Your emotional well-being goes hand-in-hand with good physical health. Your state of mind is an important part of fighting kidney cancer.
Mental Health & Emotional Well-Being
As you experience cancer, you will encounter books and articles advocating a positive mental attitude, intimate and loving relationships, reduction of stress, imaging, meditation, and other relaxation techniques. The real message of these writings is that mental processes and states of mind can contribute to survival and healing in cancer patients. In short, good mental health goes hand-in-hand with good physical health. A positive mental attitude is free. It does not require a doctor or a hospital or an insurance company.
There is a body of research on how psychological processes and the central nervous system interact with the immune system. Thought processes involve chemical communications among neurons in the brain and central nervous system. The immune system also communicates chemically with the central nervous system to perform a variety of functions.
Research indicates that stress can alter immune system function. In turn, immune system function can alter tumor growth and response. Disease and treatment are stressful, and this stress may also alter immune function. Stress reduction, imaging, and visualization techniques are thought to be useful in cancer treatment because of this linkage.
Cancer wellness is the promotion of health and general well-being in people with cancer and those close to them. Wellness operates at four levels: physical, functional, emotional, and social.
The physical condition of cancer dominates the other three levels. If you didn’t have a tumor and the disease, cancer wellness would not be an issue. The physical aspect of cancer presents itself with symptoms and possible side effects from treatment. Your physical condition can limit your ability to function normally in your work, recreation, and daily life. Your performance, from sleeping to household chores, may be influenced.
If functional performance is lessened, emotional distress, frustration, and loss of well-being may result. The spiritual side of your life may be affected and personality change may result. Sociability, intimacy, and family functioning may also be diminished. Stressful family conflicts may result as tension within the family builds. These are symptoms of emotional and social malaise, and can be eliminated or diminished through counseling.
Cancer patients typically experience three types of psychological difficulty: the “Damocles Syndrome” which refers to uncertainty about one’s health and the fear that cancer may return; the “Lazarus Syndrome” which refers to the difficulty patients have being treated normally as they re-enter the healthy, productive world; and the “Residual Stress Syndrome” which refers to the anxiety that comes from having had cancer. These are normal consequences of having cancer. In part, just as you may have a physical scar from surgery, you have a “mental scar” from your cancer experience.
If you or your family has unusual distress from an encounter with kidney cancer, you may wish to seek professional assistance. These services may be covered by your insurance. Your doctor can refer you to a mental health professional. Many cancer centers have psychologists and social workers who specialize in assisting cancer patients and their families. There is no shame in using these services. Many families do.
David F. Cella, PhD, a clinical psychologist who works with cancer patients, has developed a cancer wellness doctrine consisting of eight commonly held beliefs plus eight modifiers. As you seek cancer wellness, you should keep these eight modifiers in mind:
My health is my responsibility. (But I did not cause my disease.) Take charge, but don’t blame yourself. No one really knows what causes a particular case of kidney cancer.
I will always have hope. (But what I hope for may change over time.) Goals and aspirations change throughout life, even if you don’t have cancer.
My doctor and I are partners. (We both have things to learn.) Be open to new ideas and be actively involved in your treatment.
Death is not failure. (Personal dignity and quality of life are my measures of success.) Work to make your life better.
Cancer provides me with an opportunity. (But I don’t have to be grateful for it, and I didn’t need it.) It’s okay to dislike the cancer experience, but it pays to make the best of it.
I can change the way I deal with stress. (The past is unimportant unless I make it so.) Avoid excessive stress and look forward to future pleasures and experiences.
Cancer is a family illness. (Therefore, my family needs attention too.) Don’t take your family relationships for granted. Build new dimensions into your relationships.
I can make a difference in my care. (I need to look inside myself for the proper direction.) You really do know the right thing for you to do. Proceed thoughtfully and trust yourself.
Support groups have also been found to be beneficial in reducing the anxiety levels of cancer patients and their caregivers. Patients and family members can attend groups together or join separate groups designed to meet their specific needs. Newly diagnosed patients and their supporters frequently obtain useful information and receive emotional support by talking to a cancer survivor who has undergone a similar type of treatment. Not surprisingly, research has found that patients who actively participate in a cancer support group survive longer than comparable patients who do not participate in such groups.
A person living with kidney cancer needs to be selective in choosing a group. Because the cancer is rare and recommended treatments are often different from those for other cancers, the kidney cancer patient may have difficulty obtaining needed information from other cancer survivors or relating to them. To accommodate the special needs of the kidney cancer patient, the Kidney Cancer Association conducts patient meetings at major cities throughout the country. In addition, the Association’s annual Patient Conference is a good place to meet many other survivors and their families and learn about new treatments and clinical trials. To obtain more immediate information, you may call the Association (1-800-850-9132) and ask to talk to another survivor or family member who has volunteered to talk to others.
Talking With Children About Cancer and Treatment
While this can be a very difficult topic, it’s important to be honest and up-front with children about cancer. Bringing children to an appointment so they can see “how things work” and meet the medical team can be very helpful as they try to understand your cancer diagnosis. By bringing children along on a medical visit, they will have the chance to share their feelings and ask questions. It may be necessary to take children out of school for the day, but the result can be very positive, helping them feel they are a part of things, rather than being left out. It also helps you and other family members remember to deal with the needs of children throughout the diagnosis and treatment process.
