One question many people ask after diagnosis is "Should I tell?" Perhaps no. A family member could be too old, too young, or too emotionally fragile to accept the diagnosis, but people are surprisingly resilient. Most find ways to deal with the reality of illness and the possibility of death-even when it involves those they love most. They find the strength to bounce back from situations that seem to cause unbearable grief.

The way in which people differ is in the speed with which they bounce back. The diagnosis of cancer hits most of us with a wave of shock, of fright, of denial. Each person needs a different amount of time to pull himself or herself together and to deal with the reality of cancer. In reading the sections that follow, you should remember that only you really know your emotional timetable. Think about sharing at a time when you are ready to do so.

Should You Tell?

Usually, family and close friends learn sooner or later that you have cancer. Most people with cancer have found the best choice is to share the diagnosis and to give those closest to them the opportunity to offer their support. They have found it easier, in the long run, to confide their fears and hopes rather than trying to hide them. Of course, you must comfortably time your words in telling family and friends that you have cancer.

If you have no family, it is especially true that the road appears less lonely when shared with a few close friends. You might lose one or two. Some people will find it too difficult to talk with you or to be around you, and they will slip away. On the other hand, you may discover hidden strengths and compassion in the least likely of companions.

A woman with cancer wrote, "As for whether or not people should keep their illness a secret, I think they will learn with whom they can talk. Some people make themselves scarce if cancer is mentioned. But, cancer patients soon learn who their trusted friends are."

Another person said, "I don't think a cancer patient should keep it to himself. If it isn't revealed, family and friends are robbed of the opportunity to share the feelings and anxieties that arise from having the disease. At most, life is very short for everyone. Because there are no guarantees, we should make the most of each day."

On a practical level, trying to hide the diagnosis is usually fruitless. As you move from hope to despair and back again, family and close friends will sense something is deeply troubling you, even before they learn the facts. When you feel ready, try to share your news with them.

As you ponder whether you can share the diagnosis of cancer with others, it might help to remember the following. In telling loved ones about your cancer, you give them the opportunity to express their feelings, to voice their fears and hopes and to offer their hand in support. Then, each can give and take strength as they are able.

When Family Must Decide

Sometimes family members are the first to learn the diagnosis. If, as a family member, the decision falls to you, should you tell the patient? Some might think not, but most people with cancer disagree. "I think a cancer patient should be told the truth," one wrote. "Time is so valuable, and there may be things the person would like to accomplish. There are decisions to be made..."

All of us have important life choices to make. People with cancer often find these choices become crystal clear when they feel their life span could be cut short. They might outlive any one of us, but people with cancer have the right to know and decide how they will spend their remaining days. There are exceptions to any generalization, but most people relate that "Mom took the news much better than we thought she would."

A woman who herself has cancer recalled how things have changed since her mother was diagnosed in 1930. "My relatives never told my mother that she had cancer. Of course, then, they didn't have the treatment they have available now. Looking back I realize no one fooled her. In not telling her, though, she was deprived of a very valuable outlet for her emotions."

Family members also bear great emotional burdens during the period of diagnosis. They, too, need the comfort of sharing their feelings. Yet, it is almost impossible to support the rest of the family if you are hiding the diagnosis from the person with cancer. He or she inevitably learns the truth. The consequences can be deep anger, hurt, or bitterness. The patient might believe that no one is being honest about the diagnosis because the cancer is terminal. On the other hand, while you are trying to "spare the patient," the person with cancer might be trying to protect family and friends from learning the truth. Then each ends up suffering alone, with thoughts and feelings locked within.

Somehow Children Know

Even children sense the truth. Some parents who tried to "spare" their children from knowing later voiced regret at not discussing the truth during the course of the disease. Children have amazing capabilities when they understand a situation. However, when their normal world is turned upside down and whispered conversations go on behind closed doors, they often imagine situations that are worse than reality. Young children dwell on "terrible" things they have done or said that place responsibility for the upheaval in the household on themselves. This is especially true if the child is going through a period of testing parental authority or in some other way is in disagreement with family members. Children, especially young ones, tend to view themselves as the center of the universe and see many situations only in direct relationship to themselves.

The children's ages and emotional maturity should suggest what and how much to disclose. It might help to realize that including the children, among those who know, comforts them by confirming their belief that something is amiss within the family.

A parent with cancer might want to tell the children directly. "I've been sick a lot lately, haven't I? I have a disease called cancer. The doctors are doing every thing they can to make me well. I can't spend as much time with you as I wish to; it's going to be hard on all of us, but I still love you very much."

Perhaps this is too painful. A close and loving aunt or uncle or friend might be able to explain things more comfortably. "Your daddy is ill. The doctors are almost sure they can make him well, but sometimes his treatments make him feel sad or grouchy. It's nothing you children have done, but he needs your patience and understanding."

The goal in telling the children that someone in the family has cancer is to give them opportunities to ask questions about the disease and to express their feelings about it. Of course, all of us want to shield our children from pain, but pain they understand is easier for them to cope with than hurts that they imagine. Some adults tell us that they still remember the feelings of rejection they suffered as children of cancer patients. As children they were aware of great disruption within the family, but at the time they were denied knowledge of the cause. They were hurt and confused by what seemed to be lack of attention and unreasonable demands or expectations.

