Cancer Support Groups Need to Fit Their Audience

As an avid proponent of support groups, I have to say that the first one I attended didn’t work. I didn’t know until much later that where we are in the journey can make a tremendous difference in a newly diagnosed person’s ability to take part.

Because I am an information junky, I sought out a group almost immediately after my diagnosis. Like most of the groups 30 years ago, this one was peer led. I have nothing against peer-led groups — that’s if someone has had some training in how to facilitate a group. We have all seen groups dominated by one person whose needs were probably massive before cancer ever entered the picture. Nothing can kill a support group quicker than one domineering person – and a trained facilitator (peer or professional) has the skills to redirect and mute these folks.

This peer facilitator of the first group I went to was fine. She was young — very young – and had breast cancer, although the group was open to all kinds of cancer.

The first night I went, I was scared about what I would find. I didn’t say much, which was very strange for me, and I know now that my only question for this group was an unspoken question.

Will I live?

In every moment, answer, question and movement, I was looking for reassurance that I would live.

The first night was easy, we talk about treatment and I got some advice. I don’t even remember exactly how many people were there or if I was the only new one. We met in the fellowship hall of a church. I was probably just struggling to keep from feeling the pain in the room.

The next meeting began with one of the group talking about recurrence — a place I knew was out there, but not one I wanted to visit.

It was also clear that something was different. Members were connected to each other in a way that was more intense than I knew. It was a connection I would find later with my support group. There was news in the room — news I didn’t know but could feel. About 10 minutes into the meeting, the leader from the last meeting arrived. Something was different. No longer a leader, she was clearly in need of leading. She began by saying that her scans came back positive and the cancer was back.

I was out of there. My body sat in the chair for the rest of the meeting, but my mind was gone. When the time was up, I headed for the door in a daze of “good wishes” and “see you later.”

No way. I didn’t want to go there yet.

When I went back to what would become my support group three years later, I formed the bond that I saw but didn’t understand in that first group. I also welcomed women who reminded me of myself that night — women who sat through the group, wearing the question we all knew so well: “Will I live?”

I would watch their faces when the understanding sank in that some of the women in the group had had recurrence. I’d watch them retreat into themselves and know that they wouldn’t be back next week and that there wasn’t anything I could do until they had traveled a little further on the journey.

It’s a problem with support groups that they almost need a mile marker outside the door to let women know where this group has been— and where it is going.

Sometimes the newbies won’t be able to tolerate the pain that is so evident in the room — the pain of loss and lives ended too soon. Just as the wrong support group is really awful, the right one can teach you and love you and give you peace.

I spent three years in the support group affiliated with my surgeon's office. These women became my sounding board to help me separate fact and fantasy. They let me cry when I was afraid and allowed me into their pain. I lived with them through our fear, and every other week we went to dinner together.

I haven’t seen any of them for years, but when I do run into one, we have a great time catching sound.