Get Your Free Goodie Box here

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

PLEASE NOTE: This is an HTML preview only and some elements such as links or page numbers may be incorrect.
Download the book in PDF, ePub, Kindle for a complete version.

All your questions are important and deserve an answer. It’s okay to ask the same question more than once. It’s also okay to ask your doctor to use simpler words and explain terms that are new to you. To make sure you understand, use your own words to repeat back what you heard the doctor say.

Take someone with you when you see the doctor.

Ask a family member or friend to go with you when you see your doctor. This person can help by listening, taking notes, and asking questions. Later, you can both talk about what the doctor had to say. If you can’t find someone to go with you, ask your doctor if he or she will talk with a friend or family member over the phone.

32

index-41_1.jpg

Take notes or record your conversation with your doctor.

Many patients have trouble remembering what they talk about with their doctor.

Ask if you can take notes or make a recording. Review these notes or listen to the tape later. This can help you remember what you talked about. You might also want to let your family and friends see these notes so that they, too, can learn what the doctor had to say.

Every road has two directions.

—Russian Proverb

Learning about your treatment choices

You can learn about your treatment choices by:

■ asking your doctor

■ getting a second opinion

■ calling the Cancer Information Service (see below)

■ reading about your type of cancer on the Internet

Ask your doctor to tell you about your treatment choices. Sometimes there is more than one treatment that can help. Ask how each treatment can help and what side effects (reactions to the treatment) you might have. If your doctor asks you to choose which treatment you want, try to learn all you can about each choice. Let your doctor know if you need more time to think about these issues before your treatment begins.

Get a second opinion from a doctor who takes care of cancer patients (an oncologist). The oncologist may agree with your first doctor’s treatment plan. Or he or she may suggest something else. Many health insurance plans pay for a second opinion. Read your policy, call your insurance company, or speak with a social worker to learn if your insurance plan will pay for a second opinion.

Call the Cancer Information Service at 1-800-4-CANCER (1-800-422-6237) or TTY (for deaf and hard of hearing callers) at 1-800-332-8615. They can answer questions and send you information about treatment choices for different kinds of cancer.

33

index-42_1.jpg

Read about your type of cancer on the National Cancer Institute web site at

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.”

Learning more about your cancer

There are many other ways to learn about your cancer. You can read books or journal articles or search for information on the Internet. Make sure, however, to talk with your doctor about what you learn. He or she can explain what you don’t understand and let you know if anything is untrue or not useful for you. Here are some ways to get more information about cancer:

■ Ask your doctor for printed materials (such as booklets or fact sheets) about your type of cancer or about cancer in general.

■ Look for cancer information at your public library or visit a library for patients and family members at your local hospital or medical school.

■ Call your hospital and ask if they have cancer programs for patients and family members. Many hospitals offer classes and support groups.

■ Search the Internet. The National Cancer Institute web site at

http://www.cancer.gov is a good place to start. If you do not have a computer at home, most public libraries have computers you can use.

For more details, see the NCI fact sheet, “Evaluating Online Sources of Health Information,” at http://www.cancer.gov, search term “internet.”

■ Contact the Cancer Information Service (see above).

When you see clouds gathering, prepare to catch rainwater.

—Gola (African) Proverb

34

Summing up: Learning about your cancer and

regaining control

When you find out you have cancer, you may feel that your life is no longer within your control. As if daily life is turned upside down.

For many people, regaining a sense of control begins by learning as much as they can about their cancer. Talk to your doctor and nurses. Seek information from the library, the Internet, and the Cancer Information Service to help you learn about your type of cancer and its treatment.

35

index-44_1.jpg

index-44_2.jpg

index-44_3.jpg

index-44_4.jpg

index-44_5.jpg

index-44_6.jpg

index-44_7.jpg

36

index-45_1.jpg

Chapter 5

People helping people

Even though your needs are greater when you have cancer, it can be hard to ask for help to meet those needs.

To get the help you need, think about turning to:

■ family and friends

■ others who also have cancer

■ people you meet in support groups

■ people from your spiritual or religious community

■ health care providers

■ caregivers

No one needs to face cancer alone. When people with cancer seek and receive help from others, they often find it easier to cope.

You may find it hard to ask for or accept help. After all, you are used to taking care of yourself. Maybe you think that asking for help is a sign of weakness. Or perhaps you don’t want to let others know that some things are hard for you to do. All these feelings are normal. As one man with cancer said:

“I had always been the strong one. Now I had to turn to

others for help. It wasn’t easy at first, but the support

of others helped me get through a lot of hard times.”

People feel good when they help others. However, your friends may not know what to say or how to act when they’re with you. Some people may even avoid you. But they may feel more at ease when you ask them something specific, like to cook a meal or pick up your children after school. There are many ways that family, friends, other patients, spiritual or religious leaders, and health care providers can help. In turn, there are also ways you can help and support your caregivers.

37

index-46_1.jpg

Family and friends

Family and friends can support you in many ways. But, they may wait for you to give them hints or ideas about what to do. Someone who is not sure if you want company may call “just to see how things are going.” When someone says, “Let me know if there’s anything I can do,” be honest. For example, tell this person if you need help with an errand or a ride to the doctor’s office.

