You have the right to determine who is given information about you. Your doctor (and hopefully any other practitioner) is ethically obliged to get your permission before giving information to anyone else. It is usual to take your permission for granted in the case of other health professionals directly involved in your case. For example, other doctors, nurses, social workers, physiotherapists and so on who are personally involved in your care would not usually need formal permission to have medical and other relevant information about you. Each of these health professionals, however, is obliged to treat such information as completely confidential. They are not entitled to tell any of it to anyone else without your specific permission. The only other circumstance in which your doctor could take your permission for granted is when you bring a friend or relative into the consulting room with you. However, the doctor must still obtain your permission to give information even to these people when you ìØ not present.

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Transitions, whether good or bad, bring stress. A change in job, marriage status, number of children in the home, living arrangements, or stage of schooling brings stress. Completing treatment marks a significant transition. There are decisions and adjustments to make and uncertainties to face. Everyone’s role and responsibilities may change. The routine that was established during the course of treatment may now be altered.

Since aggressive treatment is now over, repressed emotions may come to the surface. For the first time, family members may express anger, frustration, fear, and depression. They would not allow themselves to feel pessimistic, anxious, or depressed while you were sick, because they felt they had to be “up” for everyone’s sake. Now that you are out of danger, they feel they can “let down” and allow all the pent-up feelings to come out.

Everyone is tired after your ordeal. When people are tired, they are less patient, less rational, less understanding.

If Members of My Family Seem Overly Concerned about Their Own Health, What Should I Do?

A family member with a possible medical problem should be encouraged to undergo evaluation by a trusted doctor as soon as possible. Remind him or her that an objective professional evaluation is in everyone’s best interest whether or not a significant problem exists. They will either get attention to a problem when it is most treatable or be reassured that no significant problem exists.

If family members seem too concerned about their diet, environmental exposures, or levels of stress, validate their health concerns as a normal aftereffect of living with cancer and its treatment. Family members’ attention to their lifestyle is one way for them to regain a sense of control over their health.

How Do I Deal with Other People?

You have to take the lead in teaching family, friends, and acquaintances how best to help you and deal with you. Be direct. Tell people,

•”I appreciate your asking how I’m doing” or “It would make it easier if you didn’t ask me how I’m doing all the time, and let me tell you when something is happening, or when I feel like talking.”

•”I still need help doing things and appreciate your willingness to continue to help me” or “I feel that I can do things myself now, and I feel better when you encourage me to do things

myself.”

•”It helps me to talk about my cancer experience and the issues with which I’m now dealing” or “It helps me not to talk about my cancer experience and to try to focus on other things.”

•”I need space and quiet time” or “I need company and activities.”

What helps you or hurts you may change from day to day, or even hour to hour. Sometimes you may not be sure what you want or need. Let your friends and family know that you appreciate their concern and recognize that it is sometimes hard to know how to relate.

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At times it is helpful to be able to control bodily functions such as muscle tension. Muscle tension can cause severe headaches or can increase pain near a surgical site. Muscle tension is not something that you can easily measure just by looking at or feeling your muscle. Biofeedback is a technique that overcomes the limits of your senses by using a machine to give you information about your muscle tension in a signal that is easy for you to measure. Sensors attached to your shoulders, for example, measure the tension in the underlying muscles. The measurement of muscle tension is converted to a signal such as sound, light, or a line on a graph. As your muscle tension gets higher, the sound gets louder, the light gets brighter, or the line goes higher on the graph. You use this information to learn how to reduce your muscle tension. With time and practice, you can learn how to respond to the subtle information from your leg muscles on your own, without the amplification provided by the biofeedback equipment.

Biofeedback has been used successfully for years to control many types of headache, irritable bowel, high and low blood pressure, seizures, muscle weakness, and circulation problems.

Since the physical changes that accompany stress can worsen your pain and your perception of it, learning to counteract your body’s stress response is helpful. Biofeedback can help you recognize and counteract your physical responses to stress and anxiety.

For example, one woman had bone pain in her leg after her cancer surgery. Whenever her bone hurt, she became anxious that her cancer was back. Her anxiety would cause her to tense her leg muscles unconsciously, which would cause her pain to increase. By learning to relax her muscles through biofeedback, she decreased her pain significantly without adding pain medicines. Relaxing her muscles also helped her block the vicious pain-anxiety-pain cycle without resorting to tranquilizers.

