Midwest Cancer Patients Dial Up a Sympathetic Ear

When John Lyon gives advice to people who call the cancer hot line, he knows what he’s talking about.

The 30-year-old Kansas City man was diagnosed with an inoperable brain tumor two years ago.

“I normally talk to callers about different brain tumors,” he said. “Even though mine is kind of a rare type, I’m very familiar with the other types. I can relate to the treatments and the symptoms.”

Lyon is a volunteer at the Bloch Cancer Hot Line, founded in 1982 by Richard Bloch, the co-founder of the tax preparation firm H&R; Block who was diagnosed with lung cancer in 1978. The hot line encourages the attitude Bloch used to beat the disease--cancer isn’t always a killer.

“Cancer is not synonymous with death,” said Lois Allen, a co-director of the hot line. “We don’t offer medical advice; we offer hope.”

Staff members match the caller to one of dozens of volunteers, Allen said.

“We first match the type of cancer, then the sex, then the age, then the type of treatment,” she said. “Ideally, we like to find a volunteer as close as possible to the caller.”

Nationally, the American Cancer Society offers a similar program, called Cancer Mount, said Arlene Robinovitch, director of patient services for the society’s national headquarters in Atlanta. But the Cancer Mount program uses visits instead of telephone calls.

“It’s a one-to-one support program with a limited number of visits, usually about six, although that varies,” Robinovitch said.

Officials of both services agree cancer patients need to talk with someone who has been through a similar experience.

“Empathy plays a big part in it; it gives strong validity to what you say,” Lyon said. “When you say you’re in pain, it’s a real relative term for someone who cuts their finger compared to someone who is going through chemotherapy.”

One concern for people newly diagnosed is “being saturated with so much information,” he said. “You almost have to learn a second language,” to understand the medical terms.

Patients also must learn to communicate with sometimes brusque doctors. “You need to ask the doctor to slow down, and when you do, the teamwork will get better and they will work together better,” Lyon said.

The threat of death is often the most difficult.

“That’s the strongest thing. You still have the ‘Am I going to die or am I going to live?’ question, and you have trouble dealing with people around you because they don’t know how to deal with you,” he said.

Financial worries usually don’t begin until after huge medical bills start rolling in, Lyon said.

“That happens later on and they will call here looking for assistance, but usually the immediacy of life or death is what’s on their minds,” he said.

Callers also like the anonymity of the hot line.

“A lot of time they call on the premise of asking questions they should ask their doctor, but they ask us because we don’t know who they are and they can remain anonymous,” Lyon said. “But we pick up on that and you ask them if they have talked to the doctor about it.”

The hot line, which operates under the oversight of the R.A. Bloch Cancer Foundation Inc., has logged nearly 40,000 calls since it began in 1982, Allen said. The number is 816-WE BUILD, and is primarily for use in the Midwest.