Finding Support Online
If you have a computer and access to the Internet, you may also participate in on-line support groups such as a message board or social network, such as Facebook®. An online message board allows individual participants to communicate with a group of people who share ideas and questions. New messages are posted throughout the day. The Kidney Cancer Association offers a message board where patients can share information, as well as a Facebook® Fan Page.
The Kidney Cancer Association also offers a live support feature that enables website visitors to directly contact the Association office and be put in touch with people who are knowledgeable about the treatment of kidney cancer. This service is available during office hours, Monday through Friday. You can also contact the Association office by calling 1-800-850-9132.
As always, be aware that not everything on the Internet comes from a reliable source. Consider carefully the credibility of the website before you draw any conclusions. The resources webpage of this site offers a number of reliable websites.
Hospice and Palliative Care
Life is precious despite all its problems. However, one cannot truly celebrate life without also thinking about death. Death is a natural part of life and we will all share the experience. From the moment we enter the world, it is certain that we will leave it. What counts is the trip along the way.
It is perfectly normal for someone with kidney cancer to think about the possibility of dying of the disease. Keep in mind, however, that kidney cancer patients also die of other accidents, and in other ways. There is no right way or wrong way to respond to the possibility of death. Anger, fear, frustration, and a wide range of emotions are normal. Family members may not want to discuss death or you may not want to discuss it. But recognize that it may be healthier for everyone, particularly for family members, if it is openly discussed.
Denying that you have cancer or denying the possibility of death is not okay. Denial of reality is likely to cause you more problems than squarely facing up to the facts. You may not like your situation, but at least you should attempt to understand it and improve on it. You should not give up life or living because you have cancer. Enjoy life and savor every moment. Set new goals and work to achieve them.
Recognizing your own mortality may cause your value system to shift. Things that were once very important become less so, and things that we took for granted become more relevant. This shift in values is normal. Accept that your life is changing, and prepare for the changes yet to come. If you are bothered that you have “some unfinished business,” finish it while you have time, but don’t make the possibility of death the sole driving force in your life.
Palliative care is an approach to cancer that stresses pain control, relief of symptoms, and psychological, spiritual, and social support for patients and families facing terminal illness. If you are concerned about pain, discuss it with your doctor so he or she can address you needs. Great strides have been made in recent years in developing palliative care options. Communicate what is important to you and have no guilt about it.
If death is imminent, be sure to tell your doctor and your family whether you want to stay in the hospital or want to die at home. If you want to die at home, ask your doctor or hospital social worker about a hospice program, or contact the National Hospice and Palliative Care Organization, 1700 Diagonal Road, Suite 625, Alexandria, VA 22314; telephone 703-837-1500; website: www.nhpco.org. You may also call Hospicelink at 1-800-331-1620 or write to Hospicelink at Three Unity Square, P.O. Box 98, Nachiasport, Maine 04655-0098.
Make time for yourself and seek spiritual counsel if doing so would help you sort things out. An important thing to consider is spending special time with each of your loved ones. This special time can create lasting memories for them.
Life and death are unique and personal experiences. None of us has exactly the same experience as any other person, although we may share some. No one can live for us. No one can die for us. We have achieved success when we have peace of mind – when we are comfortable with ourselves and in harmony with the world around us.
If you would like more guidance on these issues, the Kidney Cancer Association offers a book, “Reflections: A Guide to End of Life Issues,” written by Roger C. Bone, MD, a doctor and kidney cancer patient. The book (PDF) may be downloaded by clicking its title.
As a practical matter, if you don’t have a will, make one. If you already have one, review it with an attorney. If you don’t have an attorney, call the local chapter of the American Bar Association for assistance or contact your Legal Aid Society.
The U.S. Supreme Court has recognized your constitutional right to refuse medical care, including life support, even when such a refusal results in death. However, your right to die may be subject to state laws requiring evidence of your personal wishes and desires. Two types of legal documents can be used to express your wishes: the Healthcare Power of Attorney and the Living Will.
A Healthcare Power of Attorney is a broad document that delegates decision-making authority over your health care to another individual, usually a spouse or other close relative. The Healthcare Power of Attorney enables your designated agent to authorize hospitalization, personal care, and medical treatment, as well as to withhold or withdraw any medical treatment. For example, the Healthcare Power of Attorney can permit your agent to withdraw food and water or life support systems under certain conditions according to your wishes. It is helpful for the medical team to have a designated person with whom they can discuss specific issues if you are unable to do so as a result of your medical condition.
A Living Will is a simple document that gives instructions to your doctor and family about your desires should you become incapacitated and cannot express them at a later time. Through your Living Will, you can give instructions to your doctor and family about how you want to be treated while you are alive but unable to speak for yourself. For example, you may instruct your doctor to withdraw death-delaying treatment if you are in a “terminal” condition and death is imminent.
Seek the counsel of a professional attorney in drafting the necessary documents. By expressing your wishes clearly and forcefully, you can relieve your family and loved ones of very difficult decisions regarding your care. They will not wonder whether they have made correct decisions and they will have no anxiety or guilt. They will simply carry out your wishes as you specify them.
The Importance of Hope – and Positive Emotions
A kidney cancer diagnosis may be traumatic to both you and your family. Remember, though, that there is hope – new drugs and treatments are advancing rapidly, and the prognosis for kidney cancer patients is better today than it was just a few years ago. After your diagnosis, you will be presented with many tools to help in your recovery, ranging from surgery to therapeutic care. Among those tools, one of the most important is your own state of mind – don’t underestimate its power in bringing you back to good health.