Sharing Mutual Support

We begin to see that the most compelling reason for sharing the diagnosis with adults and children alike is that cancer can be so terribly lonely. No one need try to bear it alone. At times you will feel totally without ally or solace, regardless of supports. There is no need to increase these moments with poses meant to convince others close to you that you do not need their help. At a time when each of us who is trying to cope with cancer is in need of mutual support, we should not shut each other out. Through sharing we can build foundations of mutual understanding to sustain us through the long period ahead. We can share anxiety and sorrow, but we also can share love and joy and express our appreciation for each other in ways we ordinarily might find difficult or embarrassing.

Sharing Feelings

Some in the family are able to absorb the impact of diagnosis sooner than others. This can create clashing needs as some wish to talk and some need to be private and introspective.

Sometimes, the whole family suspects the truth before the diagnosis is made. Someone recognizes the symptoms, or the family doctor seems overly concerned. Nonetheless, hearing those words, tumor...cancer... leukemia, we are stunned as we never may have been in our lives. It is often impossible to take in the diagnosis immediately. We hear it, but somehow we don't believe it. This is normal. People's minds have a wonderful capacity for absorbing information only as they are ready to accept it.

Emotional Timetables

All of us may not operate on the same emotional timetable. One of the family might feel the need to talk about the cancer before the others come to grips with it. Each of us has to decide when we are ready to talk; none should feel forced to do so.

This sometimes creates clashing needs-some need to talk; others need to be private and introspective or even to shut the whole subject out of their minds for a while. The desire to respect privacy may be pitted against an equal need to get the whole thing out in the open.

In some families everyone becomes overly considerate of everyone else's needs for time to adjust. Instead of meeting anyone's needs, everyone avoids one another, building walls just when they ought to be opening doors to communication.

It is important to let the person who has cancer call the signals for when it's time to talk. But, it is always helpful to look for clues to determine when might be a good time to discuss the cancer and how to live with it.

Signs such as apparently idle conversation, more time than usual spent with other family members, or even unusual nervousness might indicate that a person wants to talk but doesn't know where to begin. Yet, facing cancer together makes it easier. It eliminates the need for pretense when there are so many important matters to address. As you talk, you should try to be sensitive to what family members or friends say, how they position their bodies, and whether or not they make eye contact. These clues suggest whether the conversation is serving a purpose or driving someone you care about into hiding.

Some people cannot adjust their feelings and cannot help each other. Not all families can be open and sharing, and during a crisis is a difficult time to adjust family patterns. Nonetheless, the situation may not eliminate the need to air feelings. This is the time to turn to one of several sources outside the family for emotional support.

Consider Your Needs

When cancer is first diagnosed, some patients can absorb only the most basic information, and even that might need to be repeated. That's normal. We each have the right to digest information at our own pace and determine when we are ready for more, and when we are ready to talk about what we know or want to know.

If others in the family want to talk about cancer before you are ready, try to postpone the discussion without rejecting the person. "I appreciate your concern but not yet. I can't talk yet," for example, suggests that the day will come when you will be ready to talk. Taking care of your own needs, which are great, while trying to recognize the fears and anxieties of those you love is not easy.

The period right after diagnosis is often a time of anger, fear, and inner confusion. You might need to sort out conflicting emotions before you can express them. Or, you might find yourself lashing out, wishing to find a target for anger and frustration. Often it is those closest who bear the brunt of these outbursts. You don't want to hurt them, but you may be angry that they will live and you might die. Perhaps you assume that they will understand and endure the rage.

Family members have feelings, too. They may lash back, expressing their own anger and hurt at your outbursts, at the possibility of losing you, at the burden of new responsibilities or at their powerlessness to change the reality of the disease. As you express your own feelings, try to remember that others need the same release.

The Family Adjusts

The period following diagnosis is a difficult time of adjustment for family members. Each has to deal with individual feelings, while trying to be sensitive to those of the person who has cancer. Being part of the family doesn't mean you can make people talk about their feelings before they are ready, but you need outlets, too. There are ways to encourage openness. Be ready to listen when others are ready to talk, and let your continued presence show your support. But remember, the person with cancer gets to set the timetable.

If the decision is to talk, you may find yourself the target for a lot of anger and frustration. It is easier to tell yourself that you are not the cause of this hostility than it is to accept this. You know you should respond with patience and compassion, but sometimes you answer anger with anger. Even these exchanges can have value if everyone learns through them to share feelings.

The opposite of anger may be false cheer. In trying to bolster the person with cancer, you may actually cut off his or her attempts to express feelings. Remember that lifting the spirit doesn't mean hiding from the truth. Sensing despondency, some people rush in with assurances that "everything will be all right." But everything is not "all right." If you insist it is, you deny the reality of the patient's world. In response, he or she may withdraw, feeling deserted and left to face an uncertain world alone. Without meaning to, you've abandoned the one you hoped to help and set up patterns that can be difficult to change just when support is so important. Although the cancer may be controlled, the gulf between you may endure.

