Support for Caregivers

Facing Forward

When Someone 

You Love Has 

Completed 

Cancer Treatment

National Cancer Institute

U.S. Department of Health and Human Services National Ins

of Health
For more information...

The following free booklets may be helpful if your 

loved one has completed cancer treatment:

•	 Facing Forward: Life After Cancer Treatment

•	 Facing Forward: Making a Difference In Cancer

These booklets are available from the National 

Cancer Institute (NCI). To learn more about 

cancer or to request any of these booklets, visit 

NCI’s Web site (www.cancer.gov). You can also 

call NCI’s Cancer Information Service toll-free at 

1-800-4-CANCER (1-800-422-6237) to speak 

with an information specialist.

We would like to offer a sincere thank you to the 

extraordinary caregivers, health professionals, and 

scientists who contributed to the development and 

review of this publication.
Facing Forward

When Someone You Love 

Has Completed Cancer Treatment

“You need to know all you can 

about not only what happens 

during treatment, but what to 

expect right afterwards—so you 

don’t get depressed when it doesn’t 

magically all go away.” —Evan
The purpose of this booklet is to help 

support you as you adjust, now that 

treatment is over for your loved one. 

Use this booklet in whatever way works best for you. Each caregiver 

has a unique response to having had a loved one with cancer. This 

booklet was written to share common feelings and reactions that many 

caregivers just like you have had after treatment ended. It also offers some 

practical tips to help you through this time. You can read it from front to 

back. Or you can just refer to different sections as you need them.

It’s important for caregivers to understand that even though 

treatment has ended, cancer survivors are still coping with a lot. 

Often they are still dealing with side effects from treatment and learning 

how to adjust to the many other changes they have gone through. They 

may not be returning back to normal life as soon as they, and perhaps 

you, had hoped. 

As a caregiver, it can help you, friends, and family members to 

recognize the issues cancer survivors are facing. For this reason, we 

encourage you to read the NCI booklet, Facing Forward: Life After Cancer 

Treatment. This booklet covers issues for the survivor that happen after 

treatment ends. Concerns include follow-up medical care, physical and 

emotional changes, changes in social relationships, and workplace issues. 

Reading the booklet may help you understand the things people face after 

treatment, and allow you to better understand their perspectives.

Terms Used: This booklet uses the terms “loved one” and “patient”

throughout to describe the person you are caring for. In addition, for 

ease of reading, we alternate using the pronouns “he” and “she” when 

referring to the person with cancer.

Here are other NCI booklets for caregivers that can be ordered or printed 

from the Web. See the inside cover to order. 

•	 When Someone You Love Is Being Treated for Cancer

•	 When Someone You Love Has Advanced Cancer

•	 Young People With Cancer: A Handbook for Parents

•	 When Your Parent Has Cancer: A Guide For Teens

•	 When Your Brother or Sister Has Cancer: A Guide for Teens
Table of Contents

Who Is a Caregiver? ..............................................................................................1

Finding a “New Normal”......................................................................................3

Shifting Your Focus Away from Treatment ...........................................................4

Caring for Your Mind and Spirit...........................................................................6

Caring for Your Body .......................................................................................... 11

Helping with Follow-up Medical Care ................................................................12

Talking with Your Family ....................................................................................17

Life Planning .......................................................................................................22

Reflection.............................................................................................................24

Caregiver’s Bill of Rights .....................................................................................25

Resources.............................................................................................................26

1

Who Is a Caregiver?

This booklet is for you if you are someone who helped your friend or family member get through 

cancer treatment. You are that person’s “caregiver.” You may have helped with day-to-day activities, 

doctor visits, and medical decisions. You may have been caring from a distance or traveling to help 

with care.

During the course of treatment, you may have had many roles. You may have done a range of things, 

from helping to get a second opinion and deciding about treatment, to talking with visitors, or trying 

to keep your loved one’s spirits up. You may have worked with the medical team, too, about issues 

and concerns regarding care.

As treatment ends, patients and caregivers enter a new phase. Until now, you’ve probably stayed 

focused on getting the patient through treatment. You may feel that you haven’t had time to think 

on your own about things and come to terms with the many changes that have occurred. Did you put 

your own feelings and needs on hold until treatment was over? Most caregivers do. 

Once treatment ends, most people want to put the cancer experience behind them. Still, many 

caregivers aren’t sure what to do next. It can be a time of mixed emotions—you may be happy 

treatment is over. But at the same time, the full impact of what you’ve gone through with 

your loved one may start to hit you. 

“During Dad’s treatment, 

I slid under. My personality 

and the things I wanted and 

needed seemed to disappear. 

Everything went toward 

working with my spouse and 

children, trying to make things 

liveable and tolerable.” —Dana

3

Finding a “New Normal”

The end of cancer treatment is often a time to rejoice.

Most people expect to put their cancer experience 

behind them and pick up where they left off in their 

lives. People are eager to get back to their normal routines and activities.

It’s important to remember during this time that 

each person involved tends to adjust at his or her own 

pace. Some people are able to resume their regular 

activities right away. Others may need some extra time 

to recover. There may be pressure for you or your loved 

one to get back to the way things were before cancer. 

Yet it’s important to know that for some, this can still 

be an emotional period.

Your loved one needs time to come to terms with 

what has happened. She still may be coping with the effects of treatment and adjusting to all the 

changes. She needs to figure out a “new normal.” This 

means getting back to her old life, but in a way that’s 

probably different than before. This also applies to you. 

Taking time for yourself and finding a new sense of 

normal is a process you will be adjusting to as well.

