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Introduction to Cancer Psychosocial Support |
Introduction
David Spiegel, MD
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We have conducted clinical research for two decades on the methods and effects of group support for cancer patients. We have found that seven fundamental issues need attention in the life of a cancer patient:
1. Build bonds of social support.
Cancer can be a very isolating experience. Friends and family may feel awkward about discussing cancer with someone who has the disease. Cancer patients are often removed from the flow of life, spending time getting treatment rather than at work or with family. Find new ways to connect with others: get help from friends, reach out to family, join a good support group.
2. Express emotion.
Cancer inevitably stirs strong feelings: fear, anger, sadness, among others. Allow yourself to deal with these feelings directly. Avoiding them only makes them harder to deal with, although many think that they can control the disease by controlling how they feel about it. There is no evidence that expressing sadness or fear allows cancer to progress. Indeed, if anything the opposite is the case. Those who honestly deal with their feelings about illness seem to do better rather than worse. And they become closer with those who share those feelings with them.
3. Detoxify fears of dying and death.
Death confronts all of us, but for cancer patients it carries a special dread, even though half of all cancer patients will be cured of their disease. Most people fear the process of dying more than death itself: being in pain, being unable to make decisions about their medical care, being separated from loved ones. Each of these serious issues are addressable when faced. Anxiety about death is actually reduced when the possibility of death is faced in a direct and supportive manner. Find someone you trust: a support group, a psychotherapist, a doctor, or a clergyman with whom you can discuss your concerns about dying and death. Whatever happens, you will feel better prepared and stronger for it. One breast cancer patient reflected on her experience in her group in this way: "Talking about death is like looking into the Grand Canyon (I don't like heights). You know that falling down would be a disaster, but you feel better about yourself because you're able to look. That's how I feel about death. I can't say I feel serene, but I can look at it."
4. Reorder life priorities.
Cancer changes your life: your body image, energy, time, future plans. Take the realities of the disease into account in planning your life. Live as fully as you can, while you do what you can to mitigate the damage it does. Trivialize the trivial, get rid of unnecessary obligations, and extract the most joy and satisfaction you can out of what matters to you in your life: important projects, people who matter, helping others. Hope for the best but prepare for the worst.
5. Fortify your family.
One cancer patient said to me: "My life has not been the same since I got cancer, but in many ways it is better. I am so much more honest and caring than I was before." Use the time you have to enrich family relationships, impart life values to children, enjoy the people you love. Discuss problems openly, and be clear with your family about what you need and want from them. At the same time, be prepared to offer help to them in dealing with your illness.
6. Deal better with your doctors.
We find that there are 3 keys to a good relationship with your physicians: communication, control and caring. Be clear with your doctors about what you want from them. Participate in treatment decisions, and become informed about the choices you have. Find doctors you genuinely care about you as a person as well as treating your disease, and let them know how much you appreciate it.
7. Learn methods to control cancer-related symptoms, such as pain and anxiety.
Simple techniques like self-hypnosis can be used to reduce or even eliminate pain and other symptoms. You have to pay attention to pain for it to hurt. You can learn to focus your attention elsewhere, to teach your body to float rather than fight the pain. You can imagine that the part of your body that hurts is warmer or cooler, lighter or heavier, and in this way alter how it feels. The strain in pain lies mainly in the brain. Addressing these seven issues can help you to enrich your life as you cope better with cancer. Cancer is not so much a 'death sentence' as a "wake-up call.' Heed the call and mobilize your personal and social resources to live beyond the limitations imposed by the illness.
Courage and Hope
David Spiegel, MD
Adapted from the Introduction to Inner Fire, Your Will to Liveby Ernest and Isadora Rosenbaum with permission from Plexus, Austin, Texas, 1998
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Plato said that courage is knowing when to be afraid. Within this book are stories of courageous people, who became very ill or faced some other crisis, yet counted--and count--themselves fortunate. In the face of a dismal diagnosis or harsh circumstances, they took stock of their resources and found strength and love.
Many people faced sickness, but were not overtaken by it. Just because one part of them became ill, they did not give up on all fronts. Their bodies may have suffered, but their spirits remained strong.
