This Booklet Is For You
You've Just Learned That Your Parent Has Cancer
Learning About Cancer
Cancer Treatment
What Your Parent May Be Feeling
Changes in Your Family
Taking Care of Yourself
Finding Support
You and Your Friends
How You Can Help Your Parent
After Treatment
The Road Ahead
Learning More on Your Own
Appendix A: Monitoring Tests
Appendix B: Cancer Team Members
Acknowledgments
This Booklet Is For You
If your mom, dad, or an adult
close to you has cancer, this
booklet is for you.
Here you can read about what
has helped other teens get
through this tough time.
Doctors, nurses, social
workers, friends, and family
are working hard to help
your mom or dad get better.
You are a very important
part of that team, too.
In the weeks and months
ahead, you may feel a whole range of emotions.
Some days will be good, and things might seem like they used to.
Other days may be harder.
This booklet can help prepare you for some of the things you
might face. It can also help you learn to handle living with a
parent or relative who has cancer.
| Free copies of this booklet are available from the National
Cancer Institute (NCI). To learn more about cancer or to
request this booklet, visit NCI's Web site (www.cancer.gov).
You can also call NCI's Cancer Information Service at
1-800-4-CANCER (1-800-422-6237) to order the booklet
or talk with an information specialist. |
You may want to read this booklet cover to cover. Or maybe
you'll just read those sections that interest you most. Some
teens pull the booklet out now and again when they need it.
You may want to share this booklet with your mom, dad,
brothers, and sisters. It might help you bring up something
that has been on your mind. You could ask people in your
family to read a certain chapter and then talk about it
together later.
We've put words that may be new to you in bold. Click on the words to see their definitions.
You've Just Learned That Your Parent Has Cancer
"I knew something was
wrong the minute I walked in the
kitchen. My mom was so quiet. Then
Mom told me she has cancer. I felt
like I was going to faint. I could
barely hold the tears back. I felt so
scared. I ran to my room and just
sat on the bed for the longest time.
I called my best friend and kind of
lost it."
- Sarah, age 16
You've just learned that
one of the most
important people in your
life has cancer. Do you
feel shocked, numb,
angry, or afraid?
Do you feel like life is
unfair? One thing is
certain - you don't
feel good.
For now,
try to focus
on these facts:
- Many people survive cancer. There are nearly 10 million
cancer survivors living in the U.S. today. That's because
scientists are discovering new and better ways to find and
treat cancer. During this really tough time, it will help you to
have hope.
- You're not alone. Right now it might seem that no one else
in the world feels the way you do. In a way you're right.
No one can feel exactly like you do. But it might help to
know that many teens have a parent who has cancer.
Talking to others may help you sort out your feelings.
Remember, you are not alone.
- You're not to blame. Cancer is a disease with various
causes, many of which doctors don't fully understand.
None of these causes has anything to do with what you've
done, thought, or said.
- Balance is important. Many teens feel like their parent's
cancer is always on their mind. Others try to avoid it. Try
to strike a balance. You can be concerned about your
parent and still stay connected with people and activities
that you care about.
- Knowledge is power. It can help to learn more about
cancer and cancer treatments. Sometimes what you
imagine is actually worse than the reality.
"I used to be
a real easygoing, happy person.
Since my dad got cancer
I started blowing up over little
things. My counselor at school
got me in a group of kids
who have a mom or dad with
cancer. Meeting with kids who
are going through the same
thing helps a lot."
- Aaron, age 14
As you deal with your parent's cancer, you'll probably feel all
kinds of things.
Many other teens who have a parent with cancer
have felt the same way you do now. Some of these emotions
are listed below. Think about people you can talk with
about your feelings.
|
Scared
- My world is falling apart.
- I'm afraid that my parent might die.
- I'm afraid that someone else in my family might catch
cancer. (They can't.)
- I'm afraid that something might happen to my parent at
home, and I won't know what to do.
|
It's normal to feel scared when your parent has cancer. Some of
your fears may be real. Others may be based on things that won't
happen. And some fears may lessen over time.
|
Guilty
- I feel guilty because I'm healthy and my parent is sick.
- I feel guilty when I laugh and have fun.
|
You may feel bad about having fun when your parent
is sick. However, having fun doesn't mean that you
care any less. In fact, it will probably help your
parent to see you do things you enjoy.
|
Angry
- I am mad that my mom or dad got sick.
- I am upset at the doctors.
- I am angry at God for letting this
happen.
- I am angry at myself for feeling
the way I do.
|
Anger often covers up other feelings that are harder to show.
Try not to let your anger build up.
|
Neglected
- I feel left out.
- I don't get any attention any more.
- No one ever tells me what's going on.
- My family never talks anymore.
|
When a parent has cancer, it's common for the family's focus to
change. Some people in the family may feel left out. Your parent
with cancer may be using his or her energy to get better. Your
well parent may be focused on helping your parent with cancer.
Your parents don't mean for you to feel left out. It just happens
because so much is going on.
|
Lonely
- No one understands what I'm going through.
- My friends don't come over anymore.
- My friends don't seem to know what to say to me anymore.
|
We look at some things you can do to help
situations with friends in Chapter 8. For
now, try to remember that these feelings
won't last forever.
|
Embarrassed
- I'm sometimes embarrassed to be out in public with my
sick parent.
- I don't know how to answer people's questions.
|
Many teens who feel embarrassed about having
a parent with cancer say it gets easier to deal
with over time.
There is no one "right" way to feel. And you're not alone - many
other teens in your situation have felt the same way. Some have
said that having a parent with cancer changes the way they look
at things in life. Some even said that it made them stronger.
"Sometimes what helped me the most was to run or kickbox until I was exhausted."
- Jed, age 16
A lot of people are uncomfortable sharing their feelings. They
ignore them and hope they'll go away. Others choose to act
cheerful when they're really not. They think that by acting upbeat
they won't feel sad or angry anymore. This may help for a little
while, but not over the long run.
Actually, holding your feelings
inside can keep you from getting the help that you need.