Family members and friends can also:

■ keep you company, give you a hug, or hold your hand

■ listen as you talk about your hopes and fears

■ help with rides, meals, errands, or household chores

■ go with you to doctor’s visits or treatment sessions

■ tell other friends and family members ways they can help

To know the road ahead, ask those coming back.

—Chinese Proverb

Other people who have cancer

Even though your family and friends help, you may also want to meet people who have cancer now or have had it in the past. Often, you can talk with them about things you can’t discuss with others. People with cancer understand how you feel and can:

■ talk with you about what to expect

■ tell you how they cope with cancer and live a normal life

■ help you learn ways to enjoy each day

■ give you hope for the future

Let your doctor or nurse know that you want to meet other people with cancer.

You can also meet other people with cancer in the hospital, at your doctor’s office, or through a cancer support group.

38

index-47_1.jpg

Support groups

Cancer support groups are meetings for people with cancer and those touched by cancer. They can be in person, by phone, or on the Internet (see next page).

These groups allow you and your loved ones to talk with others facing the same problems. Some support groups have a lecture as well as time to talk. Almost all groups have a leader who runs the meeting. The leader can be someone with cancer or a counselor or social worker.

You may think that a support group is not right for you. Maybe you think that a group won’t help or that you don’t want to talk with others about your feelings.

Or perhaps you’re afraid that the meetings will make you sad or depressed.

Support groups may not be for everyone. Some people choose to find support in other ways. But many people find them very helpful. People in the groups often:

■ talk about what it’s like to have cancer

■ help each other feel better, more hopeful, and not so alone

■ learn about what’s new in cancer treatment

■ share tips about ways to cope with cancer

As one woman said:

“I can’t tell you what a pleasure it was when I first

sat down with other cancer patients and heard my own

fears, worries, and joys coming from their lips. You can

be completely honest with these people. I’d leave some of

these sessions almost dizzy with relief.”

Types of support groups

■ Some groups focus on all kinds of cancer. Others talk about just one kind, such as a group for women with breast cancer or a group for men with

prostate cancer.

■ Groups can be open to everyone or just for people of a certain age,

sex, culture, or religion. For instance, some groups are just for teens or young children.

■■ Some groups talk about all aspects of cancer. Others focus on only one or two topics, such as treatment choices, self-esteem, sadness, or grief.

39

index-48_1.jpg

■ In some groups, people with cancer meet in one support group and their loved ones meet in another. This way, people can say what they really

think and feel and not worry about hurting someone’s feelings.

■ In other groups, patients and families meet together. People often find that meeting in these groups is a good way for each to learn what the other is going through.

■ Telephone support groups are where everyone dials in to a phone line and are linked together to talk. They can share and talk to others with similar experiences from all over the country. There is usually little or no charge.

■ Online support groups are “meetings” that take place by computer. People meet through chat rooms, listservs, or moderated discussion groups and talk with each other over e-mail. People often like online support groups because they can take part in them any time of the day or night. They’re also good for people who can’t travel to meetings. The biggest problem with online groups is that you can’t be sure if what you learn is correct.

Always talk with your doctor about cancer information you learn from

the Internet.

If you have a choice of support groups, visit a few and see what they are like. See which ones make sense for you. Although many groups are free, some charge a small fee. Find out if your health insurance pays for support groups.

Where to find a support group

Many hospitals, cancer centers, community groups, and schools offer cancer support groups. Here are some ways to find groups near you:

■ Call your local hospital and ask about its cancer support programs.

■ Ask your social worker to suggest groups.

■ Do an online search for groups.

■ Look in the health section of your local newspaper for a listing of cancer support groups.

A little help is better than a lot of pity.

—Celtic Proverb

40

index-49_1.jpg

Spiritual help

Many people with cancer look more deeply for meaning in their lives. Spirituality means the way you look at the world and make sense of your place in it.

Spirituality can include faith or religion, beliefs, values, and “reasons for being.”

Being spiritual can mean different things to everyone. It is a very personal issue. Most people are spiritual in some way, like attending a church, temple, or mosque. Others are spiritual through teaching or volunteer work. And others find it in different ways that are special to them.

Cancer can affect people’s spirituality. Some people find that cancer brings a new or deeper meaning to their faith. Others feel that their faith has let them down.

For example, you may:

■ struggle to understand why you have cancer

■ wonder about life’s purpose and how cancer fits in the “fabric of life”

■ question your relationship with God

Many people find that their faith is a source of comfort. They find they can cope better with cancer when they pray, read religious books, meditate, or talk with members of their spiritual community. Others like to take time for themselves.

They write in a journal, read comforting things, or simply reflect. The wife of a man with cancer said:

“I could not handle my husband’s illness on my

own. It’s real hard when I have my down times.

But most of the time, my faith gives me strength

and some sense of peace.”

Many people also find that cancer changes their values. The things you own and your daily duties may seem less important. You may decide to spend more time with loved ones, helping others, doing things in the outdoors, or learning about something new.

41

People in health care

Most cancer patients have a treatment team of health providers who work together to help them. This team may include doctors, nurses, social workers, pharmacists, dietitians, and other people in health care. Chances are that you will never see all these people at the same time. In fact, there may be health providers on your team who you never meet.

Doctors

Most people with cancer have two or more doctors. Chances are, you will see one doctor most often. This person is the leader of your team. He or she not only meets with you but also works with all the other people on your treatment team.

