Cancer Will Change Your Life
Your Feelings: Learning You Have Cancer
Family Matters
Sharing Your Feelings About Cancer
Learning About Your Cancer and Feeling More in Control
People Helping People
Dealing with a New Self-Image
Living Each Day
Resources for Learning More
Cancer Will Change Your Life
Cancer is a major illness, but not everyone who gets cancer will die from it.
Close to 9 million Americans alive today have a history of cancer. For them,
cancer has become a chronic (on-going) health problem, like high blood
pressure or diabetes.
Just like anyone with a chronic health problem, people who have cancer must
get regular checkups for the rest of their lives, even after cancer treatment
ends. But unlike other chronic health problems, if you have cancer you
probably will not need to take medicine or eat special foods once you have
finished treatment.
If you have cancer, you may notice every ache, pain, or sign of illness. Even little
aches may make you worry. While it is normal to think about dying and healthy
to explore your feelings about death, it is also important to focus on living.
Keep in mind that cancer is not a death sentence. Many people with cancer are
treated successfully. Others will live a long time before dying from cancer. So,
make the most of each day while living with cancer and its treatment.
No one knows the story of tomorrow's dawn.
--Ashanti (African) Proverb
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People Respond to Cancer in Many Ways
This book was written to help you learn from other people with cancer.
Finding out how others respond to cancer might help you understand your
own feelings. Learning how others manage the special problems that cancer
brings might help you find your own ways of coping with the problems that
come along for you.
Sharing Ideas about Ways to Live with Cancer
Many people helped to write this book--people who have had cancer and
their family members, friends, and caregivers. We thank each of them for
sharing their ideas and suggestions about ways to live with cancer. You will find their comments in italic type throughout this book.
We also thank the many health care providers who reviewed Taking Time.
Their comments and practical suggestions are based on years of experience
helping people with cancer.
Back to Top
Your Feelings: Learning You Have Cancer
You will have many feelings after you learn that you have cancer. These feelings
can change from day to day, hour to hour, or even minute to minute.
Some of the feelings you may go through include:
-
denial
-
anger
-
fear
-
stress
-
anxiety
-
depression
-
sadness
-
guilt
-
loneliness
All these feelings are normal.
Feeling hopeful is also normal. No one is cheerful all the time, but while you
are dealing with cancer, hope can be an important part of your life.
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"I heard the doctor say, 'I'm sorry; the test results show that you have cancer.'
I heard nothing else. My mind went blank, and then I kept thinking, 'No, there
must be some mistake.'"
Learning that you have cancer can come as a shock. How did you react? You may
have felt numb, frightened, or angry. You may not have believed what the doctor
was saying. You may have felt all alone, even if your friends and family were
in the same room with you. These feelings are all normal.
For many people, the first few weeks after diagnosis are very difficult. After
you hear the word "cancer," you may have trouble breathing or listening to what
is being said. When you are at home, you may have trouble thinking, eating, or
sleeping.
People with cancer and those close to them experience a wide range of feelings
and emotions. These feelings can change often and without warning.
At times, you may:
-
be angry, afraid, or worried
-
not really believe that you have cancer
-
feel out of control and not able to care for yourself
-
be sad, guilty, or lonely
-
have a strong sense of hope for the future
This section looks at many of the feelings that come up when people find out
they have cancer.
When you were first diagnosed, you may have had trouble believing or accepting
the fact that you have cancer. This is called denial. Denial can be helpful
because it can give you time to adjust to your diagnosis. Denial can also give
you time to feel hopeful and better about the future.
Sometimes, denial is a serious problem. If it lasts too long, it can keep you
from getting the treatment you need. It can also be a problem when other people
deny that you have cancer, even after you have accepted it.
The good news is that most people (those with cancer as well as those they love
and care about) work through denial. By the time treatment begins, most people
accept the fact that they have cancer.
Once you accept that you have cancer, you may feel angry and scared. It is
normal to ask "Why me?" and be angry at:
-
the cancer
-
your health care providers
-
your healthy friends and loved ones
And if you are religious, you might even be angry with God.
Anger sometimes comes from feelings that are hard to show--such as fear, panic,
frustration, anxiety, or helplessness. If you feel angry, don't pretend that
everything is okay. Talk with your family and friends about your anger. Most of
the time, talking will help you feel a lot better. (See
"Sharing Your Feelings About Cancer.")
Talking to one another is loving one another.
--Kenyan Proverb
|
"The word 'cancer' frightens everyone I know. It's a diagnosis that most people
fear more than any other."
It's scary to hear that you have cancer. You may be afraid or worried about:
-
being in pain, either from the cancer or the treatment
-
feeling sick or looking different as a result of your treatment
-
taking care of your family
-
paying your bills
-
keeping your job
-
dying
Your family and close friends may also worry about:
-
seeing you upset or in pain
-
not giving you enough support, love, and understanding
-
living without you
Some fears about cancer are based on stories, rumors, and old information. Most
people feel better when they know what to expect. They feel less afraid when
they learn about cancer and its treatment. As one man with prostate cancer
said,
"I read as much as I can find about my cancer. Imagining the worst is more
frightening than knowing what might happen. Knowing the facts makes me much
less afraid."
