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Cancer - Coping and Hope |
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One Patient's Way of Coping
Diane Behar
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I have been treated with chemotherapy for over six years and am now on my fifty-fifth course.
My current treatment is an experimental infusion that lasts 15 days each month. Almost immediately, I experience a nearly imperceptible ebbing of my physical stamina and soon I prefer to walk rather than run, take an escalator instead of the stairs, sit down rather than stand. My life moves into slow motion. I gradually witness a change in my personality and the way I react to people and situations. What makes this experience so difficult and frightening is the loss of control that takes place--a transformation from a fully active and vital person into someone who can barely sit up and function effectively, which is overwhelming and disheartening.
Somewhere inside the deepest part of me, my truest self hides out under cover, and tells me that all of this is temporary and that I must just wait out these drug-induced episodes. This kind voice, along with my unwavering faith in God, enables me to conquer and think somehow I will be able to see my way into the clearing. And so I go on.
- I try to live day to day. I focus my thoughts in the present tense and try to deal with matters close at hand.
- I make myself stupid and I try not to think too much about the implications of what it means to have advanced cancer. Instead, I concentrate on concrete and practical things.
- I try as best I can to compartmentalize the illness and not give it free rein over my existence. I perceive it as unwelcome and boring.
- I live in a constant state of denial and keep my mind off the disease as much as possible.
- I surround myself mostly with people and situations that bear no relationship to the illness.
- I avoid reading or listening to too much about cancer or involving myself with people who are also fighting the disease. Although I am aware they can be beneficial and therapeutic, I avoid support groups in order to prevent myself from allowing any new fears and anxieties about the illness to enter my consciousness.
- I internalize a belief system that everything I am going through is temporary and will come to an end: I say to myself that in spite of everything, everything will be all right.
- I stand up to death with a courage I myself do not comprehend, and I do not permit myself to give in to a fear of dying.
- I acknowledge that it is impossible for anyone to feel like a normal person after living with this illness for so many years, and accept the fact that it's okay to feel crazy and alienated some of the time--or even much of the time.
- I remind myself that no one knows when their last day will be and that, so far, I have lived longer than many people predicted. I then think that maybe I'm doing something right after all and decide to continue to follow my prescription for coping.
An Essay on Hope
Ernest H. Rosenbaum, MD and Isadora R. Rosenbaum, MA
Reprinted from Inner Fire, Your Will to Live
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If you or someone close to you is living with an illness or the debilitating results of an accident, you will undoubtedly empathize with the thoughts and emotions expressed by others who have similar experiences. Their depression, anxiety about the future, and fear of suffering and dying are familiar to all of us, but so are their efforts to seek knowledge about their condition and to regain control over their lives.
In the process of reestablishing personal autonomy, these individuals accepted responsibility for their physical and emotional well-being. They recognized that their attitude toward their illness and, by extension, the way in which they portrayed it to others would determine how friends, family, and colleagues would react to them. But they chose to consider this reminder of their mortality as a "wake-up call" that led them to reassess their values and to either confirm or change their way of life. Each of them nurtured old relationships and developed new ones; each lived life more fully while learning to live with illness. Each of them found hope.
The same opportunity to acknowledge our mortality and examine our priorities is available to all of us the temporarily healthy and those with illness. David Spiegel, MD questions--What is important to us? How do we want to live the rest of our lives? If we discover behaviors or habits we wish to change, we are free to begin experimenting in that direction. We too may start to take risks, open our minds to other modes of thought, take a trip or a class, and make new friends. Anyone who goes through this process will undergo permanent, positive change and will have begun to nurture the will to live.
Although we cannot precisely define the will to live, we have identified the following attitudes and behaviors common to those in this book as well as to other patients observed over many years of practice:
- They live in the present. They know the past cannot be changed, but they also know they have the capacity to influence the quality of today and tomorrow.
- They accept their new problems and attempt to solve them through introspection, understanding, and sharing.
- They set reasonable, achievable goals.
- They consciously try to downplay negative emotions and to focus on feelings of love and hope.
- They surround themselves with supportive friends and family members.
- They actively search for ways to help others.
Of all the ingredients of the will to live, none is more essential than hope. But hope is relative: One person may hope for the fullest possible remaining life; another may hope to live until a special holiday or a family reunion; still another may simply hope to avoid suffering.