Make sure to let your doctor know how you’re feeling. Tell him or her when you

feel sick, are depressed, or in pain. (To learn more, read about “Pain Scales and

Pain Journals” on page 7). When doctors know how you feel, they can:

■ figure out if you are getting better or worse

■ decide if you need other drugs or treatments

■ help you get the extra support you need

Ask your doctor how often he or she will see you, when you will have tests, and how long before you know if the treatment is working.

Nurses

Most likely, you will see nurses more often than other people on your treatment team. If you’re in the hospital, they will check in on you many times a day. If you are at home, visiting nurses may come to your house and help with your treatment and care. Nurses also work in clinics and doctor offices.

You can talk with nurses about your day-to-day concerns. They can tell you what to expect, such as if a certain drug is likely to make you feel sick. You can also talk to them about what worries you. They can offer hope, support, and suggest ways to talk with family and friends about your feelings. Nurses work with all the other health providers on your treatment team. Let them know if you need or want more help.

42

Pharmacists

Pharmacists not only fill prescriptions but also can teach you about the drugs you are taking. They can help you by:

■ talking with you about how your drugs work

■ telling you how often to take your drugs

■ teaching you about side effects and how to deal with them

■ warning you about the danger of mixing drugs together

■ letting you know about foods you shouldn’t eat or things you shouldn’t do, like being in the sun for too long

Dietitians

People with cancer often have trouble eating or digesting food. Eating problems can be a side effect from cancer drugs or treatments. They can also happen when people are so upset that they lose their appetite and don’t feel like eating.

Dietitians can help by teaching you about foods that are healthy, taste good, and are easy to eat. They can also suggest ways to make eating easier, such as using plastic forks or spoons so food doesn’t taste like metal when you’re having chemo. Ask your doctor or nurse to refer you to a dietitian who knows about the special needs of cancer patients.

Social Workers

Social workers assist patients and families with meeting their daily needs such as:

■ talking about your cancer with your family and other loved ones

■ dealing with your feelings such as depression, sadness, or grief

■ problem-solving and coping with stress

■ finding support groups near where you live

■ dealing with money matters, like paying the bills

■ talking about your cancer or other work issues with your boss

■ filling out paperwork, such as advance directives or living wills

(For more information about advance directives and living wills, see

Chapter 7 “Living Each Day” on page 63.)

■ learning about health insurance, such as what your policy covers and what it does not

43

index-52_1.jpg

■ finding rides to the hospital, clinic, or doctor’s office

■ setting up visits from home health nurses

Patient Educators

Patient or health educators can help you learn more about your cancer. They can find information that fits your needs. Patient educators are also experts in explaining things that may be hard to understand. Many hospitals and treatment centers have resource centers run by health educators. These centers contain books, videos, computers, and other tools to help you and your family. These tools can help you understand your type of cancer, your treatment choices, side effects, and tips for living with and beyond your cancer. Ask your doctor or nurse about talking to a patient educator.

Psychologists

Most people are very upset when they face a serious illness such as cancer.

Psychologists can help by talking with you and your family about your worries.

They can not only help you figure out what upsets you but also teach you ways to cope with these feelings and concerns.

Let your doctor or nurse know if you want to talk with a psychologist who is trained to help people with cancer. Many social workers can also fulfill this role.

Psychiatrists

Sometimes people with cancer are depressed or have other psychiatric (mental health) disorders. Psychiatrists are medical doctors who can prescribe drugs for these disorders. They can also talk with you about your feelings and help you find the mental health services you need.

Let your doctor know if you feel like you need to meet with a psychiatrist.

When you have no choice, mobilize the spirit of courage.

—Jewish Proverb

44

Licensed Counselors and Other Mental Health Professionals

Licensed counselors, pastoral care professionals, spiritual leaders, nurse practitioners, and other mental health professionals also help people deal with their feelings, worries, and concerns. For instance, they can:

■ help you talk about feelings such as stress, depression, or grief

■ lead support groups and therapy sessions

■ act as a “go-between,” such as with your child’s school or your boss at work

■ refer you to other health providers and services near where you live Talk with your doctor or contact your local cancer center to find mental health professionals near you.

People in the hospital

Many hospitals have people on staff to help make your stay a little easier.

Patient advocates can help when you have a problem or concern that you don’t feel you can discuss with your doctor, nurse, or social worker. They can act as a bridge between you and your health care team.

Patient navigators are people who help patients and families deal with cancer care. They may help you with forms, making appointments, getting rides, or anything else that can make your health care easier.

Discharge planners work with you and your family to help you get ready to leave the hospital. The discharge planner helps with tasks like making follow-up appointments and making sure you have things you need at home.

Volunteers often visit with patients in the hospital and offer comfort and support.

They may also bring books, puzzles, or other things to do. Many volunteers have had cancer themselves. Let a hospital staff member know if you want to meet with a volunteer.

45

index-54_1.jpg

Caregivers

Caregivers are the people who help with your daily tasks such as bathing, getting dressed, or eating. They are often family members or close friends. Just like you, your caregivers need help and support. Ways to help your caregiver include:

■ building a team

■ keeping your caregivers informed

■ finding extra help

■ doing what you can to help your caregiver

■ keeping your sense of humor

There is no one-way friendship.

—Maasai (African) Proverb

Build a team

Build a team of caregivers so that you don’t have to depend on just one person.

