Introduction: A Cancer Guide Part ll

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 With 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.
• Problems within the family can be the most difficult to handle; you cannot go home to escape them.
• Adjusting to role changes can cause great upheavals in the way family members interact.
• Performing too many roles at once endangers anyone’s emotional well-being and ability to cope. Examine what tasks are necessary and let others slide.
• Consider hiring professional nurses or homemakers. Financial costs need to be compared with the physical and emotional cost of shouldering the load alone.
• 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 homemaker. 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:

• The relative of a cancer patient has the right and obligation to take care of his own needs. Even though he may be accused of being selfish, he must do what he has to do to keep his own peace of mind, so that he can better minister to the needs of the patient.
• Each person will have different needs . . . These needs must be satisfied. The patient will benefit, too, by having a more cheerful person to care for him.
• The relative may need help from outsiders in caring for the patient. Although the patient may object to this, the relative has the right to assess his own limitations of strength and endurance and to obtain assistance when required.
• When the relative knows that he is already doing all that can reasonably be expected of anyone in caring for the patient, he can have a clear conscience in maintaining contacts with the rest of the world.
• If the patient attempts to use his illness as a weapon, the relative has the right to reject that and to do only what can reasonably be expected of him.
• If the cancer patient’s relative responds only to the genuine needs of the moment-both his own needs and those of the patient-the stress associated with the illness can be minimized.

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:
• Take time to ask medical questions of your doctor, nurse specialists, therapists, and technologists.
• Make lists of questions. Write or tape record the answers. Take someone else along as a second listener.
• Ask your physician to suggest other doctors if you wish a second opinion on your diagnosis before deciding on treatment.
• Ask your physician about alternative treatments if you have questions about them.
• Physicians wait for clues from their patients to determine how much to say. Let your doctor know whether you want to know everything at once or in stages.
• Remember that there is a difference between a physician who does not know that cancer need not be fatal and one who will not promise you a miracle.
• Trust and rapport between patient and physician are important; you must be able to work together to treat the cancer most effectively.
• Your physician, hospital, library, the National Cancer Institute or affiliated Cancer Information Service offices, and local chapters of the American Cancer Society are good sources of facts about cancer. Many also can provide the names of local support and service organizations established to help you cope with the emotional stresses of the disease.
• Emotional assistance takes many forms. Counseling or psychiatric therapy for individuals, for groups of patients, and for families often is available through the hospital or within the community.
• Patients and their families to share practical tips and coping skills have established many groups. One may be right for you.
• Your minister or rabbi, a sympathetic member of the congregation, or a specially trained pastoral counselor may be able to help you find spiritual support.

Which one of us did not feel that the world had stopped turning when cancer struck? But somehow each day goes on. During the period of active treatment a pressing number of decisions need to be made, questions must be answered and arrangements handled.

There are medical questions. There might be confusion or disagreement over the diagnosis-what did the doctor say; what do various terms mean; what is the outlook for recovery?

Financial burdens can be crushing. Transportation to and from treatment can seem a major, frustrating obstacle. Where does one get a hospital bed, a night nurse, a person to look after the children?

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.

Reprinted with permissions from the National Cancer Institute