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 Susan Nessim-Keeney, founder and president of Cancervive, was diagnosed with a soft tissue sarcoma in her thigh during her first year of college. Susan returned to school following her treatment with a slight limp, a good prognosis, and the determination to put her cancer behind her and move on with her life.
Relationships change...
Instead, she found that old friends and new acquaintances alike treated her with an aloofness and deference that surprised her.
When she fell in love for the first time and accepted a proposal of marriage, the young man's parents were less than enthusiastic. They assumed that as a former cancer patient she was "living with a time bomb," as his mother so inelegantly expressed it. Unable or unwilling to stand up to his parents' objections, she broke off their engagement.
Facing workplace discrimination...
Once again, Susan carried on. She took her first job with a large cosmetics firm and used the communications and marketing skills she had honed in college to good advantage. Soon she was offered a promotion and the opportunity to compete for a large sales territory. When her "friend" was offered the position before Susan had even been formally interviewed for the post, she discovered that her coworker had revealed her status as a cancer survivor and had suggested that "Susan might not be up to traveling."
Insurance hurdles...
Susan began another job but encountered a new hurdle: now that she was over twenty-one and no longer a student or a dependent of her father's, she could no longer be covered by his health insurance. With the blot of cancer on her medical records, no insurer would take her on. Susan had now encountered social, employment, and insurance problems that seemed insurmountable.
Long-term effects of treatment...
The final straw was the ordeal she shared with her closest friend, Lisa, a young woman who was suffering from the after-effects of radiation treatment for an ovarian germ cell tumor. Susan had severe lymphedema in her leg. Lisa and Susan returned to their doctors to see if they could find help in ameliorating the effects of their cancer treatment. The response was "be grateful you are alive." No one could offer any concrete suggestions, and there simply wasn't a body of medical literature on treating ailments caused by cancer treatment.
Earlier detection and improved treatments have led to a growing population of cancer survivors. When Susan Nessim was treated for rhabdomyosarcoma in the mid-1970s, however, treatments were less advanced and the mere fact of survival was cause for great celebration. "We were trophies," says Susan, "and no one wanted to hear that we had problems."
Reaching out...
Susan had tried to join several cancer support groups over the years but invariably found that they were designed for those who were undergoing treatment and often were facing terminal illness. She felt that to express her concerns and frustrations as a long-term survivor was uncomfortable in such a setting.
Founding Cancervive
Susan and Lisa put their heads together one weekend, determined to start a support system for their peers. Lisa scrawled the word "cancervive" on a yellow pad, and Susan knew their idea would become a reality. Lisa died shortly thereafter, and Susan became more determined than ever to fill the gap in the support system for survivors who had to cope with depression, infertility, intimacy issues, job and insurance problems, and the side effects of cancer treatment.
With a small amount of seed money, she was able to hire two social workers and begin her first official chapter of Cancervive in 1985.
Finding funding for her cause was another obstacle. Paradoxically, her greatest difficulties arose from other cancer organizations: they were not interested in hearing that survivors still had issues that needed time, money and attention. Securing funding for a non-profit organization is difficult under the best of circumstances, and Susan's cause was a hard sell. How was she to make the case for survivorship?
Getting the word out...
In 1991, she wrote a book that identified the needs of the growing survivor population, Cancervive: The Challenge of Life After Cancer. Through a corporate grant her book was made available to patients and providers across the United States.
Susan hit the lecture circuit and discovered that Cancervive needed to address the concerns of all those who are touched by the disease: siblings, parents, school classmates, health professionals, and the larger society. A body of work has emerged, including award-winning documentaries, books, and innovative psycho-social programs.
Susan's experiences have taught her to be cautiously optimistic. She and Cancervive have come a long way, but she knows there is still much to be done. As she so poignantly states in the conclusion to her first book, cancer survivors have "something special to offer the world-an alertness to life's nuances, a keener insight into others, a resiliency and strength that comes from having stared down death and faced up to the battle."
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