During treatment, you took on many roles. You may 

have been in charge of many decisions. Your loved one 

may have stepped back from decisions to stay focused on 

getting through treatment. It’s common for caregivers to 

feel confused once it’s over. You may have questions such 

as: How do I help my loved one now? Should I go back to 

work, or stay at home? When will he be ready to take on 

former roles and responsibilities? The answers to these 

questions vary with each person. As you move forward, 

try to be patient and take things one day at a time.

Now what doI d

One of the most common reactions 

by caregivers after treatment ends 

is to ask themselves, “Now what 

do I do?” They may wonder if they 

will be needed as much. And they 

may feel a sense of loss. Many 

have to think about how to adjust 

to this “new normal.”

Definition of Survivorship

A person is considered a cancer survivor from the 

time of diagnosis, through the balance of his or her 

life. Family members, friends, and caregivers are 

also part of the survivorship experience. The word 

“survivor” helps many people think about embracing 

their lives beyond the illness.

“When you’re taking

care of somebody, 

you’re so busy. 

For me, staying busy 

was very fulfilling. 

But then, when

it was over, I felt 

empty sometimes, 

wondering what 

to do next.” —Joe
4

Shifting Your Focus Away from Treatment

The day your loved one finishes treatment is the 

milestone you’ve both been waiting for. It is a 

time of celebration and reflection for making it 

through your experience. You can begin to start 

taking back control of your life and thinking 

about other things that are important to you. 

You may be glad to have free time where you 

aren’t going to doctor visits, tests, treatment, 

and running related errands. Your loved one 

may start to feel better and you are able to 

venture out together to enjoy the things that 

are part of your life. Or you may decide to take 

a vacation or plan a special event. You may 

also have time to focus more on things you 

may have had to put on hold such as work and 

family issues. 

Even though this is what you’ve been waiting for, it’s important to recognize that it’s a time when 

you may still have strong feelings. 

Being Aware of Your Feelings

It’s normal to have many different feelings after treatment ends. Some caregivers say that their 

feelings are even more intense after treatment, since they have more time to process it all.

You may feel happy, yet sad at the same time. You may be glad and relieved that your loved one is 

through with treatment. But you could also feel anxious because you’re no longer doing something 

directed at fighting the cancer. You may feel a sense of 

sadness and loss at still seeing your friend or family member 

in a weakened state. This can also be a time when you feel 

more lonely and isolated than before. For example:

n You may miss the support you had from the patient’s 

health care team. You may feel as if a safety net has 

been taken away. 

n You may feel pressure to return to your old self. 

n Friends and family may go back to their daily lives, 

leaving you with more to do. They may not be 

checking in with you as they did when your loved 

one was getting treatment. 

n You may still avoid going out with others for fear of 

something happening to your loved one while you 

are gone.

The end of treatment is a time to

n Celebrate.

n See what things your loved 

one is ready to handle again.

n Focus on other family and work issues that 

were put on hold.

n Sort out your feelings on 

the experience.

n Spend more time with friends and family.

“In some ways, I feel a loss. 

For a while I was pulled in 

so many different directions 

as I took care of my family 

and my mother. But now

that she’s getting better, I 

miss feeling needed. I don’t 

know what to do with 

myself.” —Gloria
5

n You may find it hard to relate to people who 

haven’t been through what you have.

n You may have many feelings as you see your 

loved one struggle with moodiness, depression, 

or loss of self-esteem. You may worry that 

any physical problem is a sign of the cancer 

returning, yet at the same time, feel thankful 

that this person is here and part of your life. You 

may look forward to putting more energy into 

the things that mean the most to you. 

These feelings are all normal. It helps to give yourself 

time to reflect on your experience with cancer. People 

need different amounts of time to work through the 

challenges that they are facing. 

It’s okay to cry or express your feelings as you cope with 

the changes that come after treatment ends. You don’t 

have to be upbeat all the time or pretend to be cheerful. 

Give yourself time to cope with what you and your loved 

one have gone through. Many caregivers say that the 

strong feelings they had right after treatment ends often 

lessen with time. 

If feelings of sadness or despair last for more than a 

few weeks, this can be a sign of depression. Some signs 

of depression can also be symptoms of other physical 

problems. You may want to talk with your doctor if these 

feelings make it hard for you to function. Depression 

can be helped by talking with a counselor or therapist or 

with medicine. See the list to the right for warning signs 

of depression. 

Do you need help with 

depression or anxiety?

Remember, many of the things 

listed below are normal. This is 

especially true when you are 

dealing with a lot of stress. But talk 

with your doctor if you have any of 

these signs for more than 2 weeks. 

Your doctor may suggest treatment.

Signs of Depression or Anxiet

n Feeling helpless or hopeless, or 

that life has no meaning

n Not feeling interested in family, 

friends, hobbies, or things you 

used to enjoy

n Loss of appetite

n Feeling short-tempered 

and grouchy

n Not being able to get certain 

thoughts out of your mind

n Crying for long periods of time 

or many times each day

n Thinking about hurting or 

killing yourself

n Feeling “wired,” having racing 

thoughts or panic attacks

n Having sleep problems, such 

as not being able to sleep, 

having nightmares, or sleeping 

too much
6

Caring for Your Mind and Spirit

Finding Meaning After Cancer

Many caregivers find that cancer causes them to look at life in new ways. They may reflect on 

spirituality, the purpose of life, and what they value most. It is common to view the cancer 

experience both negatively and positively at the same time. After treatment, you and your loved one 

may struggle to understand why cancer has entered your lives. You may wonder why you have had to 

endure such a trial in your life. 

The way cancer affects one’s faith or religion is different for everyone. Some people turn away from 

their religion, while others turn toward it. It’s common to question one’s faith after cancer. But for 

others, seeking answers and searching for personal meaning helps them cope. 

