much they appreciated my help. That makes me feel good. We will always be united by our common diagnosis and by the fact that we are counted among that percentage who survived to watch children graduate or to pursue our own graduations.

I rarely talk to Susan. The Life of a cancer survivor resembles regular life the further removed you are from your diagnosis. So I imagine that she’s busy with the same concerns that occupy my time – working, raising a family, trying to stay healthy, involved in the community. I think of her a lot, and the example of compassion, patience and leadership she provided continually inspire and motivate me to be ready to help when I get a call from Memorial’s radiation/oncology unit.

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