Doctors can contribute substantially to a patient's feelings of hope not false hope, but realistic hope. When a patient asks, "How long have I got?" some physicians will respond, six months, a year, two years, and quote clinical statistics for that person's disease. What these physicians often forget to mention is that statistics are averages, compiled from survival data on a great number of individuals, some of whom obviously lived much longer than the average, and others a much shorter time. As many of the individuals in this book demonstrate, it is impossible to predict any person's longevity. Even after a patient has begun a particular therapy, it takes time to determine whether it will have the desired effect. But even if it fails, another one may be highly successful.
Hope may indeed be one of the elements that enables a person to live longer than medically anticipated. However, the opposite is also true. An extreme lack of hope can have the same effect as the phenomenon called self-willed death or bone pointing, observed among Australian Aborigines and in other South Pacific cultures. In such cases, a tribal witch doctor casts a spell similar to that observed in Voodoo (in certain African or South American tribes), causing the victim to suffer paralyzing fear, withdraw from society, and die within a short time. Of course, the witch doctor can only be effective if the potential victim believes in the power of the curse. In the same way, a person with an illness can be adversely affected when doctors and nurses project a sense of hopelessness, or when family and friends are unable to hide their fears. (Paradoxically, such people are often projecting concern over their own mortality, not that of the patient!)
Clearly, realistic hope is a life force in and of itself. If you are dealing with a serious illness, you may often feel exhausted, overwhelmed by never-ending problems, ready to give up. Yet, a little hope, a remote chance for survival, or a small improvement in your condition can give you the strength to carry on.
In conclusion, the will to live both defies definition and has many definitions, as demonstrated by our contributors. We can only describe common behaviors and attitudes among those who have it, and acknowledge its wondrous power. People who exhibit a strong will to live appear to have strong bonds of friendship and love. They also show a determination to meet misfortune head on to accept what has happened and find a way to cope. Part of this process involves finding out everything they can about their condition and treatment alternatives and discussing these facts with their doctors and those close to them. They certainly reexamine their priorities. Most important, perhaps as a result of the foregoing, people with the will to live are determined to live life to the fullest, regardless of the actual timespan.
Finally, most of us do not discover the great, untapped force of the will to live until we are faced with an illness or other crisis. Yet we all have the ability to unearth its potential. We hope that the stories of the courageous people in this book will inspire you to delve into your innermost being and live every succeeding moment from your mind and heart.
Step by Step one at a time.
From one point to another up the mountain.
From one height achieved to another.
-Anonymous
To live with hope is a reflection on our attitude and perspective of life. To rebuild our foundation of hope we need the courage to live. How we live and what we do with our lives is our choice and can be within our control subject to fate and good fortune.
When Your Spouse Has Cancer
Andrew W, Kneier, Ph.D.
Reprinted with permission from Coping Magazine
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What to do for your spouse when he or she has cancer depends on your spouse's personal needs and the individual situation. For example, a lot depends on whether your spouse is newly diagnosed, dealing with metastatic cancer, or living in a kind of limbo, not knowing whether the cancer is gone or not. Nonetheless, there are some general guidelines that could help you provide the kind of support your spouse needs.
Facing cancer together.
Although your spouse has cancer, the illness is really happening to both of you. Your life is being disrupted in many of the same ways. You are sharing many of same emotions and concerns. You are both challenged to find constructive ways of dealing with the disruptions and threats posed by cancer and with the side effects of medical treatments. It can be tremendously reassuring and comforting to your spouse to know that the two of you are facing the illness together and that your support and involvement will be steadfast and unwavering regardless of what happens.
Here are some of the specific issues that you should try to face together: How serious is the cancer? What is the best treatment, and what are the pros and cons of different options? Are there clinical trials to consider, or perhaps complementary or holistic approaches? What roles or division of labor should we take in learning about these matters? What should we tell our children, and how can we best help them in dealing with this? What changes do we need to make in our daily routine to accommodate the need for treatments and to deal with side effects? What does our family need in the way of support and practical help from relatives, friends, and (if applicable) our religious community? How can we best reach out for the support we need?
Discussion is better than assumption.
Do not assume that you know what your spouse is thinking or feeling about the cancer, or that you know what he or she needs from you. You might think your spouse is mostly scared, when actually he or she feels more sad or perhaps guilty about the consequences of the cancer for you. You might think that your spouse is strong and resilient, when actually he or she feels vulnerable and dependent on you, but may not want to show that. You might think that your spouse wants you to offer encouragement and hope, when actually he or she just wants you to say "I'm with you in what you are feeling, and we'll face this together no matter what happens."