Many caregivers have found that their faith, religion, or sense of spirituality is a source of strength as 

they face life after cancer treatment. Many say that they have been able to find meaning in their lives 

and make sense of their cancer experience through their faith. Faith or religion can also be a way 

for caregivers and their loved ones to connect to others in their community who may share similar 

experiences or outlooks, or who can provide support. Studies have also shown that for some, religion 

can be an important part of both coping with and recovering from cancer.

Here are ways you may find comfort and meaning through your faith or spirituality:

n Reading materials that are uplifting to help you feel connected to a higher power 

n Praying or meditating to help you feel less fearful or anxious

n Talking about your concerns or fears with a leader of your faith or spiritual community

n Going to religious or spiritual gatherings to meet new people 

n Talking to others who have had similar experiences 

n Finding spiritual or faith-based resources for people dealing with chronic illnesses like cancer

Making Time for Yourself

If you’ve been putting your own needs aside, this may be a good time to think about how you can 

best care for yourself. Having some down time to recharge your mind and spirit can help you cope. 

You may want to think about: 

n Getting back to activities that you enjoy

n Finding ways others can help you 

n Finding new ways to connect with friends
7

Small Things

I Can Do for

Each day, try to take some time to 

do something for you, no matter 

how small it is. Some ideas include:

n Napping

n Exercising or doing yoga

n Keeping up with a hobby

n Taking a drive

n Seeing a movie

n Working in the yard

n Going shopping

n Catching up on phone calls, 

letters, or e-mail

You may find that it’s hard to relax, 

even when you have time for it. 

Some caregivers find it helpful 

to do exercises such as deep 

breathing or meditation.

Let Others Help You

You may feel tempted to tell people that you and your 

loved one are doing fine and don’t need help. It may 

be that you don’t want to trouble people any longer. 

Chances are that both of you are tired and are still 

getting used to life after treatment. It may help to tell 

others that you’re still adjusting and let them know ways 

they can help. Try to keep a support system made up of 

people such as:

n Family and friends

n Members of your faith or spiritual community

n Neighbors

n Coworkers 

n Members of civic groups and associations

Think about what type of support would be helpful. Do 

you need help from someone to do tasks? Or do you just 

need someone to be there to listen while you talk? The 

clearer you can be about your needs, the easier it is for 

people to help you.

Stay Open to New Sources of Support

Family, friends, neighbors, and coworkers who stayed 

away during treatment may now be willing or able to 

provide you with support. You may find it helpful to 

talk with someone who didn’t go through the cancer 

experience with you. This could be a family member, 

friend, faith or spiritual leader, counselor, or support 

group member. 

It’s important to find ways to cope with your thoughts 

and feelings. Would talking with others help? If so, 

it’s important for you to connect with other people, 

especially if you want to say things that you can’t say to 

your loved one. Try to find someone you can really open 

up to about your feelings or fears. 

However, be aware that others may not be there to help. 

They may feel awkward about helping or assume that 

you’re getting back to “normal” and don’t need help any 

more. Or they may have personal reasons, such as lack of 

time or things going on in their own lives. 
8

Join a Support Group

Support groups can meet in person, by phone, or over the Internet. They can help you gain new 

insight into what’s happening, give you ideas about how to cope, and help you know that you’re 

not alone.

In a support group, people may talk about their feelings 

and what they have gone through. They may trade advice 

with each other and help others who are dealing with the 

same kinds of issues. Some people like to go and 

just listen.

If you feel like you would enjoy outside support such as 

this, but can’t get to a group in your area, try a support 

group on the Internet. Some caregivers say Web sites 

with support groups have helped them a lot. (See the 

Resources section on page 26 to find out how to 

contact these groups.)

Find Respite Help

You may have used or looked into respite (“res-pit”) care already. Even though your loved one has 

completed cancer treatment, there may still be many caregiving tasks. Respite helpers spend time 

with your loved one so you can rest, see friends, run errands, or do whatever you’d like to do. They 

can be paid or volunteer. Respite services can also help with the physical demands of caregiving, like 

lifting your loved one into a bed or a chair. If this service would be useful for you to start or keep, you 

may want to:

n Talk with the patient about having someone come into your home to help out from time to 

time. If you already have respite care helpers, talk about keeping them for a while.

n Ask the respite helpers what types of tasks they can do, now that treatment has ended.

n Get referrals from friends or health care professionals. Your local agency on aging should also 

have suggestions.

Respite help can come from many sources:

n Family, friends, or neighbors

n Coworkers

n Members of your faith community

n Government agencies

n Nonprofit groups

“What I need at least

once or twice a week is 

to talk to someone or a 

group of people who are 

in the same shoes as 

I am.” —Vince

Whatever you do, 

remember that it isn’t 

a failure on your part 

as a caregiver 

if you need help. 
9

Talk to a Counselor 

You may be feeling overwhelmed and feel like talking to someone outside your inner circle of 

support. Some caregivers find it helpful to talk to a counselor, psychologist or other mental health 

professional. Others also find it helpful to turn to a leader in their faith or spiritual community. 

All may be able to help you talk about things that you don’t feel that you can talk about with your 

loved one or others around you. You also might find ways of expressing your feelings and learn ways 

of coping that you hadn’t thought of before.

Give Back to Others in Need

After treatment ends, many caregivers feel the need to give back to others who are facing cancer. 

They turn their energy to helping people in their community, joining support groups, or volunteering 

with cancer organizations. For many, making a difference in the lives of others also helps them to 

help themselves. For more information on ways that you can make a difference in the lives of people 

with cancer, see the inside cover to find out how to request NCI’s brochure, Facing Forward: Making A 

Difference in Cancer.

Write in a Journal 

Many caregivers find that writing in a journal helps them decrease negative thoughts and feelings. 

Expressing things on paper may help you process what you’re going through. You can write about any 

topic, such as your most stressful experiences or something that is bothering you. You can also write 

about the things that lift you up and bring you joy, such as a kind neighbor, a stress-free day, or time 

spent with others. 

