Facing the Challenge
Handling Your Emotions
Talking It Over
Making the Unknown Known
Relieving Your Pain and Discomfort
Feelings of Isolation

Living with a serious illness can be discouraging. You will have good days and bad days, just as you did before, and your ability to deal with these changes may vary. In the morning you may feel down, but by afternoon your outlook may improve. On one day, you may have little energy, but on another, your mood and spirit may rebound. During the bad times, try to remember the good moments and remind yourself there can be more good times ahead.

Taking charge of your life is one way to help yourself. Take an active role in the kind of care you receive. Participate in daily activities with your family and friends.

Do things for yourself that make you feel good, such as attending religious services or encouraging visits from friends. Let others help you. Let them know what they can do for you and what you can do for yourself. They will be grateful for specific suggestions. Your caregivers may recommend things that don't seem as important to you now, such as exercise, medications, and food. But these measures will help you keep your strength and independence for as long as possible. Working with your caregivers and family helps you maintain a sense of control, purpose, and hope.

Set the tone for those around you. Making those around you feel comfortable now will help them to be comfortable around you throughout your illness.

As one patient said:

"You have to do this because no one knows how you want to be treated, and they may be waiting for a cue. No one else will talk about it unless you do."

At the same time, remember that you don't have to be noble and heroic if you don't feel that way. Sometimes loved ones may want you to try to keep your feelings of sadness or anger inside because they can't face their own painful emotions; however, your feelings are important and need to be shared.

Facing the Challenge

It may be very hard to accept that your body is no longer as strong and reliable as it once was. As cancer progresses, you will not be as independent as you once were. This new dependence on others may affect your self-respect. Your role in the family and at work will change as well. When this happens, remember that the qualities that made you a good friend, loving parent, caring mate, or responsible worker haven't changed.

One woman had this to say about her feelings about herself:

"It shouldn't take a fatal diagnosis to find self-awareness, self-concern, and self-love. But, I'm afraid, for most of us, it does. I think I've straightened myself out in these areas. In fact, I've discovered that I'm a stronger person than I might have anticipated. I am just a bit gutsier than I thought, and I'm delighted to know that about myself."

You may be able to continue many of your regular activities, such as playing sports, doing volunteer work, or traveling. Advances in the ability to control pain and to administer needed medications and treatments outside the hospital can give those in the later stages of cancer more independence while receiving medical care.

Arranging family albums, scrapbooks, or hobby collections; working on a computer; or keeping a daily journal of your feelings and experiences are activities you can do if you are less active. Just remember to conserve your strength for the activities you really want to pursue.

Keep in mind that you can have control over many aspects of your life whether you are bedridden or not. You can make decisions about your care, your activities, food preferences, and what you need to make yourself comfortable. In the hospital, for example, you can wear your own clothes or use your own blanket and pillow. In some cases, you also may be able to participate in decisions about your schedule for resting, bathing, and so on.

Maintaining independence makes many patients feel better about themselves. However, well-meaning family and friends may try to make decisions for you, and sometimes you must rely on others for your care. When you face situations such as these, just remember: You know better than anyone what you need to make the most of each day.

Handling Your Emotions

As mentioned earlier, people who are dying from cancer may be sad, depressed, angry, scared, or all of these. These feelings are very human and natural. You already may be grieving for the loss of the person you were before you had cancer. As your friends will grieve for you, you now may be grieving for your loss of them.

You may be wondering what experiences you will miss in life, what the moment of death will be like, and whether you will continue to "be" after death. You may think about what will become of your family and friends and how these people will react to your death.

Don't bottle up your emotions. Letting feelings out will help relatives, friends, and caregivers understand your needs; may relieve some of your sadness, depression, or anger; and even may reduce physical discomfort. For some people, writing about emotions can help, and occasionally you may want to punch a pillow, scream, or have a good, long cry. Go ahead and express your feelings.

If you are feeling angry, it will help both you and others to understand that your anger may not be meant for them. You might even think of ways to make your anger work for you. For example, perhaps you can focus your energy on changing some aspect of your care that displeases you.

Many people with a terminal illness develop an interest in expressing or trying to resolve spiritual or religious issues. Even if you don't consider yourself a "religious person" or haven't taken part in religious services, you may find comfort in exploring spiritual matters with a friend, family member, or member of the clergy. For some, prayer and/or meditation can be a positive spiritual boost.

Talking It Over

Honest and open communication about your illness can help you in several ways. It can help those close to you understand how you want to be treated, and the weight of your problems may be lightened just by talking them over with a family member, a friend, or other cancer patients who may think of ideas to help comfort you. Sharing your feelings also may reduce stress.

You may find this kind of communication difficult, and it may be hard for others. Still, talking over your worries and concerns and knowing how your loved ones feel can give you strength and reassurance. To discuss these issues, try to choose people who are comfortable with your illness.

Let your friends and relatives know that they can offer comfort simply by being themselves, by listening without trying to solve problems, and by being at ease with you.