Your body may react to the stress and worry of having cancer. You may notice
that:
-
your heart beats faster
-
you have headaches or muscle pains
-
you don't feel like eating
-
you feel sick to your stomach or have diarrhea
-
you feel shaky, weak, or dizzy
-
you have a tight feeling in your throat and chest
-
you sleep too much or too little
Stress can also keep your body from fighting disease as well as it should.
You can learn to handle stress in many ways, like:
-
exercising
-
listening to music
-
reading books, poems, or magazines
-
getting involved in hobbies such as music or crafts
-
relaxing or meditating, such as lying down and slowly breathing in and out
-
talking about your feelings with family and close friends
If you are concerned about stress, talk to your doctor or nurse. He or she may
be able to help you by referring you to a counselor or support group. You may
also join a class that teaches people ways of dealing with stress. The key is
to find ways to control stress and not to let it control you.
Even though almost everyone worries about pain, it may not be a problem for you.
Some people do not have any pain. Others have pain only once in a while. Cancer
pain can almost always be relieved. If you are in pain, your doctor can suggest
ways to help you feel better. These include:
-
prescription or over-the-counter medicines
-
cold packs or heating pads
-
relaxation, like getting a massage or listening to soothing music
-
imagery, such as thinking about a place where you feel happy and calm
-
distraction, like watching a movie, working on a hobby, or anything that helps
take your mind off your pain
There is no reason for you to be bothered with pain. There are many ways to
control pain. Your doctor wants and needs to hear about your pain. As soon as
you have pain you should speak up. Dealing with your pain can also help you
deal with the feelings discussed in this chapter.
If you conceal your disease, you cannot expect to be cured.
--Ethiopian Proverb
|
Pain Scales and Pain Journals
Pain scales or pain journals are tools that you can use to describe how much
pain you feel. These tools can also help your doctor, nurse, or pharmacist find
ways to treat your pain.
You are the only person who can decide how much pain you feel. When it comes to
pain, there is no right or wrong answer. On many pain scales, you are asked to
rate your pain as a number from 0 to 10. For example, you would rate your pain
as "0" if you feel no pain at all. You would rate your pain as "10" if it is
the worst pain you have ever felt in your life. You can pick any number between
0 and 10 to describe your pain.
When you use a pain scale, be sure to include the range. For example, you might
say, "Today my pain is a 7 on a scale from 0 to 10."
A pain journal or diary is another tool you can use to describe your pain. With
a journal or diary, you not only use a pain scale but also write down what you
think causes your pain and what helps you feel better.
|
When you describe your pain to your doctor, nurse, pharmacist, or family member,
tell them:
-
where you feel pain
-
what it feels like (sharp, dull, throbbing, steady)
-
how strong the pain feels
-
how long it lasts
-
what eases the pain and what makes it worse
-
what medicines you are taking for the pain and how much they help
To find out more about pain, contact the Cancer Information Service or look
online at http://www.cancer.gov (see
"Resources for Learning More").
When you first learn that you have cancer, you may feel as if your life is out
of control. You may feel this way because:
-
you wonder if you will live or die
-
your daily routine is messed up by doctor visits and treatments
-
people use medical words and terms that you don't understand
-
you feel like you can't do things you enjoy
-
you feel helpless
-
the health professionals treating you are strangers
Even though you may feel out of control, there are ways you can be in charge.
For example, you can:
-
Learn as much as you can about your cancer. You can call 1-800-4-CANCER
(1-800-422-6237) or TTY (for deaf and hard of hearing callers) at
1-800-332-8615. You can also go online at http://www.cancer.gov and
click on "Need Help?" at the lower
left. (See
"Learning About Your Cancer and Feeling More in Control.")
-
Ask questions. Let your health providers know when you don't understand
what they are saying, or when you want more information about
something.
-
Look beyond your cancer. Many people with cancer feel better when they
stay busy. You may still go to work, even if you need to adjust your schedule.
You can also take part in hobbies such as music, crafts, or reading.
As one woman with cancer commented,
"Once I started to feel better, I found myself looking for new outlets for
creativity. I had always promised myself that some day I would take a
photography course. My satisfaction with my new hobby helped me feel better
about other areas of my life as well."
Many people with cancer feel sad or depressed. This is a normal response to any
serious illness. When you're depressed, you may have very little energy, feel
tired, or not want to eat.
Depression is sometimes a serious problem. If feelings of sadness and despair
seem to take over your life, you may have clinical depression. The box below
lists eight common signs of depression. Let your health provider know if you
have one or more of these signs almost every day.