Look for the Positive

Caregivers say that looking for the good things in life helps them feel better. They also try to focus on 

the things they can control, rather than the things they can’t. Each day, try to think about something 

that you found rewarding about caregiving. 

Or take a moment to feel good about anything 

positive about the day—a nice sunset, a hug, 

a good meal, or something funny you heard 

or read.

Let Yourself Laugh

It’s okay to laugh. In fact, it’s healthy. Laughter 

releases tension and makes you feel better. You 

can read humor columns, watch comedy shows, 

talk with amusing friends, or remember funny 

things that have happened to you. Keeping your 

sense of humor in trying situations is a good 

coping skill. 
Worrying About Your

Risk of Canc

A blood relative’s cancer diagnosis 

may make you more concerned 

about whether you will get cancer, 

too. Most cancer is not passed 

down through families. Only about 

five to ten percent of the most 

common cancers—breast, colon, 

and prostate cancer—are inherited. 

This is an important topic to 

discuss with your doctor. 

Your doctor will want to know what 

types of cancer have been in your 

family and which family members 

had it. The more relatives you 

have had with certain types of 

cancer, the higher your risk. 

Talk to your doctor about 

prevention and screening.

If you have a strong family 

history of cancer, you may 

want to talk to your doctor 

about whether genetic 

testing is right for you. 

Some people like to know 

this, so they can get tests 

or cancer screenings 

more often.

10

“Before my mom was

diagnosed with breast 

cancer, I didn’t think 

much about my own 

health. But now I’m

worried because my 

grandmother had 

breast cancer, too. 

It’s not only me, but 

also my ten-year-old 

daughter I’m worried 

about. Shouldn’t we

both get checked?” 

—Jeanne
11

Caring for Your Body

Like many caregivers, you are probably very tired. Perhaps you were so busy and concerned with your 

loved one that you couldn’t pay much attention to your own health. But it’s very important that you 

take care of your health, too. 

Added stress and daily demands can cause new health problems for caregivers, on top of any 

problems that they already have. Some examples are: 

n Fatigue 

n Sleep problems

n Poor ability to fight off illness (weakened immune system)

n Slower healing of wounds

n Higher blood pressure

n Changes in appetite or weight 

n Headaches

n Anxiety, depression, or other mood changes

Be sure to make time for your own checkups, screenings, and other medical needs. Talk with your 

doctor about any symptoms you have. Experienced caregivers also suggest focusing on the basics, and:

n Taking your medicines as prescribed. Ask your doctor to give you extra refills to save trips. 

Find out if your grocery store or pharmacy delivers.

n Trying to eat healthy meals. Eating well will help keep up your strength. 

n Getting enough rest. Listening to soft music or doing breathing exercises may help you fall 

asleep. Short naps can energize you if you aren’t getting enough sleep. Talk with your doctor if 

lack of sleep becomes an ongoing problem.

n Exercising. Walking, swimming, running, or bike riding are only a few ways to get your 

body moving. Any kind of exercise (including working in the garden, cleaning, mowing, or 

going up stairs) can help you keep your body healthy. Finding at least 15-30 minutes a day to 

exercise may make you feel better and help manage your stress.

n Making time for yourself to relax. You may choose to stretch, read, watch television, 

or talk on the phone. Whatever helps you unwind, you should take the time to do it. 

It’s important to tend to your needs and reduce your own stress levels. 
12

Helping with Follow-up Medical Care

Many caregivers are surprised to find that their loved one’s recovery takes longer than they 

thought it would. For some people, recovery can be an ongoing process, involving physical and 

emotional changes. A lot of emotional support, love, and patience from you and other family 

members may be needed.

After treatment ends, you may begin to worry about whether the cancer will come back. This is one 

of the most common fears people have, especially during the first year after treatment. As time goes 

by, fear of cancer returning may lessen for you, and you may find that you aren’t thinking about it as 

much. Yet even years after treatment, you may find that certain occasions, such as follow-up visits, 

anniversary of the cancer diagnosis, or even symptoms that may seem similar to when your loved one 

had cancer, may trigger concern and worry.

This is the time to begin shifting your focus from cancer treatment to follow-up tests and care. 

Your loved one should ask for a follow-up care plan (see box on page 13). During follow-up care, 

the patient continues to see the doctors and specialists he saw during cancer treatment. They might 

recommend certain tests to monitor his health. They will also want to manage side effects from 

treatment and look for new ones that appear later. You may need to help keep track of information 

and help with your loved one’s choices for care. Being active partners in decision-making can help 

both you and your loved one regain a sense of control that may have been lost during treatment.

At the first follow-up visit, the doctor will suggest a follow-up schedule. In general, people who have 

been treated for cancer return to the doctor every 3 to 4 months during the first 2 to 3 years after 

treatment. They then go once or twice a year after that for follow-up visits.

Meeting with the Doctor 

If your loved one wants you to continue to go with her 

to doctor visits, ask how you might be helpful. You may 

want to talk to your loved one about any changes you’re 

seeing in her, no matter how small. These may be:

n Fatigue

n Pain

n Lymphedema (swelling)

n Mouth or teeth problems

n Weight changes

n Bowel and bladder control 

n Menopause symptoms

n Sexual problems

For more information about these side effects, 

 see page 14. 

“Every time I go with her to 

a checkup, I think, ‘What

is it going to be this time?’ 

Every ache and every pain 

becomes a source of worry. 

