Taking Time: Support for People with Cancer

Selves and Self-Images

• Cancer treatment can extend over weeks or months; side effects may come and go.
• Side effects can make you feel rotten, even make you think the cancer has returned.
• The known is less frightening than the unknown. Learn about your cancer, its treatment, and how to treat possible side effects.
• Fears and anxieties caused by cancer can affect a sexual relationship. Remember: Cancer is not catching. And cancer or other chronic illnesses are rarely the cause for infidelity in a good relationship.
• Treatment might make you feel uncomfortable about your body and sexually unattractive. Open discussion of these feelings with your mate is very important.
• Intangible personal qualities make up a great part of your attraction for your mate. These have not changed with treatment.
• Spouses sometimes hesitate to initiate physical contact. Support, love, and affection do include hugs and caresses. These may lead the partner with cancer to feel more comfortable about sexual intimacy.
• Physical exercise improves body image and feelings of well-being.
• Taking on new hobbies and learning new skills can bolster your good feelings about yourself.
• Reconstructive surgery and well-made prostheses help some people overcome physical disabilities and emotional distress.
• If you cannot seem to regain good feelings about yourself, seek professional counseling or therapy.
• If your relationship is endangered by the stress of cancer, get professional help. You need each other at this time.

]]> When Treatment Brings You Down

Cancer treatment is nearly always aggressive. Surgery can be disfiguring. Radiation or drug treatment may be prescribed following surgery to ensure that no hidden, microscopic cancer cells are left to travel to other parts of the body. Treatment can extend over weeks or months, and its side effects can include nausea, hair loss, fatigue, cramps, skin burns or weight changes. It is not unusual for the treatment to cause more illness or discomfort than the initial disease. The cancer patient has to contend with emotional reactions to such treatment and side effects.

It is difficult to convince yourself that you are recovering when you feel absolutely rotten. It is hard to be optimistic when you feel worse now than at the time of diagnosis. The schedule of radiation or drug treatments may seem endless. You are convinced that there never was a day when you didn't feel awful; there never will be one when you will feel normal- if only you could remember how normal feels.

Some even interpret these physical reactions to treatment as signs that the cancer is returning. This is rarely the case, although it may be necessary to remind yourself of this fact again and again. Feel comfortable in sharing such anxieties with your doctor.

A return to the hospital setting for outpatient treatment causes anxiety for some. Researchers studied a group of women undergoing radiation therapy following breast cancer surgery. They found that the women felt better psychologically immediately after leaving the hospital following surgery than they did once followup treatment began. It can be unsettling, indeed, to return again and again to the hospital or physician's office, places which may have come to represent the most frightening aspects of cancer.

You can try to plan special activities for the days when you feel well and brace yourself for the days when you feel awful. It's helpful to others and easier for you if you inform people that treatment may cause shifts in moods. You can let them know matter-of-factly that you will have up days and down days.

The known is usually easier to cope with than the unknown. It is important to be familiar with each treatment's side effects and its causes. Not only does knowledge reduce fear, but some side effects can be eliminated (or at least eased) through treatment changes, medication, or changes in diet. There is no need to be more uncomfortable than is absolutely necessary. Written materials with information on what to expect in the way of side effects from treatment usually are available from your physician or treatment center. However, the best way to obtain accurate information about your own situation is through a frank and thorough discussion with the nurse or physician administering treatment.

This brings us back to the problem of busy, unresponsive health professionals. If your physician has been less than helpful, try one of the information resources or special support groups referred to in the previous chapter. Ask one more nurse, one more oncology resident. As one of our "expert patients" wrote, "Look for assistance wherever you have to when you need it. It's a mistake to give up when rebuffed or disregarded by any one individual. There is always a source of comfort somewhere. One has only to look for it." Comfort and, we might add, information.

What About Sex?

The problems and emotional stresses of cancer might follow you into the bedroom. Some couples arrange the financial matters and handle the day-to day tasks, only to find that sexual problems threaten their relationship. There are a variety of reasons for such problems.

A few people still have the mistaken belief that cancer is contagious. One man complained, "My wife won't kiss me anymore. She thinks cancer is catching." Fact: Cancer is not catching. If your mate believes it is, call your physician. You may feel embarrassed discussing sex, but this is too important a problem to let modesty stand in the way of a solution.

Infidelity, or more likely fear of it, can present a problem. Exploring these fears with your mate is probably the best way to deal with them. If you admit that you are plagued by uncertainty and insecurity, you probably will receive the needed support and affection and can lay your doubts to rest.

Some cancer patients cite disfiguring treatment as a cause of sexual problems. You need to deal not only with discomfort or disability but also with what this change in your body has done to your feelings about yourself. As awkward as it may seem, you need to find ways to communicate those feelings to your partner. An inability to express them may complicate an already difficult period.

