f)0 you feel that if you ask too many questions the practitioner will label you as a ‘troublemaker’? This can happen. I would say this: a practitioner who would call an anxious, responsible, questioning adult a ‘troublemaker’ is not the sort of person I would trust to give me unbiased information and advice, let alone make decisions on my behalf. If your practitioner is like this, then all the more reason for insisting on enough information to make decisions yourself. Alternatively, you may well think it is a very good reason to find another practitioner. I certainly would.

*8/40/1*

Cancer survivors often benefit from assistance during cancer treatments. Even after your treatments have ended, the physical effects and emotional strain continue for a variable period of time. In effect, your body is still under treatment at a time that your physical and emotional reserves are depleted. Getting help now will conserve your reserves and allow you to focus your energy on getting well again. You will spare yourself unnecessary frustration and disappointment if you learn from others the ins and outs of recovery instead of trying to discover everything for yourself.

Asking for help is a sign of courage and control. Asking for help provides others the opportunity to feel fulfilled. Asking for help promotes everyone’s recovery.

What Kind of Help Do I Need?

Depending on your circumstances, you may benefit from

• continued practical help until you are stronger—for example, with meals or carpooling

• information about your current condition, your options regarding further treatment and prevention of future medical problems, and factors that will speed your recovery both physically and emotionally

• advice about coping with the physical, emotional, social, and spiritual changes

• emotional support

Where Do I Get Help?

Talk to your family and friends. Despite how you feel, it may not be obvious to them that you need help or how they can provide it. Although your needs may be less obvious than they were when you were first diagnosed, they are no less real. If you do not make them clear, family and friends who would have wanted to help may disappear from the helping scene out of ignorance. Asking for help when you need it will speed your recovery, which will benefit everyone. Allowing people to help offers them an opportunity to do something fulfilling. You help others by asking for help.

Local cancer support groups are a valuable resource. Other survivors will be able to listen to and understand your feelings and concerns, and offer real advice on how best to get and stay well.

Social workers, counselors, clergy, and psychologists can spare you unnecessary or prolonged periods of grief, depression, and anxiety by helping you define the problems and outline healthy solutions. There are some definite advantages for everyone if you work with a professional who is not personally involved in your home or family. The distance allows him or her to see and advice in areas that are too sensitive for family or friends.

Other woefully underutilized resources are the local and national hotlines, information clearinghouses, and support groups. They all provide information and support. When they cannot answer your question or need themselves, they can direct you to the resource that can. Information and contact numbers for support services can be obtained from your hospital’s oncology department, or by calling the Cancer Information Service. This will connect you to the Cancer Council, Foundation or Society in your state.

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Pain can generate concern about recurrent cancer or the development of a new medical problem. If you have completed therapy only recently, there has not been time to build up the experience of having pains that are unrelated to cancer or its treatments. Pain can cause you to anticipate seeing a doctor. This anticipation can evoke many of the anxieties seen in “checkup anxiety” Many people have the misconception that cancer is usually a painful disease. When pain develops for whatever reason, you may fear that the pain is due to cancer and is the harbinger of greater pain. Many times this thought process works at a subconscious level.

How Does Anxiety Affect Pain?

Anxiety and pain feed each other in a vicious cycle. If your pain causes you to feel anxious, this anxiety can increase your perception of the pain; this increased perception of pain can cause increased anxiety; and so on.

Anxiety alone can create pain. Anxiety and uncertainty about your health may lead you to such a degree of self-monitoring that you are aware of every little change or sensation. Under normal circumstances a minor symptom would be noticed and then ignored, or not even perceived in the first place. Under circumstances of intense self-vigilance a minor symptom tends to be detected and even amplified. Anxiety about its significance and fear of progressive pain will increase both your anxiety and your level of pain.

If you have no medical problems with swallowing and no symptoms related to swallowing, try this simple experiment to demonstrate how pain and anxiety are related: pay attention to your swallowing for the next two minutes. Swallowing your saliva triggers a sequence of muscle contractions in the esophagus. If you pay attention to your normal swallowing, you become aware of sensations that are normally ignored. Intense concentration may even make it more difficult to initiate a swallow deliberately.

Simply paying attention to your body has altered your perception and created a symptom (difficulty in swallowing). Now, to take this experiment one step further, imagine that you are worried that your difficulty in swallowing saliva can mean that you have a serious medical problem. Anxiety about what your symptom means, added to your already heightened awareness of the symptom, magnifies your perception of the symptom and your anxiety level.

Just as your attention to and anxiety about a symptom can amplify your symptom and anxiety, your learning to distract yourself from the symptom and decrease your anxiety can bring relief. After cancer, symptom management includes breaking the vicious cycle of anxiety-pain.

Obviously, this approach is applicable only in the management of pain or symptoms that are not new and that have been properly evaluated. Your anxiety about a symptom is valuable in getting your attention and pushing you to have the symptom evaluated. Once you have done that, the anxiety is no longer serving a beneficial function and becomes counterproductive.

Anxiety is beneficial when it helps you do the right things. It is counterproductive if it persists after you do all the right things to take care of the anxiety-provoking problem.

What Makes Pain Worse?

