When diagnosed, I ate up books by inspirational survivors who shared their tips and tricks for making it through the cancer maze. One of my favorite cancer surthrivers is Kris Carr, who starred in the documentary “Crazy Sexy Cancer” and went on to write several books on healthy living, such as “Crazy Sexy Cancer Tips.” I flipped it open and agreed with every sentence, up to the part where she suggested I create a “Cancer Posse” consisting of other survivors like myself. Immediately the record player in my head scratched and I said, “No thanks, not for me.”
Before cancer, I considered myself pretty tough. I ran a marathon, placed first in a sprint triathlon and hiked across a country carrying everything on my back. I’ve always enjoyed my solitude and these achievements were completed alone and by choice. So, when several people suggested I join a support group, it sounded like self torture. Plus, my perception of cancer survivors was that they were thin, sad, sick, bald, weak people and I cringed at the thought of sitting in a church basement, in a circle of tears asking, “Why me,” while others rubbed my back. Those are not my people, I thought.
(Keep reading – I’m going to eat my words.)
However, I was thirsty for information and found an online group of other pancreatic neuroendocrine tumor survivors on Inspire.com. Without even realizing, I had joined a support group. After a month of participating in online discussions, the members encouraged me to seek a specialist. Their insistence and physician recommendations resulted in a consultation with one of the top neuroendocrine cancer doctors in the country, who provided me with a good game plan. I thought of support groups as outlets for emotions, but the fact that they could be a place to exchange valuable information had never occurred to me. In my case, I found this online group to be more knowledgeable about my disease than most doctors.
Then a year ago, I got pretty sick from cancer and treatments. My friends and family were desperate to help, but none of them really understood what I was going through. Cancerland had a population of one and left me wishing I would’ve created that cancer posse.
One day, in the midst of my treatment chaos, I posted an update on Facebook and an acquaintance from long ago immediately sent me a message sharing her story and offering support. I knew she had also been through treatment and could relate. From that point on, we exchanged messages and texts checking in on each other. Eventually, she came to town and we met up for two hours and talked non-stop about cancer, commisterating about doctors, wait times, side effects and weird things that happened to our bodies. Wow, did it feel good! I had the first official member of my cancer posse. Since then, this friend moved to my city and I’ve added a couple more members to my crew. I hang out with these friends all the time and we almost never talk about cancer. Not only do they make me feel less self conscious about my unusually short hair and protruding chest port, but it’s comforting to be a phone call away from someone who gets it.
So, I hereby retract my disdain for support groups. These days, they are much more than sitting in a circle and crying. They provide a sense of comradery, make you feel less alone, share helpful information and are full of people who have deep empathy. I realized your posse doesn’t have to be traditional. It just has to be one that works for you.
As for me, I still haven’t joined a live, local support group, but I have my own, unconventional posse consisting of a small, select group of friends and hundreds online in the neuroendocrine cancer community who are always to happy to share their decades of wisdom.
Now, let me publicly apologize to anyone who has ever faced cancer for calling them thin, sad, sick, bald and weak. Before diagnosis, I considered myself very strong, but chemotherapy and cancer brought me cowering to my knees. If I had only known then, what I know now, that cancer fighters are some of the strongest, baddest, toughest people on this planet. I’m humbled and grateful to be among them because they are my people.
Read my other Cure articles here.