A safe place to share: Breast Cancer Support Group
"I've been cut, poisoned, and burnt," says Shirley, an Island breast cancer survivor, referring to her surgery, chemotherapy, and radiation therapy. It is this type of "gallows humor" that is part of what helps the five regular members of the Breast Cancer Support Group deal with what they're going through.
Shirley, Rosie, Kathy, Lori and other members of the group (they request anonymity), meet monthly at the Vineyard Haven Library. They use humor, advice, sharing, and empathy to help each other through the seemingly endless process of dealing with breast cancer.
Wednesday night. The library is closed to the public. Couches and chairs are arranged in a semi-circle, and the meetings begin with the women asking each other how they are doing. It seems to take off from there, about an hour and a half of informal exchanges, women talking one at a time about feelings, personal stories, things that affect their lives as they deal with cancer - whatever they want to discuss.
The mood changes with the needs of the group. There is no official facilitator and there seems to be an almost intuitive feeling among them that allows those who have the need to receive the group's support. Some women choose to remain silent, but everyone remains focused and present.
One of the women is traveling to Boston for treatment. Everyone hugs her at the end of the meeting. They all want the best for her. Kathy gives her some hints about how to minimize the difficulty she might have with the trip home: "Make sure that you ask for intravenous anti-nausea medication after chemotherapy."
According to the National Cancer Institute (NCI), the incidence of breast cancer in the United States is increasing. Nearly 13 percent of American women born in 2009 will be diagnosed with breast cancer at some point in their lives.
While some women struggle with their insurance providers to obtain payments for testing and other services, those with less substantial coverage find themselves in a very difficult financial plight. All of the women in the group agree that fear of death becomes the primary concern and an undercurrent day to day.
But still, they laugh and cry. Sometimes they show each other their incisions. They make jokes about "chemo brain," the absentmindedness and loss of focus that are side effects of the chemicals that are pumped into their bodies in the hope of shrinking or killing the cancer. They share the painful comments made by unthinking acquaintances, then receive affirmation and reassurance from their fellow group members, which can include their husbands and partners.
Shirley remembers the phone call when she got the diagnosis. She was at work. She told one of her coworkers and quickly left the building.
Rosie says, "I got the call right after my sister was diagnosed with another type of cancer, when I was taking care of my mother who was dying."
Treatment or surgery often begins within a few weeks. They may be under intense pressure to make quick decisions while they are still reeling from shock of the diagnosis.
Group members recommend bringing a tape recorder, family member, or friend to doctor's appointments to keep a record of what is said. According to Kathy, "It's unlikely that you will absorb or remember the information you hear." Several women say that they couldn't take in anything after hearing the word cancer.
The women have a resource book with information about the progress of new cancer treatments. They try to make sure that everyone has the most current information possible.
Treatment options vary based on the type and stage of the cancer. Regardless of the type of treatment or therapies, it is a difficult time. "It was when I lost my hair that I knew I had absolutely no control in the situation," Shirley says. Most group members say that losing their hair was as hard as or harder than losing a breast.
The benefits of the support group are great. The advice, the things some doctors don't think to tell you, is critical to the participants. The group offers free wigs, caps, and scarves to women who have lost their hair, as well as help with transportation costs for treatment. Periodically, they host events for women with breast cancer such as a recent presentation by a physical therapist specializing in oncology, or the makeover and styling by Maggie of Maggie's Salon in Vineyard Haven.
Island support groups
Breast Cancer Support Meeting: Wednesday evenings. Next meeting: Wednesday, Oct. 28, 5:30 pm, Vineyard Haven Public Library. Everyone welcome.
Martha's Vineyard Cancer Support Group: Every Wednesday, 12 pm, M.V. Hebrew Center, Vineyard Haven.
October is the 25th National Breast Cancer Awareness Month. Early detection and treatment are important in surviving breast cancer. Know the signs. Get regular annual examinations. Do self-examinations monthly.
Mary Quinn is a freelance writer living in Oak Bluffs.