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.
The World Outside
- Some friends will deal well with your illness and provide gratifying support.
- Some will be unable to cope with the possibility of death and will disappear from your life.
- Most will want to help but may be uncomfortable and unsure of how to go about it. Help your friends support you:
- Ask yourself, “Have friends deserted me or have I withdrawn from them?”
- Telephone those who don’t call you.
- Ask for simple assistance-to run an errand, prepare a meal, or visit. These small acts bring friends back into contact and help them feel useful and needed.
- If you are alone, ask your physician, social worker or pastor to “match” you with another patient. Someone else needs friendships, too.
- Groups of other cancer patients can offer new friendships, understanding, support, and companionship.
- When you return to work, coworkers, like others, may shun you, support you or wait for your cues on how to respond.
- There are laws to protect you against job discrimination.
Anyone who has been affected intimately by cancer knows that it can change the pattern of our relationships outside the family as well as those within. Friends react as they do to other difficult situations. Some handle it well; others are unable to maintain any association at all. Casual acquaintances, and even strangers, can cause unintended pain by asking thoughtless questions about visible scars, artificial devices, or other noticeable changes in appearance.
One or two people within your circle may be gratifying in their devotion and in the sensitivity they show toward your needs. One woman said her mother-in law found one or two close friends with whom she felt truly relaxed. They were not startled when she laughed nor ill at ease when she cried. With others she maintained an outward calm.
“I have three really good friends with whom I can talk about my cancer,” explained another. “I have talked about dying with my sister, and she does understand a lot more than I thought a person without cancer could.”
When Friends Don’t Call
Lost friendships are one of the real heartbreaks people with cancer face. Friends do not call for a variety of reasons. They might not know how to respond to a change in your appearance. They might be avoiding you in order to avoid facing the possibility of your death and the eventuality of their own. Their absence does not necessarily mean they no longer care about you. Still, it is little comfort to know that “out there” you have friends if they have so little confidence in their worth as companions that they would rather say nothing than risk saying the wrong thing.
“I see that my friends don’t know how to talk to me, and they shy away from me,” wrote one person with cancer. “Most people are very ignorant on the subject of cancer.”
If you believe discomfort rather than fear is keeping a particular friend from visiting, you might try a phone call to dissolve the barrier. Yet you cannot combat all the reasons why people avoid you; some still believe that cancer is contagious. Certainly, you cannot call them up and say, “Hey, get out of the Dark Ages. It’s not catching!”
Knowing that others are ignorant does little to lessen the hurt and frustration of being needlessly isolated. You only can change the attitudes of others if you are among them. Examine carefully whether friends shun you or whether you have withdrawn from your usual social contacts to protect your own feelings. You can neither enlighten nor draw comfort from an empty room. If possible, the best place to be is out in the world with other people.
Easing the Way for Others
Most people fall into a middle group, somewhere between the staunch friends and the “avoiders.” They are groping for an approach to cancer with which they can be comfortable. These people may say things, which sound inane, insincere, or hurtful. You have to keep reminding yourself that they are trying their best. If you are open about cancer, they may relax, too.
A perceptive high school student explained, “I guess what I’m trying to say boils down to this. One of these days? people may not feel so uneasy around a disabled person. I’m not bitter with people; I’m really quite at ease with them and strive to make them feel at ease with me. They feel afraid of me, and consequently trip over their tongues. I have learned a lot by living in a disabled person’s world and am quite willing to share it. One of these days, I may be given the chance.”
A woman who had had extensive surgery for oral cancer explained how she tried to lessen the discomfort of others without causing discomfort for herself. She focused on her disability rather than its cause.
“I am determined to put people at ease, so when I speak on the telephone, or to someone for the first time, I immediately say, ‘I have a speech defect, so please don’t hesitate to tell me if you don’t understand me.’ I also carry a pencil and paper and offer to write what can’t be understood. I find it much more frustrating to have people try to save my feelings by pretending to understand me when they don’t.”
A man we know startled his fishing buddies, who were paying a group visit to his hospital room. He positively threw open the door to honest communication when he boomed out, “You know, I’ve learned one hell of a lot about cancer since I became a member of the club.” We can’t all be that direct. He had been a straightforward man all his life. But he had let his friends know that he preferred talking about his cancer to pussyfooting around it.
Helping Friends Help
Many times friends are waiting for some clue as to what behavior is appropriate. They might not be sure you want company. They might call to “see how things are going,” then add as they hang up the phone, “Let me know if there’s anything I can do to help.”
These friends are asking for more than a job to do. They are asking for direction, giving you clues that they will not desert you if only they have some guidance on how to proceed. The next time friends or relatives offer assistance; try to look at the offer in that light. If you can think of one specific errand they can run, one chore they can take off your hands, you have done them and yourself a favor.
“Mother hasn’t been out since Dad became ill. I think a Saturday afternoon at the shopping center would do wonders for her.”
“We’ll be at the hospital all day Thursday for chemotherapy. It would be such a help to me if you could whip up a casserole for our dinner.”