With a team, people can take turns with tasks such as:

■ washing your hair or giving you a backrub

■ going food shopping or cooking a meal for you

■ driving you to the doctor’s office

■ doing errands like going to the bank or post office

■ cleaning the kitchen or mowing your lawn

■ picking up your children after school

Keep your caregivers informed

Make sure your caregivers know about your treatment and care. Ask your doctor or nurse to talk with the person who helps you the most. Suggest they talk about your cancer and its treatment and also what to do in case of an emergency.

You can help by:

Making a list of important phone numbers. This list should have the phone numbers of your doctor, nurse, pharmacist, family members, neighbors,

friends, and spiritual leaders. Keep copies of this list next to each phone in your house.

46

Letting your caregivers know about the drugs you take. Make a list of all your drugs. Include the name of each drug, as well as how much of this drug you take and how often you need to take it. Be sure to also let your caregivers know about side effects to watch for and if you have any drug allergies. Also make sure you keep your list up-to-date.

Telling your caregivers about important paperwork. Let your caregivers know where you keep a copy of your insurance policies, social security papers, living will or advance directive, and power of attorney form. (For more information about advance directives, living wills, and power of

attorney see Chapter 7 “Living Each Day” on page 63.)

Find help where you live

Many towns have community volunteers. These people offer help to others near where they live or work. Here are some ways to find volunteers:

■ Look in your local newspaper.

■ Ask at your hospital, library, or place of worship.

■ Call your state or local health department.

Contact the Cancer Information Service (see “Resources for Learning More”

on page 65.) and ask how to find volunteer programs near you.

Some towns also have services such as respite care, home care, and hospice.

Respite care programs arrange for someone else to stay with you while your caregivers take time off. To learn more about respite care, call your local hospital,

home care agency, or hospice program. For ways to find out more, see “Resources

for Learning More” on page 65.

Home care programs arrange for you to receive skilled nursing care or help with personal tasks such as bathing or dressing in your own home. Your doctor needs to order these services. Talk with your doctor or nurse if you want to learn more.

Hospice can be a great source of comfort and support to people who are dying.

It can help with medical care and be a way for patients and their families to talk about their feelings. In some towns, hospice can also help with respite care. Let your doctor know if you want to learn more about a hospice near you.

47

index-56_1.jpg

Take care of your caregivers

Cancer and its treatment are hard on everyone, even the people who take care of you. Sometimes caregivers become run down and get sick from the stress.

Encourage your caregivers to take time off so they can do errands, enjoy hobbies, or simply have a rest.

Your caregivers might want to join a support group and meet others who are also caring for people with cancer. To find a group nearby, contact your local hospital or cancer center.

Watch for signs of depression in your caregivers. If you think that one of them is depressed, talk to him or her about it. Urge your caregiver to seek professional help. Let him or her know that other people can help you while they are taking care of themselves. To learn more about the signs of depression, see page 9.

Keep your sense of humor

If you like to joke with your friends and family, don’t stop now. It’s okay to laugh at things that make you upset. For many people, humor is a way to gain a sense of control. A woman who just had cancer surgery said:

“I had a lot of tubes and such hooked up to me after

my surgery, and I could tell it made some of my visitors

uncomfortable. When I noticed them staring at all the high-

tech stuff, I’d make a joke about being a robot. They’d laugh

at that and relax, and then we’d be able to talk.”

And remember to say “thank you.” Let your caregivers know that you value their help, support, and love.

48

Summing up: People helping people

People who have cancer often find that their needs change because of their cancer. The tasks of daily life become harder to manage. Feelings can be intense. And spiritual questions loom larger than ever before.

Even though their needs are greater, it is hard for many people with cancer to ask for help. Many people do not know where to look for the help they need.

People you can turn to for help include:

Family and friends. Most people are happy to find out that something they have to offer—a meal, a ride to the doctor, a phone call—is helpful to you. They may want to offer you help but do not know what you need

or want.

Others who also have cancer. People who have been through cancer often share a special bond with one another. Sharing what you have

been through with others and hearing how they have coped can be a

source of strength for you.

Support groups. There are many types of groups. Think about what you would like in a group and talk to your health care provider to help you find that type of group.

■■ Spiritual help, which can come from your church, synagogue, or other religious center. Or you may find that reading, talking with others, and meditating or praying provide you with a sense of peace and strength.

Health care providers both in the community and in the hospital. A whole range of specially trained people are available to help you meet all your needs.

■■ Caregivers, who provide your day-to-day care. As they care for you, remind them that they need to care for their own needs as well.

49

index-58_1.jpg

index-58_2.jpg

index-58_3.jpg

index-58_4.jpg

index-58_5.jpg

index-58_6.jpg

index-58_7.jpg

50

Chapter 6

Dealing with a new self-image

When you have cancer and when you are having treatment for cancer,

changes occur.

■ You don’t have as much energy as you did before the cancer.

■ Your body isn’t the same as it was.

■ If you’re single, your dating life may be awkward. You may face new

challenges in your sex life.

■ If you have a partner, you may face changes in your relationship.

These changes can be hard to accept. But most people with cancer find that, with time, they’re able to develop a new self-image by:

■■ staying actively involved in life

■■ getting help when they need it

■■ talking openly about sex and intimacy with their loved ones

Cancer and its treatment can change how you look and feel.