Indeed, serious illness is a reminder that life is not infinite. Those who respond creatively to a life-threatening illness hear it as a wake-up call, a reminder of how time is short and life is precious. They do what matters most while they can, experience the joys of living and loving, and let the people around them know how much they are loved and appreciated. They trivialize the trivial, drop useless commitments, eliminate relationships that are taxing and not worth the trouble and "just say no" to doing things they think they should do rather than what they want to.
A moving section in End of Life explores the tradition of writing "ethical wills" to pass on to family and friends an individual's spiritual legacy, a codification of what that person has learned in life about what has meaning and value. This underscores the importance of feeling embedded in the world of people, using the contemplation of the end of one's life not to deny death but to reaffirm the values of life.
The people talk about and illustrate the will to live in a realistic and meaningful way. They do not demonstrate some artificial determination to prolong life no matter what. They assess life's resources, goals and values. They take stock and see how fortunate they are to have people who care about them and whom they care about. Mind may not triumph over matter, but mind does matter.
Years ago, a clever graduate student taking a statistics course was wandering through a cemetery and realized there were two types of data on the headstones: birthdates and death dates. She wondered if they bore any relationship to each other. Theoretically, they shouldn't. When you die, you die. Period. That was not what she found. People tended to die after their birthdays, not before. The difference was not large, usually several weeks, but was significant. People seem to hang on until after their birthdays or some other special event. This doesn't mean you can make yourself live indefinitely through mental calisthenics, but rather that meaning makes a difference in the course of disease.
Another crucial theme running through the Inner Fire book is the power of social connection: no man or woman is an island. Prisoners of war on Bataan kept themselves alive through giving one another lectures, playing together, caring for one another. They develop a special relationship with each other and their God.
In my own field of research, we have found that women with breast cancer help one another enormously through support groups in which they can vent their darkest fears and learn how deeply they can still care about each other. To feel embedded in a network of caring at a time of serious illness is deeply reassuring. The will to live is not the denial of death. Rather, it is the intensification of life experience which comes when you realize how finite life is.
Be willing to make compromises, find the joy in life, find good support groups, be partners with your doctors. Cancer patient stories in Inner Fire make it clear that we are not simply happy or sad and that pleasure is not simply the absence of pain. Illness teaches us that we can be both happy and sad and that even the threat of progressive disease and death can provide a context in which life can be sweeter. One woman with advanced breast cancer once said to me, "All my life I had wanted to go to the summer opera in Santa Fe. This year I went. I brought my cancer with me and it sat in the seat next to me. I loved it."
Dr. Spiegel is a prominent professor of psychiatry and behavioral sciences at Stanford University Medical School. He has authored 230 research papers and chapters in scientific journals and books.
Regaining Control
Ernest H. Rosenbaum, MD and Isadora R. Rosenbaum, MA
Reprinted with Permission from Coping with Cancer-Published Jan/Feb 1999
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Nobody wants to feel out of control. But if you have recently received a cancer diagnosis or are undergoing treatment for cancer, you know that your cherished feeling of autonomy was the first thing to go. In a single moment, you were overwhelmed by the negative feelings associated with the word "cancer" and are now preoccupied with therapeutic alternatives, six-syllable drug names, and treatment schedules. At worst, you may feel that coping dehumanizes you. At best, you yearn for a semblance of life as it was before your diagnosis. However, you needn't play victim to cancer. You can regain control of your life by following some simple guidelines. In the process, you will not only strengthen your will to live, but increase your chances for improvement, remission, or cure.
1. Choose a knowledgeable physician who projects confidence, someone you can talk to.
Establish a partnership with your physician and the rest of the medical support team, stressing your need for honesty and open communication. Then, find out everything you can about the nature of your cancer, therapeutic options, and the rehabilitation process by asking questions of your physician and performing your own research on the internet, in medical libraries, and at hospital resource centers. Bring a list of questions to each appointment to make sure you don't forget anything. If you have doubts about any medical decisions, don't be afraid to tell your physician that you want a second opinion.
2. Seek psychological support from a group or an individual.
A support group with a skilled leader can usually provide a safe atmosphere in which to express your concerns as well as learn from the experiences of others. The best way to judge whether a support group is right for you is to attend a meeting. If you don't like it, don't go back. You may have to visit several groups before you find one that meets your needs. Alternatively, you may decide you prefer a one-on-one support relationship with a medical social worker, psychologist, or a person who has recently undergone therapy for a similar cancer. Such a person can be invaluable in allaying your fears and giving you the confidence that you can endure treatment.