It’s been two years now, but 

still whenever something 

comes up, you just have to 

look at each other and say, 

‘One step at a time.’” —Bill
Tips on Coping with Fear o

Cancer Returni

n Learn more about your loved 

one’s type of cancer and recovery 

and what he could do for his 

health now. This may give you a 

greater sense of control.

n Be open and try to face your 

emotions. This may help you feel 

less worried. Expressing strong 

feelings like anger or sadness 

may help you let go of them.

n Try to use your energy to focus 

on wellness and what you and 

your loved one can do to stay as 

healthy as possible. This may help 

you to feel better about life.

n Focus on controlling what you 

can. Try to stay involved in your 

loved one’s health care if needed, 

keep appointments, and help 

with lifestyle changes. You may 

find that putting your life in order 

makes you less fearful and more 

in control.

13

If you need to learn more, or do not understand, be 

sure to ask the doctor to explain. It’s normal to have 

questions. Other caregivers have found it helpful to:

n Talk about ways to follow a healthy diet and 

lifestyle, if this will be something new. You may 

even want to talk with the doctor about developing 

a wellness plan for your loved one and family.

n Ensure that the patient asks for copies of any new 

tests or medical records at the time of the visit. 

Keep these in a folder or notebook, along with a 

list of medicines she is taking, in case you need 

them later. In it, include a list of important 

names and numbers you may need. This may be 

members of the healthcare team, pharmacists, 

and insurance contacts.

n Help keep track of your loved one’s medication 

schedule and prescriptions to be filled.

n Talk about whether counseling would be helpful. 

A counselor could help you and your loved one 

cope with what has happened. 

n Encourage your loved one to keep a “health 

journal.” This can help keep track of any symptoms 

or side effects that occur between checkups. 

The Institute of Medicine recommends that every cancer patient receive a follow-up care pla

For more information, see the CI fact sheet, Follow-Up Care, at www.cancer.gov/cancertop

factsheet/Therapy/followup
14

Side Effects to Watch for After Treatment

It may take time for the patient to get over the side effects from treatment. 

All people recover differently, based on the type of treatment they had and their 

overall health. If your loved one seems frustrated, upset, or angry, it may help to 

understand that she may still be coping with some of the same problems that she 

had during treatment. Some of the most common side effects people report are:

n Fatigue

Feeling tired or worn out after treatment is one of the most common side 

effects the first year after treatment. Rest or sleep does not “cure” this type of 

fatigue. For some, fatigue gets better with time, and for others it may last years. 

n Pain

Your loved one’s skin may feel sensitive where she received radiation, or she 

may have pain or numbness in the hands and feet due to damaged nerves, or 

she may have pain in a missing limb or breast. 

n Memory Problems

Memory and concentration problems can begin during and after treatment. 

They do not always go away. If a person is older, it may be hard to tell if the 

problems are age-related or not. Either way, some people feel that they cannot 

focus as they once did. 

n Lymphedema (LIMF-eh-DEE-ma)

The patient may have swelling caused by a build-up of fluid in the tissues. It 

can be quite painful. Some types don’t last very long, and other types can occur 

months or years after treatment. Lymphedema can also develop after an insect 

bite, minor injury, or burn.

n Mouth or Teeth Problems

These problems include dry mouth, cavities, changes in taste, painful mouth 

and gums, infections, and jaw stiffness or jawbone changes. Some people also 

have trouble swallowing. Some of these problems may go away after treatment. 

Others last a long time, or never go away. Some may develop months or years 

after treatment. 
15

n Weight Changes

Some people have problems with weight loss because they have no desire to eat. 

Others have problems with weight gain. Unfortunately, the usual ways people try 

to lose weight may not work for them. 

n Bowel and Bladder Control

Some treatments or surgery may cause problems with bowel and bladder control. 

This may be a total loss of control for some, while others have some control, 

but have to make lots of sudden trips to the bathroom. These problems are very 

upsetting for people. People often feel ashamed or afraid to go out in public.

n Menopause Symptoms

Some women stop getting their periods every month, or stop getting them 

altogether. For some younger women, their periods may start again, but for 

others they may not. Common signs are changes in periods, hot flashes, problems 

with the vagina or bladder, lack of interest in sex, and fatigue and sleep problems. 

Memory problems, mood swings, depression, and feeling irritable may also occur. 

n Sexual Problems

Sexual problems in the body can be caused by changes from cancer treatment or 

the effects of pain medicine. Sometimes these problems are caused by depression, 

guilt, changes in body image, and stress. Some patients lose interest in sex 

because they struggle with their body image, or because they are tired or in pain. 

Others are not able to have sex as they did before because of changes in sex 

organs. Other main concerns people have are symptoms of menopause, and not 

being able to have children.

These are all common side effects you may want to watch for in your loved one. 

If he or she is struggling with any of these, you may want to suggest talking to the 

doctor about ways to get relief. For information on these changes, see the NCI 

publication, Facing Forward: Life After Cancer Treatment. It can be downloaded from 

the Web at www.cancer.gov, or ordered by calling NCI’s Cancer Information Service 

toll-free at 1-800-4-CANCER.
16

Long-Distance Caregiving

After treatment ends, you may not be sure what kind of help is still needed. You may feel 

like you’re a step behind in knowing how your loved one is coping. Yet even if you live far 

away, you can still give support. You can 

still be a problem-solver while starting to 

get back to your own routine.

Caregivers who live more than an hour 

away often rely on the telephone as their 

link. But it’s hard to track someone’s 

needs by phone. You know that you 

would rush to their side for a true medical 

emergency. Other situations, however, are 

harder to judge. Staying in regular contact 

by phone or e-mail is important to help 

lift your loved one’s spirits, as well as your 

own. Talking with her may also give you a 

sense of how she’s coping.

Finding Contacts

Many caregivers say that it helps to explore paid and volunteer support for your loved 

one if he still needs help. If you have not done so already, try to create a support network 

of people who live nearby. These should be people who you can call day or night and 

count on in times of crisis. You may also want them to just check in with your loved one 

from time to time. People who could not help during treatment might be able to now.