■ Surgery can leave scars or change the way you look.

■ Chemotherapy can cause your hair to fall out.

■ Radiation can make you feel very tired.

■ Some drugs may cause you to gain weight or feel bloated.

■ Treatments can make it hard to eat. They may upset your stomach and

make you throw up. Or they can make you feel so sick that you do not

want to eat.

■ Some treatments can make it hard to get pregnant or father a child.

Cancer treatment can last for weeks or months. The good news is that most of these side effects go away when the treatment is over.

Many people want to know as much as they can about side effects, so that they can talk with their doctor about ways to treat them. For example, a doctor can change a person’s drugs or suggest new foods to eat.

51

index-60_1.jpg

Cancer treatment may affect your ability to have children in the future. If this is a concern, talk to your doctor. He or she may be able to refer you to a fertility doctor before you begin cancer treatment.

Fatigue

Many people feel fatigue (they are very tired or have little energy) when they are being treated for cancer. They may have good days with lots of energy and bad days when they’re very tired. This fatigue is likely to last for a while after treatment is over. For some people, it can last for many months.

Ask your doctor about exercise. Studies show that when people are tired, exercise helps. Even light walking may be good for you.

Let people know that you have both good and bad days. Try to do something special on days when you feel better. Let yourself rest on the days you are very tired. And don’t be afraid to tell others if you feel fatigue, even if you need to change your plans.

“Before my cancer, I was always full of energy, working

full-time, coming home to family activities, playing

tennis, and enjoying an active social life. Now, I have

to conserve my energy and plan my schedule around my

chemotherapy. Many days I’m so tired, it’s an effort

to just get out of bed.”

Your self-image

Each of us has a mental picture of how we look, our “self-image.” Although we may not always like how we look, we are used to and accept our self-image.

Cancer and its treatment can change your self-image. You may have changes such as hair loss or scars from surgery. Some of these changes (hair loss) will go away when treatment is over. Other changes (scars) will always be a part of how you look. Every person changes in different ways. Some changes people will notice and other changes only you will notice. Some changes you may like and with some others, you may need time to adjust.

52

Coping with these changes can be hard. But, over time, most people learn to accept them. Your family and friends can help by showing they love you the way you are.

Staying active

Many people find that staying active can help. Whether you swim, play a sport, or take an exercise class, you may find that being active helps you accept your new self-image. Talk with your doctor about ways you can stay active.

Hobbies and volunteer work can also help improve your self-image. You may like to read, listen to music, or sew. You may also want to teach someone how to read or volunteer at a homeless shelter. You may find that you feel better about yourself when you get involved in helping others and doing things you enjoy.

Getting help

Reconstructive surgery. If cancer surgery changes the way you look, you may want to have reconstructive surgery (plastic surgery). Many patients feel that this type of surgery helps them cope better with their new self-image. For instance, you may choose to have surgery to improve the look of a surgical scar. Most insurance companies pay for reconstructive surgery.

Prosthetic devices. If a part of your body needs to be amputated (cut off) because of cancer, a prosthetic device (a fake or man-made body part) can replace what was cut off. For example, if your leg is amputated, you may want to have a prosthetic leg to replace the one you lost. Most insurance companies pay for prosthetic devices.

Wigs and scarves. Cancer treatment may cause you to lose your hair. You may want to cover your head to keep you warm and protected from the sun. You may also feel that wearing a wig or scarf improves how you look.

It is a good idea to buy your wig before treatment starts. This way, the wig will match the color and style of your own hair. You may want to start wearing your wig before losing your hair. Try to find a wig or scarf that fits well and is not scratchy, since your scalp may be tender and sore. You may be able to deduct the cost of your wig from your income taxes. Most of the time, your hair will grow back when treatment is over, even though it may be a different color and not feel like it did before.

53

index-62_1.jpg

index-62_2.jpg

index-62_3.jpg

Facing cancer with your spouse or partner

Some couples grow stronger when they face cancer together. They look at their lives in a new way. Problems that once seemed big don’t feel that way now. Other couples facing cancer have more trouble. A psychologist said:

“If a couple had good communication before cancer

treatment, they probably have a strong basis

for dealing with these new challenges. But if the

relationship had problems already, facing the new

issues that come with cancer can be more difficult.”

One kind word can warm three winter months.

—Japanese Proverb

Your sex life may change

Sometimes people with cancer and their partners or spouses have trouble showing their love for each other. For instance, one man said that his wife wouldn’t kiss him any more because she was afraid that she would catch cancer.

In truth, people cannot give each other cancer. If your loved one is worried about catching cancer from you, suggest he or she talk with your doctor.

People can also have problems with sex because of cancer and its treatment.

For instance, you may not like how you look and not want to have sex. If this happens, talk with your spouse or partner. Your partner probably loves you for more than your body. A 45-year-old man said:

“My wife found it hard to understand that my love for

her wasn’t less because she had a mastectomy. I was

much more concerned that she be rid of the cancer.

I had to convince her that I loved her for her many

special qualities, not her left breast.”

54

index-63_1.jpg

Your spouse or partner may be afraid to have sex with you. He or she may be afraid of hurting you or having sex when you are not feeling well. Let your partner know if you want to have sex or would rather just hug, kiss, and cuddle.

You can still have intimacy without having sex.

Sometimes, cancer and its treatment causes other problems with sex.