It may help the one with cancer to know that you share the same fears and anxieties about the uncertainty of the future. People who honestly share these feelings find they can hold them to the light, better accept that the future may be questionable, and turn more readily to fulfilling the present. This is a very difficult period, but if you can share the difficulties, you will find there are more good days to enjoy together. And you are less likely to be devastated by truly difficult ones.

Finding Hope

There are ways to find hope during periods of despondency or despair. We all need to remember the individuality of each case. We tend to get caught up in statistics and averages, but no two cancers ever behave exactly the same way. Each individual has different genes and an immune system, a distinctive will to live, and an urge to fight. These cannot be measured on charts or graphs. No one can offer any of us "forever," but there are good prognoses; with an increasing number of cancers, the outlook is good for successful treatment. You can look to promising test results and to treatments that previously have been effective in many people. Even if the future is guarded, there may be another remission, good days, comfortable nights, and shared experiences. These are real beyond any statistics. The enjoyment of life's gifts constitutes living, not the number of days we are given in which to enjoy them.

There are safeguards against hopelessness even if there is no real cause for hope. You can still provide reassurance of continuing love and comfort. At times, "I'm here" may be the two most supportive words you can say.

Listening, Sharing, Being Yourself

There are different ways in which you can be important as a family member or friend. You can listen to expressions of feeling or act as a sounding board for a discussion of future plans. You can help focus anger or anxiety by helping to explore some of the specific causes, including drug reactions, the job situation, and finances. This may be what is needed - someone to listen, to react and absorb the patient's outpourings, not necessarily to "do" anything. It is a difficult role, but it can be immensely rewarding.

There is a more passive but equally difficult role. Some cancer patients view theirs as a private battle to be fought alone with only their physicians as allies, and they prefer to fight their emotional battles alone as well. But they need family and friends for silent support, as respite, shelter, or an island of normalcy. It can be draining to provide "safe harbor" from a day in the clinic or nights of sleepless panic. It can be a struggle to be forced to plan an evening out, to ask friends in, or simply to stand by with wordless support. However, there may be times when this is what is needed most.

Many people think they don't know "how to act" around people with cancer. The best you can offer is to be natural, to be yourself. Let your intuition guide you. Do what you comfortably can do; don't try to be someone you are not. This in itself is comforting. Dealing with cancer entails enough mystifying changes without having to adapt to a new you.

Coping Within the Family

Cancer is a blow to every family it touches. How it is handled is determined to a great extent by how the family has functioned as a unit in the past.

Children may need special attention. They need comfort, reassurance, affection, guidance, and discipline at times of disruption in their routine. Although cancer has "come out of the closet," much of what we read in newspapers and magazines is about the disease itself-its probable causes or new methods of treatment. There is little information about how families deal with cancer on a day-to-day basis. This gap reinforces feelings that families coping with cancer are isolated from the rest of the world: that everyone else is managing nicely while you flounder with your feelings, hide from your spouse, and are incapable of talking to the children.

Cancer is a blow to every family it touches. How you handle it is determined to a great extent by how you have functioned as a family in the past. Families who are used to sharing their feelings with each other usually are able to talk about the disease and the changes it brings. Families in which each member solves problems alone or in which one person has played the major role in making decisions might have more difficulty coping.

Not Everyone Can

Problems within the family can be the most difficult to handle simply because you cannot go home to escape them. Some family members may deny the reality of cancer or refuse to discuss it.

It is not uncommon to feel deserted or to feel unable to face cancer openly. "My brother-in-law is suffering from cancer," one man confided. "The entire situation is depressing, and my reaction has been one of running and hiding. I have not visited them for I feel I have nothing to offer."

A woman with cancer found none of her family could help her. "My two wonderful sons tolerated their dad's heart surgeries very well, but now I have cancer, and they don't know how to act. Phone calls and letters expressing sympathy are not what I need. I've tried since last November to express my thoughts to my husband, but he shuts out what I'm saying. I know that he's uncertain about our future, but I can't seem to get through to him; I've learned from other patients that it's a common concern."

In these situations individual counseling or cancer patient groups can provide needed support and reinforcement. Moreover, these resources provide an outlet for the frustrations you are facing within the family.

Changing Roles

Families may have difficulty adjusting to the role changes that are sometimes necessary. One husband found it overwhelming to come home from work, prepare dinner, oversee the children's homework, change bedding and dressings, and still try to provide companionship and emotional support for his children and ill wife.

In addition to roles as wife, mother, and nurse, a woman might have to add a job outside the home for the first time. A spouse who was sharing the load sometimes becomes the sole breadwinner and home maker. The usual head of the household might now be its most dependent member.

These changes can cause great upheavals in the ways members of the family interact. The usual patterns are gone. Parents might look to children for emotional support at a time when the children themselves need it most. Teenagers might have to take over major household responsibilities. Young children can revert to infantile behavior as a way of dealing with the impact of cancer on the family as a unit and on themselves as individuals. The sheer weight of responsibility can become insurmountable, destroying normal family associations, devouring time needed for rest and recreation, and depriving family members of wholesome opportunities for expressing anxiety and resentment.