Try these tips:
- Talk with family and friends that you feel close to. You owe it
to yourself.
- Write your thoughts down in a journal.
- Join a
support group
to meet with other teens who are
facing some of the same things you are. Or meet with a
counselor. We'll learn more about these ideas in the section called Finding Support 1.
It is probably hard to imagine right now, but, if you let yourself,
you can grow stronger as a person through this experience.
| Does this sound like you? |
|
Many kids think that they need to protect their parents by
not making them worry. They think that they have to be
perfect and not cause any trouble because one of their
parents is sick. If you feel this way, remember that no one
can be perfect all the time. You need time to vent, to feel
sad, and to be happy. Try to let your parents know how you
feel - even if you have to start the conversation.
|
"I just kept telling myself
that I was going to let
this experience make me -
not break me."
- Lydia, age 16
"After Dad got cancer, my big sister always
seemed to be making excuses to get out of the
house. One day, I just told her off. Instead of
getting mad, she started crying. She said she
couldn't stand seeing Dad hurting. I told her I
felt the same way. Now we talk more and keep
each other going. It's good."
- Jamie, age 13
Learning About Cancer
"When Dad told me he had cancer,
I got really scared. Everything I'd
always heard about cancer was just
terrible. Then I thought, 'Hey, what do
I really know about cancer?' The answer
was, 'Not much.' So I started reading
books and stuff on the Internet. My dad
even told me that some of what I found
on the Web wasn't right for the kind
of cancer he has. Cancer is still pretty
scary, but I've learned that people
survive it. I'm not so afraid anymore."
- Abdul, age 14
Learning about
cancer will help you
understand what
your parent is going
through. Knowing
what cancer is and
how it spreads may
take some of the fear
out of it. Some of
what you have seen
or heard about
cancer may not apply
to your parent. Most
people feel better
when they know what
to expect.
| Here are a few things to remember: |
- Nothing you did, thought, or said caused your parent
to get cancer.
- You can't catch cancer from another person.
- Scientists are discovering new and better ways to find
and treat cancer.
- Many people survive cancer.
|
Doctors have found more than 100 different types of cancer. Cancer
is a group of many related diseases that begin in
cells, the body's
basic unit of life. To understand cancer, it's helpful to know what
happens when normal cells become cancer cells.
Normally, cells grow and divide to make more cells only when the
body needs them. This orderly process helps keep the body
healthy. Sometimes, however, cells keep dividing when new cells
aren't needed. These extra cells form a mass of
tissue
called a
growth, or
tumor. Tumors can be
benign
or
malignant.
- Benign tumors aren't cancerous. They can often be
removed and don't spread to other parts of the body.
- Malignant tumors are cancerous. Cells in these tumors
are abnormal and divide and grow without control or order.
They can invade and damage nearby tissues and spread to
organs in other parts of the body. The spread of cancer from
one part of the body to another is called
metastasis.
Most cancers are named for the organ or type of cell in which they
begin. For example, cancer that begins in the lung is called lung
cancer. Some cancers do not form a tumor. For example,
leukemia
is a cancer of the
bone marrow
and blood.
The causes of most cancers aren't known. Scientists are still
learning about things that may put people at a higher
risk
for
certain types of cancer. These things include smoking, spending too
much time in the sun, eating poorly, not getting enough exercise,
and coming into contact with certain types of chemicals and
toxins.
Some kids worry that they might get cancer, too. While no one
can tell the future, it is good to know that most cancers are not
passed down from parent to child. You and your parent can talk
to a doctor for more information.
Every year scientists discover better ways to treat cancer. That
means many people are successfully treated for cancer. However,
doctors are careful not to use the word "cure" until a patient
remains free of cancer for several years. Cancer treatment may
cause a
remission, which means that the doctor can't find signs
of cancer. But sometimes the cancer comes back. This is called a
relapse
or
recurrence. Whether your parent can be cured of
cancer depends on many things, and no booklet can tell you
exactly what to expect. It is best to talk with your parent and his
or her doctor or nurse.
| Where to go for more information |
|
To learn more about the type of cancer your mom or
dad has, visit the National Cancer Institute's (NCI)
Web site (http://www.cancer.gov). You can also call
NCI's Cancer Information Service at 1-800-4-CANCER
(1-800-422-6237) to speak with an information
specialist. All calls are free and confidential.
|
Cancer Treatment
"Seeing my dad in pain
was the worst. One day
I just told him how bad
I felt for him. He said
that he actually looked
a lot worse than he
felt. I know he's having
a hard time, but knowing
he doesn't hurt as much
as I thought he did made
me feel a lot better."
- Ashley, age 15
Many teens want to know
what to expect during their
parent's cancer treatment.
This chapter briefly explains
different treatments, how
they work, and their
side effects. You will probably
have more questions after
reading this chapter. It may
help to talk with your parents
or ask if you can talk with a
nurse or social worker.
Cancer treatment aims to get rid of cancer cells. The type of
treatment your parent will be given depends on:
- The type of cancer
- Whether the cancer has spread
- Your parent's age and general health
- Your parent's medical history
- Whether the cancer is newly diagnosed or has recurred.
Remember that there are more than 100 different types of cancer.
Each type is treated differently.
Treatment follows a
protocol, which is a treatment plan. But even
if two people have the same type of cancer and the same
treatment plan, it may not work the same way for both of them.
This is because people's bodies can react differently to treatment.
Side effects happen because the cancer treatment targets fast-growing
cells. Cancer cells are fast-growing, but so are normal
cells like the ones in the digestive tract and hair, for example.
The treatment can't tell the difference between fast-growing
normal cells and fast-growing cancer cells. That's why people
sometimes get sick to their stomach and lose their hair when they
have
chemotherapy
(one type of cancer treatment).
Some side effects, like feeling sick to the stomach, go away
shortly after treatment, while others, like feeling tired, may last
for a while after treatment has ended.