Early Signs of Depression
Check the signs that are problems for you:
-
a feeling that you are helpless and hopeless, or that life has no meaning
-
no interest in being with your family or friends
-
no interest in the hobbies and activities you used to enjoy
-
a loss of appetite, or no interest in food
-
crying for long periods of time, or many times each day
-
sleep problems, either sleeping too much or too little
-
changes in your energy level
-
thoughts of killing yourself. This includes making plans or taking action to
kill yourself, as well as frequent thoughts about death and dying.
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Depression can be treated. Your doctor may prescribe medication. He or she may
also suggest that you talk about your feelings with a counselor or join a
support group with others who have cancer.
Turn your face to the sun and the shadows fall behind you.
--Maori Proverb
|
Many people with cancer feel guilty. For example, you may blame yourself for
upsetting the people you love. You may worry that you are a burden to others,
either emotionally or financially. Or you may envy other people's good health
and be ashamed of this feeling. You might even blame yourself for lifestyle
choices that could have led to your cancer. For example, that lying out in the
sun caused your skin cancer or that smoking cigarettes led to your lung cancer.
These feelings are all normal for people with cancer. One woman with breast
cancer said,
"When I feel guilty that I caused my cancer, I think of little children who
have cancer. That makes me realize that cancer can just happen. It isn't my
fault."
Your family and friends may also feel guilty because:
-
they are healthy while you are ill
-
they can't help you as much as they want
-
they feel stressed and impatient
They may also want to be perfect and feel guilty when they cannot give you all
the care and understanding you need.
Counseling and support groups can help with these feelings of guilt. Let your
doctor or nurse know if you, or someone in your family, would like to talk with
a counselor or go to a support group.
People with cancer often feel lonely or distant from others. You may find that
your friends have a hard time dealing with your cancer and may not visit. Some
people might not even be able to call you on the phone. You may feel too sick
to take part in the hobbies and activities you used to enjoy. And sometimes,
even when you are with people you love and care about, you may feel that no one
understands what you are going through.
You may feel less lonely when you meet other people who have cancer. Many
people feel better when they join a support group and talk with others who are
facing the same challenges. (See
"People Helping People.")
Shared joy is a double joy; shared sorrow is half a sorrow.
--Swedish Proverb
|
Not everyone wants or is able to join a support group. Some people prefer to
talk with just one person at a time. You may feel better talking to a close
friend or family member, someone from your own religion, or a counselor.
Once people accept that they have cancer, they often feel a sense of hope. There
are many reasons to feel hopeful.
-
Cancer treatment can be successful. Millions of people who have had cancer are
alive today.
-
People with cancer can lead active lives, even during treatment.
-
Your chances of living with--and living beyond--cancer are better now than they
have ever been before. People often live for many years after their cancer
treatment is over.
Some doctors think that hope may help your body deal with cancer. Scientists are
looking at the question of whether a hopeful outlook and positive attitude
helps people feel better. Here are some ways you can build your sense of hope:
-
Write down your hopeful feelings and talk about them with others.
-
Plan your days as you always have done.
-
Don't limit the things you like to do just because you have cancer.
-
Look for reasons to hope.
However long the night, the dawn will break.
--Hausa (African) Proverb
|
You may find hope in nature, or your religious or spiritual beliefs. Or you may
find hope in stories (such as the ones in this book) about people with cancer
who are leading active lives.
You will have many feelings as you learn to live with cancer. These feelings can
change from day to day, hour to hour, or even minute to minute.
Feelings of denial, anger, fear, stress and anxiety, depression, sadness, guilt,
and loneliness are all normal. So is a feeling of hope. While no one is
cheerful all the time, hope is a normal and positive part of your cancer
experience.
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Back to Top
Family Matters
Cancer will change your life and the lives of people around you.
-
Your routines may be messed up.
-
Roles and duties may change.
-
Relationships can be strained or strengthened.
-
Dealing with money and insurance can cause problems.
-
You may need to live with someone else for a while.
-
You may need help with chores and errands.
Most people find that if they, their friends, and family talk about the cancer
and how it makes them feel, they feel closer to each other.
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Families are not all alike. Your family may include a spouse (husband or wife),
children, and parents. Or maybe you think of your partner or close friends as
your family. In this book, "family" refers to you and those who love and
support you.
Cancer affects the whole family, not just the person with the disease. How are
the people in your family dealing with your cancer? Maybe they are afraid or
angry, just like you.
When you first find out you have cancer and are going through treatments,
day-to-day routines may change for everyone. For example, someone in your
family may need to take time off work to drive you to treatments. You may need
help with chores and errands.
How your family reacts to your cancer may depend a lot on how you've faced hard
times in the past.
Some families find it easy to talk about cancer. They may easily share their
feelings about the changes that cancer brings to their lives. Other families
find it harder to talk about cancer. The people in these families may be used
to solving problems alone and not want to talk about their feelings.
