Taking Time: Support for People With Cancer by National Cancer Institute. - HTML preview

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Support for People With Cancer

Taking Time

National Cancer Institute

U.S. DEPARTMENT

OF HEALTH AND

HUMAN SERVICES

National Institutes

of Health

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For more information . . .

This booklet is only one of many free booklets for people with

cancer. Here are some others you and your loved ones may

find useful:

Biological Therapy

Chemotherapy and You

Coping With Advanced Cancer

Eating Hints for Cancer Patients

Taking Part in Cancer Treatment Research Studies

Pain Control

Radiation Therapy and You

Thinking About Complementary and Alternative Medicine

When Cancer Returns

When Someone You Love Is Being Treated for Cancer

When Someone You Love Has Advanced Cancer

When Your Brother or Sister Has Cancer: A Guide for Teens

When Your Parent Has Cancer: A Guide for Teens

These free booklets are available from the National Cancer

Institute (NCI). NCI is a Federal agency that is part of the

National Institutes of Health. To order or download, call

1-800-4-CANCER (1-800-422-6237) or visit http://www.cancer.gov.

For information about your specific type of cancer,

see NCI’s Physican Data Query (PDQ®) database at

http://www.cancer.gov. From the home page, it is listed under “Cancer Topics.”

We would like to offer our sincerest gratitude

to the extraordinary caregivers, health

professionals, and scientists who contributed to

the development and review of this publication.

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Taking Time

Support for People With Cancer

This book was written for you—

the person with cancer.

Where are you in this challenge?

You may have just learned that you have cancer.

Or you may be in treatment.

At every point, most likely you have a range of feelings.

It’s important to try to accept these feelings and learn how

to live with them as best as you can.

Feelings about your cancer may be with you for a long time.

This book is for you, but it can also be helpful to those people

who are close to you. It may help them better understand

what you are going through. And even if you have

no close relatives or live far away from your family,

you may have friends who you think of as your “family.”

Whatever “family” means to you, share this book

with those who love and care about you.

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No one knows the story of tomorrow’s dawn.

—Ashanti (African) Proverb

Introduction

Cancer will change your life.

Millions of Americans alive today have a history of cancer. For them, cancer has become a chronic (on-going) health problem, like high blood pressure or diabetes.

Just like everyone, people who have cancer must get regular checkups for the rest of their lives, even after treatment ends. But unlike other chronic health problems, if you have cancer you probably won’t need to take medicine or eat special foods once you have finished treatment.

If you have cancer, you may notice every ache, pain, or sign of illness. Even little aches may make you worry. You may even think about dying. While it’s normal to think these thoughts, it’s also important to focus on living. Although some people do die of it, many with the disease are treated successfully. Others will live a long time before dying from it. So, try to make the most of each day while living with cancer and its treatment.

People respond to cancer in many ways.

This book was written to help you learn from other people with cancer. Many people have helped write this book—patients, their family members, and friends.

You will see their comments in all sections of the book. Finding out how others respond to cancer might help you understand your own feelings. And learning how others manage the special problems that cancer brings might help you find ways to cope with the problems that come along for you.

How to use this book

No two people are alike. Some chapters of this book may apply to your situation and others may not. Read the chapters that have meaning to you. The other chapters may be useful later on.

This book is divided into seven chapters, plus a resource section at the end. Use the Table of Contents to find the section of the book that’s most important to you during your treatment. Each chapter begins with a “Read This First” box, which tells you what is in that chapter. In addition, each chapter ends with a “Summing Up” box, which repeats the key ideas in that chapter.

As you read this booklet, remember, right now—it’s all about you!