■ Fatigue can make you so tired that you don’t want to have sex.

■ Surgery can make certain positions painful.

■ Prostate cancer treatments can make it hard for a man to have an erection.

■ Some treatments cause women to have vaginal dryness.

■ Orgasm is sometimes hard to achieve.

Even though you may feel awkward, talk about your sex life with people who can help. Let your doctor or nurse know if you are having problems. There may be drugs you can take or other ways you and your loved one can give each other pleasure. Some people also find it helpful to talk with other couples about how to stay close while dealing with cancer.

Remember that you are special for who you are, not how you look. Your sense of humor, intellect, sweetness, common sense, special talents, and loyalty, these and many other qualities make you special. Sex is not the only basis for a relationship. It is one of many ways to express love and respect.

Dating

If you’re single, you may worry about dating. You may be afraid that you don’t look like you used to. And you may not know how, or when, to talk with someone new about your cancer.

One woman with breast cancer said that dating was easier than she thought it would be. She felt like she knew when the time was right to talk about her disease.

In fact, she said that her cancer never caused problems with people she dated.

“I told my boyfriend about my breast cancer and my

worries about letting him see my body. He was very

caring. He said it didn’t matter —that I was important

to him for who I was, not how my body looked.”

55

Summing up: Dealing with a new self-image

When you have cancer and when you are having treatment for cancer, you go through changes.

■ You don’t have as much energy as you did before the cancer.

■ Your body is not the same as it was.

■ If you’re single, your dating life may be awkward.

■ You may face new problems in your sex life.

These changes can be hard to accept. But most people with cancer find that, with time, they learn to accept their new self-image by:

■■ staying involved in life

■■ getting help when they need it

■■ talking openly about sex and feelings of closeness with their loved ones 56

index-65_1.jpg

index-65_2.jpg

Chapter 7

Living each day

When you have cancer, living each day to the fullest means:

■ staying involved in the duties and pleasures of daily life

■ returning to work if possible

■ making plans for the future

Is living with cancer the biggest challenge you have ever faced? For most people, it is. Dealing with cancer and facing thoughts of death is a life-changing event for most people. For many, it can be a time to minimize regrets and make new priorities.

“My cancer made me take a closer look at how

I spend my days. Realizing that they might be

limited, I was determined to make them as good

as possible. I vowed to use my time in ways that

were good for me or brought me pleasure.”

Try to live each day as normally as you can. Enjoy the simple things you like to do such as petting your cat or watching a sunset. Take pleasure in big events such as a friend’s wedding or your grandson’s high school graduation.

Every season brings its own joy.

—Spanish proverb

57

index-66_1.jpg

index-66_2.jpg

index-66_3.jpg

index-66_4.jpg

index-66_5.jpg

index-66_6.jpg

index-66_7.jpg

58

index-67_1.jpg

Keeping up with your daily routine

If you feel well enough, keep up with your daily routine. This includes going to work, spending time with family and friends, taking part in hobbies, and even going on trips.

At the same time, give yourself time to be with your feelings about cancer. Also, be careful about acting cheerful when you are not. Avoiding your feelings may make you feel worse, not better. (To learn more,

g

go to Chapter 3 on pa

e 25,

“Sharing Your Feelings About Cancer.”)

Use these questions to think about how you want to spend your time.

■ Who do I like to be with?

■ Who makes me laugh?

■ How do I want to spend my time?

■ What makes me feel happy?

■ What are my passions?

■ What types of things do I enjoy the most?

■ What types of things do I like the least?

■ Is there something I want to do that I’ve never tried?

Fun

Sometimes people with cancer try new, fun things that they have never done before. For instance, have you always wanted to ride in a hot air balloon or go deep-sea fishing? What fun things have you always wanted to try, but have never taken the time to do? A young woman with cancer put it this way:

“Too often we fill up our lives with too many

serious activities and neglect doing the silly

things that keep us sane.”

Try to do something just for fun, not because you have to do it. But be careful not to tire yourself out. Some people get depressed when they are too tired. Make sure to get enough rest so you feel strong and can enjoy these fun activities.

59

Physical activities

Many people find they have more energy when they take part in physical activities such as swimming, walking, yoga, and biking. They find that these types of activities help them keep strong and make them feel good. A bit of exercise everyday:

■ improves your chances of feeling better

■ keeps your muscles toned

■ speeds your healing

■ decreases fatigue

■ controls stress

■ increases appetite

■ decreases constipation

■ helps free your mind of bad thoughts

Even if you have never done physical activities before, you can start now. Choose something you think you’d like to do, and get your doctor’s okay to try it. You can do some exercises even if you have to stay in bed.

Start slowly, doing an activity for just 5 or 10 minutes a day. When you feel strong enough, you can slowly increase this time to 30 minutes or more. Let your doctors and nurses know if you have pain when you do this activity.

Working

People with cancer often want to get back to work. Their jobs not only give them an income but also a sense of routine. Work helps people feel good about themselves.

Before you go back to work, talk with your doctor as well as your boss. Make sure you are well enough to do your job. You may need to work fewer hours or do your job in a different way. Some people feel well enough to work while they are having chemo or radiation treatment. Others need to wait until their treatments are over.

