People Helping
People
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Other
People Who Have Cancer
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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:
- 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
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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:
- 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
A
little help is better than a lot of pity.
--Celtic Proverb |
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.
To
know the road ahead, ask those coming back.
--Chinese Proverb |
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:
- 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, 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
- 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 or self-esteem.
- Therapy groups focus
on feelings such as sadness and grief. Mental Health professionals often
lead these types of groups. (See "People in Health Care".)
- 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.
- 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.
- 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:
- 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. 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 |
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:
- 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 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:
- 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 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:
- finding support groups
near where you live
- dealing with money
matters, like paying the bills
- talking about your cancer
with your boss
- filling out
paperwork, such as advance directives or living wills (For more information
about advance directives and living wills, see "Living Each Day".)
- talking about your cancer
with your family and other loved ones
- dealing with your feelings
such as depression, sadness, or grief
- coping with stress and
learning new ways to relax
- learning about health
insurance, such as what your policy covers and what it does not
- 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.
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:
- 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.
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:
- building a team
- keeping your caregivers
informed
- finding extra help
- doing what you can to help
your caregiver
- showing your caregiver
that you care
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.
- 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.
- 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:
- 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".)
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 |
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 |
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:
- 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.
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