Friends and family are essential support for victims of cancer


January 18, 1994|By Dr. Genevieve Matanoski | Dr. Genevieve Matanoski,Contributing Writer

Last week, I talked with a woman whose daughter had been diagnosed as having cancer. "I'm having such a hard time talking to Susan," the mother told me. "Everything I say seems to upset her more and I don't know how to be supportive. I want to help her through this and instead I seem to be a burden to her. What can I do?"

When someone we love is diagnosed as having cancer, how do they cope and how do we cope?

The patient's family is the first line of support for her and will play a very important role.

But relatives and friends must make a special effort to understand the emotions and fears that cancer patients feel.

According to Tom Large, who directs the program at the Wellness Community in Baltimore, learning to give the patient what she needs is an important part of that support.

Q: What is most women's response to the diagnosis of cancer?

A: Few women are prepared for a diagnosis of cancer, no matter how aware and knowledgeable they are, and the first reaction is usually shock and enormous anxiety. Often, they don't hear the rest of the conversation that follows the diagnosis.

As the reality grows and treatment decisions are struggled with, anger, grief and a sense of vulnerability set in. One cancer survivor describes it as "a sense of being forever changed and losing some fundamental trust in life."

Q: How do women learn to cope with the emotional aspects of cancer diagnosis and treatment?

A: There is no right or wrong way to cope with the diagnosis of cancer. Most of us depend on the methods of coping we've used in the past to help us through this difficult time.

Some women want to relinquish all control of their treatment and leave it to the "experts." Others want to research their diagnosis and learn as much as possible to be part of the decision process.

Those who work with cancer patients every day at the Wellness Community feel that the process of being informed and participating in treatment decisions helps women regain a sense of control and empowerment.

Sustaining close relationships seems to be another key ingredient. A newly diagnosed woman may have trouble knowing where to turn. Often the best person to talk to is a cancer survivor -- a person who can convey a deeper sense of understanding to the frightened patient.

Sharing with others can reduce anxiety -- there is nothing like knowing that someone else has felt exactly what you've been feeling. This does not in any way diminish the importance of the family structure, which will serve as a core support system since it is made up of people who have known the patient for her whole life. But a person who has been through the same experience will have additional beneficial insights.

Besides gathering information and finding people with whom to share feelings openly, another common coping strategy is to keep life as normal as possible.

This is one reason that loved ones should encourage the person's desire to stick to old routines, go to work whenever possible, see a movie or have lunch with friends.

Q: How can friends and family help?

A: A good coping strategy is to be as honest as possible with friends and family. The emotional and psychological effort needed to keep up a false front can be exhausting to everyone.

It is natural for the patient and close family and friends to find themselves protecting each other. The more honest the patient can be about what she needs and the more open family and friends can be about asking what will be most helpful, the better the support system can be.

If asked, a close family member or friend can sometimes help as a recorder or a third ear at medical appointments.

Allow the cancer patient emotional space to feel whatever she is feeling. Different people have different coping strategies. Anticipate fluctuations in her attitudes and feelings -- she may go from hope to joy to despair, and the process of emotional recovery may go on well after treatment is over. Often family and friends also need support to help cope.

Q: How can a physician help the patient and the family?

A: All of us hope to find a skilled, experienced physician who can relate to us in a gentle, understanding way, while providing the best medical care possible.

Many physicians do have a good bedside manner and go beyond the expected in their care for the whole cancer patient. But we must remember that physicians are not trained psychotherapists, nor do they necessarily have time to spend on the many emotional issues of dealing with cancer.

Their skills are technical and that is usually what we are looking for when we select a doctor. Remember that communication is a two-way street and that your physician may not open up unless you make it clear what you want and need.

Q: What community and national resources are available for support in coping with the diagnosis and treatment of cancer?

A: For information or booklets about cancer and current treatments, call the National Cancer Institute at 1-800-4-CANCER or the American Cancer Society at 1-800-227-2345.

The Wellness Community has 12 facilities around the country that provide a unique homelike atmosphere where support and information are offered free of charge. The national number is (310) 453-2300. In Baltimore, the number is (410) 832-2719.

Hospital social work departments are often another good source of information and support.

Dr. Genevieve Matanoski is a physician and epidemiologist at the Johns Hopkins School of Hygiene and Public Health. She is a founding director of the school's Institute for Women's Health Research and Policy.

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