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Live from the Support Group Leaders' Summit - The Tough Stuff

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This session covered how to handle the stickier issues of running a group. David Girard moderated a panel made up of Jack Aiello, Jerry Walton, Susie Novis, and Robin Tuohy. The whole idea was to spur an open discussion of the tough questions: talking about medical info with your group, talking about loss, support group dynamics, and how to find speakers.

How to handle medical information?
Jerry Walton first addressed this challenge, but soon questions from the group opened it up. It was understood that support group meetings were places that people were going to share medical information. You almost cannot talk about myeloma without talking about treatment and side effects. So how do you communicate medical info to and within your group, understanding that you are not doctors?

What Jerry called the "Newbie Experience" was a big part of the discussion, because newly diagnosed patients need to know how to get information. Many suggestions were shared, including how to find information on the web, the publications from the IMF, and second opinions.

Finding Speakers
Jack Aiello opened this discussion. He suggested that you begin by asking the group how often they want speakers. Most groups want them about half the time or less, because they want time for themselves, to talk and share. When looking for speakers, look for  local myeloma experts. community hem-oncs. An interesting session would be to explore how they work with the experts--the Duries and the Kyles.

Look for nutritionists and physical therapists who have experience with myeloma. Ask the folks in the group, ask other support group leaders, ask your oncologist.

Jerry pointed out that he goes to conferences trolling for speakers. He figures that they have shown by being there that they are willing to speak. And if he finds their sessions of interest, he approaches them. He also said that Drs. Durie and Anderson didn't know it, but they were speakers at his meetings. He used the DVD from the Boca Raton Patient and Family seminar when he didn't have a live speaker.

Dealing with Grief
Susie Novis addressed this topic. If there is loss in the group, talk about it, she said. Don't avoid the subject. Celebrate the person's life. Tell stories. "Hey," she said, "I would want people to talk about me after I'm dead." Ask the group what they want to do? If people don't want to participate, they don't have to. Schedule the celebration. Maybe make it at the end of the meeting, so if people feel uncomfortable, they can leave. Invite surviving caregivers to come to the meetings. Make a scrap book with pictures. Just don't ignore the loss.

Group Dynamics
Robin Tuohy closed the session with her topic: Group Dynamics. She started by saying she wanted to put a positive spin on the emotional roller coaster that is the myeloma experience: diagnosis, treatment, remission, relapse. How do you stay positive yourself and help your group members stay positive? She said, that at this summit she could feel the love, and suggested that we take advantage of relationships created at the summit. She asked Susie to talk about the "ten minute rule." There will be times that we need to cry. Okay, cry. Have a really good cry, but set a limit on it. Give yourself permission to cry for ten minutes. And then blow your nose and get back out there.

Robin encouraged us to be proactive. Acknowledge the myeloma experience. Know that at some point, relapse is there. What will you do? Plan. Be a better patient. Use education and research to help keep you on top of the subject. So you know what to do when the day comes. And when it happens, although you are never ready, you will be ready. You will circle the wagons and think about what matters in life most, focus on what's important.

Robin reminded us that it will not always be the myeloma. We are all getting older.

She talked about how to keep members coming back to the group. They come to meetings when they are in treatment, but when they are in remission, they often stop because they think they don't need it right now. Well, when patients are doing well, it is the time for them to give back. They were newbies once, and they learned from those with more experience. Now it is time for them to share with someone who is a newbie. It is their opportunity to help someone else.

Finally she said, "Don't be afraid to ask for help. And don't be afraid to accept help." Have fun. Be prepared.

Someone closed with the frog analogy. When your lily pad starts sinking, you jump to another one.

Great session.

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