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.

Tuesday, March 6, 2007

Support Groups

I did not join a cancer support group after I was diagnosed. Did I need emotional support? Yes. But I did not join a support group for reasons I have never shared with anyone.

I was afraid. I was afraid to become part of a group of those who also had a cancer diagnosis. I had my mind focused on staying positive;the mantra I had in my head always was "I will beat this!". I could only contemplate surviving in my conscious mind (my subconscious mind though battled this notion with other possibilities in my dreams as I slept). I was afraid I might become friends someone who like myself recited the mantra "I will beat this" but who lost the battle. Or I was afraid I would convince someone else that we could beat the disease and then would succumb to it myself.

I had an experience like the one I was afraid of in spite of the fact that I'd not joined a support group, though. A woman who knew about my rare cancer diagnosis pulled me aside when I was diagnosed. She told me she was a survivor of an equally rare and fatal cancer, and that she had been cancer-free for 3 years. I'd never known she'd had cancer. Her mantra was also "I can beat this!". I clung to her, she represented hope that I could beat my disease also. She became my role model of survival. Then one day after I'd finished my last chemo, I stopped by to tell her I turned the treatment corner and was on on my way to survival too. Her face was expressionless, she said she was back on chemo, her cancer had recurred. I wanted so badly to support her, but at the same time she was a reminder to me of how vulnerable I was, how little control I had. I felt horrendous guilt as I wanted to avoid her. I wanted to run fast and far.

I've always volunteered in the senior community, and they became my support group of sorts instead. If I was home alone and afraid, I'd head to a nursing home to play piano for the residents. They were proof to me that many people DID actually live to become old. I surrounded myself with people who had lived long enough to become grandparents, who had lived long enough to fulfill their life's purpose. They also reminded me of how healthy I was. I may have been on chemo but I could walk without a wheelchair or cane, I was still very able, I was still very healthy.

Time does heal things, though, and I don't feel as vulnerable as I once did in regards to my cancer. My cancer was very aggressive, so the more time that goes by without a recurrence, the safer I feel. I do now know that we are all very vulnerable all of the time, though. I still live very much for today.

Four years out I did finally join a support group for a short time. I did so to combat the difficulty I had in reentering the cancer community when I published my web site, when I had to go back and read all of the statistics about my cancer that I hadn't looked at in so long. And several people in my support group succumbed to their cancer. I began volunteering with a hospice to get good at dealing with death. I've come full circle now. I'm less afraid of death, I see it as a new beginning and not an ending. I can be with those dying of cancer in their final moments, I am proud to be able to see them safely home.

My mantra has changed, it is no longer "I will beat this". It is "I will not let my experience have been for nothing, I will use this". Survival is no longer my main goal. Living a life of purpose, be it long or short, is my priority now. And I've found I love being part of the cancer community.


Mike's sister said...

My brother who is 58 has your same cancer. hOwever, his is in his entire pelvis, seeds everywhere and inoperable tumors that are encasing many organs and tubes. His surgeon says to prepare for a few weeks but the cancer specialist give him hope; how I don't know. I feel they may just be selling the chemo! How could one possibly recover from the severe progression of this cancer. His appendix and part of the colon were removed to give him more pain-free time before another obstruction occurs. This sounds like the worst I have ever heard of. What is your opinion?
Mike's sister

Carolyn Langlie-Lesnik RN BSN said...

Hi Mike's Sister,

I'm sorry your brother is having to go through this and that his cancer is inoperable. I do know some like him who have been able to extend their lives with chemo. Chemo can cause the cancer to grow more slowly or to stop growing for awhile in some cases, and I know some people who have chosen to stay on IV chemo for as long as possible.

Hope that helps!