3. Learn how to reduce stress.
Experiment with one of the stress reduction techniques such as meditation, visualization, yoga, biofeedback, tai chi, or acupressure. Relaxing may temporarily enhance your immune system and even have a beneficial effect on the course of your illness.
4. Find ways to bring joy back into your life.
Pleasurable pursuits such as walking, painting or other artistic endeavors, reading and writing poetry or stories, watching funny movies, getting a massage, gardening, helping others, or other activities that you enjoy can stimulate the production of endorphins, natural morphine-like chemicals in your brain that decrease depression.
5. Avoid isolation.
Solitude breeds serenity and creativity, but too much solitude can lead to feelings of isolation and depression. Anything you can do to maintain your friendships or create new ones by sharing your feelings and being a good listener will help ward off a sense of isolation.
6. Put your family, friends, and colleagues at ease
by being open about your cancer.
You have everything to do with how others perceive you and treat you. If you can discuss your disease and medical therapy in a matter-of-fact manner, people will respond in kind, without fear or awkwardness. Remember- You are in charge!
7. Make plans for the future.
You won't plan for a future if you don't believe there will be one. Therefore, you may find it helpful to come up with a list of short- and long-term goals. Making plans can be a pleasant and positive experience!
In summary, anger, depression, loss of self-esteem, and feelings of isolation and loneliness are natural reactions to a cancer diagnosis, Allowed to fester, however, they can destroy hope and lead to a wish to die. Knowledge of treatment options, a carefully planned nutritional and exercise program, and proper social and psychological support can help you to overcome these debilitating emotions.
Inevitably, you will need to make some changes in your daily routine as you undergo treatment and regain your health. Your ability to make these compromises is key to regaining control. Whatever changes you make, you will find that your intellectual and emotional potential remain intact and need not be diminished. You may even find that this experience presents an opportunity to redirect your life in new and productive ways.
Beliefs I use to help me to stay,
Feeling Right when Things go Wrong
Pat Fobair, LCSW, MPH
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The only issue more powerful to us than a challenge to our beliefs about life is the possibility of loss of one's survival.
Survival:
When it comes to the possibility of loss of one's life, we have sense of shock, feelings of isolation, and fear. We may notice feelings of being, ``out of control.'' I found that it helped me to notice my feelings of sadness, fear, anger, as soon as possible, and give my self permission to feel disappointment, directly. I feel less defensive, sooner when I can do this. For example, I have fewer blaming thoughts and use less denial, when I can acknowledge my emotional pain. Almost as soon as I get to naming the feeling, I am able to move on to constructive thinking and problem solving. Yet, a source of conflict may emerge within us between our values and beliefs about life and the more immediate reality emerging before us.
Values:
When our survival appears to be threatened, some of our basic beliefs in life seem out of line with the new reality. ``How could God let this happen to me? I've live a good, clean life.'' What is true? I feel deceived! The meaning in life seems to have shifted!''.
Addressing this major issue, Albert Ellis, Ph.D. originated a therapy he called Rational Emotive Behavioral Therapy (REBT).
Some ideas are comforting, others challenge us to shift our thoughts to more inclusive humanitarian viewpoints. Here are those that I found comforting.
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Humans are by nature remarkably imperfect and are encouraged not to define themselves by their shortcomings. ``If I can be imperfect, I can relax within.''
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Humans are not only different from another, but also differ within themselves by way of thoughts, feelings, and involuntary biochemical sensations. These differences frequently occur spontaneously, often for no special reason, and are best accepted rather than protested against. ``You do not have to be like me!''
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Human do best when they do not try to be islands unto themselves. Nor would it be well to make themselves endlessly dependent on their social group. Rotation and balance between you, and me, and us is the socially advisable ideal.
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By putting yourself first and keeping others a close second you may be able to promote the give and take that is compatible with harmonious social living.
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The essence of good problem solving is to give yourself some emotional slack; to lighten up on yourself rather than tighten up. Permitting yourself an emotional breath of fresh air has value apart from outside changes that you may be able to accomplish.
