Afraid of Cancer Support Groups?

Since being in the cancer community for several years, I’ve been puzzled about participation in support groups. Many, myself included, choose not to join cancer support groups when they are diagnosed.

I personally kind of had an aversion to small group participation prior to my cancer diagnosis. When I was in nursing school, we had some mandatory “small group projects”. They made me nuts. I am very independent and like to set goals and achieve them…the small group settings in school kind of complicated things. We had to all bargain and agree on various responsibilities, had to find work schedules that served everyone, had to compensate for those who didn’t pull their weight etc. etc. Trying to achieve goals in a small group just complicated things. I achieved goals better solo.

I truly struggled with the emotional ramifications of my cancer diagnosis, but didn’t want to join a cancer support group when I was diagnosed. I think for me joining a cancer support group then would have represented weakness, and I was strong. I was going to beat my death sentence. I was tough, I didn’t need to be part of a group of people who were struggling, who couldn’t “handle it”. And in all honesty, when I was diagnosed, I didn’t want to be around other cancer patients. I felt vulnerable enough…what if I made friends in a support group with someone who just like me, planned to beat it, but succumbed? I wanted to be around strong and healthy people then, I didn't want being a cancer patient to become my identity.

I got to thinking later about my aversion to group involvement. For two years I ran a local soup kitchen, and all of us who worked there were like family. We knew what was going on in each others lives; celebrated each others birthdays and struggles. We supported each other. I guess, in reality, that was a small group. I am not running it anymore, someone else is, but I still work there sometimes as I love to see those friends. So maybe I’m not that adverse to small group involvement after all? Maybe it depends on the group?

In the end I did join a cancer support group for awhile, but a few years after my diagnosis, when I had no evidence of disease. I was still struggling with the emotional trauma of continuous testing to look for expected recurrence, the uncertainty in my life. I needed insight from others who had experienced the same struggle. And some in my support group did pass. There was a candle lit at meetings for each of those who had lost their battle. And some had recurrences and would eventually lose their battle, we all knew that. But I learned from them, how they celebrated each day, how they honestly dealt with what we all fear. It made me face that fear, and that was a good thing. I think maybe closeted fear in the end is worse.

And some of my best friends now are those struggling with appendix cancer and other cancers. Some have recurrences, some have lost their battles.  I’ve since learned that those of us in the cancer community can support and help each other in ways no one else can. We have so much in common. We share so much. We are good resources for each other. I am often approached by appendix cancer patients who ask if we can stay in touch, if we can share, if we can be friends (though they don’t want to join support groups either).

Some appendix cancer patients ask me if I know of others with appendix cancer who might be willing to communicate with them and support them. I’ve communicated with over 700 appendix cancer patients and play match-maker sometimes.

It’s kind of ironic…while most of us don’t want to be in “support groups”, we all want to be in contact with someone who shares our experience, who can support us in the ways those without a cancer diagnosis can’t.

I wonder sometimes if we just need to change the image of cancer support groups? I think in the end we have the potential to empower each other. Maybe we need to redefine “support group”? Make it instead an exclusive club of empowerment that only those with a cancer diagnosis are privileged to join? And make sure we have some fun?