“I don’t feel much like talking these days, but if you’d bring your needlepoint and come sit with me, it would be pleasant to have your company.”
Most people are grateful if there is something concrete they can do to show their continuing friendship. If such tasks bring them into your home, it gives them a chance to see that you are still living and functioning- not a funeral waiting to happen. Their next visit might be easier, and then they may be able to stop by without a “reason.”
Choosing to help friends in this way is no easy undertaking. When you feel stretched to breaking just keeping your own life going, it is difficult to extend your energies further to make others feel at ease. It can be a new and difficult experience for some, this reaching out, but the rewards can be exhilarating. We all feel better giving than receiving, so it might be easier if you think of your requests for assistance as letting others feel useful, rather than as petitions for help.
Fighting Loneliness
Regardless of what you do, your friends might desert you. Circumstances might have left you alone before cancer struck. This is a special, awful loneliness for any human being to endure. There are no easy answers, no pat solutions. The mutual support of other people with cancer might provide some solace and comfort. There probably are others in your community who need your companionship as much as you need theirs. Being housebound need not deprive you of visits from others who would like to share some quiet moments or some deeply felt sorrow with someone who will understand. A physician, social worker, visiting nurse, or member of the clergy should be able to help you contact another cancer patient or shut-in that could use company.
On the Job
For many of us, work forms a cornerstone of life. In addition to income, it provides satisfaction and a chance to interact with peers. Returning to work as soon as you are physically able is one way to return stability to your life. If treatment has made it impossible to return to a former line of work, investigate the availability of rehabilitation and retraining programs within the community to prepare you for another occupation.
You might find on returning to your job that relationships with coworkers have changed. One person with cancer found his associates had requested separate restroom facilities for him-that old “cancer is catching” myth again!
“If we pretend Jane never had cancer, it will go away” is the approach of many coworkers toward cancer patients when they return to work. This can be demoralizing. Some have found that if you look well and are able to function, people tend to underestimate the seriousness of your condition. They might mumble something like, “Glad you’re back; you look great,” and never ask how you really feel. In turn, you might find you resent their good health and nonchalance as you wonder what happened to the companionship you had looked forward to in returning to work.
The best you can do is assume that your coworkers, like so many others, are unsure of what to say or are trying to protect your feelings-or their own.
Others returning to work might be perfectly delighted with a rather cavalier attitude toward their condition. “Glad you’re back,” might be all you want to hear before plunging into your old routine. If you are being coddled at home, returning to a situation where others do not think of you as sick might be the greatest therapy yet devised.
Some people believe it eases relationships with coworkers if they are quite open about their condition. One young woman described in a speech to other cancer patients why she decided to tell about the cancer.
“Since my bones don’t cooperate, it’s hard for me to appear graceful, but I have a choice in this situation,” she said. “I can either move as though nothing is bothering me (while gritting my teeth and giving my contact lenses a salty bath), or I can move awkwardly in reasonable comfort. I think this is one of the reasons I don’t mind people knowing I have multiple myeloma. I keep having this flash of having died and having someone who just found out about the myeloma saying, ‘So that’s why she kept falling over.”‘
If cancer treatment meant leaving your old job, discrimination may be a hurdle to returning to work. Even the person who is completely recovered may find it difficult to obtain employment. The rationale, one hears from indirect sources, is that people who have had cancer take too many sick days, are a poor insurance risk or will make coworkers uncomfortable.
How can you cope? You might begin with this information: Under Federal law (the Federal Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990), most employers cannot discriminate against handicapped workers, including people with cancer. These laws apply to Federal employers, employers that receive Federal funds, and private companies with 25 or more employees (15 or more employees after mid-1994). The laws protect cancer patients in hiring practices, promotions, transfers, and layoffs. Every state also forbids discrimination based on handicap; however, only some of these state laws protect all people with cancer.
If you apply for a job with a government agency or a firm with government contracts and believe you did not get the job because of your cancer. you can file a complaint under Section 504 of the Federal Rehabilitation Act of 1973. You should write directly to the Federal agency involved. If you do not know the name of the agency that provides Federal funds to the employer, contact the Civil Rights Division of the U.S. Department of Justice, Washington, D.C., (202) 724-2235.
If you believe you were discriminated against by a private employer because of your cancer, you should file your complaint with the closest regional office of the Equal Employment Opportunities Commission. To obtain the location of your regional EEOC office and find out exactly what to do, call the EEOC Public Information System at (800 USA-EEOC).
To find out more about your legal rights, check with:
- Your local American Cancer Society. Offices have state-specific information about cancer and employment discrimination.
- Your social worker. He or she may know about laws in your state and can also tell you which state agency is in charge of protecting employment rights.
- Your state’s Department of Labor or Office of Civil Rights.
- The National Coalition for Cancer Survivorship. This organization offers information and limited attorney referrals.
- Regional or national offices of the American Civil Liberties Union.
- Your representative or senator. Congressional and senate offices have information about Federal and state laws. If you’re not sure who represents your district, call your local library or local chapter of the League of Women Voters.
