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.
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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.
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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
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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.
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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.
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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.
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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.
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■
■ 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
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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.
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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.
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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
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■
■ 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
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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.
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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.
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■
■ 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