Pat’s Place: Joining A Support Group Saved My Life — So Why Aren't More Patients Involved?
I just returned from speaking to a blood cancer support group in Atlanta. The patients, survivors, and caregivers in attendance were amazing--kind, caring, and self aware. Why were they there? The food? The companionship? To learn more about their cancer and hear me speak? Yes! They came for all those reasons and more.
The bottom line: Everyone felt better after they left (including me) than they did before the meeting started. I left tonight's meeting with a bounce in my step.
It had been a long day of cleaning the house and car; taking care of the yard, our dog, and cats; a one hour drive to the Tampa airport; boarding a large, packed air bus; and then flying to Atlanta. I unpacked, wrote a post for one of my blogs, then rushed to freshen up in time to make the late afternoon support group meeting.
As soon as the support group members started filing in, none of that mattered. We laughed, shared experiences, and became friends. Cancer patients share a common bond--especially those with the same cancer you have. It's a feeling every cancer patient should experience and cultivate. You learn you aren't alone. You learn how to better deal with treatment side effects. If you are newly diagnosed, you may even learn how to smile again!
So why is it so hard to get patients to attend support group meetings? The patients I met tonight were already converted--it was like singing to the choir. They didn't really need to hear my message of hope. No, the hundreds of other patients who are treated at Georgia Cancer Specialists each week needed that. But they weren't there.
Saturday, when I flew to speak to a group in Jackson, Mississippi, it was the same thing--the people who were there had a great afternoon. I did too. But what about the other patients and caregivers?
I understand we all have busy lives--families, friends, kids, and jobs. Add cancer to the mix and it's a wonder any busy cancer patient can function at all. But the sharing among friends at these meetings is so powerful, I could argue attending a support group at least once each month can be just as important as any medical test or treatment.
Since I moved to Florida in December, I miss attending monthly support group meetings back in Minneapolis and Stillwater, Minnesota. I miss my friends and multiple myeloma family. Our meetings weren't all about emotions. I learned more about treatment options in those meetings than I ever have at any conference or seminar.
Invite someone in need to your next meeting. Offer to pick them up and drive them if that's what it takes. Joining a support group saved my life. Doesn't each and every multiple myeloma patient or caregiver deserve the same?
Feel good and keep smiling! Pat
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Hi Pat,
I have been attending my local myeloma support group since diagnose in 2001. It has been my lifeline, a valuable source of information and friendship from fellow myeloma patients and caregivers.
Attendance has fluctuated. There are the regulars then some who come only when there is a good topic being presented. Unfortunately with no cure for myeloma there is a natural attrition.
The meeting facilitator and regulars need to be pro-active with meeting advice and take any opportunity to to sell the group to new myeloma patients and caregivers.
I like "Pat's Place" a good concept from you Pat and Myeloma Beacon.
Sid.
Hi Sid-
Sounds like we agree--attending a multiple myeloma support group can help us in so many ways! It must have helped you! A nine or ten year survivor--impressive! Good luck- Pat
I am new at this.....I was diagnosed in July 2009, had a transplant in Feb. 2010, my question is, how do you feel about using Thalidomide as a maintenance drug. I live in Canada so Revlimid is not offered as maintenance at the moment......I've been on Thalidomide for 6 months now with no side effects but am wanting to come off the drug....any comments on this......
Hi Olga-
Studies show significant benefit using maintenance therapy after a SCT. But--but--but the benefit doesn't seem to be increasing median life expectancies. What does that mean? Simply, maintenance therapy slows return of myeloma in many cases. But in the end, it often doesn't extend a patient's life. Counter intuitive, I know. I'm not a doctor, but I have read and listened to presentations about several reliable studies which found the same result. Thalidomide should be fine--especially if you aren't experiencing any peripheral neuropathy. Are you? Bottom line: You could flip a coin. You could drop drug or continue. Some benefit either way. My advice: Make a decision you and your ONC are comfortable with and don't look back--no regrets! Good luck! Pat