The Health of the Family

Performing too many roles at once can endanger emotional well-being and the ability to cope. Examining what's important can solve the problem. For example, you can relax housekeeping standards or learn to prepare simpler meals. Perhaps the children can take on a few more household chores than they have been handling.

If a simple solution is not enough, consider getting outside help. Licensed practical nurses can help with the patient; county or private agencies might provide trained homemakers. If outreach is an important part of your church, feel free to ask for help with cooking, shopping, transportation, and other homemaking tasks. One family was adopted by the daughter's scout troop when the girls learned of the extra responsibility she had assumed. Everyone benefited from the relationship.

Let someone who can be objective help you sort out necessary tasks from those that can go undone. The financial cost of professional services needs to be compared with the emotional and physical cost of shouldering the load alone. You also may be able to obtain assistance from hospital, community, or self help groups or from a clergy member. It is important to remember that the family is still a unit. If the family strength is sapped, the patient suffers, too.

The San Diego chapter of Make Today Count, a mutual support group for patients and families, compiled a "Bill of Rights for the Friends and Relatives of Cancer Patients." Several items address the problems of family burdens:

Increased burdens and shifting responsibilities can occur whether the patient in the household is a spouse, a child, or an elderly parent. Each family member must take care to meet his or her own needs and those of the other healthy members of the family as well as those of the patient.

Help for the Children

Children might have difficulty coping with cancer in a parent. Mother or Dad may be gone from the house-in a hospital that may be hundreds of miles from home-or home in bed, in obvious discomfort, and perhaps visibly altered in appearance.

In the face of this upheaval, children often are asked also to behave exceptionally well: to "play quietly," to perform extra tasks or to be understanding of others' moods beyond the maturity of their years. The children may resent lost attention. Some fear the loss of their parent or begin to imagine their own death. Some children, formerly independent, now become anxious about leaving home and parents. Discipline problems can arise if children attempt to command the attention they feel they are missing.

It may help if a favorite relative or family friend can devote extra time and attention to the children, who need comfort and reassurance, affection, guidance, and discipline. Trips to the zoo are important, but so is regular help with homework and someone to attend the basketball awards banquet. If your efforts to provide support and security fail, professional counseling for a child, or child and parent together, may be necessary and should not be overlooked.

When You Need Assistance

When cancer develops, many people need to learn to ask for and accept outside help for the first time. These are good ways to begin:

The stress of handling such responsibilities can be enormous. A new kind of communication and acceptance becomes necessary: asking for and accepting outside help, which is an entirely new role for some. People who were raised to believe that "going it alone" indicated maturity and strength now might have to overcome their distaste for appearing to be in anything less than total control.

Some simply do not know where to turn. You might feel uncomfortable asking for help-even from those agencies that were designed precisely for emergencies such as you now face. So, where do you turn?

The Health Care Team

Physicians or nurses are good sources of answers to medical questions. It's helpful to write down on a sheet of paper all questions you have about cancer, its treatment, any side effects from it, or any limitations treatment may place on your activities. (Incidentally, there may be surprisingly few limitations other than those caused by changes in physical capability.) Other members of your treatment team, such as physical therapists, nutritionists, or radiation therapists, can explain the "whys" of these aspects of your therapy.

Writing questions down makes them easier to remember at the next doctor's appointment. It's also helpful to call the office beforehand to alert the receptionist that you will need extra time for your appointment. This time around you can be better prepared to retain the answers. Some people take notes; others bring a tape recorder, or a clear-thinking friend or relative. The point is to depend on something more reliable than your own memory at a time when emotions are likely to overwhelm intellect.

Asking Important Questions

Fear of being thought ignorant or pushy has kept many people from asking their doctors about a most important topic - the alternative treatments they read about in the tabloids or hear about from friends. You may be urged by well-meaning people to try methods that will "spare you any pain or discomfort." Yet they are never available through your cancer specialist. If you are being pressured to abandon the care you are now getting, but haven't discussed it with your doctor because you think you will insult "establishment medicine," you might try this approach. "I keep hearing about the bubblegum treatment for cancer. Can you tell me why it isn't accepted by most American doctors? Why do some people think it works, and why do you believe it won't?"

What you have asked for is information. You haven't attacked the treatment you are getting now or the professionals who are giving it to you. And if you are comfortable with the answers you get, it will help you respond when you are urged to try these methods.

Too many fail to ask the medical questions most important to their physical and emotional well-being through a fear of "taking up the doctor's valuable time." Some say, "I'm sure he told me all this once before." Of course, you want to be a "good" patient or a "cooperative" family member! But it's also true: It's your body. It's your life. It's also true that a well-informed patient is better able to understand his or her therapy, its possible side effects, or any unusual signs that should be reported to the doctor.

A good approach can be simply to admit that you are asking for a repeat performance. "I'm pretty sure you told me some of this before, but I couldn't remember anything; I was so shocked. Now, I think I'd feel less anxious if we talked about it."

Some are ready to hold this conversation sooner than others. Some ask a few questions at a time, absorbing each piece of information before they are ready to go on. Some never ask directly. (If so, some one in the family should speak with the doctor to learn the extent of disease and the outlook for the future.) But sooner or later, in whatever way you find comfortable, it's important to let the doctor know that you understand you have cancer and want to talk about it.