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Individuals are capable of emotional self-reliance with or without the support of their family or social system. ``I can get along alone, should I need to do so! ``
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Undamning acceptance of self, others, and life is a fundamental premise of rational living. ``You are okay just the way you are, and so am I!''
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Humans routinely don't practice what they preach. Pledging to more consistently practice affirmed ideals, while not condemning oneself for not hitting the bull's eye, is suggested. ``Thanks for forgiving my discrepancies!''
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There is no law of the universe that says others have to do unto us as we do unto them. Although it is nice when others treat us like we kindly treat them, such returns on our emotional investments are not necessities. ``I will have to tolerate my disappointments with others who `let me down.' And, I can allow myself to feel less guilty, when I disappoint others.''
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The persistence factor is best not underestimated. Getting behind yourself and pushing is habit forming and has a life of its own. Consistently going to bat on behalf of yourself strengthens emotional stamina while increasing the changes of success.
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Everyone is in life together and no one person is any better than another. There are no good or bad persons, only individuals who do good and bad things. ``This is hard to accept when I feel hurt, angry or disappointed, but blaming others only covers up my feelings and distances me from feeling them fully.''
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Happiness is a fleeting thing. It comes and goes in large part by how well you are able to control for your wants. Vital absorption in a selected project or cause that structures large amounts of your time you can improve our sense of meaning in life. ``Having projects and completing them gives me satisfaction.''
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We can all benefit from a healthy perspective on discomfort in life. Accepting rather than intimidating oneself about discomfort will promote an expanded lifestyle. Worshipping the avoidance of discomfort can lead to an avoidance lifestyle. Humans are in the world to experience the world, which includes a fair amount of discomfort. ``It has been hard for me to give up my childhood view of entitlement to unlimited happiness.''
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Convincing yourself that you can stand what you don't like allows you to be well grounded in curtailing your frustrations. ``The little child in me wants to run away and avoid discomforts, and situations that I don't like.''
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To damn or condemn a human, including yourself, is immoral and encourages a continuation of problems. ``Accepting and forgiving others reduces tension in my life.''
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Much of what is called anxiety is being overly concerned about what others might think of you. Understanding that you are not at the mercy of others' opinions of you better lubricates your relationships with them.
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A cornerstone of emotional well-being is not dramatizing the significance of disappointment, by awfulizing or catastrophizing the consequences. ``When I am scared, I immediately think of the worst thing that `might' happen, then imagine that it `has' happened. Accepting that I `am' feeling scared, and that its just a feeling, helps me let go of the dramatization inside my head.''
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Accepting the deficiencies of surety, certainty, and orderliness in this world permits less confusion about and more enjoyment of what it does offer. Uncertainty is part of our daily world. ``Accepting this idea, encourages me to make the most of each day, and to `stay-in-the moment.'''
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Running from pain increases suffering. Taking the long, easy way rather than the short, hard way is central to rational thinking. ``Everytime I've avoided a problem, it has returned to be struggled with again!''
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Human are born with the ability to emotionally upset themselves. Rational Emotive Behavioral Therapy takes a dim view of the idea that family of origin or other intrusive background factors are crucial in understanding how humans disturb themselves. ``I can choose to upset myself, or to calm down and figure it out!''
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Just because we experience feelings in a situation, does not mean that the circumstances caused the feelings. Nor must we presume that if we have a problem we wish to solve, that we must solve it. ``Feelings do not equal facts! Feelings are just feelings, `physiological phenomena, i.e. subjective reactions that may be pleasant or unpleasant, brought about by external circumstances and one's own thoughts and behaviors, and experienced as brief electrical surges in the body.''
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People can get by without outside reinforcement by reinforcing themselves with heavy doses of encouraging self-talk. ``We can do it, I can do it!''
This philosophy holds us responsible for our emotions. Accepting this higher level of responsibility puts us in the drivers seat to be our own best problem-solving philosophers.
Source: In 1955, Albert Ellis, Ph.D. originated a therapy he called Rational Emotive Behavioral Therapy, (REBT) an applied philosophy which helps us become aware of our belief system. In Bill Borcherdt's book, Feeling Right When things Go Wrong,(Professional Resource Press, Sarasota, Florida, 1998), these points were summarized
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