Emotional and Psychological Support

Hope is a force that sustains and regenerates your will to live. Even if there is only a remote chance for a successful outcome, hope can still empower the spirit to fight for life. Hope can also motivate people to make positive changes in their lifestyles that engender better health.

Hope is fragile. It can ebb and flow depending on the success or failure of therapy. For a newly diagnosed cancer patient and their relatives and friends, hope is usually focused on treatment and the potential for a cure or remission. With advanced cases of cancer, patients and their families frequently hope for pain control, an end to suffering, and a peaceful death. Another form of hope lies in spirituality, including a belief in transcendence, or the continuation of the soul after death.

Hope can be nourished in many ways, including accomplishing a goal, having control over your life, feeling appreciated and useful, experiencing religious faith/spirituality, and spending quality time with family and friends. Recent advances in cancer therapy are also a cause for hope. There are over two hundred new drugs, vaccines, and antigrowth factors currently being tested in clinical research. Because of these and other advances in cancer research, it is wise not to focus on the statistics concerning your illness. Statistics can give you a general idea of the odds for getting better or having a recurrence of disease, but they only represent averages. You are not 40 percent of anything!

"Anything is possible. You can be told you have a 90 percent, or a one percent chance. But as long as you take that chance and believe in yourself and are a brave person, and then want to be better than before... I'm living proof that you get a second chance, and the second time around is better than the first."
Lance Armstrong, Cancer survivor
Winner of the Tour de France

Fifty years ago, there was little discussion on how to cope. Patients just dealt with their problems - feeling isolated and distressed. Now the concept of patients developing coping skills has received considerable attention from healthcare professionals. Even the Federal government became involved and, in 1980, the National Cancer Institute published Coping with Cancer. In the 1990s, over 2,500 articles on some aspect of coping with cancer appeared in medical and mental health journals.

Coping refers to the attitudes you develop and the actions you take to maintain your equilibrium and adjust to the stresses caused by cancer. Different people cope in different ways. It is normal to feel frustrated at times, but how you cope, and your attitude can make a difference. By externalizing your frustrations, you can improve your quality of life. Of course, the nature of your psychological and emotional needs will change as you proceed from your initial diagnosis through cancer therapy. At the time of diagnosis, it is common to feel stunned. In an instant, your life has changed forever, no matter what the outcome of treatment. This may very well be one of the most difficult periods in dealing with your cancer - a time of shock, fear, and disbelief accompanied (in some people) by a feeling that cancer is a retribution for some previous misdeed. Of course, you wonder whether you'll survive and, if you do not survive, what the end will be like.

Other more immediate concerns may touch on whether you will be able to return to work or can meet your daily living expenses. You may worry about whether you have sufficient medical coverage or how your financial situation will be affected. What compromises will you need to make to maintain your quality of life? How will your family members be affected by the stress of living with you during your treatments? How will you and your family deal with the possibilities if there is no cure?

These are very common concerns and you can benefit from talking about them and seeking help. Fortunately, any number of people can serve as your sounding board. These can include a social worker, psychiatrist, or psychologist, a clergy person, a sex therapist, a friend, another cancer patient or a support group. You may very well need to discuss your concerns. with more than one of these trained persons.

One of the greatest services these people can render is to help you accept your cancer and at the same time allow you to realize that you are in charge. You can choose your medical team, accept or reject their recommendations, seek second or third opinions, and most important, determine how your family, friends, and colleagues will behave toward you. If you are able to discuss your disease and medical therapy, you will find that you have inner strength to help fight your disease and maintain your quality of life.

In essence, your relationships need not change. You can have the same give-and-take dynamic with family and friends that sustained you in the past. The exchange of love and support will improve your ability to fight for your life. You don't have to try to cope alone. You might even derive an inner strength from your understanding and support that can enable you to help others find solutions to their problems. Feeling good about yourself will help you cope better.

Your attitude can make a difference in how you cope with your illness. Courage, compassion, forgiveness, and positive thinking are four attitudes that can help you cope with the difficulties of living with cancer.

The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do.

It is more important than appearance, giftedness or skill. It will make or break a company, a church...a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past...we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one thing we have, and that is our attitude!

I am convinced that life is 10% what happens to me and 90% how I react to it. And so it is with you...we are in charge of our Attitudes.

Courage is the ability to face seemingly insurmountable crises with determination and fortitude. By courage we do not mean stoicism. Plato defined courage as knowing when to be afraid. Courage is about recognizing the difficulties we face and deciding to move forward in a way that reflects our personal philosophy as well as our moral standards. In doing so, one has take certain gambles or risks.