The point of this is to talk with your spouse about his or her emotional reactions and concerns....and to ask what your spouse needs from you. Some of these needs may be concrete or practical: going together to doctor's appointments, becoming educated about his or her cancer and the treatment options, handling all the phone calls from friends and relatives, taking over more household chores. Other needs may be more emotional: being attuned and responsive to what your spouse is feeling, encouraging your spouse to confide in you, offering empathy and support during difficult times.
Support your spouse's true feelings.
Most cancer patients feel pressure to maintain a positive mental attitude, and too often this pressure prevents them from expressing their true feelings. Your spouse might hold back in sharing legitimate fears because he or she does not want to disappoint or burden you, or because he or she thinks that negative emotions might jeopardize healing. Actually, it is the suppression of fears, sorrow, or anger that could jeopardize your spouse's psychological adjustment and immune response.
Your spouse probably has good reasons to be worried and upset, but also good reasons to feel hopeful and optimistic. You should try to support and validate both sets of emotions (not only the positive ones).
Confronting sexual issues.
Your spouse's cancer or the treatments have probably affected his or her sexual interest or functioning or feelings of attractiveness. Some common examples are the loss of libido caused by chemotherapy and hormonal therapy, the impotence caused by prostate cancer treatments, and the body image effects of mastectomy and reconstructive surgery. Even without such specific problems, the depression that cancer can cause can reduce libido and sexual functioning. The bodily or mood changes in your spouse can also cause you to lose interest.
The key to dealing with these issues is open communication. Because your spouse might be reluctant to broach these topics, you could take the lead by acknowledging these issues and conveying your desire to face them together. You might also go out of your way to reassure your spouse of your love and devotion (because of who he or she is as a person, not because of physical attractiveness or sexual performance), that your main priority is his or her survival, and that you continue to desire an intimate physical relationship.
I know of hundreds of couples who have followed these principles. They have told me that the bond between them has actually been deepened and strengthen in this process. "It's ironic," one husband told me, "but somehow having to face death, and having to say good-bye to each other if that happens, has made us hold on tighter and cherish what we have."
Hurry Up and Wait!
Ernest H. Rosenbaum, MD and Isadora H. Rosenbaum, MA
Reprinted with permission from Coping Magazine
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The doomsday scenarios you conjure up during stressful waiting periods are usually far worse than reality.
Waiting for appointments and test results can turn living with cancer into a full-time occupation and preoccupation. You count the weeks and days until your next appointment and make note of every ache and pain, thinking it might be a symptom of cancer. On the day of your appointment, you are so anxious that you arrive early at your physician's office, only to discover that he is behind schedule, increasing your waiting time as well as your apprehension. During your visit, your physician orders the required tests and tells you to go home and wait for a phone call - or suggests that you call back in a few days or a week to get your test results.
You are always waiting for something: the initial diagnosis following surgery, a biopsy, mammogram. or fine needle aspiration, the results of treatment and. when in remission, your next checkup. The most difficult aspect of waiting is the open-ended uncertainty of not knowing what is happening inside your body. Conversely, knowing can be a relief, even when the news is not good. because you and your physician can then take action and discuss therapeutic alternatives.
You should also he aware that the time you spend waiting for appointments and for information on your medical status is often determined by circumstances beyond your control or that of your physician. For example, because of economic pressures, most physicians see more people per hour today than they saw in the past, resulting in shorter office visits that can make you feel you have received insufficient consideration of your psychosocial needs. Physicians' increasingly heavy workloads also lead to longer waiting periods for an appointment, whether for an initial consultation or for subsequent therapy.
The operating procedures of insurance companies and Health Maintenance Organizations (HMOs) can also lead to delays that, in turn, increase your apprehension. These organizations generally require that physicians get an authorization from them before ordering certain types of tests, therapies and surgical procedures. You or your primary physician must also request permission from the insurance company or HMO to consult with a specialist -- although you must, of course, choose one who belongs to their plan. If you choose a specialist who is not on their plan, you may find that they will not pay for the services. Any or all of these negotiations can mean added hours or days of fretfulness for you.
In short, many delays are endemic to the treatment of cancer today, but with a little mutual understanding and effort, you and your physician can attempt to deal with those that are occasioned by heavy patient loads. complex diagnostic tests, and insurance company and HMO requirements. Hopefully, in the last instance, future legislative action will streamline some of the medical management procedures that currently prolong certain waiting periods and exacerbate what is already a highly stressful time in anyone's life
First appeared May 1, 1999 updated; September 9, 2008