In an ideal world, physicians all would be patient, understanding and able to sense your every mood. They would know when to bring out all the X-ray films and lab tests and when to draw only the sketchiest picture of your case. They would have unlimited time to wait until you were ready to ask questions, and then they would gently help you to phrase them in just the right way.

As a matter of fact, books for cancer specialists - physicians, nurses, therapists - and courses in the health professional schools are beginning to emphasize the importance of recognizing the feelings of the person with cancer. Nonetheless, each person is different, and no textbook can describe your unique needs.

In the real world physicians admit that they wait for clues from you, the person with cancer. They need to know what the patient wants to know. Physicians are not mind readers. Whether you like it or not, it is usually up to you to take the first steps toward open communication with your doctor.

Changing Doctors

Some physicians never have learned to speak comfortably with patients or families who are facing what might be a life-threatening illness. These physicians may appear to be abrupt, aloof and uncaring, although they are not. Nonetheless, if their discomfort creates a barrier, you might be wise to seek referral to someone else. When fighting cancer you have to work as a team. Lack of trust is fair neither to you nor the doctor. It is fair, however, to let the doctor know you wish to see someone else - even to ask him or her for a referral. The physician probably is as aware as you that a relationship based on trust and open communication has not been established.

It is also appropriate to ask your physician to suggest other doctors if you wish a second opinion on the diagnosis before deciding on treatment.

There still might be a physician here or there who believes that all cancer is fatal and that "nothing can be done." In such a case it is only common sense to ask for referral to a cancer specialist.

Most family physicians practicing now know that nearly half the patients who get cancer today will live out their lives free of further disease, and others can be provided an extended time of reasonable comfort and activity. While continuing as the personal physician, they usually will refer their patients to cancer specialists - surgeons, radiologists, or medical oncologists - for active treatment. (It's something like an orchestra conductor calling on the soloists while keeping the whole orchestra playing together.)

You need to be honest with yourself and recognize the difference between a physician who believes all cancer is fatal and one who believes the outlook for a particular case is not good. Refusing to promise complete cure is not the same as forsaking the patient.

A physician who uses all available methods to treat the disease, to minimize its effects, and to keep you comfortable and functioning as long as possible is doing everything he or she can to care for your physical needs. How frustrating it is, then, when you seek to relieve your emotional aches and pains, to be rebuffed by the same otherwise excellent specialist. As one man put it, "I found it impossible to discuss the nitty-gritty facts with my doctors and the radiation therapist. I felt that if I told the radiologist how fearful I was, I would be considered childish." Nonetheless, a decision to change physicians should be based on reality and not on a quest to find a doctor who will promise a cure and guarantee to relieve all your fears.

Information Resources

It's easier to come to grips with the reality of any crisis if we replace ignorance with information. There is much to learn about each form of cancer, its treatment, the possibility for recovery, and methods of rehabilitation. Well-versed in the facts, you are less likely to fall prey to old wives' tales, to quacks touting worthless "cures," or to depressing stories of what happened to "poor old Harry" when he got cancer. Often, the more you know, the less you have to fear.

Local libraries, local divisions of voluntary agencies such as the American Cancer Society, and major cancer research and treatment institutions are sources of information about cancer and its treatment. Depending on the degree of your desire for information and your ability to understand scientific terms, you can get everything from short, concise pamphlets to scientific papers. It's a good idea to share the fruits of your research with your own doctor. Cancer is a complex set of diseases; the treatment and its side effects may differ slightly for each person.

On a national level, the National Cancer Institute (NCI), which is part of the National Institutes of Health, operates an information office for the public. Its information specialists can answer many general questions about cancer, its diagnosis, and treatment. In addition, the NCI coordinates a network of information offices among the nation's top cancer research and treatment centers, the Cancer Information Service (CIS). CIS counselors can provide the names of facilities that are most appropriate in terms of both geography and specialization. They also have written materials and information about local self-help and service organizations for cancer patients and their families.

The NCI specialists also maintain lists of excellent cancer hospitals outside the CIS network that are conducting federally funded research in new methods of cancer treatment. They can suggest not only institutions but also specialists with whom your own physician might wish to consult. However, information staff members cannot offer medical advice or arrange for referral to a specific physician or institution.

Emotional Assistance

It is said that we cope with cancer much as we cope with other problems that confront us. Many do come to terms with the reality of cancer. After initial treatment, they find somehow they are able to continue their normal working and social relationships. Or, as one psychologist put it, they learn to get up in the morning and pour the coffee, even knowing that they have cancer. They find, sometimes to their amazement, that they can laugh at bad jokes, or become totally absorbed in a good movie, or a hard-fought football game.

At other times, strength deserts them. They feel overwhelmed by this new world of uncertainties. Some lose interest in favorite hobbies or activities, viewing them as painful reminders of what will be lost if treatment is unsuccessful. They want to cope, but they need help, some support systems beyond their own. Where does one look for such support?

At the Hospital

It was not very long ago that emotional assistance for the cancer patient or family was impossible to find. Attention to emotional needs is a relatively recent addition to standard cancer treatment. Growing numbers of hospitals routinely include a mental health professional as a member of the cancer treatment team or offer group counseling programs. This is a hopeful sign; it says, "This diagnosis does not mean imminent death. We have a whole person to treat here, one with a future and a life to live. This person should be able to live as normally as possible. We must provide the emotional tools to get the job done."