Write down what treatment your mom or dad will get:
Use the chart below to find out more about
different types of cancer treatment.
|
|
|
This chart describes six types of cancer treatment, how they're done,
and some side effects. Your parent may get one or more of these
treatments. Depending on the exact treatment, he or she may visit
the doctor during the day, or stay overnight in the hospital.
| Treatment |
What is it? |
How is it done? |
What may
happen as a
result?
(side effects) |
Surgery
Also called an
operation
|
The removal
of all or part of
a solid tumor
|
A surgeon
operates to remove
the cancer. Drugs
are used so that
the patient is
asleep during
surgery.
|
- Pain after the
surgery
- Feeling tired
- Other side effects,
depending on the
area of the body
and the extent of
the operation.
|
Radiation
therapy
Also called
radiotherapy
|
The use of
high-energy
rays or
high-energy
particles to kill
cancer cells
and shrink
tumors
|
Radiation may
come from a
machine outside
the body or from
radioactive
material placed in
the body near the
cancer cells.
|
- Feeling tired
- Red or blistered
skin
- Other side
effects,
depending on
the area of the
body and the
dose of
radiation.
|
Chemotherapy
Also called
chemo
|
The use of
medicine to
destroy
cancer cells
|
The medicine can
be given as a pill,
an injection (shot),
or through an
intravenous (IV)
line. It is often
given in cycles
that alternate
between treatment
and rest periods.
|
- Feeling sick to
the stomach or
throwing up
- Loose bowel
movements or
not being able to
go to the
bathroom
- Hair loss
- Feeling very tired
- Mouth sores
- A feeling of numbness,
tingling, or
burning in the
hands and feet.
|
Stem cell
transplantation
Can be a bone
marrow
transplantation
(BMT) or a
peripheral blood
stem cell
transplantation
(PBSCT)
|
The use of
stem cells
found in either
the bone
marrow or the
blood. This
repairs stem
cells that were
destroyed by
high doses of
chemo and/or
radiation
therapy. |
Stem cell
transplantation
uses stem cells
from the patient or
from donors. In
many cases the
donors are family
members. The
patient gets these
stem cells through
an IV line.
|
- The side effects
can be much
like those from
chemo and
radiation
therapy. In
some cases, the
side effects
may be worse.
|
| Hormone
therapy |
A treatment
that adds,
blocks, or
removes
hormones
from the body.
Hormone
therapy is
especially
useful to slow
or stop the
growth of
some types of
cancers. |
Hormone therapy
can be given as a
pill, through an
injection, or
through a patch
worn on the skin.
Sometimes
surgery is needed
to remove the
glands that make
specific hormones. |
- Feeling hot
- Feeling tired
- Weight changes
- Mood changes.
|
Biological
therapy
Also called
immunotherapy
|
Biological
therapy uses
the body's
own defense
system (the
immune system) to
fight cancer
cells. |
Patients may be
given medicine in
pills, through an
injection, or
through an IV line. |
- Chills/fever
- Muscle aches
- Weakness
- Feeling sick to
the stomach or
throwing up
- Loose bowel
movements.
|
|
In addition to one or more of the treatments described in the
chart on the previous two pages, your parent will get tests to
monitor the cancer and how the treatment is working. A list of
common monitoring tests can be found in
Appendix A 2 in the back of
this booklet.
Some treatments may make your parent more likely to get an
infection. This happens because cancer treatment can affect the
white blood cells, which are the cells that fight infection. An
infection can make your mom or dad sicker. So your parent may
need to stay away from crowded places or people who have an
illness that he or she could catch (such as a cold, the flu, or
chicken pox).
Because of this, you may need to:
- Wash your hands with soap and water often to keep from
spreading germs
- Tell your parents when you've been around someone
who's sick or has a cold
- Stay away from your parent if you get sick.
It's hard to wait to see whether the treatment will work. Your
parent's doctor may try one treatment, then another. One day
your parent may feel a lot better. The next day or week he or she
may feel sick again. Treatment can go on for months or sometimes
years. This emotional roller coaster is hard on everyone.
During this time, remember that the treatment is working to stop
the cancer and make your parent better. For more information
about the people who will be treating your parent, see
Appendix B 3
in the back of this booklet.
"I had questions but didn't know who
to talk to. I asked my mom if I could
go with her to her doctor's visit, and
she said yes. The first time I just sat
there. The next time the doctor asked
if I had questions--so I asked a
couple. It was easier than I thought
it would be."
- Katie, age 14
Ask your parent or
other trusted adults
any questions that
you have.
Ask your dad or
mom if it is okay
to go with them to
their appointment.
Perhaps your parent
can arrange for you
to ask the nurse or
social worker a few
questions. To make
things easier:
- Bring a list of questions with you.
- Ask people to explain things using simple words.
- Ask for information to be repeated.
- Ask the doctor or nurse to show you things on a model or
draw a picture.
| Questions you might want to ask |
- What kind of cancer does my parent have?
- Will my parent get better?
- What are the chances I will get this kind of cancer, too?
|
| Questions about the treatment |
- What kind of treatment will my parent get? Will there be more than one?
- How do people feel when they get this treatment? Does it hurt?
- How often is this treatment given? How long will it last?
- Does the treatment change how people look, feel, or act?
- What happens if the treatment doesn't work?
- Where is the treatment given? Can I go along?
|
|
Here's space to write down your own questions: |
It's okay to ask these questions more than once.
|
"I
really
wanted
to
visit,
but
the
hospital
made
me
nervous.
I
wasn't
crazy
about
the
smell
and
didn't
like
seeing
Dad
hooked
up
to
machines.
I
made
excuses
not
to
visit,
but
I
missed
him
too
much.
Then
one
day
a
neighbor
drove
me
over
to
the
hospital
after
school.
I
took
my
homework
and
did
some
of
it
there.
Dad
looked
happy
just
watching
me--and
that
made
me
forget
about
how
strange
it
was
to
be
in
this
place."
- Keisha,
age
13
If your parent is in
the hospital, you
may be nervous
about visiting them.