Families that have gone through divorce or had other losses may have even more
trouble talking about cancer. As one woman with lung cancer said,
"Talking about my cancer was rough at first. My husband and I divorced five
years ago, so my mom had to move in and help me with the boys. Eventually, I
was able to tell my ex-husband about my cancer, and he helped the boys
understand. Our family has been through a lot, and we'll get through this, too.
To me, the only constant in life is change."
If your family is having trouble talking about feelings, think about getting
some help. Your doctor or nurse can refer you to a counselor who can help
people in your family talk about what cancer means to them. Many families find
that, even though it can be hard to do, they feel close to each other when they
deal with cancer together.
When someone in a family has cancer, everyone takes on new roles and
responsibilities. For example, a child may be asked to do more chores or a
spouse or partner may need to help pay bills, shop, or do yard work. Family
members sometimes have trouble adjusting to these new roles.
Adjusting to Your New Situation
Many families have trouble getting used to the role changes that may be
required when a loved one has cancer.
Money. Cancer can reduce the amount of money your family has to spend or
save. If you are not able to work, someone else in your family may need to get
a job. You and your family will need to learn more about health insurance and
find out what your insurance will pay for and what you need to pay for. Most
people find it stressful to keep up with money matters. (For more information
about cancer and your work, see
"Living Each Day".)
Living arrangements. People with cancer sometimes need to change where
they live or whom they live with. Now that you have cancer, you may need to
move in with someone else to get the care you need. This can be hard because
you may feel that you are losing your independence, at least for a little
while. Or, you may need to travel far from home for treatment. If you have to
be away from home for treatments take a few little things from home with you.
This way, there will be something familiar even in a strange place.
Daily activities. You may need help with duties such as paying bills,
cooking meals, or coaching your children's teams. Asking others to do these
things for you can be hard. A young father in treatment for colon cancer said,
"When I came home from the hospital, I wanted to be in charge again but simply
didn't have the energy. It was so hard to ask for help! It was easier to accept
help when I realized that my kids felt that they were contributing to my
recovery."
Developing a Plan
Even when others offer to help, it is important to let people know that you can
still do some things for yourself. As much as you are able, keep up with your
normal routine by making decisions, doing household chores, and working on
hobbies that you enjoy.
Asking for help is not a sign of weakness. Think about hiring someone or asking
for a volunteer. Health insurance sometimes pays for people to help with
household chores. You might be able to find a volunteer through groups in your
community.
Paid help or volunteers may be able to help with:
-
physical care, such as bathing or dressing
-
household chores, such as cleaning or food shopping
-
skilled care, such as giving you special feedings or medications
Just as you need time for yourself, your family members also need time to rest,
have fun, and take care of their other duties. Respite care is a way people can
get the time they need. In respite care, someone comes to your home and takes
care of you while your family member goes out for a while. Let your doctor or
social worker know if you want to learn more about respite care. (See
"People Helping People.")
"I was scared by my husband's cancer. He had always taken care of me and we did
everything together. I was afraid I would not be strong enough to help him
through his recovery. I was afraid that he might not recover. I was afraid to
talk about my fears with him because I did not want to upset him."
Your husband, wife, or partner may feel just as scared by cancer as you do. You
both may feel anxious, helpless, or afraid. You may find it hard to be taken
care of by someone you love.
People react to cancer in different ways. Some cannot accept that cancer is a
serious illness. Others try too hard to be "perfect" caregivers. And some
people refuse to talk about cancer. For most people, thinking about the future
is scary.
It helps if you and the people close to you can talk about your fears and
concerns. You may want to meet with a counselor who can help both of you talk
about these feelings.
Sharing Information
Including your spouse or partner in treatment decisions is important. You can
meet with your doctor together and learn about your type of cancer. You might
want to find out about common symptoms, treatment choices, and their side
effects. This information will help both of you plan for the future.
Your spouse or partner will also need to know how to help take care of your body
and your feelings. And, even though it is not easy, both of you should think
about the future and make plans in case you die from your cancer. You may find
it helpful to meet with a financial planner or a lawyer.
Staying Close
Everyone needs to feel needed and loved. You may have always been the "strong
one" in your family, but now is the time to let your spouse or partner help
you. This can be as simple as letting the other person fluff your pillow, bring
you a cool drink, or read to you.
Feeling sexually close to your partner is also important. You may not be
interested in sex when you are in treatment because you feel tired, sick to
your stomach, or in pain. But when your treatment is over, you may want to have
sex again. Until then, you and your spouse or partner may need to find new ways
to show that you care about each other. This can include touching, holding,
hugging, and cuddling. (See also
"Dealing with a New Self-Image.")
