Online cancer club meets in person Patients, friends finally get to see people who have helped them cope

June 09, 1996|By Jonathan Bor | Jonathan Bor,SUN STAFF

They knew many of the details before they met: who was struggling and who was thriving, who had lost hair and who had grown it back, who got her brother's marrow and who lacked a donor.

In an age when many people say they feel socially isolated, computers may be one of the few forces bringing folks together. Just ask the members of HemOnc and BMT-Talk -- electronic gathering places for those whose lives have been touched by cancer.

This weekend, 50 people from across the continent who knew each other through online conversations that range from the intimate to the edifying had their first face-to-face meeting at Baltimore's downtown Days Inn.

They included cancer patients in various stages of sickness and recovery, as well as their spouses, children and parents.

Many were flabbergasted to see online friends who looked nothing like the mental pictures they had formed, but most seemed to have nailed the personalities some time ago.

"John always has good, settled-down advice," said Judith Miller, 40, a leukemia survivor who teaches history at Emory University in Atlanta. The subject was John Nesci, 59, an electrical engineer from Freehold, N.J., who, like her, had received a bone marrow transplant.

"Yes, his sincerity radiates through the computer," said Andrea Winkler of Los Angeles. "You can almost imagine that he's saying things right over your shoulder."

With the explosive growth of the Internet, people are turning increasingly to online news groups for support and information about myriad diseases and disabilities. A short list would include multiple sclerosis, Lou Gehrig's disease, Tourette's syndrome, dwarfism, muscular dystrophy, depression, chronic fatigue, emphysema, lupus and paralysis.

They are social forums for those who might otherwise feel separated by conditions that friends and family members can only try to understand. And they are gold mines of practical advice.

On HemOnc, a news group concerned with blood-related (hematologic) cancers, a person recently shared a tip for dealing with the pain and itching that can erupt after a bone marrow transplant. Apply pressure to the afflicted area, he said.

"It was unbelievable," he wrote. "I would hurt/itch like crazy when I was standing, sitting or lying on my back. However, if I positioned myself on the couch on my left side in such a way that the side of my chest was pushing against the couch's armrest -- the pain went away."

Just as the members have developed distinct personalities, so have the news groups themselves.

HemOnc, established last year, is "a little more straight-laced, uptight and medically oriented," Miller said. BMT-Talk, started in 1994 for people facing bone marrow transplants, is "a lot looser, oriented more toward the individual."

"The humor and the jokes fly," she said.

There is sadness, too. A Seattle man recently wrote a daily diary of his ordeal with a bone marrow transplant, commenting from his hospital bed as he endured the side effects of chemotherapy and radiation.

One man posted frequent updates on his wife's decline in the 140 days after her transplant.

"It was a big uphill battle," Nesci said. "She passed away."

The groups have a combined membership of 1,300 people. Most "lurk," meaning they read without registering their own thoughts, while the minority actively participates.

Although online forums generally confine their relationships to the Internet, the cancer groups are not the first to meet in nTC person. For instance, Wired magazine recently wrote about a similar gathering of people caring for Alzheimer's patients.

"I guess people feel so much like a community that eventually they want to get together and celebrate," said Steve Steinberg, a writer for Wired. "It does sort of help strengthen the community so people can get to know each other on more than an electronic level."

The cancer groups seem to have built considerable strength long before anybody had spoken to anyone else.

"It's been my lifeline for sorting out my life after the bone marrow transplant," Miller said. "It's full of people who are really living and coping. Someone will post something like, 'I'm so upset. I feel like a snake. I can't be nice to everybody.' People will write back, 'Yeah. It's the six-month point, that's how it is.' "

In a wide-ranging discussion yesterday, people speaking in regional accents ranging from New England to Baltimore to upper Midwest examined the difficulty of getting past their cancers even when symptoms are at bay.

"I had a fantasy that if I survive, everything will be perfect," said Pat Haber, 51, a therapist from Ann Arbor, Mich. "But survival doesn't ensure happiness. Christmas is not fun for me anymore. It's different. You can't tell most people you're kind of down. They say, 'You can't be down. You've survived.' "

Laurel Simmons, founder of BMT-Talk, knew exactly what she meant. "I wanted to get to the point where it was like it never happened. But it does fade. It gets to the point where you spend much more time thinking about things that have nothing to do with cancer."

Pub Date: 6/09/96

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