Cancer Support - 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:
Don't be afraid to ask medical questions of your doctor, nurse specialists, therapists and technologists.
Make lists of questions. Write out or tape-record the answers. Take someone else along as a second listener.
Ask your physician about unorthodox 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 every-thing at once or in easy 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, local chapters of the American Cancer Society, American Lung Association, Leukemia Society of America, the National Cancer Institute or affiliated Cancer Information Service offices 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.
Many groups have been established by patients and their families to share practical tips and coping skills. 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 us? 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—physical therapists, nutritionists, radiation technologists and such 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 before-hand 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, some a tape recorder, some 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.
Fear of being thought ignorant or pushy has kept many people from asking their doctors about a most important topic—the unorthodox 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 avail-able 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 be-fore, 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, someone in the family should speak with the doctor to learn the ex-tent 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.
Some physicians have never 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 to 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.
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 or the Leukemia Society of America, 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 pamphletsto 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. Cancer Information Service (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 re-search 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.
The names, addresses and phone numbers of the sources of information described in this section can be found in the appendix at the end of this book.
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, can 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 pro-grams. 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 psychiatric 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 person who, without judgment, 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 each member is affected when any one member is. 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 psycho-logical 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 re-source 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 firsthand the problems you are wrestling with.
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 which 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 follow. 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.
Religion is a source of strength for some people. Some find new faith in their divine being and new hope from their 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 urge to turn to religion at such a 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 nonetheless may refer you to an associate trained to work with people with cancer. He or she also might intro-duce 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.