Time Away
Your spouse or partner needs to keep a sense of balance in his or her life. He
or she needs time to take care of personal chores and errands. Your partner
will also need time to sort through his or her own feelings about cancer. And
most importantly, everyone needs time to rest. If you do not want to be alone
when your loved one is away, think about getting respite care or asking a
friend to stay with you. (See
"Caregivers".)
Even though your children will be sad and upset when they learn about your
cancer, do not pretend that everything is okay. Even very young children can
sense when something is wrong. They will see that you do not feel well or are
not spending as much time with them as you used to. They may notice that you
have a lot of visitors and phone calls or that you need to be away from home
for treatment and doctor's visits.
What the family talks about in the evening, the child will talk about in the
morning.
--Kenyan Proverb
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Telling Children About Cancer
Children as young as 18 months old begin to think about and understand what is
going on around them. It is important to be honest and tell your children that
you are sick and the doctors are working to make you better. Telling them the
truth is better than letting them imagine the worst. Give your children time to
ask questions and express their feelings. And if they ask questions that you
can't answer, let them know that you will find out the answers for them.
When you talk with your children, use words and terms they can understand. For
example, say "doctor" instead of "oncologist" or "medicine" instead of
"chemotherapy." Tell your children how much you love them and suggest ways they
can help with your care. Share books about cancer that are written for
children. Your doctor, nurse, or social worker can suggest good ones for your
child.
Let other adults in your children's lives know about your cancer. This includes
teachers, neighbors, coaches, or other relatives who can spend extra time with
them. These other adults may be able to take your children to their activities,
as well as listen to their feelings and concerns. Your doctor or nurse can also
help by talking with your children and answering their questions.
How Children May React
Children can react to cancer in many different ways. For example, they may:
-
be confused, scared, or lonely
-
feel guilty and think that something they did or said caused your cancer
-
feel angry when they are asked to be quiet or do more chores around the house
-
miss the amount of attention they are used to getting
-
regress and behave as they did when they were much younger
-
get into trouble at school or at home
-
be clingy and afraid to leave the house
"Now that my Mom has cancer, everything is changed. I want to be with her, but
I want to hang out with my friends, too. She needs me to help with my little
brother, but what I really want to do is play football like I used to."
Teenagers and a Parent's Cancer
Teens are at a time in their lives when they are trying to break away and be
independent from their parents. When a parent has cancer, breaking away can be
hard for them to do. They may become angry, act out, or get into trouble.
Try to get your teens to talk about their feelings. Tell them as much as they
want to know about your cancer. Ask them for their opinions and, if possible,
let them help you make decisions.
Teens may want to talk with other people in their lives. Friends can be a great
source of support, especially those who also have serious illness in their
family. Other family members, teachers, coaches, and spiritual leaders can also
help. Encourage your teenage children to talk about their fears and feelings
with people they trust and feel close to. Some towns even have support groups
for teens whose parents have cancer.
What children of all ages need to know:
About cancer
-
Nothing your child did, thought, or said caused you to get cancer.
-
You can't catch cancer from another person. Just because you have cancer does
not mean that others in your family will get it, too.
-
Just because you have cancer does not mean you will die from it. In fact, many
people live with cancer for a long time.
-
Scientists are finding many new ways to treat cancer.
About living with cancer in the family
-
Your child is not alone. Other children have parents who have cancer.
-
It is okay to be upset, angry, or scared about your illness.
-
Your child can't do anything to change the fact that you have cancer.
-
Family members may act differently because they are worried about you.
-
You will make sure that your children are taken care of, no matter what happens
to you.
About what they can do
-
They can help you by doing nice things like washing dishes or drawing you a
picture.
-
They should still go to school and take part in sports and other fun
activities.
-
They can talk to other adults such as teachers, family members, and religious
leaders.
|
Your relationship with your adult children may change now that you have cancer.
You may:
-
Ask your adult children to take on new duties, such as making health care
decisions, paying bills, or taking care of the house.
-
Ask your children to explain some of the information you've received from your
doctor or to go with you to doctor's visits so they can also hear what the
doctors are telling you.
-
Rely on your adult children for emotional support. For instance, you may ask
them to act as "go-betweens" with friends or other family members.
-
Want your adult children to spend a lot of time with you. This can be hard,
especially if they have jobs or young families of their own.
-
Find it hard to receive--rather than give--comfort and support from your
children.
-
Feel awkward when your children help with your physical care, such as feeding
or bathing.
As the adult daughter of a woman with ovarian cancer said,
"Mom was always the rock in the family. Whenever any of us had a problem, we
could go to her for help. Now we had to help her. It was almost as though we
were the parents and she was the child. To make it even harder, we had our own
children to take care of and jobs to go to."
Talking With Your Adult Children
It is important to talk about cancer with your adult children, even if they get
upset or worry about you. Include them when talking about your treatment. Let
them know your thoughts and wishes, in case you do not recover from your
cancer.