You could also look into volunteer visitors, adult day care centers, or meal delivery. 

Having a copy of the local phone book for your loved one’s area can give you quick access 

to resources. Checking the white and yellow pages online is useful, too. 

Other Tips

n Discuss what kind of support is still needed.

n If other family members or friends are visiting, check in with them to get their 

thoughts on how your loved one is coping.

n Ask other long-distance friends and family to stay in touch with your loved one 

by phone calls, cards, or e-mail.

n If you’re feeling out of the loop now that you’re far away again, remind your 

friends and family that you still need support, too.
17

Talking with Your Family

How families communicate with each other changes throughout the cancer experience. There may 

have been times when you and your loved one were communicating well with each other. At other 

times you may have found it hard to share your feelings, worries, and hopes. 

Many caregivers say that going through treatment together made their family closer. Some worry that 

once treatment ends, things may feel different and that communication might be harder. For some 

families who were having trouble talking before the cancer, the problems may seem more intense 

now. Roles may change, which can trigger different emotions. It can affect families in ways they 

never expected. For example: 

n Adult children may have trouble accepting that recovery may take more time than expected. 

n Adult children who have been taking care of a parent may have a hard time letting her make 

her own decisions again. 

n Parents of adult children with cancer may still feel a need to protect their children and 

stay involved.

It’s easy to say that good communication is even more important now that treatment is over. But it 

can be hard to know how you, family members, and your loved one can keep growing together after 

treatment. Try to remember that this period of time is new for all. It will take some time to 

sort things out. 

Talking with Your Partner

After your partner’s treatment, here are a few things to consider:

n Give yourselves time. Many problems that you and your loved one have now may get better 

over time, as each of you adjusts.

n Your partner may need extra 

emotional support to cope 

with physical changes or 

with feeling less adequate as 

a parent, partner, or friend.

n If either of you are feeling 

constantly anxious or sad, 

it can be a strain on both 

of you. 

n Keep in mind that if your 

partner is acting angry or 

frustrated with you, it could 

be that he is still trying to 

adjust to recovery. 
18

n Couples who have honest and caring communication often find that their relationship 

becomes stronger after cancer. 

n Ask your loved one how she is doing now that treatment has ended. The answer may help 

you both.

Intimacy

You may find that sex with your partner 

is different than it used to be. This can 

be caused by feeling tired or being afraid 

of causing pain. Treatment may also 

have affected your partner’s interest 

in sex or ability to perform. You can 

still have an intimate relationship with 

him in spite of these issues. Intimacy 

isn’t just a physical connection. It also 

involves feelings. Here are some ways to 

improve your intimate relationship:

n Talk about it. Choose a time when you and your partner can talk and concentrate only on 

talking. Talk about how you both can renew your connection.

n Try not to judge. If your partner isn’t performing, try not to read meaning into it. 

Let him talk about what he needs right now. Or give time and encouragement to talk when 

he’s ready.

n Make space. Protect your time together. Turn off the phone and television and, if needed, 

find someone to take care of the kids for a few hours.

n Go slowly. Plan an hour or so to focus on each other without being physical. For example, 

you may want to listen to music or take a 

walk. This time is about reconnecting. 

n Try a new touch. Cancer treatment or 

surgery can change your partner’s body. 

Places where touch once felt good may now 

be numb or painful. While some of these 

changes will go away, some may not. For 

now, you can figure out together what kinds 

of touch feel good. If you find it hard to get 

back to your sexual relationship, talk to a 

specialist about your sex life after cancer.

“We’re inseparable now, on a

certain level. We were pretty

tight before, but now there’s a 

level of trust and dependency 

that goes both ways that’s hard 

to describe. All the little things 

that we argued about are gone, 

now that we’ve faced death 

together.” —Jim
19

Talking with Children and Teens

Give your loved one time to store up the extra energy needed to nurture children. There may be times 

when she feels guilty for being too tired to play with the children. Rest and emotional support will 

help these feelings go away over time. 

What you decide to tell your children after treatment depends on what you have told them so far. 

Try to: 

n Be honest about any aspects of the patient’s health that affect them. 

n Tell them what to expect over the next few weeks and months. 

n Be positive and hopeful. 

n Be prepared to repeat yourself over the next few months and years. Your children will hear 

only what they are ready to hear. As they mature, even week to week, they will become ready 

to take in more. 

Protect your children from the anxiety of waiting for test results and from the ups and downs of 

judging potential problems. 

n Only tell them when you know something definite that may change things at home. 

n Try to avoid telling them about 

problems that they can’t help with, 

such as medical bills. If your bills 

force you to make drastic changes 

to your lifestyle, then present 

this as a fact of life. Adjusting to 

changing finances teaches your 

children about facing challenges 

and loss.

You don’t have to tell children about every 

checkup or every symptom that occurs. 

But do tell your children if there are longterm side effects that make certain daily 

activities hard for your loved one. If he 

is not able to do an activity or go to an 

event, the children may think that he is 

unhappy or mad at them.* 

Listen. If you’re not sure how your 

children are feeling, talk with them. And 

more importantly, listen to them. You may 

also want to check with teachers, coaches, 

and other adults in their lives to find out 

if they notice any changes or concerns.

* Harpham, W. 1997. When A Parent Has Cancer: A Guide to Caring For Your Children. New York, NY; HarperCollins 

Publishers Inc. Adapted with permission.
20

Ideas to Reinforce with Children

One of the best things to do during this time is to keep 

telling and showing your children that you love them no 

matter what. Here are a few things you might say:

n “We’ll still be here to take care of you.”

n “Even though treatment is over, it will take time 

for (Mom, Dad, Grandpa, etc.) to feel better. He 

may not have the same energy as before. But even 

though he may not be able to do all the things 

he used to do, he still loves and cares about you. 