Body Images

Each of us develops over the years an image in our mind about our body. We may not be completely satisfied with that image, but usually we are comfortable with it when with someone we love. This helps us feel sexually attractive to our mate. Disfigurement, hair loss, nausea, radiation burns-even fatigue-can destroy your good feelings about your physical appeal. If you now believe you are unattractive, you might anticipate rejection and avoid physical contact with your partner. It is well to remember that in most cases your partner is more concerned about your well-being than his or her own. The overriding reactions probably begin with, "Will treatment succeed?" "How can I show my love and support?" . . . and, only finally, "What about sex?"

In reality, your partner may be afraid to appear overeager and therefore insensitive. So it may be up to you to show a desire for physical contact and to let it be known whether you are interested in sexual intercourse as well as other expressions of affection- hugging, caressing and kissing.

It might help to keep in mind that it's not only your body that makes you "sexy." There are also intangible qualities that your mate finds attractive. A sense of humor, intellect, a certain sweetness or great common sense, special talents, loving devotion-each of us knows what makes us special; and it's more than anatomy. If you feel you have lost those special qualities along with a breast or leg or prostate gland, counseling may help you change that perspective.

Rebuilding Mind and Body

Time, along with demonstrations of love, understanding and affection by your partner and family should help you work through feelings about your changed body image. In addition, some find that physical activities-sports, dancing classes, exercise, or judo-improve their sense of being in touch with their bodies. A ballet teacher who has had a mastectomy is teaching other women the feeling of grace and balance that comes from dance.

"After I took up yoga," another woman exclaimed with some surprise, "I achieved a sense of wholeness about my body-even without one breast-that I had never had before."

People who take on a challenging activity that moves them beyond a disability-skiing for amputees for example-find it can provide a whole new sense of self worth. "Can you believe, I have more pride in this ragged body than I did when it was all there?" asked a tennis ace, who took up the game after his colostomy.

Poetry, music, painting, furniture building, sewing, and reading provide creative growth of which you can be equally proud. If anything needs strengthening it is our personal self-image. Acquiring new interests and talents can help develop that strength.

Physical Restoration

Reconstructive surgery or cosmetic and functional prostheses (artificial devices) help some people with cancer overcome both physical disabilities and emotional distress from disfiguring surgery. A small but growing body of skilled craftsmen build prostheses for people who have had radical oral and facial surgery. These lifelike pieces enable people to go out in public again with some degree of emotional comfort. For some, they are the difference between silence and the ability to speak. For others, they put eating solid food back into the realm of possibility.

Women who have had a mastectomy can wear a breast form (prosthesis) or have breast reconstruction.

Most insurance companies cover restorative or cosmetic surgery and various prosthetic devices as a necessary part of the rehabilitation process. This is good news, for it is further recognition that cancer patients are entitled to as close to normal a life as possible. No longer are they asked to be grateful and satisfied just to be alive.

What Spouses Can Do

Disfigurement or debilitation caused by treatment can affect reactions to a partner with cancer. You expect to see beyond these physical changes to the person within, the one who more than ever needs your love and physical reassurance of that love. Nonetheless, you might find yourself responding negatively, unable to provide that support. You might feel awkward about physical contact because you think your partner is not ready for it and that you will be judged insensitive.

It helps to remember that touching, holding, hugging, and caressing are ways to express the acceptance and caring that is so important to the person with cancer. More than words, they show love and express your belief in the patient's continued desirability as a physical being.

Admittedly it is a difficult time. Beset by treatment reactions, anxiety, self-doubt, or a mistaken notion of what your feelings are, your spouse might withdraw from you. Together, try to prevent a cycle of misunderstanding from developing. As the well partner, try to feel sure in your love and reach out gently and repeatedly, if necessary, to provide the reassurance that cancer cannot destroy love.

If barriers begin to grow, perhaps a professional counselor can help you work out your reactions toward the patient, the disease or your feelings that too much of the responsibility has been placed upon your shoulders. Make sure you are doing whatever you can to reestablish bonds of closeness and caring.

Together as a Couple

Essentially, each of us must deal with heartrending problems in ways that are compatible with our relationship. Facing this battle can strengthen everything that is good in it. Sometimes, it shows us how minor are problems once considered so important. However, cancer also can strain a relationship already stressed by other serious problems.

Sometimes the sexual relationship becomes the barometer of a marriage. In a mature relationship, sex is an expression of love, affection, and respect-not the basis for it. As one woman put it, "If a husband and wife had a good relationship before mutilating surgery, there is little basis for new problems. I contend this is an excuse not to have sexual relations or to seek a new, more exciting partner. The real reasons for problems were there before the surgery, just as the cancer was there before the diagnosis."

Most people find ways to face and overcome the stresses cancer places on their relationship. They find strength in each other, and they work together to establish a new and comfortable routine. Sharing their feelings with each other usually has been their first step toward finding effective solutions.

Sometimes a trained counselor can help you understand ways in which you can begin helping each other. Family therapists or licensed clinical social workers sometimes should be included in the personal cancer treatment team. Support groups of other couples dealing with cancer can be helpful, even in dealing with intimate problems. The usual personal barriers often fall when you know you have sympathetic and experienced confidants who may be able to offer practical (and tested) guidance. Those who have found ways to maintain or recapture closeness and intimacy throughout this ordeal might be able to help others in a group setting.