Compassion is the desire to diminish or eliminate the suffering of another. It involves our inner spirit, how we feel towards other human beings, and how we act to support them during times of trial and difficulty. Acting with compassion requires giving of yourself, your warmth, your inner strength, to help sustain another. People who are ill often find that their sense of compassion is enhanced by their own suffering and that feeling and expressing compassion for others becomes a sustaining force for them. Compassion for oneself, especially in a time of great difficulty, can also be a powerful healing force.

It is not uncommon for people to hold onto past hurts, prior grievances, and old grudges. When you can forgive past disappointments and struggles you increase your chances both for healing and present-day happiness. Forgiveness does not mean that you have to condone actions that were painful, reconcile with people who have seriously wronged you, or give up your right to judgment and your quest for justice. Forgiveness means making peace with things you cannot change and turning your thoughts to the matters in your current life that need your attention. Let the past stay where it belongs.

Research shows that when people practice forgiveness they experience less physical and emotional stress, depression, and anger. When forgiveness is implemented, people also show improved physical vitality, optimism, spiritual connectedness, and confidence about managing their emotions. The benefits of forgiveness are lasting. Start by forgiving something small and practice until the little things no longer bother you. Then work on bigger issues that distress you.

A positive and optimistic outlook will not only improve your quality of life but also improve your chances of getting well. Studies have suggested that a negative or pessimistic outlook may actually decrease your chances of recovery. When you have cancer, it can be difficult to maintain a positive attitude. Daily you are confronted with many obstacles, including the side effects of the illness and treatment, as well as feelings of fear, anger, depression, and loneliness. All of this can impact even the most buoyant of personalities. One way you can help yourself maintain a positive attitude is by setting reasonable, achievable goals. Another helpful hint is to put your energy into activities that bring satisfaction to your life. Doing your best to maintain a positive attitude will help you better cope with your illness.

Support groups provide patients with an opportunity to see the problems they are confronting through the eyes of others. This can give patients a new perspective on their situation, reduce the inappropriate guilt felt by some, and help patients to recognize that their problems are the result of the cancer, rather than some personal failing. Questions such as "Why me?" take on a new meaning in a group of people wondering the same thing.

Although support groups may not be right for everybody, they assist patients to develop more active coping strategies and to dispel feelings of isolation. Group discussions can lead to the discovery of new domains of potential control. Taking charge of treatment decisions, working to improve family relationships and setting priorities can be powerful antidotes to the helplessness engendered by illness. Group members can also develop and consolidate their own sense of personal competence in dealing with cancer by helping other group members. Helping others enhances one's own sense of self-esteem and purpose in life.

Such programs are available in oncology centers, private practices, and supportive care programs. These programs are also available through the American Cancer Society, and The Lymphoma and Leukemia Society. Recently, efforts have been made to establish Internet chat rooms for cancer patients. While maintaining quality control is a difficult problem, electronic support has already opened new worlds of information for patients, and it may also provide emotional support at little or no cost.

Robert Watts, a professional football player, cured of Hodgkin's lymphoma, comments on his reasons for joining a support group:

When I was diagnosed, I was a professional athlete. I was used to putting problems aside. I could not think about injuries when I was playing or I would get injured and instead I would picture myself doing what needed to be done, picture myself winning. That didn't work with this (having Hodgkin's disease), although I used it as my model for getting through treatment.

It was after treatment that problems began. I would find myself getting overwhelmingly anxious, feel tight in the chest. I remember working out in my gym at home and after fifteen seconds with skipping rope, my chest tightened up, my muscles were tight from the radiation and I didn't know how to deal with that. I was scared I was going to die. But I wasn't allowed to be scared...

But the greatest thing that turned me back towards my feelings are what I learned with the Survivors' Group. One night when I was feeling bad, a young Latin woman entered the group. She had recently completed her therapy for lymphoma. She cried every time she attempted to talk about her pain. Finally, she spoke about not being able to feel good about anything, about not feeling lovable. For the first time, I heard someone talking about experiencing what I had experienced and suddenly, I realized that I was not the problem, but instead that I had a problem.

Such moments of clarity, identification and connection that come with discussing deeper concerns are part of the emotional healing process that group therapies offer cancer patients.

Whatever your health status, setting goals - and achieving them - is an important part of maintaining your quality of life. Patients frequently find that they need to reevaluate at least their short-term goals due to their disease and its treatment. By setting reasonable short-term goals - even limited ones such as getting out of bed, walking to the bathroom, or leaving the hospital and going home - you will reduce your sense of frustration and powerlessness. If you are able to achieve these goals, begin to set longer-term goals, such as going back to work or taking a vacation.