60

index-69_1.jpg

Talking with your boss and co-workers

“I was nervous about going back to work. A big issue was

what to tell my supervisor and co-workers. I knew that they

would be supportive, but I was afraid that they would think

I was no longer able to do as good a job as I used to.”

You might find that your boss and co-workers treat you differently than they did before you had cancer. They may say nothing because they don’t know what to say and don’t want to hurt your feelings. Or they may not know if you want to talk about your cancer or would rather just focus on work.

If you can, use humor or make a joke. Humor can help break the ice and make people feel more at ease. Let your boss and co-workers know if, and when, you want to talk about your cancer. You may find that it’s easier than you thought it would be.

Your legal rights

Some people with cancer face roadblocks when they try to go back to work or get a new job. Even those who had cancer many years ago may still have trouble.

Employers may not treat them fairly because they believe myths that aren’t true.

They may believe cancer can be spread from person to person or people with cancer take too many sick days. Some employers also think that people with cancer are poor insurance risks.

It is against the law to discriminate against (treat unfairly) workers who have disabilities such as cancer. These national laws protect your rights as a worker:

■ The Federal Rehabilitation Act of 1973

■ The Americans With Disabilities Act of 1990

Most states also have laws that protect the rights of people with cancer. You can take legal action (sue) if you think that you are not being hired for a job because of your cancer. Here are some ways to learn more about your legal rights:

■■ Talk with your social worker and ask about laws in your state. He or she can also give you the name of the state agency that protects your rights as an employee.

■■ Contact your state’s Department of Labor or Office of Civil Rights.

61

index-70_1.jpg

■ Contact the office of your state Representative or Senator. You can find out who represents your district and how to contact this person by looking on

the Internet or at http://www.house.gov or http://www.senate.gov.

■■ Visit the Web site for the National Cancer Institute’s State Cancer Legislative Database Program at http://www.scld-nci.net/index.cfm.

You may also want to learn about the benefits you can get as a person with cancer.

One is the Family and Medical Leave Act. This law allows most workers to take up to 12 weeks of unpaid time to deal with certain family and medical problems. To learn more, speak with the Human Resource office where you work. You can also contact the U.S. Department of Labor at (202) 693-0066 or http://www.dol.gov.

Some people can’t return to their jobs because of their cancer. For instance, you may no longer be able to lift heavy boxes if that task is a part of your job. If you can’t do the work you did before, contact your state Rehabilitation Program. Ask about training programs that teach you the skills you need for other kinds of work. To learn more, look under the state government section in the blue pages of your phone book, or check your state’s website.

Handling money worries

The financial challenges that people with cancer and their families face are very real. During an illness, you may find it hard to find the time or energy to review your options. Yet it’s important to keep your family financially healthy.

For hospital bills, you or your loved one may want to talk with a hospital financial counselor. You may be able to work out a monthly payment plan or even get a reduced rate. You may also want to stay in touch with the insurance company to make sure certain treatment costs are covered.

For information about resources that are available, see the Resources section on page 65. You can also access the NCI database, “National Organizations That Offer Cancer-Related Services,,” at http://www.cancer.gov, by searching for the terms

“financial assistance.” Or call toll-free 1-800-4-CANCER (1-800-422-6237) to ask for help.

“I’m not working for the money. I’m working for

the benefits. If we don’t have benefits, we could

lose everything.”

62

index-71_1.jpg

index-71_2.jpg

Thinking about the future

You may find it helpful to look beyond your treatment and think about what you want to do when you feel well again. Many people find it helpful to set goals.

Setting goals gives them something to think about and work toward. Goals can also help people focus on what they want to achieve next week, next year, and into the future. As one man with cancer said:

“I decided I would travel to Europe when my therapy was

over. So I used treatment time to research the countries

I wanted to visit and read first-person accounts written by

other travelers. I bought a new camera and learned how to

use it. I even brushed up on my French!”

Goals can also help you get you through hard times. In fact, many cancer patients have done much better than their doctor expected because they wanted to go to a wedding or meet their new grandchild.

It is wise for people with cancer to “put their house in order.” Think about making a will and talking about end-of-life choices with your loved ones. You may also want to put your photos into albums, write down your family history, and sort through some of the things you own.

Putting your house in order is not the same as giving up. In fact, it is a way that people with cancer can live each day to the fullest and think about the future.

These things make sense for everyone, sick or well.

If you wait for tomorrow, tomorrow comes.

If you don’t wait for tomorrow, tomorrow comes.

—Senegalese Proverb

Advance Directives

People with cancer face a lot of choices about the future. Advance directives are legal papers that allow you to decide ahead of time how you want to be treated when you can’t make decisions for yourself. They help your loved ones and doctors know what to do if, and when, you can’t tell them yourself.

63

Setting up an advance directive is not the same as giving up. Making such decisions at this time keeps you in control. You are making your wishes known for all to follow. This can help you worry less about the future and live each day to the fullest.

Advance directives include:

■ A will to divide your money and things you own among your heirs

■ A living will to let people know what kind of medical care you want if you are close to death

■■ A durable power of attorney to appoint a person (a “health care proxy”) to make medical decisions for you when you can’t make them yourself

For more information, contact the Cancer Information Service at 1-800-4-CANCER

(1-800-422-6237), by TTY (for deaf and hard of hearing callers) at 1-800-332-8615, or through the Internet at http://www.cancer.gov. Click on the Live Help button to send a message.