Even adult children worry that their parents will die. When they learn that you
have cancer, adult children may realize how important you are to them. They may
feel guilty if they haven't been close with you. They may feel bad if they
cannot spend a lot of time with you because they live far away or have other
duties. Some of these feelings may make it harder to talk to your adult
children. If you have trouble talking with your adult children, ask your doctor
or nurse to suggest a counselor you can all talk with.
Make the most of the time you have with your adult children. Talk about how
much you mean to each other. Express all your feelings--not just love but also
anxiety, sadness, and anger. Don't worry about saying the wrong thing. It's
better to share your feelings rather than hide them.
One who conceals grief finds no remedy for it.
--Turkish Proverb
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Cancer Risk for the Children of People Who Have Cancer
Now that you have cancer, your children may wonder about their chance of getting
it as well. Suggest they talk with a doctor about their risk of getting cancer.
Gene tests can be a way to find out if a person
is at higher risk of getting cancer.
A higher risk for some types of cancer are passed from parent to child. For
instance, the daughter of a woman with breast cancer may be at risk for getting
the same disease. But chances are that her risk is no different than other
women her age. If concerned, however, children should talk with a doctor about
their risk of getting cancer.
Although some gene tests can be helpful, they do not always give people the
kinds of answers they are seeking. Talk to your doctor if you or someone in
your family wants to learn more about gene testing for cancer. He or she can
refer you to a person who is specially trained in this area. These experts can
help you think through your choices and answer your questions.
Since people are living much longer these days, many people with cancer may also
be caring for their aging parents. For example, you may help your parents with
their shopping or take them to doctor. Your aging parents may even live with
you.
You have to decide how much to tell your parents about your cancer. Your
decision may depend on how well your parents can understand and cope with the
news. If your parents are in good health, think about talking with them about
your cancer.
Now that you have cancer, you may need extra help caring for your parents. You
may need help only while you are in treatment. Or you may need to make
long-term changes in your parents' care. Talk with your family members,
friends, health professionals, and community agencies to see how they can help.
(See
"People Helping People")
Do not protect yourself by a fence, but rather by your friends.
--Czech Proverb
|
Once friends learn of your cancer, they may begin to worry. Some will ask you to
tell them ways to help. Others will wonder how they can help but may not know
how to ask. You can help your friends cope with the news by letting them help
you in some way. Think about the things your friends do well and don't mind
doing. Make a list of things you think you might need. This way, when they ask
you how they can be of help, you'll be able to share your list of needs and
allow them to pick something they're willing to do.
Sample list of need:
-
Baby-sit on days that I go to treatment.
-
Prepare frozen meals for my "down days."
-
Put my name on the prayer list at my place of worship.
-
Bring me a few books from the library when you go.
-
Visit for tea or coffee when you can.
-
Let others know that it is alright to call or visit me (or let others know that
I'm not ready for visitors just yet).
Families come in many forms. Some are husband, wife, and children. Others are
life partners. Still others are groups of people who love and support each
other.
No matter what form your family takes, your cancer will not only change your
life, but also the lives of those around you.
Cancer impacts families in different ways.
-
Talking about cancer can be hard for some families.
-
Routines of family life may be messed up.
-
Roles and duties within the family will change.
-
Relationships can be both strained and strengthened.
-
Dealing with money and insurance often become hard.
-
You may need to change where you live and with whom, at least for a while.
As you think about how cancer has changed your life and your family's life,
think about reaching outside your family to get help.
-
You may need help with household chores and errands.
-
Respite care can give your regular caregivers a much-needed break.
-
Counseling and support groups can help your family deal with the issues that
cancer raises.
Most families find that being honest and open about the cancer, about the
problems that arise, and about their feelings, helps them handle the changes
that cancer causes.
|
Back to Top
Sharing Your Feelings About Cancer
Talking about your feelings can help you deal with your cancer.
-
Choose a good listener.
-
Choose a good time to share your feelings.
-
Understand your feelings of anger.
-
Don't act cheerful when you don't feel that way.
You may need to find someone outside your family to talk to.
Cancer is too much to handle all by yourself.
|
Just as you have strong feelings about cancer, your family or friends will react
to it as well. For instance, your friends or family may:
-
hide or deny their sad feelings
-
find someone to blame for your cancer
-
change the subject when someone talks about cancer
-
act mad for no real reason
-
make jokes about cancer
-
pretend to be cheerful all the time
-
avoid talking about your cancer
-
stay away from you, or keep their visits short
It can be hard to talk about how it feels to have cancer. But talking can help,
even though it is hard to do. Many people find that they feel better when they
share their thoughts and feelings with their close family and friends.
Friends and family members may not always know what to say to you. Sometimes
they can help by just being good listeners. They don't always need to give you
advice or tell you what they think. They simply need to show that they care and
are concerned about you.
You might find it helpful to talk about your feelings with people who are not
family or friends. Instead, you might want to meet in a support group with
others who have cancer or talk with a counselor. You can find more information
about where to go for help in
"People Helping People".