Table of Contents

1. Your feelings: Learning you have cancer .........................................................1

Hope ..............................................................................................................................2

Denial ............................................................................................................................3

Anger .............................................................................................................................3

Fear and worry ............................................................................................................4

Stress .............................................................................................................................5

Pain ................................................................................................................................6

Control and self-esteem .............................................................................................7

Sadness and depression .............................................................................................8

Guilt ...............................................................................................................................9

Loneliness ...................................................................................................................10

Gratitude ....................................................................................................................11

Summing up: learning you have cancer ................................................................11

2. Family matters .....................................................................................................13

Changes to your roles in the family ........................................................................14

Spouses and partners ...............................................................................................16

Children ......................................................................................................................17

Adult children ............................................................................................................20

Parents.........................................................................................................................22

Close friends ...............................................................................................................22

Summing up: cancer and your family ....................................................................23

3. Sharing your feelings about cancer ................................................................25

Your friends and family have feelings about your cancer ...................................25

Finding a good listener .............................................................................................26

Choosing a good time to talk ...................................................................................26

Expressing anger........................................................................................................27

Be true to your feelings .............................................................................................28

Sharing without talking ............................................................................................28

Summing up: sharing your thoughts and feelings about cancer .......................29

4. Talking to your health care team ....................................................................31

Learning from your health care providers .............................................................32

Learning about your treatment choices .................................................................33

Learning more about your cancer ...........................................................................34

Summing up: learning about your cancer and regaining control .......................35

5. People helping people........................................................................................37

Family and friends ....................................................................................................38

Other people who have cancer ...............................................................................38

Support groups ...........................................................................................................39

Spiritual help .............................................................................................................41

People in health care .................................................................................................42

People in the hospital ...............................................................................................45

Caregivers ...................................................................................................................46

Summing up: people helping people ......................................................................49

6. Dealing with a new self-image .........................................................................51

Fatigue .........................................................................................................................52

Your self-image ..........................................................................................................52

Staying active .............................................................................................................53

Getting help ...............................................................................................................53

Facing cancer with your spouse or partner ..........................................................54

Dating .........................................................................................................................55

Summing up: dealing with a new self-image ........................................................56

7. Living each day .....................................................................................................57

Keeping up with your daily routine ........................................................................59

Working .......................................................................................................................60

Handling money worries ..........................................................................................62

Thinking about the future ........................................................................................63

Advance Directives ....................................................................................................63

After treatment is over .............................................................................................64

Summing up: Living each day ..................................................................................64

Resources for learning more ..................................................................................65

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vi

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Chapter 1

Your feelings:

Learning you have cancer

You will have many feelings after you learn that you have cancer. These feelings can change from day to day, hour to hour, or even minute to minute.

Some of the feelings you may go through include:

■ hope

■ denial

■ anger

■ fear

■ stress

■ depression

■ sadness

■ guilt

■ loneliness

■ gratitude

All these feelings are normal.

“I heard the doctor say, ‘I’m sorry; the

test results show that you have cancer.’

I heard nothing else. My mind went blank,

and then I kept thinking, ‘No, there must be

some mistake.’”

1

Learning that you have cancer can come as a shock. How did you react? You may have felt numb, frightened, or angry. You may not have believed what the doctor was saying. You may have felt all alone, even if your friends and family were in the same room with you. These feelings are normal.

For many people, the first few weeks after diagnosis are very hard. After you hear the word “cancer,” you may have trouble breathing or listening to what is being said. When you’re at home, you may have trouble thinking, eating, or sleeping.

People with cancer and those close to them experience a wide range of feelings and emotions. These feelings can change often and without warning.

At times, you may:

■ be angry, afraid, or worried

■ not really believe that you have cancer

■ feel out of control and not able to care for yourself

■ be sad, guilty, or lonely

■ have a strong sense of hope for the future

This chapter looks at many of the feelings that come up when people find out they have cancer.

Hope

Once people accept that they have cancer, they often feel a sense of hope. There are many reasons to feel hopeful.

■ Cancer treatment can be successful. Millions of people who have had

cancer are alive today.

■ People with cancer can lead active lives, even during treatment.

■ Your chances of living with—and living beyond—cancer are better now

than they have ever been before. People often live for many years after their cancer treatment is over.

Some doctors think that hope may help your body deal with cancer. Scientists are looking at the question of whether a hopeful outlook and positive attitude helps people feel better.