Learn ahead of time
how your parent is
doing and what to
expect. Remember
that they are still
the same person,
even though they are
sick. Don't be afraid
to ask them questions
and share your
thoughts. You can
also call, write,
and e-mail them.
| Where to go for more information |
|
To learn more about cancer treatment, visit the National
Cancer Institute's (NCI) Web site
(http://www.cancer.gov).
Look for the booklets
Chemotherapy and You 4, Radiation and
You 5, or Biological Therapy 6, among others. You can also call
the NCI's Cancer Information Service at 1-800-4-CANCER
(1-800-422-6237) to speak with an information specialist.
All calls are free and confidential.
|
What Your Parent May Be Feeling
"My
mom
lost
all
her
hair
after
chemo.
She
started
wearing
hats.
People
stared
at
us.
I
felt
really
bad
that
I
was
embarrassed
to
be
with
her.
Then
my
mom
just
came
out
and
asked
me
what
I
was
thinking.
When
I
told
her,
she
said
she
wasn't
crazy
about
the
new
bald
look
either,
but
that
she
was
glad
to
be
alive.
Now
I
see
my
mom
first
as
one
very
brave
woman.
I
don't
care
who
stares."
- Ming,
age
16
Knowing how your parent may be feeling could help you figure
out how to help, or at least understand where he or she is coming
from. You may be surprised to learn that they are feeling a lot of
the same things you are:
- Sad or depressed. People with cancer sometimes can't do
things they used to do. They may miss these activities and
their friends. Feeling sad or down can range from a mild case
of the blues to
depression, which a doctor can treat.
- Afraid. Your parent may be afraid of how cancer will change
his or her life and the lives of family members. He or she may
be scared about treatment. Your parent may even be scared
that he or she will die.
- Anxious. Your parent may be worried about a lot of things.
Your mom or dad may feel stressed about going to work or
paying the bills. Or he or she may be concerned about
looking different because of treatment. And your mom or
dad is probably very concerned about how you are doing. All
these worries may upset your parent.
- Angry. Cancer treatment and its side effects can be difficult
to go through. Anger sometimes comes from feelings that
are hard to show, such as fear or frustration. Chances are
your parent is angry at the disease, not at you.
- Lonely. People with cancer often feel lonely or distant from
others. They may find that their friends have a hard time
dealing with their cancer and may not visit. They may be too
sick to take part in activities they used to enjoy. They may feel
that no one understands what they're going through.
- Hopeful. There are many reasons for your parent to feel
hopeful. Millions of people who have had cancer are alive
today. People with cancer can lead active lives, even during
treatment. Your parent's chances of surviving cancer are
better today than ever before.
All these feelings are normal for people living with cancer.
You might want to share this
list with your mom or dad.
Changes in Your Family
"After
Mom
got
cancer,
I
got
mad
at
everything.
It
wasn't
fair
that
I
had
to
watch
my
little
brother
and
clean.
I
felt
like
I
was
going
to
lose
it,
but
tried
to
stay
cool
and
told
my
mom
how
hard
things
were.
Now
I
still
have
chores,
but
my
little
brother
goes
to
a
friend's
after
school,
so
that
I
can
go
to
soccer.
My
mom's
awesome.
She
really
understood."
- Brandon,
age 15
Whatever your family situation, chances are that things have
changed since your parent got sick. This chapter looks at some of
these changes and ways that other teens have dealt with them.
| Does this sound like your home? |
- Are you doing more chores?
- Are you spending more time with
relatives or friends?
- Are you home alone more?
- Are you asked to help make dinner or
do the laundry?
- Are you looking after younger
brothers or sisters more?
- Do you want to just hang out with your
friends when you are needed at home?
|
Let your parents know if you feel that there is more to do than
you can handle. Together you can work it out.
Families say that it helps to make time to talk together, even if it's
only for a short time each week. Talking can help your family stay
connected.
Here are some things to consider when talking with:
Brothers and sisters
- If you are the oldest child, your brothers or sisters may look
to you for support. Help them as much as you
can. It's okay to let them know that
you're having a tough time, too.
- If you are looking to your older
brother or sister for help, tell
them how you are feeling. They can help, but won't have
all the answers.
| Try saying something like this . . . |
"I'm doing
the best job I can."
"How can we work
together to get
through this?"
|
Your parent who is well
- Expect your parent to feel some
stress, just as you do.
- Your parent may snap at you.
He or she may not always do or
say the right thing.
- Lend a hand when you can.
| Try saying something like this . . . |
"How are you
doing?"
"Is there anything
I can do to help
you out?"
|
Your parent with cancer
- Your mom or dad may be sick from the
treatment or just very tired.
Or maybe your parent will feel
okay and want your company.
- Try talking if your mom or dad
feels up to it. Let your parent
know how much you love them.
| Try saying something like this . . . |
"I love you."
"Can I get you
anything?"
|
| Keeping Family and Friends in the Loop |
|
Is it getting to be too much to answer the phone and tell people
how your mom or dad is doing? That can be a lot for anyone. Ask
others to help you share news of how your parent is doing and
what help your family needs. Maybe a relative or family friend
can be the contact person. Some families use telephone chains.
Others use a Web site or e-mail listserv.
|
"I
always
took
my
parents'
attention
for
granted.
But
after
Dad
got
sick,
nobody
paid
much
attention
to
me.
I
know
everybody
has
a
lot
to
worry
about,
but
it
really
hurt.
Finally,
I
wrote
a
note
to
them.
And
they
understood!
I
feel
closer
to
my
parents
now."
- Lisa,
age
15
Some families can grow
apart for a while when
a parent has cancer.
But there are ways to
help your family grow
stronger and closer.
Teens who saw their
families grow closer
say that it happened
because people in
their family:
- Tried to put
themselves in
the other person's shoes and thought about how they
would feel if they were the other person.
- Understood that even though people reacted differently to
situations, they were all hurting. Some cried a lot. Others
showed little emotion. Some used humor to get by.
- Learned to respect and talk about differences. The more
they asked about how others were feeling, the more they
could help each other.