It is not uncommon for people with cancer or some other serious disease to experience a reordering of priorities. In reevaluating your long-term goals, you may decide on some new ones. Discovering something that you want to achieve or do - something that has special meaning to you-can be very empowering. As difficult as it may seem, setting your affairs in order can also help to relieve stress. Putting together financial and other records, write your legal and ethical wills, complete an advance directive, and discuss your end-of-life care with your family, medical team, and attorney.

No matter what stage your cancer is in, setting shortterm, long-term, and lifetime goals will help you define and achieve your life's purposes. By doing what gives you pleasure and fulfillment, you will gain a greater sense of control over your life and add meaning to your life.

The support of family and friends is an essential part of maintaining your quality of life. Family and friends provide you with emotional support, physical comfort, spiritual guidance, a welcome diversion, and assistance with logistics. Even friends and family who do not live in your area can be a part of your support team through telephone calls, emails, letters, care packages, or occasional visits.

After your diagnosis or at some point in your treatment, it may be helpful to gather your local friends and family members at what we call a tea party. Find out who can help you with various tasks - such as driving you to the doctor, shopping, cooking, or helping with childcare - and enlist your team.

Spending quality time with your friends and family will enrich your life. Share a meal, play a game, or look through an old photograph album together. Some of our patients have participated in a videotape, the Life Tapes Project, that we have developed. For this project, patients tell their life stories and those of their parents and grandparents on videotape. Children often participate, asking questions and spurring other stories. Patients find that the process of telling these stories is a way to express love and talk about family legacies, and the videotape becomes a permanent record of these legacies. Some patients also record their family genealogies. Writing an ethical will - or your philosophy of life - is another way to share important beliefs with your family.

At times of extreme vulnerability, we all tend to pay more attention to our innate spirituality and seek to restore a feeling of being connected with the universe or a spiritual idea beyond ourselves. We may seek this liaison through prayer and a renewed devotion to God and our religion or through ritual exercise such as yoga, tai chi, or qi gong. Whether done privately or with family and community, nurturing our spirituality is a vital component of coping with the unfamiliar and uncertain circumstances associated with chronic illness. In the event of treatment failure and progressive disease, spirituality can help ease the pain of separation from loved ones and the things of this world.

One aspect of your quality of life concerns your sense of peace or acceptance. Patients who do not participate in a formal religion but who nonetheless consider themselves spiritually involved often feel that their spirituality has been deepened through their experience with cancer. Some reflect on the suffering of humankind through the ages and feel that by having cancer they are participating in one aspect of what it means to be human. Some patients find peace in a kind of surrender to mystery and a trust in some larger reality - a divinity or intelligence, or a purpose - that gives meaning to their suffering.

Spirituality also plays a role in end-of-life care, helping patients utilize their remaining time to achieve a sense of peace and purpose, even in their final weeks, days or hours. Spiritual practices can strengthen feelings of hope or give meaning to life prior to death.

You will probably find that now, more than ever, diversions are an important part of enhancing your quality of life. Seek out the activities that you would normally do to lift your spirits, stimulate your mind, and tap into your creative potential - or explore new activities. Attend concerts, go to sporting events, play board games, enroll in a class that you have always wanted to take, do crafts, play an instrument, exercise, or take a vacation. There may be classes or activities available to you at the center where you are being treated, or you may be able to work with an occupational therapist or an art therapist.

We all know we are not immortal. This awareness of our finite time on earth can enhance our appreciation of our daily lives when we are healthy. When faced with a serious illness, however, that same awareness can devastate us when we most need peace of mind and freedom to focus on getting well. One way to achieve this freedom is to make known our desires about the event none of us want to contemplate - total incapacity and death. There are two good reasons for doing this. First, to ensure that your wishes are respected, and second, to avoid burdening your family and friends with the need to make painful decisions.

Therefore, this is the time to leave clear instructions as to whether you want to be resuscitated or treated, if you have no chance of regaining a reasonable quality of life. You need to sign a durable power of attorney with specific instructions to your medical team, family, and friends about your medical care concerning acceptance of resuscitation or measures to prolong life. You will also want to leave written instructions for your family and friends, if death occcurs, telling them how you want your remains handled and type of funeral service.

If you don't have a will for the disposition of your estate, this is a good time to get that out of the way as well. You can always change it later. The act of leaving instructions on these matters is a gift to those you love.