People Helping People
Family and Friends Other People Who Have Cancer Support Groups Spiritual Help People in Health Care People in the Hospital Caregivers Summing Up: 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:
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family and friends
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others who also have cancer
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people you meet in support groups
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people from your spiritual or religious community
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health care providers
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caregivers
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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 do not 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. Your friends may not know what to say or
how to act when they are with you. Some people may even avoid you. But they may
feel more at ease when you ask them to cook a meal or pick up your children
after school. There are many ways that family, friends, other people who have
cancer, spiritual or religious leaders, and health care providers can help. In
turn, there are also ways you can help and support your caregivers.
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 is anything I can do," tell this person if you need help with an
errand or a ride to the doctor's office.
Family members and friends can also:
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keep you company, give you a hug, or hold your hand
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listen as you talk about your hopes and fears
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help with rides, meals, errands, or household chores
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go with you to doctor's visits or treatment sessions
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tell other friends and family members ways they can help
A little help is better than a lot of pity.
--Celtic Proverb
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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:
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talk with you about what to expect
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tell you how they cope with cancer and live a normal life
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help you learn ways to enjoy each day
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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.
To know the road ahead, ask those coming back.
--Chinese Proverb
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Cancer support groups are meetings for people with cancer and those touched by
cancer. These groups allow you and your loved ones to talk with others facing
the same problems. Support groups often 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 trained counselor.
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 are afraid that the meetings will make you sad or
depressed.
It may be good to know that many people find support groups very helpful. People
in the groups often:
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talk about what it's like to have cancer
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help each other feel better, more hopeful, and not so alone
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learn about what's new in cancer treatment
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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, furies, 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
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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.
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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.
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Some groups talk about all aspects of cancer. Others focus on only one or two
topics such as treatment choices or self-esteem.
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Therapy groups focus on feelings such as sadness and grief. Mental Health
professionals often lead these types of groups. (See
"People in Health Care".)
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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.
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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.
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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:
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Call your local hospital and ask about its cancer support programs.
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Look in the health section of your local newspaper for a listing of cancer
support groups.
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."
Most people are spiritual in some way, whether or not they go to a church,
temple, or mosque.
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:
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struggle to understand why you have cancer
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wonder about life's purpose and how cancer fits in the "fabric of life"
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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. 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 my faith gives me strength and, mostly, I have peace about
it."
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.
One who is contented is not always rich.
--Spanish Proverb
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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 are feeling. Tell him or her when you
feel sick, are depressed, or in pain. (To learn more, read about
"Pain Scales and Pain Journals"). When your doctor knows how you feel,
he or she can:
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figure out if you are getting better or worse
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decide if you need other drugs or treatments
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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 are in the hospital, nurses 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 with nurses 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.
Pharmacists
Pharmacists not only fill prescriptions but also can teach you about the drugs
you are taking. They can help you by:
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talking with you about how your drugs work
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telling you how often to take your drugs
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teaching you about side effects and how to deal with them
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warning you about the danger of mixing drugs together
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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 are
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:
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finding support groups near where you live
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dealing with money matters, like paying the bills
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talking about your cancer with your boss
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filling out paperwork, such as advance directives or living wills (For more
information about advance directives and living wills, see
"Living Each Day".)
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talking about your cancer with your family and other loved ones
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dealing with your feelings such as depression, sadness, or grief
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coping with stress and learning new ways to relax
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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
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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.
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.
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:
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help you talk about feelings such as stress, depression, or grief
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lead support groups and therapy sessions
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act as a "go-between," such as with your child's school or your boss at work
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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.
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.
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.
Caregivers are the people who help with your daily tasks such as bathing,
getting dressed, or eating. Caregivers are often family members or close
friends. Just like you, your caregivers need help and support. Ways to help
your caregiver include:
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building a team
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keeping your caregivers informed
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finding extra help
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doing what you can to help your caregiver
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showing your caregiver that you care
There is no one-way friendship.
--Maasai (African) Proverb
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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:
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washing your hair or giving you a backrub
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going food shopping or cooking a meal for you
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driving you to the doctor's office
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doing errands like going to the bank or post office
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cleaning the kitchen or mowing your lawn
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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:
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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 an
up-to-date 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.
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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
"Living Each Day".)
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:
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Look in your local newspaper.
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Ask at your hospital, library, or place of worship.
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Call your state or local health department.
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Contact the Cancer Information Service (see
"Resources for Learning More".) 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".
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 people who are dying 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.
When you have no choice, mobilize the spirit of courage.
--Jewish Proverb
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Take Care of Your Caregivers
Cancer and its treatment are hard on everyone, even the people who take care of
you. 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
Sadness and Depression.
Show That You Care
Try to 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 the 'Bionic Woman.' They'd
laugh at that and relax, and then we'd be able to talk."
One kind word can warm three winter months.
--Japanese Proverb
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And remember to say "thank you." Let your caregivers know that you value their
help, support, and love.
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:
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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.
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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.
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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.
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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.
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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.
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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.
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