"I never used to get sick before Mom
got cancer. But then I started getting
headaches. My stomach hurt all the
time, too. I started wondering if
something was wrong with me. I talked
to a nurse, and she said that stress can
cause a lot of that stuff. She gave me
some great advice and said I could talk
with her whenever I wanted to. Slowly,
I'm feeling better."
- Kira, age 15
You and your family may need support from others. It can be hard
to ask. Yet most of the time people really want to help you and
your family.
People that your mom, dad, or you may ask for help:
- Aunts, uncles, and grandparents
- Family friends
- Neighbors
- Teachers or coaches
- School nurses or guidance counselors
- People from your religious community
- Your friends or their parents.
- (Add your own) _________________________________
Things people can do to help:
- Go grocery shopping or run errands.
- Make meals.
- Mow the lawn.
- Do chores around the house.
- Keep your parent company.
- (Add your own) _________________________________
Other ways people can help you and your family:
- Give rides to school, practice, or appointments.
- Help with homework.
- Invite you over or on weekend outings.
- Talk with and listen to you.
- (Add your own) _________________________________
| Your Relationship With Your Parents |
|
Your mom or dad may ask you to take on more responsibility than
other kids your age. You might resent it at first. Then again, you
may learn a lot from the experience and grow to appreciate the
trust your parents have in you. See the section on
Finding Support 1
for tips on talking
with your parents.
|
Taking Care of Yourself
It's important to "stay fit" - both inside and out. This chapter
offers tips to help you keep on track during this experience.
Stress can make you forgetful, frustrated, and more likely to catch
a cold or the flu. Here are some tips that have helped other teens
manage stress. Pick one or two things to do each week.
- Stay connected.
- Spend some time at a friend's house.
- Stay involved with sports or clubs.
- Relax and get enough sleep.
- Take breaks. You'll have more energy and be in a better
frame of mind.
- Get at least 8 hours of sleep each night.
- Pray or meditate.
- Make or listen to music.
- Help others.
- Join a walk against cancer.
- Plan a bake sale or other charity event to collect money to
fight cancer.
- Avoid risky behaviors.
- Stay away from smoking, drinking, and taking drugs.
- Put your creative side to work.
- Keep a journal to write down your thoughts and
experiences.
- Draw, paint, or take photographs.
- Read about people who have made it through difficult
experiences in life. Learn what helped them.
- Eat and drink well.
- Drink 6-8 glasses of water a day to help prevent fatigue.
- In the evening, switch to caffeine-free drinks that won't
keep you awake.
- Grab fresh fruit, whole-grain breads, and lean meats like
chicken or turkey when you have a choice.
- Avoid sugary foods.
- Be active.
- Play a sport, or go for a walk or run.
- Learn about different stretching and breathing exercises.
| Did you know? |
- Exercise has been proven to make you feel better.
Running, swimming, or even walking at a fast pace can help
improve your mood.
|
Staying organized can also keep your stress level under control.
Here are some tips to get you started.
- At home
- Make a list of things you want to do and put the most
important ones at the top.
- Make a big calendar to help your family stay on top
of things.
- At school
- Try to get as much done in school as you can.
- Let your teachers know what's happening at home, without
using it as an excuse.
- Talk to your teachers or a counselor if you are falling
behind.
| Get help when you feel down and out. |
|
Many teens feel low or down when their parent is sick. It's
normal to feel sad or "blue" during difficult times. However, if
these feelings last for 2 weeks or more and start to interfere with
things you used to enjoy, you may be depressed. The good news
is that there is hope and there is help. Often, talking with a
counselor can help. Below are some signs that you may need to
see a counselor.
Are you:
- Feeling helpless and hopeless? Thinking that life has no
meaning?
- Losing interest in being with family or friends?
- Finding that everything or everyone seems to get on
your nerves?
- Feeling really angry a lot of the time?
- Thinking of hurting yourself?
Do you find that you are:
- Losing interest in the activities you used to enjoy?
- Eating too little or a lot more than usual?
- Crying easily or many times each day?
- Using drugs or alcohol to help you forget?
- Sleeping more than you used to? Less than you used to?
- Feeling tired a lot?
If you answered "yes" to any of these questions, it's important to
talk to someone you trust. Read more about seeing a counselor
or joining a support group in the section called
Finding Support 1.
|
"Things weren't easy between me
and my dad. We fought about
everything. After he got cancer,
I felt really bad. Then the nurse
told me about this support group.
I ended up going with a friend.
At first I just listened. Then I
realized they were going through
some of the same things that I was
and actually had some helpful
advice. Dad and I talk more now
and even laugh about the dumb
fights we had."
- Alex, age 17
Finding Support
Don't let being afraid of the way you feel keep you from talking to
your parents, a counselor, or people in a support group.
For many people, starting to talk is difficult. Some teens don't
have good relationships with their parents. Others are too
embarrassed to talk about personal things. It can also just be
hard to make the time to talk, with all that is going on. But you
and your parents really can help each other.
| Prepare before you talk. |
| Step 1: | Think about what you want to say and about some
solutions to the problem. |
| Step 2: | Think about how your parent might react. How will you
respond to him or her? |
|
| Find a good time and place. |
| Step 1: | Ask your mom or dad if they have a few minutes to talk. |
| Step 2: | Find a private place - maybe in your room or on the
front steps. Or maybe you can talk while taking a walk
or shooting hoops. |
|
| Take things slowly. |
| Step 1: | Don't expect to solve everything right away. Difficult
problems often don't have simple solutions. |
| Step 2: | Work together to find a way through these challenges.
Some conversations will go better than others. |
|
| Keep it up. |
| Step 1: | Don't think you have to have just one big conversation.
Have lots of small ones. |
| Step 2: | Make time to talk a little each day if you can, even if it's
just for a few minutes. |
|
"Grandma raised me to care about school.
But after she got cancer, I had too much
on my mind. And there was a lot to do to
take care of her when I got home from
school. My grades started to slip. I told
my guidance counselor what was going on,
and she shared some things that had worked
for others. Now, whenever things start to
get me down, I talk with my guidance
counselor, who helps me feel less stressed.
What's best is that she keeps everything we
talk about private."