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Here are some ways you can build your sense of hope:

■ Write down your hopeful feelings and talk about them with others.

■ Plan your days as you have always done.

■■ Don’t limit the things you like to do just because you have cancer.

■■ Look for reasons to hope.

You may find hope in nature, or your religious or spiritual beliefs. Or you may find hope in stories (such as the ones in this book) about people with cancer who are leading active lives.

However long the night, the dawn will break.

—Hausa (African) Proverb

Denial

When you were first diagnosed, you may have had trouble believing or accepting the fact that you have cancer. This is called denial. It can be helpful because it can give you time to adjust to your diagnosis. Denial can also give you time to feel hopeful and better about the future.

Sometimes, denial is a serious problem. If it lasts too long, it can keep you from getting the treatment you need. It can also be a problem when other people deny that you have cancer, even after you have accepted it.

The good news is that most people (those with cancer as well as those they love and care about) work through denial. Usually by the time treatment begins, most people accept the fact that they have cancer.

Anger

Once you accept that you have cancer, you may feel angry and scared.

It’s normal to ask “Why me?” and be angry at:

■ the cancer

■ your health care providers

■ your healthy friends and loved ones

And if you’re religious, you might even be angry with God.

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Anger sometimes comes from feelings that are hard to show—such as fear, panic, frustration, anxiety, or helplessness. If you feel angry, don’t pretend that everything is okay. Talk with your family and friends about it. Most of the time,

talking will help you feel a lot better. (See Chapter 3, “Sharing Your Feelings

About Cancer.”)

Fear and worry

“The word ‘cancer’ frightens everyone I know.

It’s a diagnosis that most people fear more than

any other.”

It’s scary to hear that you have cancer. You may be afraid or worried about:

■ being in pain, either from the cancer or the treatment

■ feeling sick or looking different as a result of your treatment

■ taking care of your family

■ paying your bills

■ keeping your job

■ dying

Your family and close friends may also worry about:

■■ seeing you upset or in pain

■■ not giving you enough support, love, and understanding

■■ living without you

Some fears about cancer are based on stories, rumors, and old information. Most people feel better when they know what to expect. They feel less afraid when they learn about cancer and its treatment. As one man with prostate cancer said:

“I read as much as I can find about my cancer.

Imagining the worst is scarier than knowing

what might happen. Having all the facts makes

me much less afraid.”

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Stress

Your body may react to the stress and worry of having cancer. You may

notice that:

■ your heart beats faster

■ you have headaches or muscle pains

■ you don’t feel like eating, or you eat more

■ you feel sick to your stomach or have diarrhea

■ you feel shaky, weak, or dizzy

■ you have a tight feeling in your throat and chest

■ you sleep too much or too little

■ you find it hard to concentrate

Stress can also keep your body from fighting disease as well as it should.

You can learn to handle stress in many ways, like:

■ exercising

■■ listening to music

■■ reading books, poems, or magazines

■■ getting involved in hobbies such as music or crafts

■ relaxing or meditating, such as lying down and slowly breathing in and out

■ talking about your feelings with family and close friends

If you’re concerned about stress, talk to your doctor. He or she can suggest a social worker or a counselor. You could also find a class that teaches people ways of dealing with stress. The key is to find ways to control stress and not to let it control you.

Talking to one another is loving one another.

—Kenyan Proverb

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Pain

Even though almost everyone worries about pain, it may not be a problem for you. Some people don’t have any pain. Others have it only once in a while. Cancer pain can almost always be relieved. If you’re in pain, your doctor can suggest ways to help you feel better. These include:

■ prescription or over-the-counter medicines

■ cold packs or heating pads

■ relaxation, like getting a massage or listening to soothing music

■ imagery, such as thinking about a place where you feel happy and calm

■ distraction, like watching a movie, working on a hobby, or anything that helps take your mind off your pain

There are many ways to control pain. Your doctor wants and needs to hear about your pain. As soon as you have pain you should speak up. Dealing with your pain can also help you cope with the feelings discussed in this chapter.

When you describe your pain to your healt