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•obtaining knowledge about your situation so that you do not worry about things that are not likely to happen

•obtaining information about how to minimize your chance of recurrence by modifying your diet, exercise, medications, and whatever else applies to your situation

•obtaining knowledge of how to participate in the surveillance of your condition (what things to look for that could indicate a problem)

• being willing to have potential problems evaluated

• distracting yourself from the fear by focusing on today and on things you enjoy

• accepting the reality that fearful thoughts will occur

• training yourself to shut off the fearful thoughts (“If I have a recurrence, I will deal with the circumstances at that time”) or to distract yourself from fearful thoughts by thinking about something pleasant or neutral

•reminding yourself that recurrence is not a death sentence; that you were treated successfully before and can be treated successfully again; that although the idea of repeat cancer treatment may be overwhelming right now, you could handle it again if faced with recurrence; and that advances make cancer treatment more effective and tolerable every year

•ventilating your fears to appropriate others, such as cancer survivors, loved ones, clergy, or professional counselors.

Fear will not help you today or tomorrow. Untamed fear ruins good times. The taming of fear frees you to live a better life.

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Anger is real. Persistent, unresolved anger helps no one and can lead to depression and social problems. You must come to understand what you are angry about and then take steps to dissipate the anger. One way for believers to help resolve anger is through the power of Reinhold Niebuhr’s serenity prayer:

God, grant me serenity

to accept the things I cannot change

courage to change the things I can

and wisdom to know the difference

In addition, it will help if you learn to

•accept that many people do not understand what you need at this time and to appreciate it when their intentions are good

•sacrifice some comforts, opportunities, and hopes, at least for the time being, until your life is more settled (be willing to decline party invitations, job offers, or hobby-related outings that would overtax your emotional and physical reserves)

• share your anger in a safe place

•express your anger in writing, singing, drawing, music, or other medium

• accept yourself with your anger; accept yourself with any things you did in the past that may be making you angry; take responsibility for managing your anger

Unresolved anger does not help anyone and can lead to depression and social problems.

What If I Feel Sad?

Sadness is a feeling of unhappiness. Disappointment, grief, fatigue, and loneliness can all cause you to feel sad. Contrary to what people expect, you may experience your most intense sadness after treatment is completed.

Sadness may stem from disappointment in yourself or others at how things were handled during your treatment or how things are going now. One way many people get through the stresses and discomforts of cancer treatment is to focus on how good things will be when the treatment is over. If your life after cancer is a far cry from the inspirational, idealized images on which you focused during your treatments, you inadvertently set yourself up for disappointment once your treatment has ended.

Another critical reason for this posttreatment sadness is grief. After the intensity and routine of cancer treatments are over, you are left with all of your big and little losses to grieve. You may have lost

• your illusion of good health and safety

• a body part, such as a breast, a limb, or your voice

• a bodily function, such as mobility or fertility

• your normal energy

• time that you had planned to use doing something other than treat cancer

• the predictability of some relationships

• your appetite, your enjoyment of food

• your normal appearance

• insurance

• financial security

• expected opportunities at work, in school, or socially

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After completion of cancer therapy, you may need medication to treat

• temporary side effects from your cancer

• temporary side effects from your cancer treatment

• permanent changes due to your cancer

• permanent changes due to your treatment

For example, you may need medications for treatment of

• nausea, poor appetite

• pain

• mouth ulcers

• stomach or duodenal ulcers

• infection

• malnutrition

• hormonal imbalance

• constipation or diarrhea

• cough or asthma

• dizziness

• sleep disturbance

• depression

• anxiety

How Can I Keep Track of My Medicines?

Taking your medicines properly is an important part of recovery, just as it was of treatment. If you are taking more than one medicine or are taking medicines more than once a day, you will do well to buy a “pill minder” to organize your pills. The pill minder

• serves as a daily reminder to take your pills

• serves as a daily check that you have taken your pills

•lets you know whether you are running low on your pills (if you run out of medicine as you fill your pill minder for the following week, you can get a refill without missing a dose)

You should also keep a log of changes in your medications. If the dose of one of your routine medicines is changed, record the date and change in dose. If you are given a course of new medication, record the dates started and stopped, as well as the drug name, dose, and frequency of administration.

Details about your use of medicines are very important for evaluations of your condition and for decisions about further tests or treatments.

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