- Nick, age 15
Sometimes. . .
talking to friends
is not enough.
When you are having
a hard time,
it can be helpful to talk
to a counselor or
social worker.
Jena listened to her best friend Renee and planned on talking to
the counselor at her school. Other kids talk to social workers at
the hospital. Going to a counselor doesn't mean you are crazy.
It shows you have the courage to see that you need help to get
through a very tough time.
Teens say it can be helpful to talk with someone outside the
family--someone who doesn't take sides. A counselor is a
person who will listen to you. They will help you find ways
to better handle the things that bother you and gain
strength in your situation.
- Talk with your mom, dad, or someone else that you
trust. Let them know you would like to talk to a
counselor. Ask for help making appointments and
getting to visits. Sometimes the counselor will even let
you bring a friend.
- Ask a nurse or social worker at the hospital if they know
someone you can talk to.
- Ask your guidance counselor at school if you can
talk to him or her.
| Tip: Don't be shy about asking
for help. |
|
You may think: "I can solve all my own
problems." However, when faced with tough
situations, both teens and adults need
support from others!
|
Another good outlet is a support group. Some groups meet in
person; others meet online. Some groups go out and have fun
together. In these groups you'll meet other teens going through
some of the same things that you are. At first this may not sound
like something you want to do. Other teens say they thought the
same thing - until they went to a meeting. They were surprised
that so many others felt the same way they did and had advice
that really seemed to work. A doctor, nurse, or social worker can
help you find a support group.
You and Your Friends
"I still see my friends, but
things are different now.
A lot of what they talk about
seems kind of lame. They are
into going to school dances
or to the mall. Sometimes
I feel like an outsider.
I worry a lot about my dad.
Stuff like who won the
basketball game just doesn't
seem important now. Then I
found out there was another
kid at school whose dad has
cancer. I have more in
common with him than I do
with friends I've known my
whole life."
- Hamid, age 15
Your friends are important to you, and you're important to them.
In the past, you could tell
them everything. Now
that your parent has
cancer, it may seem like
a lot is changing--even
your friendships. Here
are some things to think
about:
Your friends may not
know what to say.
- It is hard for some
people to know
what to say.
Others may think
it's rude to ask
questions.
- Try to be gentle on
friends who don't ask
about your parent's
cancer or how you
are doing.
- You may need to take
the first step.
| Try saying something like this . . . |
"Talking
about what's going
on with my mom/dad
is hard. I know that it's
not easy to ask questions.
Is there anything you
want to talk about
or know?"
|
Your friends may ask tough questions.
- You may not always feel like answering questions about your
parent's cancer or treatment.
- Try saying something like this: "Talking about what's going on right now is hard, but it's nice of you to ask. The doctors are saying: [add in you own information here]..."
| If you don't feel like talking, try
saying something like this . . .
|
"Thanks for asking
about my mom/dad
but would it be okay
if we talked
about this later?"
|
Your friends have their own lives.
- It may feel like your friends don't care anymore. It might
seem as though their lives are moving on, and yours isn't.
It can be hard to watch them get together with others or do
things without you. But try to
understand that they have their
own lives, too. They aren't
facing the situation you are
right now, so it may be hard
for them to relate.
|
You might want to try saying
something like this . . . |
"I miss
hanging out together.
I know that I've had a lot
on my mind since my dad
got sick. I'm glad
we're still friends.
Want to hang out
tomorrow?"
|
Old friends
Even though you may have a lot on
your mind, you can still get together
with your friends and have a good
time. If you can't leave home as much,
ask if your friends can come over. Take
time to relax. It's good for you. Make
a list of fun things you and your friends
like to do together. Then do them!
New friends
A lot is happening to you right now. Sometimes old friends move
on. You may not have as much in common as you used to. The
good news is that you may find yourself making new friends. Kids
who used to just pass you in the halls may now ask you how you
are doing. Kids who you used to be friends with may enter your
life again. Be open to new friendships.
Going to support groups at the hospital or clinic is a good way to
meet new friends. It helps to connect with people who are going
through some of the same things that you are. Try to do fun
things together. The break will be good for all of you!
Unfortunately, some kids may say mean things. Others speak
before they think and before they get the facts. No matter the
reason, it can hurt when kids make jokes or say hurtful things
about you, cancer, or your parent.
| What can you do? |
- Ignore the comment.
- Say, "Hey, my dad has cancer. It's not funny. How would you
feel if it was your dad?"
- Being bullied? Go to your teacher, principal, or guidance
counselor right away.
|
How You Can Help Your Parent
"Some days I felt really good
about the little things I could
do for my mom. Other times
there wasn't anything I could
do except just be with her.
We didn't always have to
talk. Even when I was quiet,
I think my mom could sense
my love."
- Vanessa, age 16
Here are some things that others have done to help their parent
at home. Pick one or two things to try each week.
Spend time with
your parent.
Watch a movie together.
Read the paper to your
parent. Ask for help
with your homework.
Give hugs. Say,
"I love you."
Or just hang out
in silence.
Lend a hand.
Bring water or
offer to make a snack
or small meal.
Try to be upbeat, but be "real," too.
Being positive can be good for you and your whole family. But
don't feel like you always have to act cheerful, especially if it's
not how you really feel. It's okay to share your thoughts with
your parent--and let them comfort you. Be yourself.
Be patient.
You are all under stress. If you find you are losing your cool, listen
to music, read, or go outside to shoot hoops or go for a run.
Share a laugh.
You've probably heard that laughter is good medicine. Watch a
comedy on TV with your parent or tell jokes if that is your thing.
Also, remember that you're not responsible for making everyone
happy. You can only do so much.
Buy your parent a new scarf or hat.
Your parent might enjoy a new hat or scarf if he or she has lost
their hair during treatment.
Keep your parent in the loop.
Tell your parent what you did today. Try to share what is going on
in your life. Ask your parent how his or her day was.
Talk about family history.
Ask your parent about the past. Talk about what you're both most
proud of, your best memories, and how you both have met
challenges. Tape record, write, or draw these things. Ask to see
old letters or photo albums.
