Maps Cancer Support Group: One Member’s Testimonial
By Elsie H. Robertson, Ed.D.
Presented to the Monadnock United Way Recognition Gathering
March 20, 2014
I am honored to be here this afternoon representing the Keene Maps Cancer Support Group, funded by the United Way. The group, open to all, meets every Wednesday in the library of the Kingsbury Cancer Center from 1 to 2:30, and is facilitated by Ann Lammers, a professional on the Maps staff. Our numbers range on any given Wednesday from a full room of 12 – 14, to days when there are perhaps 4 or 5 people there. It is very difficult to quantify our attendance. Doctor’s appointments, chemotherapy appointments, the overwhelming fatigue, a common cold – all affect our ability to attend. When I cannot make a meeting, something is missing in my week.
The support group has been in existence for more than 15 years: the late Mary Alther was the first facilitator. The support group is just that; it’s not a therapy group, although life’s problems and woes do not disappear during diagnosis, treatment, or follow up care – and in fact, may even increase. Ann is skilled at helping us navigate the sometimes tricky and narrow path between the world of support and the world of therapy.
There is no charge to be part of the support group. It, and a second one in Peterborough, as well as a group for partners/caregivers and a group for those with chronic severe pain, are covered by the United Way Allocation. I think I can safely say that this group is a life saver for those with families who are on fixed incomes, who have had to cut back on work, and who have limited or no insurance. This year for the first time we don’t have to worry about being denied coverage because of our pre-existing conditions. Insurance coverage ranks only a little behind the big life-death existential discussions in the group.
I have found this short presentation difficult to compose, in part because Cancer is such an intensely personal experience, is one in which we need to face head on the possibility of dying, and which even today, while no longer hidden or talked about in euphemisms, is still a disease which is difficult or impossible for many people to talk about openly and honestly. And because we don’t always know what to say or do, or how to say or do it, we either say nothing or we drift away.
Cancer is a disease with which, I suspect, everyone in this room has had personal experience – whether family, friend, acquaintance, colleague, whether senior, in the midst of life, or young, whether a life dare-devil, or one who followed all the rules – we all know someone who has cancer. I thought I was empathetic, understanding. I was, but until I became a member of the club no one wants to join, I really wasn’t.
One of the things that happens with cancer is that suddenly one is living in a world of duality, as well as cognitive and affective dissonance. On the one hand, as Lawrence Kohlberg said, I am but a speck in the universe, and at the same time I am the most important being in the universe. I think this happens with any life threatening event, but the word cancer, with all of its implications, makes it even more real. Any one of us who has a life threatening or lifelong condition lives with this duality and dissonance all the time.
My journey to the support group took several years and, to be very honest, I wasn’t supposed to have that many years. I didn’t want to waste what time I might have sitting around with a “group” being self-indulgent. However, the assault to my system from surgery, chemo, and radiation triggered post-polio syndrome which put me in a tailspin. One day I had a long conversation with Barbara Jones (a member of the group) who gently but with firm direction told me to come to the group.
I listened to her, and today, 10 years from my diagnosis, I am still here, and I still go to group. I go because it keeps me grounded. I go because the group held me and supported me when I needed it, and it is now my turn to be part of the holding and supporting.
The disbelief, the shock, the fear, anxiety, the waiting until a diagnosis is made, the not knowing, the variety of traditional and alternative modes of treatment, the waiting for reports, the frightening knowledge that yes indeed I can die and maybe will, the sadness of friends not talking, not coming around, of ignoring the illness, of telling me how good I look when I feel really awful, the full anxiety closet before any medical appointment; 10years after the day the feelings are still there.
What do we do in this support group? We share books we have found, articles, research. We share strategies to cope with appetite loss, fatigue, neuropathy, insurance, and the very real chemo brain. We may give one another rides to appointments or to the group. We may go to appointments with one another. We help one another develop strategies for self-advocating in a complex system. We laugh and cry; laughing really does help. We support one another as we make life style changes, or choose not to do that.
We talk about final directives, about ceremonies and services, about how hard it is to even begin to talk about that end of our lives issues. We talk about how to prepare our children and our grandchildren. We talk about our bucket lists. We communicate on a level far deeper than usual social chit chat.
This support group is not dedicated to one particular type of cancer. We are a smorgasbord. For me, this is really valuable. It’s too easy to get caught up in one’s specific condition and ignore the larger cancer community; again to know we are part of a larger community. It doesn’t matter what kind of cancer we have. Every single one of us has had difficulties with wanting more information, having too much information, with needing to hear back from whomever, with insurance companies. The state of not knowing and of having absolutely no control is made more bearable when we can share it within the group.
We all need and want to be in the company of others who are like ourselves from time to time. We all need and want to hear the perspective of others. We all need and want to listen to one another. Horace Mann, the first president of Antioch College, in a famous graduation speech, said, “Be ashamed to die until you have won some victory for humanity.” Ann Parham Brown, a member of our group who did on Saturday, had lived in the company of cancer for more than 10 years. Her presence at our meetings was a victory for humanity and her gift to us. Ann’s journey is our journey. I am profoundly grateful to MAPS and the United Way for making our journeys possible.