A single arrow is easily broken, but not ten in a bundle.
--Japanese Proverb
|
Some people need time before they can talk about their feelings. If you are not
ready, you might say, "I don't feel like talking about my cancer right now."
And sometimes when you want to talk, your family and friends may not be ready
to listen.
It is hard for other people to know when to talk about cancer. Sometimes people
send a signal when they want to talk. They might:
-
bring up the subject of cancer
-
talk about things that have to do with cancer, such as a newspaper story about
a new cancer treatment that they just read
-
spend more time with you
-
act nervous or make jokes that aren't very funny
You can help people feel more comfortable by asking them what they think or how
they feel. Sometimes people can't put their feelings into words. Sometimes,
they just want to hug each other or cry together. A man with stomach cancer
said,
"It was really hard to get my sister to talk about my cancer. Finally, I just
said to her, 'I know you're really worried and scared. So am I. Let's talk
about it.' She was so relieved that I had brought the subject up."
Many people feel angry or frustrated when they deal with cancer. You might find
that you get mad or upset with the people you depend on. You may get upset with
small things that never bothered you before.
People can't always express their feelings. Anger sometimes shows up as actions
instead of words. You may find that you yell a lot at the kids or the dog. You
might slam doors.
Try to figure out why you are angry. Maybe you are afraid of the cancer or are
worried about money. You might even be angry about your treatment. A man with
advanced cancer said,
"I got so angry some days that I just wanted to take it out on something. On
those days, I always tried to be angry at my cancer, not at my wife and
daughter."
When anger rises, think of the consequences.
--Confucius
|
Some people pretend to be cheerful, even when they are not. They think that they
will not feel sad or angry when they act cheerful. Your family and friends may
not want to upset you and will act as if nothing is bothering them. You may
think that by being cheerful, your cancer will go away.
When you have cancer, you have many reasons to be upset. "Down days" are to be
expected. Don't pretend to be cheerful when you're not. This can keep you from
getting the help you need. Be honest and talk about all your feelings, not just
the cheerful ones. An older woman with liver cancer said,
"The advice of well-meaning friends to be positive, optimistic, and upbeat can
also be a call for silence. Ask them about it. Don't let them force you to put
on a fake smile when that's the last thing you feel like doing."
For many, it's hard to talk about being sick. Others feel that cancer is a
personal or private matter and find it hard to talk openly about it. If talking
is hard for you, think about other ways to share your feelings. For instance,
you may find it helpful to write about your feelings. This might be a good time
to start a journal or diary if you don't already have one. Writing about your
feelings is a good way to sort through them and a good way to begin to deal
with them. All you need to get started is something to write with and something
to write on.
Journals can be personal or shared. People can use a journal as a way of
'talking' to each other. If you find it hard to talk to someone near to you
about your cancer try starting a shared journal. Leave a booklet or pad in a
private place that both of you select. When you need to share, write in it and
return it to the private place. Your loved one will do the same. Both of you
will be able to know how the other is feeling without having to speak aloud.
If you have e-mail, this can also be a good way to share without talking.
Cancer is hard to deal with all alone. Although talking about your cancer can be
hard at first, most people find that sharing their thoughts and feelings helps
them deal with their cancer.
Keep in mind:
-
Choose a good listener. You may not need someone to give you advice or
tell you what to do. Instead, you may want someone who wants to hear about and
try to understand what life is like for you right now. You may need to look
outside your family to find such a person.
-
Choose a good time to share. Sometimes people will send signals to let
you know they are willing to talk about cancer with you. Sometimes you can ask
others about their thoughts and feelings.
-
Understand anger. Sometimes angry words come from emotions other than
anger, like frustration, worry, or sadness. Try to figure out why you feel
angry and why you need to express it. Don't run away from these feelings--share
them and try to understand them.
-
Don't pretend to be cheerful. You may want to spare those around you
from your strong feelings, but acting cheerful will not help you express your
true feelings. Acting cheerful will not give others a true picture of your
thoughts and feelings.
-
Turn to community resources for help. A support group or a counselor
might be able to provide more support.
Back to Top
Learning About Your Cancer and Feeling More in Control
When you first learn you have cancer, daily life can feel like it is turned
upside down. Learning more about your type of cancer and its treatment can help
you feel more in control.
Learn about your type of cancer and its treatment by:
-
asking your doctor or nurse questions
-
taking notes during your doctor visits
-
getting a second opinion
-
calling the Cancer Information Service at 1-800-422-6237
-
looking up your type of cancer on the Internet at http://www.cancer.gov
-
visiting a public library or a hospital library for patients and families
Learning about your cancer can help you talk to your doctor about which
treatment is right for you.
|
"At first, I felt overwhelmed. But once I gathered information, I felt
comfortable talking with my doctor about my cancer and ready to make decisions
about my treatment."