After treatment is over

Once you finish treatment, you may expect life to return to the way it was before cancer. In truth, it can take a while for life to settle down. This can be a hard time.

While you adjust to life after treatment, you may find it helpful to read Facing Forward: Life After Cancer Treatment. To order a free copy, contact the Cancer Information Service or view it online at http://www.cancer.gov.

Summing up: Living each day

Living with cancer often means taking a closer look at how to live the rest of your life—whether it’s long or short. Take care of daily duties and do things that are fun. Both are needed for a full life. And when you can, think about what makes life rich and meaningful for you.

Many people who have cancer feel that living each day to the fullest means:

■ staying involved in the duties and pleasures of daily life

■ returning to work if possible

64

■ making plans for the future

index-73_1.jpg

Resources for learning more

For more resources, see

National Organizations That

Offer Cancer-Related Services

at http://www.cancer.gov . In the Federal resources

search box, type in the words

“national organizations.”

National Cancer Institute

Or call 1-800-4-CANCER

Provides current information on cancer prevention,

(1-800-422-6237) for more help.

screening, diagnosis, treatment, genetics, and

supportive care.

Visit:

http://www.cancer.gov

Cancer Information Service

Answers questions about cancer, clinical trials, and cancer-related services and helps users find information on the NCI Web site. Provides NCI printed materials.

■■ Call:

1-800-4-CANCER (1-800-422-6237)

Visit:

http://www.cancer.gov/aboutnci/cis

■■ Chat online: Click on “LiveHelp” from the home page.

Administration on Aging

Provides information, assistance, individual counseling, organization of support groups, caregiver training, respite care, and supplemental services.

Call: 1-202-619-0724

Visit:

http://www.aoa.gov

Centers for Medicare and Medicaid Services

Provides information for consumers about patient rights, prescription drugs, and health insurance issues, including Medicare and Medicaid.

Call:

1-800-MEDICARE (1-800-633-4227)

Visit:

http://www.medicare.gov (for Medicare information)

or

http://www.cms.hhs.gov (other information) Equal Employment Opportunity Commission

Provides fact sheets about job discrimination, protections under the Americans With Disabilities Act, and employer responsibilities. Coordinates investigations of employment discrimination.

Call: 1-800-669-4000

TTY:

1-800-669-6820

Visit:

http://www.eeoc.gov

65

U.S. Department of Labor

Office of Disability Employment Policy

Provides fact sheets on a variety of disability issues, including discrimination, workplace accommodation, and legal rights.

Call:

1-866-633-7365

TTY: 1-877-889-5627

Visit:

http://www.dol.gov/odep

Private/Nonprofit organizations

American Cancer Society

Provides current information on all areas of cancer, including research, education, advocacy, and service.

Call:

1-800-ACS-2345 (1-800-227-2345)

Visit:

http://www.cancer.org

CancerCare

Offers free support, information, financial assistance, and practical help to people with cancer and their loved ones.

Call:

1-800-813-HOPE (1-800-813-4673)

Visit:

http://www.cancercare.org

Cancer Support Community

The CSC is dedicated to providing support, education, and hope to people affected by cancer.

Call:

1-888-793-9355

Visit:

http://www.cancersupportcommunity.org

Fertile Hope

Fertile Hope provides reproductive information, support, and hope to cancer patients who are at risk for treatment-related infertility.

Call:

1-888-794-HOPE (4673)

Visit:

http://www.fertilehope.org

Kids Konnected

Offers education and support for children who have a parent with cancer or who have lost a parent to cancer.

Call:

1-800-899-2866

Visit:

http://www.kidskonnected.org

66

Lance Armstrong Foundation

The Lance Armstrong Foundation seeks to inspire and empower people living with, through, and beyond cancer to live strong. It provides education, advocacy, public health and research programs.

Call:

1-512-236-8820 (general number)

1-866-235-7205 (LIVESTRONG SurvivorCare Program)

Visit:

http://www.livestrong.org

National Coalition for Cancer Survivorship

Provides information on cancer support, employment, financial and legal issues, advocacy, and related issues.

Call:

1-877-NCCS YES (1-877-622-7937)

Visit:

http://www.canceradvocacy.org

National Family Caregivers Association (NFCA)

Provides information, support, public awareness, and advocacy for caregivers.

Call: 1-800-896-3650

Visit:

http://www.nfcacares.org

National Hospice and Palliative Care Organization

Provides information on hospice care, local hospice programs, state specific advance directives, and locating a local health care provider. Through their program, Caring Connections, they also provide education and materials on palliative and end of life issues, as well as links to other organizations and resources.

Call:

1-800-658-8898

Visit:

http://www.nhpco.org

Caring Connections

Call: 1-800-658-8898

Visit:

http://www.caringinfo.org

NeedyMeds—Indigent Patient Programs

Lists medicine assistance programs available from drug companies.

NOTE: Usually patients cannot apply directly to these programs. Ask your doctor, nurse, or social worker to contact them.

Visit:

http://www.needymeds.com

Patient Advocate Foundation

Offers education, legal counseling, and referrals concerning managed care, insurance, financial issues, job discrimination, and debt crisis matters.

Call:

1-800-532-5274

Visit:

http://www.patientadvocate.org

67

NIH Publication No. 12-2059

Revised August 2012

NIH...Turning Discovery into Health