Counseling also is now available for health professionals to help them face feelings of frustration and uncertainty in their work. They have recognized the awesome degree of stress that cancer can create in those it touches. You should have no feelings of shame or hesitancy, then, if you feel the need to seek professional help.

Some hospitals consider some form of group counseling as part of the standard treatment-as necessary as an exercise class, for example. Programs are organized in a variety of ways. Many begin within days of surgery. Some groups meet only for the length of the hospital stay; others are long-term to enable members to work through problems in the everyday world. Some are composed of people with the same disease site (breast or colon cancer patients); some by type of treatment (in-hospital surgery or outpatient radiation therapy); and some by patient age. Some are just for patients; others include spouses, family, or other special people.

Groups can incorporate music, poetry, or role playing in attempts to help members explore their feelings. Some are action-oriented with "veteran" patients helping others now facing the same problem. All counseling groups should be run by trained professionals so that the direction of exploration is truly helpful to each participant.

In the Community

If you want to explore your feelings in individual therapy, you will find a growing number of psychologists, psychiatrists, or licensed clinical social workers specializing in counseling people affected by cancer. Many find it helpful to explore feelings - especially those they don't want to accept, such as guilt, resentment, and intense anger - with a nonjudgmental person who, will help them understand these feelings and find ways to channel them constructively.

Often the problem is not an individual one. The family is a unit, and when one member is stricken with cancer all members are affected. Family counseling can help absorb the shock and deal with the stresses of cancer.

It can be difficult for persons with cancer and their family members to discuss their emotions. Cancer patients themselves have tagged the absence of open communication within their families as a major problem. People are particularly hesitant to express negative feelings when no one is "at fault." Yet major shifts in responsibilities such as those cancer brings to a family can cause great resentment by those shouldering (or incapable of shouldering) extra burdens. A loss of accustomed responsibility or authority also can cause resentment mingled with anxiety over a loss of power.

Children, especially, find that their usual roles no longer are defined clearly. Parents may not have the emotional energy to provide the usual support, love, and authority. Teenagers can feel torn between expressing independence and a need to remain close to the sick parent.

These problems become less difficult to face if the family can discuss them. Some can do this without outside help. Those who cannot should feel comfortable in seeking professional assistance.

Your physician, a hospital social worker or hospital psychologist are good sources for referrals to psychologists, psychiatrists, or other mental health professionals trained to counsel individuals and families affected by cancer. Many county health departments include psychological services, and neighborhood or community mental health clinics are becoming common in increasing numbers of cities. Community service organizations such as the United Way usually support mental health facilities. County government listings in the telephone book may include an "Information and Referral" listing, one more resource for counseling services.

Helping Each Other

There are numerous self-help groups organized by people like you and designed to help you overcome both the practical problems of cancer and the feelings these changes cause. Some groups are local chapters of national organizations; others are strictly "grass roots." Some are only for patients; others include family members.

These organizations shun a "pity me" approach. They exist to help you work through your feelings and frustrations. Whether you accept them or change them, you can do so within the framework of a supportive group of people who know your problems firsthand.

Some offer family members an opportunity to share feelings, fears, and anxieties with others bearing similar burdens. Some provide patients a place to express negative feelings that they don't want to unload on their families. Patients without families can speak openly and release their pent-up emotions without fear of taxing existing friendships.

Some support groups provide skills training and helpful tips for special sets of patients such as those who have had a laryngectomy, ostomy, or mastectomy. Organizations designed to offer emotional support nonetheless can provide opportunities to exchange practical information, such as how to control nausea from chemotherapy or how to talk to an employer about cancer.

A self-help group can give those recovered from cancer an opportunity to aid those who have cancer. With training, some become group counselors or discussion leaders. Many former cancer patients have found that helping others gives a marvelous and oft-needed boost to their own self-esteem. (That can be so important after a long stretch of feeling dependent on and at the mercy of physicians and hospital staff.)

Mutual assistance groups sometimes work with health professionals and the clergy to help them understand the special emotional needs of people with cancer.

Spiritual Support

Religion is a source of strength for some people. Some find new faith in a divine being and new hope from sacred writings when cancer enters their lives. Others find the ordeal of disease strengthens their faith, or that faith gives them new-found strength. Others never have had strong religious beliefs and feel no new urge to turn to religion at such at time.

Members of the clergy in increasing numbers are completing programs to help them minister more effectively to people with cancer and their families.

Individual pastors can provide hope and solace, but they vary, as do physicians and lay people, in their capacity to cope with life-threatening illnesses and the possibility of death. A religious leader untrained in illness counseling may refer you to an associate trained to work with people with cancer. He or she also might introduce you to another member of the congregation who can provide comfort and, perhaps, more time on a regular basis than the leader of a congregation can spare.

Selves and Self-Image

Cancer treatment can extend over weeks or months; side effects may come and go.

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 earlier. 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.

