A Gilda's club program enlisits the wisdom and experience of survivors.
For a few years, special education teacher Jamie Antonacchio attended a weekly wellness group at Gilda’s Club Westchester, New York. She recently switched to a monthly post-treatment networking group and attends a weekly yoga session at Gilda’s.
I’m a member of a great club. The problem is you have to have cancer to get in.
The perspective of survivors forms the “p” part of the program. “Survivors have a unique way of looking at the world, a depth that the experience has given you,” says Bull. Ph&d is a vehicle for shaping and sharing that perspective.
Helen Spence, a computer consultant and member of Gilda’s Club North Texas in Dallas, joined a ph&d group after ending treatment for breast cancer.
“A couple of my doctors said that, as people finish treatment, many have this post-traumatic stress reaction,” Spence says. “Everyone here understands the same set of fears, and there is a lot of value to that.” Family and friends can tire of talking about cancer, she adds.
“They didn’t want you to have cancer in the first place, and ‘now you’re done’ and ‘let’s move on.’ But that isn’t reality for the person who has it.”
The ph&d program accommodates changing needs, says Mirchelle Louis, LMSW, program director at the North Texas club. “Many people get a year or so out of treatment and need to change completely. Maybe they are re-entering the workplace, or getting back into the swing of things some other way. Fear of recurrence is the kind of thing you hear discussed in the post-treatment groups. They can talk through these things.”
Because the Gilda’s Club philosophy is to provide support for everyone touched by cancer, ph&d programs include family and friends. Betty Huisman lost her husband to lung cancer and her father to pancreatic cancer in 2004. She joined a family support group at Gilda’s Club Quad Cities in Iowa. “I step in the door at Gilda’s and just feel comfort,” she says. “I know there are people there who will be supportive of what I’m dealing with.”
Westchester ph&d participant Nancy DiCampli, who became a Gilda’s Club member after completing treatment for breast cancer in March, benefits from the perspective part of ph&d in a monthly networking group. She also attends weekly arts groups, whose members sell what they make at local fairs, donating the money back to Gilda’s Club. That is the “h” in ph&d.
“There are so many people who lived or are living with cancer who have a desire to give back, and the ‘h’ piece of the program gives them that opportunity,” says Bull. “Survivors say that over and over again.”
Many post-treatment members volunteer at the club, says Amy Mlodzianowski, LMSW, program director for Gilda’s Club Westchester. Some speak at new member meetings about their experience living with cancer and what Gilda’s Club has meant to them. Volunteers also help with special events, facilitate workshops or talk about the club in the community.
Huisman continues to attend the ph&d family support group for herself, but also sees it as an opportunity to help other members. “I want to give back to a place that really made my life easier,” she says.
The ph&d philosophy includes the larger community as well. “It isn’t just for people to give back at the club by volunteering and mentoring,” says Joyce Bichler, ACSW, senior vice president of program, research and education for Gilda’s Club Worldwide, “but to help people give back and volunteer at other organizations in the community.”
Some clubs arrange for members to visit oncology units. Louis encourages Dallas-area members to volunteer at health fairs. “I think the giving back is something where members can be hugely valuable,” she says. “They can talk about the whole cancer experience as well as what they received at Gilda’s.”
The “d” of ph&d was “a no-brainer,” says Bull. “Because it’s clear, if you are living with cancer, there is ample opportunity for discovery of deeper meaning and purposefulness, of understanding living and dying, and being there for other people.” Exploring that perspective leads to discovery of opportunities to learn, grow, define relationships, experience closure and more.
“There is something to be discovered in that process of becoming an expert,” says Mlodzianowski. “People often say that they are going through a journey, or whatever word they use to describe it. When you first come to the club, you are at one point, and six months down the line you are at a completely different point, and that whole process is a discovery.”
Gilda’s Club recognizes that different people need different things, says Dallas’ Louis. “Networking or support groups are not for everyone. There are other opportunities for expression, or to try new things. When you come in this club, you see people living their lives really fully. You hear a lot of laughter, see a lot of activity. As stressful and serious as a cancer diagnosis can be, that is remarkable.”
Ph&d and the larger Gilda’s program give people an opportunity to focus on and structure their approach to living with cancer. “We call it a customized membership plan,” says Bull, “which is a dull name for something really exciting. Someone can look at all the things offered and find what they need [in order] to learn how to live with their particular situation. And when I say live, that is very emphatically and with a fullness of depth and meaning.”
Since the first clubhouse opened in New York City in 1995, Gilda’s Club has served the newly diagnosed up to one year after treatment ends, but ph&d allows people to come in as issues emerge, no matter where they are in their cancer experience, even years after treatment, says Bichler, a survivor of clear cell adenocarcinoma. “It’s not the same for everyone who walks in the door. We are truly for anybody touched by cancer. Gilda’s Club provides cancer support for the whole family, the whole time.”
“I could go to yoga in my neighborhood,” says Antonacchio, a breast cancer survivor, who lives about a half-hour away. “But I like going to Gilda’s because we all have something in common.”
The networking group and yoga are both part of “ph&d,” which stands for “perspective, helping hands, and discovery.” It’s one of a number of programs offered at all 22 Gilda’s Clubs across the U.S. and in Canada and is designed for the time when treatment has ended.
Gilda’s Club, a cancer support community named for comedian Gilda Radner, offers networking groups, classes and speakers free of charge for people with cancer and their family and friends. Recognizing that cancer is a lifelong experience, club co-founder Joanna Bull anticipated that the organization would eventually have programs for survivors, and once the basic programs were established, it was a matter of deciding which elements would work for survivors and what needed to be different to meet their unique needs.
“What emerged was ph&d, which started as a bit of a joke,” says Bull, a stage 0 leukemia survivor. “The sense was of graduating and having a PhD in living with cancer. We consider all those who have learned to live with cancer to be experts. You’ve learned a lot from your experience; you have insights and accumulated wisdom valuable to yourself as well as others.”