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I feel like this whole thing is completely out of my control.
• When people who, until recently, were complete strangers start talking about life-or-death decisions while you’re nearly undressed, it’s natural to feel as if you are no longer in control. Some people react by trying to take charge of everything. “That’s a way of coping with anxiety—the mistaken belief that if you can control all aspects of it you can control the outcome,” says Marie Tobin, an associate professor of psychiatry at the University of Chicago Medical Center. “It’s a delicate balance between participating in one’s care and believing you have all the answers.”
Gauthier, who specializes in the psychology of cancer patients, says, “Think about, What are the areas where I do have control? Can I accept that I do not have control over the cancer cells?” If you feel well informed and collaborate with your doctors in making decisions, you can usually overcome the out-of-control feeling. Tobin stresses the importance of “having a therapeutic alliance with [your] doctor, feeling like [your] treatment is a cooperative effort.”
My whole life seems so different now. How can I tell if the way I’m reacting to this crisis is healthy?
• “It is normal to experience distress, disorientation, anxiety, fear,” Tobin says. The trouble occurs when those feelings become incapacitating and lead to “functional impairment.” If your negative feelings are having an effect on your daily life—if, say, you don’t want to get out of bed, you’re avoiding friends or family, or you’re feeling overwhelmed by things that normally wouldn’t bother you—you should ask at the hospital about psychological help. You may want to join a support group or consult a mental-health professional.
So my family and I should watch for warning signs that I’m not coping well?
• Yes, but with debilitating stress or anxiety, as with most medical problems, heading it off at the pass is a better strategy. Mental-health problems are real, physical side effects of disease, and they respond to preventive techniques. Just as you would take an antinausea medication to offset the effect of some chemotherapy drugs, you should work to reduce your disease-related stress during your treatment.
Support groups can be a tremendous help—talking with other patients reduces the sense of loneliness many patients feel. Peers also have in-the-trenches advice that doctors and nurses can’t supply.
Ask about on-site support groups at the hospital where you are being treated. Also, many organizations dedicated to specific diseases offer advice and support groups. Some of their Web sites provide forums that can connect you with other people who are going through something similar. “There are online discussions through the disease-specific organizations that some people find very beneficial. They’re educational as well as supportive,” says Marilyn Lees-Reinish, the manager of the department of social work for Loyola University Medical Center.
Here are some cancer-specific support organizations around the Chicago area: Gilda’s Club, in Chicago (gildasclubchicago.org); Jennifer S. Fallick Cancer Support Center, in Homewood and Mokena (cancersupportcenter.org); Wellness House, in Hinsdale (wellnesshouse.org); Cancer Wellness Center, in Northbrook (cancerwellness.org); Wellness Place, in Palatine (wellnessplace.org); and LivingWell Cancer Resource Center, in Geneva (livingwellcrc.org).
Should I update my will? And when should I assign power of attorney to someone?
• “You want to sit on this end and see what happens when they don’t [update their wills]?” Lee-Reinish says. In other words, yes, do it. It’s not morbid; it’s sensible. Think of it like doing your taxes. “The best gift we can give our families is to let them know what our wishes are,” Lee-Reinish says.
As for power of attorney, at some point in this process—especially if you are having surgery—you may be handed a form to express your wishes if you become unable to communicate with your doctors. “Every patient is given a power of attorney and living will form when admitted to [Rush],” says Erin Schneider, the American Cancer Society patient navigator at Rush.
People avoid filling this out because it makes them anxious or they imagine it will jinx them. Try to overcome those feelings. There is no downside to making your wishes known. “That should be an automatic thing that we all have, no matter what our age,” Lee-Reinish says.
illustrations: Harry Campbell