Keep a journal together.
Write thoughts or poems, draw, or put photos in a notebook that
the two of you share. This can help you share your feelings when
it might be hard to speak them aloud.
Help with younger brothers and sisters.
Play with your brothers and sisters to give your parent a break.
Pull out games or read a book with your siblings. This will help
you stay close and also give your parent time to rest.
"Before my dad got cancer, I didn't take
time to really notice all the stuff I had
going for me. But I've learned to open
my eyes more. Bad things happen in
this world--like my dad getting cancer--
but it's a pretty wonderful place, too.
Even while there's been a lot of added
pressure on our family, I've learned to
appreciate every day more."
- Kenyatta, age 18
After Treatment
When your parent is finally done with treatment, you may feel a
whole range of emotions. Part of you is glad it is over. Another
part of you may miss the freedom or new responsibilities you had
while your parent was getting treatment. You may feel confused
that your parent still looks sick and is weaker than you expected.
You may be afraid the cancer will come back. You may look at life
differently now. All these feelings are normal. If you and your
family are still feeling that life after treatment is harder than you
thought it might be, you might want to talk to a counselor to get
guidance through this time.
Things may not go back to exactly how they were before cancer
came into your lives. Getting back to your "old life" may take a
long time - or it may not happen as you expect.
Here are some things that others have to say about life after
treatment. Do any of these kids sound like you?
Caleb talks about the "new normal":
"Now that my mom is done with chemo and
radiation, things are pretty different. My older
brother drove her to treatment. It was my job to
get dinner and help my little sister, Jada, with
homework each night. Now that Mom is better,
Jada doesn't need as much help from me. For a
while I was her hero. Look, I am glad Mom's
treatment went well, but getting used to her
being up and about is, well, different. My mom
says it will take time."
- Caleb, age 15
Sarah appreciates life more:
"I have to admit it, before my mom got sick we fought
a lot - over what I was wearing, who I hung
out with, or why I wasn't nicer to my
little sister. After my mother got cancer,
we pulled together more. My sister and
I got tight. She looked up to me to make
sure we were going to be all right.
Now stuff like painting my nails or
wearing cool clothes don't matter as much.
I even help run a support group for kids at my school
who have a sick parent."
- Sarah, age 17
Jake is glad to have his dad back home:
"All I can say is that I never saw my dad cry
until he finished his last chemo treatment.
The doctors said they think they
got all the cancer. My father
was so emotional - glad to be
alive. Then my mom and
brother lost it, too. I have
to say that I'm so glad my
dad is better. I used to
take him for granted.
No more."
- Jake, age 16
"It was very hard to hear that
my mom's treatment wasn't
working anymore. She and I decided
to make the most of each day.
Some days we talk nonstop. Other
times we just sit together and hold
hands. But every day, I tell my
mom how much I love her. You
can't be afraid to love. Not ever.
I learned that."
- Emily, age 16
If treatment doesn't help your parent, you and your family will
face even more challenges. Hearing that your parent might die is
very difficult. You may feel many of the same emotions you felt
when you first learned that your mom or dad had cancer.
No booklet can give you all the answers or tell you exactly how
you will feel. But when the future is so uncertain, teens say it
helps to:
| Do you want more support
and guidance? |
|
Cancer organizations can also help you during this very
difficult time in your life. In the section called
Learning More On Your Own 7, you'll find some
organizations to contact.
|
You'll always have memories.
Your parent will always be part of your life. Hold on to your
memories of the good times. Don't feel guilty that you're not
respecting your parent's memory when you think about
something funny that your parent did or said. By laughing and
smiling you are bringing back just a little of what was so special
about your parent.
The pain will get less intense with time.
At first the pain may be so strong that you might wonder whether
you will ever feel happy again. Time has a way of healing. Not
being sad every day doesn't mean that you have forgotten your
parent. It just means that you are starting to heal.
Everyone grieves in his or her own way.
Some teens grieve for their parent's death by crying. Others get
quiet and spend time by themselves. Some find that they need
to be around friends and talk. Others get very angry. In any
case, most people find it helps to keep a regular routine. There
is no right way or wrong way to grieve. It's okay to deal with loss
at your own pace.
Your parent would want you to be happy.
Stay open to new experiences. Write about your thoughts.
Make small changes that give your life new meaning.
Life will change.
Life won't be the same as before, but it can be rich and full again.
Keep believing this.
The Road Ahead
"Don't get me wrong, I'm so
glad that treatment is over.
Seeing my stepdad so sick
was hard to take. But now
that he's back home, well,
bedtime is back to 10:00,
no more late night TV,
I have to say where I'll be
and when I'll be home...
basically, we're back to the
old rules."
- Monica, age 17
It can be hard to stay calm when you aren't sure what the future
holds. You may be thinking - will my parent survive cancer?
Will the cancer come back? Will life ever be the same?
Will I laugh again?
While no one can know the future, there are things you can do to
make your life a little more stable:
Keep talking and pulling together as a family. You may
find that cancer has drawn you closer together and made you
appreciate each other more than ever.
Discover your own needs. Don't let others tell you how you
should feel. Allow
yourself to cope at your
own pace and in your
own way.
Remember that
you're growing as
a person. Many
teens say that having
a parent with cancer
has made them more
sympathetic, more
responsible, and
stronger.
Accept people's help. Right now you may feel lonelier than
you ever have in your life. But you are not alone. Family, friends,
support groups, neighbors, and counselors are there to lend a
helping hand, listen to you, and be there for you.
Appreciate each day. Many teens who have a parent with
cancer say that they learned to see the world more clearly. In time
you may come to appreciate things you may have overlooked in
the past.
Maybe you have noticed that little things seem to have more
meaning for you these days. Take some time to write these
thoughts down, even if they seem small:
| Unfortunately, no booklet or person can tell you how everything
is going to work out. Cancer is tough, and your life may never
be quite the same. But in the end, you will get through it.