Cancer can rob people of a sense of control over their lives. You may feel that
your future is uncertain and you do not know if you will live or die. Or you
may rely on doctors you hardly know to help you make health decisions.
People often feel more in control when they learn as much as they can about
cancer and its treatment. They say that it is easier to make decisions when
they know what to expect. How much do you know about your cancer and its
treatment?
When you see clouds gathering, prepare to catch rainwater.
--Gola (African) Proverb
|
Doctors, nurses, and other health care providers can teach you a lot about
cancer and its treatment. But sometimes people have trouble learning because
they are scared or confused. These feelings can make it hard to learn new
information. But, there are things you can do to make it easier to learn.
Ask your doctor or nurse to write down the name and stage of your cancer.
There are many different types of cancer and each type has its own name. "Stage"
refers to the size of the cancer tumor and how far it has spread in your body.
Knowing the name and stage of your cancer will help:
-
you find out more about your cancer
-
your doctor and you decide what treatment choices you have
Ask as many questions as you need to.
Your doctor needs to know your questions and concerns. Write down your
questions and bring them with you to the doctor's visit. Sometimes you can even
send your questions ahead of time. Your doctor can get information ready for
you if he or she knows your questions in advance. If you have a lot of
questions, you and your doctor may want to plan extra time to talk about them.
Don't worry if your questions seem silly or don't make sense.
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.
One who asks is a fool for five minutes, but one who does not ask remains a
fool forever.
--Chinese Proverb
|
Take someone along 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 when you see the doctor, ask your doctor if he or she will talk with a
friend or family member over the phone.
Take notes or tape 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 tape 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.
You can learn about your treatment choices by:
-
asking your doctor
-
getting a second opinion
-
calling 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
-
reading about your type of cancer on the Internet
Every road has two directions.
--Russian Proverb
|
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.
Read About Your Type of Cancer on the National Cancer Institute Web site
at http://www.cancer.gov
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.
-
Contact 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.
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.
|
Back to Top
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 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
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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:
-
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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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 is not 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 are 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
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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, even before
treatment begins. This way, 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.
If you think you might want to have children in the future, ask your doctor to
refer you to a fertility doctor before you begin treatment for your cancer.
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 are very tired. This fatigue is likely to last for a while
after treatment is over. For some people, it can last for many months.
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 am so tired, it's an effort to just get out of bed."
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.
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.
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 a child 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.
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.
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 a good relationship before cancer treatment, they have a good
basis for dealing with new problems. If the relationship has problems, the real
reasons for these problems were probably there before the cancer."
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."
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.
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.
If you are single, you may worry about dating. You may be afraid that you are
not as good looking as you used to be. 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 reluctance to let him see my
body. He was very reassuring. He said it didn't matter to him-- that I was
important for who I was, not how my body looked."
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
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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
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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.
"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
|
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, go to
"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 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 patients fill up our lives with meaningful activities and neglect
the frivolous outlets 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.
The journey is the reward.
--Tao Proverb
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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
-
controls stress
-
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.
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.
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 is 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. Your social
worker 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.
-
Contact 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 a
library.
-
Visit the Web site for the National Cancer Institute's State Cancer Legislative
Database Program at http://www.scld-nci.net/
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.
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. 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 figured out 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 talk 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
Advance directives are legal papers that allow you to decide ahead of time how
you want to be treated when you are dying. They help your loved ones and
doctors know what to do if, and when, you can't tell them yourself.
People with cancer face a lot of choices about the future. It's hard to talk
about the end of your life. But when you do, you can have peace of mind. You
will know you cared enough to make hard choices for yourself, instead of
leaving them for your loved ones and health care providers.
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
-
A trust to give your money or things you own to someone else
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 "Need Help?" button to send a message.
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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.
Living with cancer means not only looking at death but also how to live the rest
of your life--whether it is long or short. Take care of daily duties and do
things that are fun. Both are needed for a full life.
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
-
making plans for the future
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Back to Top
Resources for Learning More
You may want more information for yourself, your
family, and your doctor. These services from the National Cancer Institute
(NCI) may help you.
Cancer Information Service (CIS) Provides accurate,
up-to-date information on cancer to patients and their families, health
professionals, and the general public. Information specialists translate the
latest scientific information into understandable language and respond in
English, Spanish, or on TTY equipment.
Toll-free: 1-800-4-CANCER (1-800-422-6237)
TTY (for deaf and hard of hearing callers): 1-800-332-8615
http://www.cancer.gov
NCI's Web site contains comprehensive information
about coping with cancer, cancer causes and prevention, screening and
diagnosis, treatment and survivorship; clinical trials; statistics; funding,
training, and employment opportunities; and the Institute and its programs.
...to find other cancer groups...
See the section on Cancer Organizations in Facing Forward: Life After Cancer Treatment. This
booklet contains information about many groups that provide services to people
with cancer.
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