But keep in mind, not everyone can handle your suffering and loss. Friendships and family relationships may change — not because of you but because others may not be able to cope with their own emotional pain about your illness. If this is the case, you might want to talk to a member of your medical team or to someone trained in counseling, such as a nurse, social worker, psychologist, member of the clergy, or, if you are receiving care at home, a professional home health care worker. Also, you may find support by attending self-help groups where people meet to share common concerns. Your caregivers, hospital or a hospice can help find the right person or group for you.

Making the Unknown Known

Some say it is not death people fear but the days, weeks, or months that precede it. Many are afraid that there will be pain during this time and wonder if they will become a burden. Patients with a serious illness fear the unknown, isolation, abandonment, and loss of physical and emotional control. They worry about the future of those who will outlive them.

Understanding your condition can help you and your family resolve these fears. The more you learn about your condition and treatment, the more your fears of the unknown are reduced. Don't hesitate to ask your doctors, nurses, and other caregivers if there is something you want to know. Remember: It is your right to receive answers, even to the most direct questions about your future.

Sometimes your health care providers will seem hesitant to offer information. They may not be able to explain exactly what to expect. Or they may wait until you seem ready for the information. You can signal your readiness by asking specific questions — about your life, your illness, and about dying.

Try to include one or more relatives, friends, or others who are supportive in talks with your health care providers. If the health providers explain matters directly to your caregivers, your caregivers gain a clearer understanding of how they can help you, and their concerns can be eased.

Relieving Your Pain and Discomfort

Many people with cancer fear physical pain. However, not everyone with cancer has pain. And those who do have pain are not in pain all the time. If you have pain, it can be treated. Talk to your doctor or nurse about pain control. Don't wait until your pain is severe. Pain almost always can be lessened.

Cancer patients may have pain for a variety of reasons. Pain may be due to the cancer itself, or it could result from treatment methods. For example, after surgery, a person feels pain as a result of the operation itself. Sometimes, the pain is unrelated to the cancer, such as a muscle sprain, a toothache, or a headache. Whatever the cause, pain can be relieved. The best way to manage pain is to treat its cause. Whenever possible, the cause of the pain is treated by removing the tumor or decreasing its size. To do this, your doctor may suggest surgery, radiation therapy, or chemotherapy. However, your doctor may be more likely to recommend pain relief methods to control your pain. These methods include pain medicines, operations on nerves, nerve blocks, physical therapy, and techniques such as relaxation, distraction, and imagery.

Many people are reluctant to use pain medications for fear of becoming addicted. But taking medication to relieve pain will not make you an "addict." In fact, studies show that medically supervised use of narcotics (also known as analgesics) to control cancer pain does not cause addiction. Also, research shows that patients who take medication to prevent rather than reduce pain, tend to use less medication. And if the cause of your pain can be corrected, you will be able to stop taking your medications.

Physical therapy, biofeedback, relaxation techniques, self-hypnosis, and imagery also may help relieve pain. Other types of pain control include skin stimulation, pressure, vibration, massage, cold or warm compresses, menthol applied to the skin, and transcutaneous electric nerve stimulation. Some of these methods cause nerve endings to become numb in a specific area of the body, providing pain relief without the drowsiness caused by some pain medications. Special procedures that use anesthetics are available for the 10 to 15 percent of patients whose pain therapy is ineffective or causes severe side effects.

You know the most about your pain, such as where it is, how bad it is, what eases it, or what makes it feel worse. Your doctors and nurses rely on you to tell them about your pain. Together, you can decide which methods of relief might be best for you.

Don't hesitate to talk about your pain to your doctor or nurse. You have a right to the best pain control you can get. Relieving your pain means you can continue to do the everyday things that are important to you. For more inforation, see Questions and Answers About Pain Control: A Guide for People With Cancer and Their Families.

Feelings of Isolation

As cancer progresses, your life is disrupted. Social activities with family, friends, or coworkers become less frequent. Routines change because of treatments, visits to the doctor, or your need to rest.

These changes can lead to feelings of loneliness and isolation, even when you are surrounded by family and friends. One way to lessen these feelings is to live as normally as possible. Continue to do the things you always have done, such as hobbies, reading, walking the dog, or enjoying the company of children. Let your family and friends know that you want to continue with life as it was before. Encourage them, as much as you can, to carry on with their regular routines.

Don't hesitate to ask friends and relatives to visit if you are feeling up to it. They may want to stop by but may be afraid to contact you because they don't know what to say or how to act.

In spite of all your efforts, there will be days when you feel alone because you realize others cannot fully understand or share your experience. Some days you may simply want to be left alone, and that is okay too.

People who live alone or those who do not have family and friends close by may find an illness especially difficult. In these situations, some have found it easier to cope by having volunteers or caregivers visit. For others, the company of a pet often helps.

Talking with other people who have terminal cancer might provide the understanding and companionship you need. Joining a support group, where you can talk with other cancer patients, is another way to ease feelings of isolation.

At times you may need to rely on yourself for encourage-ment. If this happens, try to focus on the pleasures you can give yourself, such as a leisurely walk, a beautiful bouquet of flowers, or a good book. Draw on your own strength and try to be your own best friend.

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