Editorial Comment: We want to mention at this point that www.SeniorSSuperStoreS.com features some resources that will help to inform you about cancer treatment, especially radiation oncology. We invite you to visit our Health Books department.

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.

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:

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 straight forward 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.

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 who 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:

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.

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.

Going It Alone

It is obvious that many of these remarks have been directed toward the person with cancer who is part of a family. Some live alone, however, and some feel they have no one to "live for." This increases loneliness and can make the will to live seem a bitter irony. They may want to pull the covers over their head and "get it over with." If you have no one else to provide encouragement, you have to act as your own cheering squad. It is hard, but it's not impossible.

An amazing gentleman of 73, who had been treated on and off for 8 years for Hodgkin's disease, described how he coped. "I kept on fighting. This is what you must do. Positive thinking and an active life are two things which will do a great deal to relieve the tension." In order to stay involved with life and mentally active, he enrolled in the university where he had received his bachelor of arts degree and began work on his master's degree. "Some people think I'm crazy," he admits. "Maybe I am, but it is a nice crazy anyway. At least, I have achieved happiness."

An elderly woman decided to "start a new life, make what's left of this one count." She started helping a state school for the retarded, and her home became "a depot for people with used clothing and toys. Now I have branched out to helping with nursing homes. I am so busy and happy; I have no worries."

Not everyone can go beyond themselves and give to others to this extent. You might not have the physical or emotional strength. It may not be natural to you, and you are still the same person you were. But many find cancer is easier to live with if they choose constructive ways to fill their time - to make part of each day count for what they can put into it.

Support From the Family

The desire to "do something" is common among nearly everyone with a family member or dear friend who has cancer. There is nothing you can do to change the course of cancer, so you do everything you can for the person. Sometimes, doing everything is the worst course to follow.

People with cancer still have the same needs and often the same capabilities as they did before. If they are physically able, they need to participate in their normal range of activities and responsibilities - right down to taking out the garbage. Helplessness, or worse, an unnecessary feeling of helplessness, is one of the great woes of the person with cancer. In the words of one:
"I am deeply angry over the way patients (not only cancer patients but any patient with a life-threatening diagnosis) are automatically treated as if we were mentally incompetent. Our relatives have RIGHTS; we have none. This is by a sort of mutual consent, an unconscious conspiracy which seems to be part of our culture. Let an individual become a patient . . . and he is treated, without any 'competency hearing,' as if he had been found in a court of law to be incompetent. Only the relatives are consulted or empowered to make decisions..."

There is great bitterness in this woman's words, and they can stand as a lesson to all. Although bedridden, a patient probably still is able to discuss treatment options, financial arrangements, and the children's school problems. The rest of the family must make every effort to preserve as much as possible the patient's usual role within the family.

The least you can do is to keep the patient informed of necessary decisions. You can help the seriously ill patient ward off feelings of helplessness or abandonment if you continue to share your activities, goals, and dreams as before.

Few of us who are well know what it is like to be placed in a position of dependency. Cancer attacks one's self concept as a whole person as well as threatening one's life. Feelings of helplessness are real enough when one is flat on one's back. Make every effort not to compound them by ignoring the wishes of the patient, or worse, by trying to make an invalid of a person who is up and around. Pulling one's weight is good exercise.

How the Family Copes

The needs of the family as a unit are important, too. Maintain normal living patterns within the family as well as possible. This is important for long-range as well as day-to-day coping. Sometimes, when the patient is in active treatment, family life becomes totally disrupted. If that happens, it is harder to resume functioning as a unit during periods of extended remission or permanent control.

"My worst emotional problem," one patient said, "was finding that my improved health posed inconveniences and threw my family's plans all out of line."

Understanding such a situation might help prevent it. There are many ways we cope with fear, anxiety and the threat of loss or death. One way is to begin preparing ourselves for an event by thinking about it, without being aware that we are doing so, as if it had already happened. Thus, we "rehearse" life as it will be so that we can assume our new roles more easily when the time comes. People do this throughout their lives, although usually they are unaware of it. For example, teenagers spend increasing amounts of time with friends rather than with family, "rehearsing" for the time when they will go out on their own.

When a family member has cancer, you may be "rehearsing" the future in your own mind. You might begin to "practice" how the family will function if that person dies. Watch for signs that you are excluding the patient and turn the routine back toward normal if you are. Knowing that these things happen, however, try not to feel guilty if you find yourself emotionally out of step with remission or recovery.

The Years After

Cancer is not something anyone forgets. Anxieties remain as active treatment ceases and the waiting stage begins. A cold or a cramp may be cause for panic. As 6-month or annual checkups approach, you swing between hope and anxiety. As you wait for the mystical 5-year or 10-year point, you might feel more anxious rather than more secure.

These are feelings we all share. No one expects you to forget that you have had cancer or that it might recur. Each must seek individual ways of coping with the underlying insecurity of not knowing the true state of his or her health. The best prescription seems to lie in a combination of one part challenging responsibilities that command a full range of skills, a dose of activities that seek to fill the needs of others, and a generous dash of frivolity and laughter.

You still might have moments when you feel as if you live perched on the edge of a cliff. They will sneak up unbidden. But they will be fewer and farther between if you have filled your mind with thoughts other than cancer.