Living Each Day
- Each person must work through, in his or her own way, feelings of possible death, fear, and isolation. Returning to normal routines as much as possible often helps.
- Give the pleasures and responsibilities of each day the attention they deserve.
- Responsible pursuits keep life meaningful; recreation keeps it zesty. Fill your life with both.
- Remember the difference between “doing” and “overdoing.” Rest is important to both physical and emotional strength.
- It’s harder to bolster one’s will to live if you are alone. Yet many have acted as their own cheering squad and have found ways to lead meaningful lives.
- Family members must not make an invalid of a person with cancer who is fully capable of physical activity and responsible participation in the family.
- Family members should not equate physical incapability with mental failing. It is especially important that an ill patient feel a necessary part of the family.
- Families must guard against “rehearsing” how they will act if the patient dies by excluding him or her from family affairs now.
Whether the outlook for recovery is good or poor, the days go by, one at a time, and patient and family must learn to live each one. It’s not always easy. On learning the diagnosis, some decide that death is inevitable, and there is nothing to do but give up and wait. They are not the first to feel that way.
Orville Kelly, a newspaperman, described his initial battle with the specter of death. “I began to isolate myself from the rest of the world. I spent much time in bed, even though I was physically able to walk and drive. I thought about my own impending funeral and it made me very sad.”
These feelings continued from his first hospitalization through the first outpatient chemotherapy treatment. On the way home from that treatment, he was haunted by memories of the happy past, when “everything was all right.” Then it occurred to Kelly, “I wasn’t dead yet. I was able to drive my automobile. Why couldn’t I return home to barbecue ribs?”
He did, that very night. He began to talk to his wife and children about his fears and anxieties. And he became so frustrated at the feelings he had kept locked up inside himself that he wrote the newspaper article that led to the founding of Make Today Count, the mutual help organization for cancer patients and their families.
Each person must work through individual feelings of possible death, fear and isolation in his or her own good time. It is hard to overcome these feelings if they are never confronted head on, but it is an ongoing struggle. One day brings feelings of confidence, the next day despair. Many people find it helps considerably if they strive to return, both as individuals and as a family, to their normal lives.
Each day brings pleasures and responsibilities totally outside the realm of cancer. We should try to give each the attention it deserves. These are the threads of the fabric that enfolds our lives. They give it color and meaning.
The days can be more valuable if you can learn to enjoy common moments as well as memorable occasions. This is true whether you have weeks or years left. It is true, in fact, whether you have a life threatening disease or not. Physical well being is closely tied to emotional well-being. The time you take out from attending to cancer strengthens you for the time you must devote to it.
Staying Involved
When you have cancer, you need responsibilities, diversions, outings, and companionship just as before. As long as you are able, you should go to work, take the kids to the zoo, play cards with friends, go on a trip. Try to remember that responsible pursuits keep life meaningful, and recreation keeps it zesty. You need activities that give you a sense of purpose and those that provide enjoyment.
Some people find cancer is a spur to do the fun, adventurous, or zany things they’ve always wanted to do but have put off as being not quite responsible. That’s a great idea. It helps ward off two overreactions – one is giving up, and the other is trying to cram a life’s worth of responsible accomplishment into a very short time.
A young woman with cancer put it this way: “Too often we patients fill up our lives with meaningful activities and neglect the frivolous outlets that keep us sane. And we tend to forget how important our sense of humor is.” She quotes Betty Rollin, author of First You Cry, as saying that cancer won’t bestow a sense of humor on someone who doesn’t have it, but a sense of humor can sure get you through the experience.
There is no scientific or medical proof for it, but cancer patients who have “places to go and things to do” seem to live longer-or at least they feel that life still stretches before them. “I’m in my own real estate business, started a year ago, and serve as an officer in eight civic organizations,” a woman wrote. “Life has never been fuller, and for a 47-year-old grandmother, I’ve never felt stronger or better.” Seven years earlier, her family had been told she had six months to live.
Others have combined humor with too much interest in life to let go of it. “Mine has been a long battle, but I’m not ready to call it quits yet,” one such person declared. “I’m just too busy to schedule my demise, or maybe I just haven’t the good sense to lie down and let it happen!” Many have found they cannot retire from living. It’s much like employment-every day you show up, you may as well give it your best!
“Doing,” it might be pointed out, is not the same as overdoing. Try to recognize your limitations as well as your capabilities. Fatigue can bring on crushing despair, and many people have found that as simple a safeguard as adequate rest fends off depression. Exhaustion weakens our physical and emotional defenses.
Pain also can make a mockery of attempts to function normally. Physicians have learned much about controlling pain, so all pain, especially if it is prolonged, should be discussed with your physician.
“Putting one’s house in order” is a desire that strikes many who learn they have cancer. This is not the same as giving up. In fact, everyone needs to review insurance policies, update wills, and clean out the closets and drawers from time to time-and that gives you something constructive to do.
Reprinted with permissions from the National Cancer Institute
