By Barbara Kinas Sperber – Patient
I had always thought that a cancer support group was probably useful for some, but definitely not for me. Since my diagnoses of CLL / SLL about 11 years ago, my sole interest has been in getting information, current trends in treatment, potential new drugs, clinical trials, and trial results. To me a support group was the antithesis of my interest. I envisioned sad, wan, worn people sitting around tearfully discussing their problems in great detail and awaiting the emotional comfort of others who understand because they were in the same or worse situations. While I am a great believer in the benefit of emotional support in groups, in my assumed limited view of cancer support groups, I envisioned that for me these groups would just be depressing, rather than provide the assistance, emotional or factual resources, I wanted or needed. So, I avoided them. I spent time (probably too much time) concentrating on various list servers, far too many webinars, reports from various blood cancer gatherings of professionals, and medical articles which often seemed futile as I tried to comprehend the incomprehensible. I also availed myself of a number of organizations related to CLL / SLL. I had no time nor interest in support groups.
While, at one point, I decided to look into these groups more objectively, that slid by as there were none in my area. And then came the pandemic and Zoom. I not only had time, I was looking for contacts. Isolation is a lonely venture even with a loving husband and Zooming with children, grandchildren and friends. So, I thought I would venture into one virtual meeting of the CLL Society Boston Support Group, just to see if it aligned with my sad view of support groups.
Well, I was wrong, very wrong. The Boston Support Group, part of the support group network of CLL Society, is the opposite of anything I had assumed and expected. It is certainly not sad folks complaining. It is a source and fountain of information. I was, from the beginning, quite impressed with how much I was learning. At the monthly meetings, I am sometimes taking more notes than I have taken at webinars. It is amazing what you learn from non-experts who have had a variety of experiences with CLL / SLL. The group is expertly guided by Larry Marion and Judy Cody who have been co-facilitating since its inception 5 years ago. About 35 people attend each meeting. The discussions are fascinating. Before each meeting, Judy sends out CLL news, links to interesting articles and upcoming webinars, members’ questions, and an agenda. Larry, with wit and a bit of humor, leads the discussions which focus on topics of concern or interest to the participants. The agenda is not rigid. In the process of sharing experiences and knowledge, Larry has said there is validation and empowerment. There is indeed, and that is the support of the support group. It is very different to listen to a webinar about side effect of a treatment compared to hearing it from a person who is undergoing that treatment. On occasion, there have been medical speakers and even then, the support group environment is advantageous as the experts field questions from just a couple of dozen of people rather the unseen webinar masses. There is also an opportunity for follow-up discussion which can be quite informative and important.
So, what kind of questions or issues arise? Any question that is important to you can be raised and probably will be raised. Issues discussed included recommendations of doctors, dealing with CLL and comorbidities (does everyone hate this word as much as I do?) and CLL, advised timing of booster shots and Evusheld and flu shots, side effects of treatments, etc., etc. The discussions relate to whatever is of concern to you.
Support group? Yah, definitely for me. I would suggest for you too.
Barbara Kinas Sperber is a retired Assistant Attorney General for the State of Connecticut. Since her retirement, she is taking piano lessons, storytelling, and completely enjoying her amazing, brilliant, funny grandkids. She was diagnosed with CLL 12 years ago and is on watch and wait.