Why? You're strong. And you are capable - even if you don't
always feel that way. |
Learning More on Your Own
It's great that you want to learn more. Keep in mind that cancer
treatments are getting better all the time. Make sure that what
you read or see is up to date and accurate. Talk with your parent
or other trusted adult about what you find. Share the articles or
books you've found with them. Ask them any questions you may
have. You can get information from:
- Your school or public library
Ask the librarian to help you find the information or support
that you're looking for in books, magazines, videos, or on the
Internet.
- The Internet
Use an Internet search
engine and type in
general words like
"parent" and "cancer"
together to get started.
Keep in mind that the
Internet has a lot of good
information. It also has a lot of poor information and false
promises, so you may want to check with your parent or
another trusted adult about what you find.
- Your parent's hospital or clinic
Visit the patient education office at your parent's hospital, if
there is one. Or, ask if you can go with your parent during
their visit to the doctor - to learn more.
Here are some places to contact for help. You can call them or
visit their Web site for more information.
National Cancer Institute (NCI)
Cancer Information Service (CIS)
1-800-4-CANCER (1-800-422-6237)
www.cancer.gov
NCI offers accurate, up-to-date information on cancer for you and
your family. Call the CIS to talk to an information specialist who
can answer questions you or someone in your family might have.
Or go to LiveHelp on NCI's Website to chat online with an
information specialist. NCI can also help connect you with a
support organization in your area. NCI offers many materials in
both English and Spanish. People who are deaf may call a special
TTY line at 1-800-332-8615.
American Cancer Society (ACS)
1-800-ACS-2345 (1-800-227-2345)
www.cancer.org
By calling ACS, you can talk to a person who is a specialist in
cancer information. You can call 24 hours a day to get your
questions answered. The specialist may help you find
information and other resources.
CancerCare
1-800-813-HOPE (1-800-813-4673)
www.cancercare.org
CancerCare offers free information and support to anyone
affected by cancer. Visit their online support group for kids who
have a parent with cancer.
Gilda's Club
1-800-GILDA-4-U (1-800-445-3248)
www.gildasclub.org
Gilda's Club provides a place for people with cancer and their
families and friends to join with others to build social and
emotional support. They offer programs like support groups,
workshops, and social activities for people affected by cancer.
Call Gilda's Club to see if there is a location near you.
Kids Konnected
1-800-899-2866
www.kidskonnected.org
Kids Konnected offers friendship, education, and support for
children who have a parent with cancer or have lost a parent to
cancer. Someone is there to talk 24 hours a day if you have
questions or if you just need someone to listen.
The Wellness Community
1-888-793-WELL (1-888-793-9355)
www.thewellnesscommunity.org
The Wellness Community offers support, education, and hope to
people with cancer and their loved ones. Call to find out if there
is a location near you.
Appendix A: Monitoring Tests
| TEST |
PURPOSE |
PROCEDURE (What Happens) |
| Biopsy |
Used to find out whether a tumor or abnormality is
cancer. Benign means it is not cancer. Malignant
means that it is cancer. |
A doctor removes a sample from a person using one of two ways: with a
long needle (needle biopsy) or by making a small cut (surgical biopsy). |
| Blood test |
Checks the blood to see whether the balance of the cells
and chemicals is normal |
A nurse or technician inserts a needle into a vein, usually in the arm. Then
he or she draws blood. |
| Bone marrow
aspiration |
Collects a small sample of cells from inside a bone to be
examined under a microscope |
A needle is used to remove a small sample of tissue from a bone (usually
the hip bone). |
| CAT scan or
CT scan
(Computerized
axial tomography) |
Uses
x-rays and a computer to produce threedimensional
(3-D) images of the inside of the body |
The patient lies flat on a table, which moves through a large tube while a
series of x-rays is taken. |
| MRI
(Magnetic
resonance
imaging) |
Uses radio and magnetic waves to make images of
organs and other tissues inside the body |
The patient lies flat on a table, which moves through a large tube while an
MRI machine scans the body for several minutes. |
| PET scan
(Positron
emission
tomography) |
Uses computerized pictures of areas inside the body to
find cancer cells |
The patient gets an injection and then a machine takes computerized
pictures of areas inside the body. |
| Spinal tap
(Lumbar
puncture) |
Collects a sample of the fluid inside the spine to be
examined under a microscope |
A needle is used to remove fluid from the spine in the lower back. |
| Ultrasound
(Ultrasonography) |
Uses high-frequency sound waves to make images of
internal organs and other tissues inside the body |
A technician moves a small handheld device over an area on the
patient's body. An image appears on the computer screen. |
| X-ray |
Takes a picture of the inside of the body using highenergy
waves |
The patient is placed in front of the x-ray machine or lies on a table. |
 |
Appendix B: Cancer Team Members
| TEAM MEMBER |
WHAT THEY DO |
| Nurse |
A health professional trained to care for people
who are ill or disabled |
| Nutritionist/
dietitian |
A health professional with special training in
nutrition who can help with dietary choices |
| Oncologist |
A doctor who specializes in treating people with
cancer. Some oncologists specialize in certain
types of cancer or certain types of cancer
treatment. |
| Patient educator |
Educates patients and families about illness |
| Pharmacist |
Dispenses medicines for patients |
| Physical therapist |
Teaches exercises and physical activities that
help patients gain more muscle strength and
movement |
| Psychiatrist |
A doctor who treats mental health problems,
including depression, with medicine and talk
therapy |
| Psychologist |
Talks with patients and their families about
emotional and personal matters and helps them
make decisions, but does not write prescriptions
for medicines |
| Radiologist |
A doctor who looks at x-rays and other images of
the body |
| Religious or
spiritual leader |
Addresses the spiritual and emotional health of
patients and their families. This can be a chaplain,
minister, priest, rabbi, imam, or youth group leader. |
| Social worker |
Talks with people and their families about
emotional or physical needs and helps them find
support services |
| Surgeon |
A doctor who removes or repairs a part of the
body by operating on the patient |
|
Acknowledgments
We would like to thank the many teens, scientists, and health
professionals who assisted with the development and review of
this publication.
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