Inspiring special bonds
The GI support group, which includes 10-15 attendees at each session, has two major benefits: It focuses on patients with a particular and often serious type of cancer, and it allows family members to join.
"When you're dealing with an unusual cancer, you feel very alone," says Doug Wong, 55, a computer software engineer who has cancer of the bile duct. "You want to know how others manage it, and what to expect for the future." He and his wife, Betty Lee, who carefully researched support opportunities and tried general cancer support groups, say they prefer the focus of the GI group because their challenges differ from those of patients with other cancers.
"When you're dealing with an unusual type of cancer, you feel very alone. You want to know how others manage it, and what to expect for the future."
— Doug Wong
GI cancers affect the organs and structures in the gastrointestinal tract, including the stomach, esophagus, colon, liver, and pancreas. Lurking deep inside the body, these solid tumors may go unnoticed until they spread to other parts of the body, and some have a grim prognosis.
The seriousness of their disease is one reason the GI group members form strong bonds. Death is the invisible elephant in the room, usually unnamed but often referenced. This past summer, when two members of the group passed away, others attended the memorial services and were clearly disturbed by these losses. "We saw how our situations can take a sudden turn," recalls Nancy Kinchla, a member who has cancer of the appendix.
"We are very upfront about our future," she says, describing the group as bittersweet. "We wonder, 'Should I buy a bathing suit in March? Will I be alive next summer?' We know our time is limited, and some of us plan our lives in two-week increments." Kinchla, 58, director of Telecommunications at Harvard University and mother of four young adults, sees herself as a practical person, and has her affairs in order.
In addition to the group's GI focus, the presence of husbands, wives, partners, or other loved ones adds another dimension to the conversations. Wong and Lee, a close couple, are constant companions. Kinchla, who is divorced, is sometimes accompanied by her children. "The group gives family members an invitation to say things to each other they might not have said on their own, such as, 'I've never felt closer to you,'" MacDonald points out.
Although he leads the discussion into deeper waters of life beyond cancer, when the session ends and he leaves the room, participants bob back up to the surface, comparing clinical trials or trading tips for enduring chemotherapy. For example, Kinchla advised Wong to bring gloves to his infusion sessions to reduce the painful tingling in his hands afterwards.
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