Another patient likens the cancer experience to that of Vietnam veterans in the '60s: Suddenly the world is divided into "us" and "others."
These are just two examples of the isolation cancer patients often feel, says Susan Goedde, a social worker at the UW Medical Center Cancer Center. Isolation that a support group can substantially reduce.
But don't misunderstand her. Support groups are not "pity parties." They're gatherings of people who "know what it feels like" in a way that even the most supportive family and friends can't experience. They're places where, unlike the rest of society, having cancer is "normal." They're opportunities to share "black humor," or express frustration at watching those silky-haired models in shampoo commercials when you've lost every strand to chemotherapy.
They're also a place to exchange personal experiences and information that physicians may overlook. "One woman was surprised to find that it hurt when her hair fell out," Goedde notes. Unprepared for the discomfort, she thought her sore-scalp experience was unique to her.
Goedde leads three support groups at the UWMC: one for people with brain tumors, another for prostate cancer patients and a third for young adults with cancer. Professionally led groups have an advantage over self-help groups, she believes, because they free the patient from any sense of responsibility. Professional leaders (she co-leads with a nurse) can also help members understand that each case is different. What's happening to the person sitting next to you isn't necessarily going to happen to you.
Even when the prognosis is good, cancer almost inevitably brings feelings of loss. "Many people have not been sick a day in their lives and someone says they have cancer," Goedde observes. Suddenly they've lost their previous self. They may feel betrayed by their body. Tried and true problem-solving techniques, such as putting extra energy into working on the problem, may fail. Normal routine is often lost to the demands of treatment. Work falls victim to fatigue. Roles within the family change. Habits of stress management -- running or other vigorous exercise -- may be out of reach.
"Cancer isn't something that happens once" and can be dealt with, she adds. "In cancer, thing after thing happens. You can't plan. You have to adapt, adapt, adapt, change, change, change."
The healthiest strategy is to acknowledge feelings of loss and make them part of your life, Goedde stresses. "Wallow" in them, "hold them in your hand," she recommends. Get the tears flowing even if it takes a sad movie to turn on the faucet. Experience the feelings, use them up until their power is diminished.
"What isn't so good is going numb after diagnosis, putting your life on hold for awhile, thinking it will go away," she explains, and the "positive-thinking philosophy can backfire." In both cases, patients risk losing the opportunity for growth that working through losses and adapting to cancer can bring. And don't worry about being a "bad patient" by showing the way you feel. Forget feeling required to "put on a happy face."
Above all, don't equate reaching out to a support group with personal weakness. "If your roof is leaking or plumbing falls apart you go someplace where someone has experience with the problem," she notes. When the problem is living with cancer, some of that experience can be found in the right support group.
For information on cancer support groups, Goedde suggests calling the American Cancer Society (1-800-227-2345) or Cancer Lifeline (1-800-255-5505). For information on the groups she leads, which are not restricted to UWMC patients, call (206) 598-4108 and leave a message on her voice mail. -- Jean Reichenbach
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