Depending on the physical cause of the pain, factors that can affect the type or amount of pain you experience include

•activities such as walking, maintaining a certain position, or eating certain foods

• weather conditions

• bowel or bladder function

• hormonal balance

• fatigue

• anxiety

• sleep deprivation

• depression

• deconditioning

• malnutrition

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On some level, you knew from the beginning of your treatment that if your cancer was not sensitive to the therapy, you could die from the cancer. You may even have joked about the harshness of your cancer treatments or your losses by saying, “The alternative is worse.”

During treatment you focused on getting through the treatments and dealing with all the short-term practical issues. Now that the immediate risk of death by cancer is past, you may experience your underlying great fears. In an analogous situation a person is involved in a near-fatal car accident, survives because of level-headed defensive driving, and then walks away only to faint from fright after the danger is past. Or someone resuscitates a near-drowned child with calm and expertise and then falls to pieces as the now safe child is taken away.

You did what you had to do during your crisis of cancer. Now that your crisis is over, you acknowledge and experience the fear of your brush with death.

Fear of the unknown is common. Your future is a big unknown. The inability to know your future can cause fear, especially since you glimpsed potential futures when you learned about your cancer and saw other cancer survivors who were not doing well.

Fear can be a recurring emotion after you have been treated for cancer. It can take many forms—fear of recurrence, fear of death, fear of bodily injury or loss, fear of doctors, fear of financial hardship or ruin, and fear of embarrassment. Fear is paralyzing and painful. You must learn to recognize your fear, understand it, and tame it so that your cancer history does not define or control you.

How Do I Tame My Fears?

First, figure out what you are afraid of. Is it death, recurrence, future medical problems, rejection or abandonment by family (or friends, or co-workers, or health care workers), or financial problems? Second, share your fears with your family, friends, other cancer survivors, clergy, counselors, or support group.

Get information about the things you fear. Knowledge may

• eliminate fears that were based on misinformation

• allow you to maximize control over things you fear

• teach you a way to live with your fears

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One man in remission felt depressed about his patch of baldness from radiation and fatigued from walking with a limp caused by a healing fracture. Then he saw a man who was terminally ill. Realizing how well he was doing overall, he suddenly felt grateful and energized.

A young newlywed felt exhilarated because for the first time since her bone marrow transplant she felt well enough to prepare a candlelight dinner for her husband. When the roast came out overcooked, she plummeted to despondency.

Another source of confusion is that you have lost the direction, structure, and focus that treatments gave your days and weeks. If you have not settled into a new routine, you are uncertain about what you should be doing. If you have ongoing medical problems, it may be a while before you can find a new routine.

Many basic questions arise after treatment that cause confusion: How healthy am I? Who is my primary caregiver? What is my role at home? How much can I do? How much should I do? How much do I want to do? What can I do? Uncertainty about these elemental questions leads to a sense of confusion.

While you were under treatment, your physical condition and the advice of your doctors and nurses helped determine your limits. Now your side effects may be less obvious and less consistent, and concrete advice about your limits may be lacking. Bewilderment arises from the need to draw limits but not knowing where or how to draw them.

You may be faced with many difficult decisions related to treatments, follow-ups, work or school, insurance, and possibly even relationships with family, friends, and co-workers. Fatigue, anxiety, and pain may make it more difficult to address these pressing issues. If you are finding it hard to prioritize, you may be trying to address many different issues at once. This leads to a clouding of the issues.

As a result of your ever-changing energy level, you may unknowingly be sending your family and friends mixed signals about whether you want extra help or can be expected to resume your old responsibilities. At the same time, their attempts to be sensitive may be sending you mixed signals about their concern and expectations and thereby causing you to feel puzzled.

Your medical condition may have lingering effects on your attention and memory, making it difficult for you to process all this information and responsibility. Some medicines cause confusion, as does sleep deprivation.

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Much as you may want to forget that you had cancer, it is to your advantage to think about your cancer occasionally. You may be at risk of recurrent cancer. You are at risk of developing cancer that is totally unrelated to your prior cancer (having cancer does not make you immune to other types of cancer). You may be at risk for future medical problems related to your cancer or your treatments. Learning about your cancer may enable you to decrease your risks.

Every year new information becomes available about

• the causes of cancer

• the prevention, diagnosis, treatment, and follow-up of cancer

• the prevention and treatment of aftereffects

Doing research on cancer is not for everyone. You may be someone who works best with your doctors by leaving all the decision making to them. You participate in your care by being faithful with checkups and coming in for any new problems. Trying to learn about the medical issues just causes anxiety and confusion, and does not help you. Your doctors will let you know what you need to know.

On the other hand, you may feel most comfortable learning as much as you can about your cancer. You may prefer to play a more active role in the gathering and processing of information and in the decision making. Continued learning allows you to be as involved as you desire.

Keeping up will help you discuss advances that affect you. For instance, a new screening test may become available for diagnosing a recurrence of your type of cancer. If you are knowledgeable about it, you can participate in the decision of when and how to use it.

In many circumstances your personal needs and desires are a little different from what is routinely recommended for patients in your situation. You may be very interested in participating in a clinical trial, no matter what the expense, risk, or inconvenience. Since it is impossible for your oncologist to keep up with every available trial for every type of cancer, you may want to do some research yourself.

At every visit your doctor draws conclusions and gives advice. Your doctor can arrive at his or her recommendations with as little or as much input from you as you like. Use your knowledge, be it a little or a lot, to be partners with your doctor. But remember the old adage that you cannot be your own doctor. Share your questions and information with your doctor, and let him or her come to a conclusion. You are best served if, ultimately, you trust your doctor’s advice.

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