And he wants to come up with new ways to spend 

time together.”

n “(Mom, Dad, Grandma) will keep going to 

doctor’s appointments to make sure that we’re 

doing all we can to keep her healthy.”

n “If you have aches or pains, it doesn’t mean that 

you have cancer. But it’s good to let us know how 

you’re feeling so that we can take care of you.”

n “What you do doesn’t change the cancer in any way. We’re okay with you just being yourself. 

You don’t need to be perfect all the time. We’ll love you no matter what.” 

n “You can ask or tell us anything, and we won’t be upset. We’ll be glad that you told us.” 

(Good communication with your children can help them counteract wrong information they 

may hear.)

n “It’s okay to have a lot of different feelings—mad, sad, happy, afraid, worried, and thankful. It 

doesn’t always feel good to have certain feelings. But they’re normal. And it helps to talk with 

us about how you’re feeling.”

Here are some other things you can do:

n Thank your children for all they did during treatment. Many children take on a lot of adult 

tasks during treatment, such as chores or helping with younger siblings. Let them know if you 

and others are now able to take on some of these roles again, so they don’t have to. Assure 

them that it’s okay to be a kid again. And if they’re angry about all that they’ve been doing, 

try to understand where they’re coming 

from. Listen to them, and let them tell you 

how they feel.

n If one of your children felt bossed around 

by a sibling that was in charge during 

treatment, tell your child to express his 

feelings at you, the parent, rather than at 

his brothers and sisters. Let him know that 

you care about his feelings. Make it clear 

that you are back in charge.

“Ever since my husband 

has been sick, my kids are 

scared to go near him. They 

don’t know how to react. 

For them, it’s a big change, 

because they’ve always been 

close to their father. Now 

it’s like he doesn’t have 

the energy to go to the ball 

games and do stuff with 

them.” —Harriet
21

n Tell your children that even though the cancer survivor may look or act differently, she is still 

the same loving, caring person inside. Invite the children to ask questions and share their 

feelings. Spending time together as a family and making sure that your children spend time 

with your loved one can help. 

n Try to spend extra time with your kids. Plan some fun things and special activities with them. 

You can also help them re-engage in social or school activities they may have been missing.

n Teens may have mood swings or start acting out now. Some may feel embarrassed that their 

family is different because of cancer, and may act distant or angry. Others assume life will go 

back to the way it used to be, acting as if nothing has happened. And teens who plan to leave 

home after high school may feel torn about leaving now. Whatever the case may be, try to 

remember that they, too, have coped with a loved one’s cancer, as well as the other issues that 

take place at this age. If possible, try to stay involved and communicate as best as you can 

with them. Also, ask your social worker about Internet resources for this group. Many have 

online chats and forums for support.

Communicating with Other Family Members

Your loved one’s cancer may have triggered 

feelings and changes in your family that you never 

expected. Some family members may have been 

very helpful and supportive, which strengthened 

your relationship. Others may have had conflicts 

and hurt feelings during treatment, which may take 

time to heal. Likewise, some people may choose 

to stay involved and continue to offer love and 

support. Others may not be as involved as they 

once were. And some people may have unrealistic 

expectations for your loved one’s recovery time. 

Like your children, they may assume life will 

return to normal more quickly than possible. 

Here are some things you can do to help improve 

communication with other family members:

n Talk about issues with them. Be honest about what is needed now that treatment is over.

n Ask the doctor or other members of the health care team to talk with them. Have them 

explain what to expect in the coming months. 

n Ask a counselor or social worker to lead a family meeting. Family members can then express 

their concerns in front of a third party.

n If your family doesn’t communicate well, ask a social worker for printed information or Web 

sites to help explain the situation. You can give this information to your relatives.

n For other relatives who continue to want to help, be specific about the situation. Let them 

know how your loved one is doing and what types of help are needed.
22

Life Planning

Handling Money Worries

The financial challenges that people with cancer and their families face are very real. During an 

illness, you may find it hard to find the time or energy to review your options. Yet it’s important to 

keep your family financially healthy.

For hospital bills, you or your loved one may want to talk with a hospital financial counselor. 

You may be able to work out a monthly payment plan 

or even get a reduced rate. You may also want to stay in 

touch with the insurance company to make sure costs 

are covered. 

For information about resources that are available, see 

the Resources section on page 26. You can also get the 

NCI fact sheet, “Financial Assistance for Cancer Care,” 

at www.cancer.gov, search terms “financial assistance.” 

Or call toll-free 1-800-4-CANCER (1-800-422-6237) 

to ask for it.

Coping with Work Issues

One of the greatest sources of strain is trying to balance work demands with providing care and 

support to a loved one. Some caregivers feel relieved to go back to work. However, for others it can 

be hard because you may not feel as if you’re back to normal. You may feel exhausted and find it 

hard to focus on work after the intense caregiving experience. Or you may not want to start back up 

full-time if you’re still caring for 

the person with cancer. People at 

work may expect you to be back 

to normal now that treatment is 

over. How caregiving can affect 

your work life includes:

n Mood swings that leave 

coworkers confused or 

nervous about working 

with you

n Trouble focusing or 

getting your work done

n Being late or calling in 

sick because of stress

“I’m not working for the 

money. I’m working for 

the benefits. If we don’t 

have benefits, we’d lose 

everything.” —Debbie
Legal Papers At-A-Gl

Advance directives include

n  living will lets people know what kind

of medical care patients want if they 

are unable to speak for themselves.

n  durable power of attorney for health

care names a person to make medical 

decisions for a patient if he or she can’t 

make them. This person, chosen by the 

patient, is called a health care proxy.

