Talking It Out : Cancer Patients Find That a Support Group Helps Them Deal With Illness, Frustration

The leader of the Wellness Community’s support group for young adults with cancer offered to cancel the December meeting, but the participants wouldn’t hear of it.

Sure, there was Christmas shopping to do and holiday parties to attend. True, the organization’s meeting place in Westlake Village was under reconstruction and barely usable. But to the cancer patients and their loved ones, the support group is so important that skipping a month is a scary thought.

“I don’t know where we’d be without this place,” said Barrie Rubino, a Newbury Park woman whose husband, Richard, was diagnosed with Hodgkin’s disease in November, 1993.

In 1990s Southern California, you can find a support group for just about every vice and affliction imaginable. They have even become the butt of jokes, as comedy writers poke fun at characters on their way to the next meeting of, say, the group for Children of Gambling Overeaters.

Marty Nason, program director of the Wellness Community, said she sees the humor in such portrayals. But she insists that the reason support groups are proliferating is that they work. “We’re meant to live in groups,” she said.

For cancer patients they may offer something more: a better chance to beat the disease. Early scientific studies suggest that support groups and a positive mental attitude may extend life expectancy and enhance the quality of life for cancer patients, Nason said.

The Wellness Community’s Valley/Ventura center has drawn more than 1,000 patients and family members to its free groups since opening in 1991. About a quarter of the participants come from western Ventura County, a quarter from the east, and the other half from the San Fernando Valley.

The December meeting of the young adults group began with small talk over a potluck dinner, but quickly turned serious. Gathered in a circle amid the exposed steel skeleton of a redesigned center that will accommodate even more groups, the participants introduced themselves and their cancers.

Pam Tignac, 24, of Simi Valley, was resolutely optimistic.

“The brain cancer I have is not curable yet, but they’re going to find one,” she said, looking out from under her baseball cap.

Tignac said she is six months pregnant and has a 2-year-old son. She missed the group’s November meeting because of a 10-hour operation, and she smiled as other group members told her they were glad to see her return.

For Kimber Knight, whose boyfriend, Aaron Bell, has a rare soft-tissue sarcoma, it had been “a very stressful week.”

Knight, a manicurist, broke down in tears as she told the group about the strains of taking care of Bell. Sitting by her side, he watched stoically from under the brim of his baseball cap.

Baseball caps were in fashion at the support group. They cover hair loss and the scars.

“If it was just the cancer, I think we could deal with it,” Knight said. “But it’s the insurance, the doctors, the friends and family, trying to figure out where you are going to eat, where you are going to pull over to the side of the road to vomit.”

Knight said Bell had lost 15 pounds in the last week, his body unable to hold food after intense chemotherapy.

After introductions, the group split up to “raise issues.” The discussion sounded like a gripe session:

Friends and relatives either call too often or not enough. Medicine costs too much, and health insurance companies are heartless bureaucracies all too ready to deny life-saving treatment. People who really have no way of knowing tell you, “you’ll be fine.”

But what might seem like self-indulgent whining actually serves the purpose of reassuring other members of the group who are experiencing the same problems.

When Knight mentions a $93,000 bill for one month of Bell’s treatment, Barrie Rubino interjects.

“We’re still getting bills from a year ago,” Rubino said, advising Knight on the fine points of dealing with health insurance companies. “Go to the top, go to the supervisors, yell, scream and cry.”

Rubino’s advice had Knight laughing and leaning on Bell’s shoulder. She wasn’t crying anymore.

While victory over an insurance claims supervisor is an attainable goal, beating cancer itself is a more mysterious and sobering mission.

“The hardest thing is, what if I’m not here in two years?” said Angie Spear, 24, who has breast cancer.

For a minute, no one responded.

“I just take one day at a time,” Bell said, offering a cliche that made other group members groan.

Richard Rubino chimed in that life is transitory even for people without cancer, who could get hit by a car while crossing the street.

Those answers did not satisfy Angie or most of the other participants. But they agreed they found hope and comfort in facing the fear together.

Said Tignac, “It’s a lot helpful.”