Cancer might rob you of that blissful ignorance that once led you to believe that tomorrow stretched forever. In exchange, you are granted the vision to see each today as precious, a gift to be used wisely and richly. No one can take that away.

Resources

You may want more information for yourself, your family, and your doctor. The following National Cancer Institute (NCI) services are available to help you.

How To Find Resources in Your Own Community If You Have Cancer

If you have cancer or are undergoing cancer treatment, there are places in your community to turn to for help. There are many local organizations throughout the country that offer a variety of practical and support services to people with cancer. However, people often don’t know about these services or are unable to find them. National cancer organizations can assist you in finding these resources, and there are a number of things you can do for yourself.

Whether you are looking for a support group, counseling, advice, financial assistance, transportation to and from treatment, or information about cancer, most neighborhood organizations, local health care providers, or area hospitals are a good place to start. Often, the hardest part of looking for help is knowing the right questions to ask.

What Kind of Help Can I Get? Until now, you probably never thought about the many issues and difficulties that arise with a diagnosis of cancer. There are support services to help you deal with almost any type of problem that might occur. The first step in finding the help you need is knowing what types of services are available.

Information on Cancer

Most national cancer organizations provide a range of information services, including materials on different types of cancer, treatments, and treatment-related issues.

Counseling
While some people are reluctant to seek counseling, studies show that having someone to talk to reduces stress and helps people both mentally and physically. Counseling can also provide emotional support to cancer patients and help them better understand their illness. Different types of counseling include individual, group, family, self-help (sometimes called peer counseling), bereavement, patient-to-patient, and sexuality.

Medical Treatment Decisions
Often, people with cancer need to make complicated medical decisions. Many organizations provide hospital and physician referrals for second opinions and information on clinical trials (research studies with people), which may expand treatment options.

Prevention and Early Detection
While cancer prevention may never be 100 percent effective, many things (such as quitting smoking and eating healthy foods) can greatly reduce a person’s risk for developing cancer. Prevention services usually focus on smoking cessation and nutrition. Early detection services, which are designed to detect cancer when a person has no symptoms of disease, can include referrals for screening mammograms, Pap tests, or prostate exams.

Home Health Care
Home health care assists patients who no longer need to stay in a hospital or nursing home, but still require professional medical help. Skilled nursing care, physical therapy, social work services, and nutrition counseling are all available at home.

Hospice Care
Hospice is care focused on the special needs of terminally ill cancer patients. Sometimes called palliative care, it centers around providing comfort, controlling physical symptoms, and giving emotional support to patients who can no longer benefit from curative treatment. Hospice programs provide services in various settings, including the patient’s home, hospice centers, hospitals, or skilled nursing facilities. Your doctor or social worker can provide a referral for these services.

Rehabilitation
Rehabilitation services help people adjust to the effects of cancer and its treatment. Physical rehabilitation focuses on recovery from the physical effects of surgery or the side effects associated with chemotherapy. Occupational or vocational therapy helps people readjust to everyday routines, get back to work, or find employment.

Advocacy
Advocacy is a general term that refers to promoting or protecting the rights and interests of a certain group, such as cancer patients. Advocacy groups may offer services to assist with legal, ethical, medical, employment, legislative, or insurance issues, among others. For instance, if you feel your insurance company has not handled your claim fairly, you may want to advocate for a review of its decision.

Financial
Having cancer can be a tremendous financial burden to cancer patients and their families. There are programs sponsored by the Government and nonprofit organizations to help cancer patients with problems related to medical billing, insurance coverage, and reimbursement issues. There are also sources for financial assistance, and ways to get help collecting entitlements from Medicaid, Medicare, and the Social Security Administration.

Housing/Lodging
Some organizations provide lodging for the family of a patient undergoing treatment, especially if it is a child who is ill and the parents are required to accompany the child to treatment.

Children’s Services
A number of organizations provide services for children with cancer, including summer camps, make-a-wish programs, and help for parents seeking child care.

How To Find These Services
Often, the services that people with cancer are looking for are right in their own neighborhood or city. The following is a list of places where you can begin your search for help:

Getting the Most From a Service: What To Ask

No matter what type of help you are looking for, the only way to find resources to fit your needs is to ask the right questions. When you are calling an organization for information, it is important to think about what questions you are going to ask before you call. Many people find it helpful to write out their questions in advance, and to take notes during the call. Another good tip is to ask the name of the person with whom you are speaking in case you have followup questions. Below are some of the questions you may want to consider if you are calling or visiting a new agency and want to learn about how they can help:

The most important thing to remember is that you will rarely receive help unless you ask for it. In fact, asking can be the hardest part of getting help. Don’t be afraid or ashamed to ask for assistance. Cancer is a very difficult disease, but there are people and services that can ease your burdens and help you focus on your treatment and recovery.

This fact sheet was adapted with permission from Cancer Care, Inc., a nonprofit social service agency whose mission is to help people with cancer and their families. Cancer Care’s toll-free telephone number is 1-800-813-HOPE. The National Cancer Institute and Cancer Care, Inc., are in partnership to increase awareness of the psychosocial issues faced by cancer patients and to provide resources to cancer patients and their families.