My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Thursday, March 27, 2008

Support Group Irony

I would not join a cancer support group after I was diagnosed. I was tough, I was strong. I didn't need to be in a support group with other cancer patients. Support groups seemed to me to imply weakness, they were for people who couldn't handle it. I could handle it. I didn't need help.

But deep down, there were other reasons I didn't want to join a support group or spend a lot of time in the company of others diagnosed with cancer. I was afraid I might watch someone in my support group have a recurrence and die of cancer. That I might have to support them as they succumbed to the enemy that I was fighting. Would I be able to do that? I was afraid that someone just like myself who thought they would "beat it" would lose their battle. I knew that would make me feel vulnerable, that it might destroy my resolve and certainty that I could beat my own disease. I was better off in the healthy, cancer-free world. It was safer.

I went through a very great struggle in my survival after awhile, though, after treatment. I was stuck. I was healthy, but still a "cancer patient". I was still tested often, I still saw oncologists frequently. I never new if each test would hallmark my return to the world of active cancer. I wasn't really well and normal again even though evidence had so far declared me cancer-free. I was instead in a continuous watchful waiting mode. I was just kind of on parole from cancer. No one would call me cured. So it wasn't really over. I was struggling. And no one on the "outside" could understand how I felt, I'd finished the hard part, surgery and chemo, and had good test results. Why should I be struggling in light of such a positive outcome?

Then I found the book "Dancing in Limbo: Making Sense of Life After Cancer". I was so very relieved, someone understood how I felt and even put words to my feelings. But that's because the authors were cancer survivors, so of course they could relate to how I felt.

After that I joined for a short time a "Wellness" support group for those who were struggling emotionally after treatment. Some in my group had recurrences and died. We had candles present at meetings to represent the spirits of those who had gone before us. And it was okay, the group gave me a sense of peace that had evaded me until then. It made me strong enough to reread all of the medical research about my cancer so that I could construct my web site. It helped me find the courage to become a hospice volunteer for 6 months so I could also learn how to support those who wouldn't survive our disease.

Now, since publishing my web site, I communicate with cancer patients every day. Cancer is a large and very real part of my daily life by choice.

Almost by default via my web site, I am now part of a large group of cancer patients who support each other....you could actually call it a cancer support group. The irony is that in the end I love being part of the community of those diagnosed with cancer. I love the support we can provide and accept from each other. I love the easy and natural way we communicate with each other. I love the sense I have of feeling at home with other survivors.

I got to thinking, I also love being a member of my Toastmaster's Club, we call ourselves the Executive Diction Club...it is a group that supports my objective to become better at public speaking. When I think of it, that's also a kind of support group, its just called a club. I'd probably not have wanted to join if they were labeled as a support group for those who find it challenging to speak in public.

I wonder if we should just find another name for "cancer support group". A name that sounds sheik and nifty and cool and that makes us instead sound like an elite club. Something we'll all feel privileged to be a part of considering our exclusive and strict requirements for joining. Only those tough enough to walk the cancer walk can be allowed as members. Not just anyone can join. Only the few, the proud, the cancer-afflicted can participate. We might actually have a lot of very profound fun (those in the cancer community can have a GREAT sense of humor), share meaningful insights, maybe in the end even be instrumental in curing cancer....who knows what great potential our club could have. We might change the world.

Any suggestions for a name for our club, anyone want to join? Only those with a cancer diagnosis allowed.

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