Kathy has been living with metastatic breast cancer since 1999, presently shows “no evidence of disease” and knows first-hand the experience of “Living With Uncertainty” – the name of a peer support group she facilitates for SHARE. “I was a participant in a support group for women with metastatic disease for about 5 years,” she explains, “and it was the one place where I could talk to people who truly understood what I was going through because they had been through the experience. All sorts of women from every profession and walk of life were in the group -this disease knows no boundaries. They knew exactly what it was like to face the unknown and I learned so much from these women. You’re getting the emotional truth in a group like this, and that is a great healing force.”
Peer support is the central operating principle of SHARE, and is the heart of its success. From the Hotline for the newly-diagnosed to the one developed to address the unique concerns and needs of metastatic women, to information about resources, reports about research and clinical trials, and legal rights, the organization is a living demonstration of the power of social networks. At some workshops following a SHARE-sponsored conference Kathy helped organize at NYU, family members – mostly men – recognized the benefits of such networks to their own psychological and emotional well-being. Her husband Jerry and his friend Tony Romeo now run a support group for men whose wives are living with breast cancer.
“There are so many issues and questions this diagnosis brings up,” Kathy states, “but through these groups women can explore their options, get energy and direction to advocate for themselves, and learn about how others faced with the same or similar dilemmas chose to deal with them. Issues of hair loss, the way this disease affects relationships, your job, your identity – every aspect of life is affected.” Through her ongoing involvement with SHARE, Kathy is one of many talented, committed women knitting a social net, one life to another, ready to support and sustain the women who reach out for the help they need.
This has particular resonance to Kathy and her peers living with metastatic disease, who recognize that their reality represents treatments that did not take, a failure of the medical system, or loss of hope to women battling earlier stages of the disease. “Breast cancer is often in the media, but to the careful observer, media coverage typically emphasizes potential research breakthroughs, early detection and upbeat stories of survival,” write researchers Musa Mayer, M.S.. and Susan Grober, PhD. “After a decade and a half of effective breast cancer advocacy, many organizations dedicated to this cause are making significant contributions to research, support and public awareness. Yet, surrounded by throngs of survivors in pink ribbons, women with advanced breast cancer often feel invisible.”
Through SHARE’s structure and mission, Kathy asserts, “we are not the forgotten women anymore.”
A Second Helping of Life will once again be held at Chelsea Piers on Monday September 20, 2010.
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