Other legal papers that are not part of the

advance directives include:

n  will tells how a person wants to

divide money and property among 

his or her heirs. (Heirs are usually the 

surviving family members. Other people 

may also be named as heirs in a will.)

n  trust appoints the person a patient

chooses to manage money for her. 

n Power of attorney appoints a person to

make financial decisions for the patient 

when he can’t make them.

Note: A lawyer does not always need to 

be present when you fill out these papers. 

However, a notary public may be needed. 

Each state has its own laws about advance 

directives. Check with your lawyer or social 

worker about the laws in your state. (For 

more, see the Resources on page 26.)

23

It’s a good idea to find out your company’s 

rules and policies. See if there are any 

support programs for employees. Many 

companies have employee assistance 

programs with work-life counselors for you 

to talk with. Some companies have eldercare 

policies or other employee benefit programs 

that can help support you. Your employer 

may let you use paid sick leave to take care 

of your loved one, or they may let you take 

unpaid leave. 

If your employer doesn’t have any policies 

in place, you could try to arrange something 

informally. Examples include flex-time, 

shift-exchanging, adjusting your schedule, or 

telecommuting. Also, the Family and Medical 

Leave Act may apply to your situation. Visit 

http://www.dol.gov/esa/whd/fmla for more 

information.

For sources of support, see the Resources 

section on page 26.

Preparing Advance 

Directives 

Now that your loved one has gone through 

treatment, he may see the value of having 

an advance directive if he didn’t before. 

Advance directives are legal documents that 

let a person decide important issues ahead 

of time, including how much treatment to 

receive and who should make decisions if 

he or she can’t. Having an advance directive 

helps ensure that your loved one gets the 

treatment he wants. Understanding his 

wishes will also make it easier for you if 

a time comes when you need to make 

treatment decisions.
24

Reflection

The end of treatment often comes as a time to look forward to the future. New rituals and new 

beginnings can bring a sense of relief and joy to caregivers and their loved ones. It can also be a 

time of physical and emotional change. This is true not only for your loved one, but also for you 

as a caregiver. During treatment, your focus was on the patient’s needs. Now that treatment is 

over, try to take time to get back in tune with yourself. Allow healing time for you, your loved 

one, and your family. Try to plan what you and your loved one can do to begin living without 

cancer as a main focus.

Whether good or bad, life-changing situations often give people the chance to grow, learn, and 

appreciate what’s important to them. Many people who care for their friends or family members 

describe the experience as a personal journey. This is much like the way people with cancer 

describe their experience. It’s not necessarily a journey they would have chosen for themselves. 

But they can use their skills, strength, and talents to support their loved ones while finding out 

more about themselves along the way.

“If you find it 

in your heart 

to care for 

somebody else, 

you will have 

succeeded.” 

—Maya Angelou
25

Caregiver’s Bill of Rights

I have the right to take care of myself. This is 

not an act of selfishness. It will give me the ability 

to take better care of my loved one.

I have the right to seek help from others even 

though my loved one may object. I know the limits 

of my own endurance and strength.

I have the right to maintain parts of my own life

that do not include the person I care for just as if 

she was healthy. I know that I do everything that I 

reasonably can do for this person. I have the right 

to do some things just for myself.

I have the right to get angry, be depressed, and 

express difficult feelings once in a while.

I have the right to reject any attempt by my loved 

one to make me do things out of guilt or anger. (It 

doesn’t matter if he knows he is doing it or not.) 

I have the right to get considerations, affection, 

forgiveness, and acceptance for what I do for my 

loved one, as I offer these in return.

I have the right to take pride in what I’m doing. 

And I have the right to applaud the courage it has 

taken to meet the needs of my loved one.

I have the right to protect my individuality.

I also have the right to a life that will sustain 

me when my loved one no longer needs my 

full-time help.

(Author Unknown)
26

Resources

Cancer Information and Support

Federal Agencies

National Cancer Institute 

Provides current information on cancer prevention, screening, diagnosis, treatment, genetics, 

and supportive care. Lists clinical trials and specific cancer topics in NCI’s Physician Data Query 

(PDQ®) database.

Web site: www.cancer.gov 

Cancer Information Service 

Answers questions about cancer, clinical trials, and cancer-related services and helps users find 

information on the NCI Web site. Provides NCI printed materials.

Phone: 1-800-4-CANCER (1-800-422-6237)

Web site: www.cancer.gov/cis 

Chat online: Click on “LiveHelp.” 

Administration on Aging 

Provides information, assistance, individual counseling, organization of support groups, caregiver 

training, respite care, and supplemental services.

Phone: 1-202-619-0724

TTY: 1-800-877-8339

Web site: www.aoa.gov 

Centers for Medicare and Medicaid Services 

Provides information for consumers about patient rights, prescription drugs, and health insurance 

issues, including Medicare and Medicaid.

Toll-free: 1-800-MEDICARE (1-800-633-4227)

Web site: www.medicare.gov (for Medicare information) 

or www.cms.hhs.gov (for free booklet, Medicare Basics: A Guide for Caregivers)

Equal Employment Opportunity Commission 

Provides fact sheets about job discrimination, protections under the Americans With Disabilities Act, 

and employer responsibilities. Coordinates investigations of employment discrimination.

Phone: 1-800-669-6820

TTY: 1-800-669-4000

Web site: www.eeoc.gov
27

National Association of Area Agencies on Aging

Eldercare Locator

The Eldercare Locator is a nationwide directory assistance service designed to help older persons and 

caregivers find local resources for support. Areas of support include transportation, meals, home care, 

housing alternatives, legal issues, and social activities.

Phone: 1-800-677-1116

Web site: www.eldercare.gov

U.S. Department of Labor 

Office of Disability Employment Policy 

Provides fact sheets on a variety of disability issues, including discrimination, workplace 

accommodation, and legal rights.

Phone: 1-866-ODEP-DOL (1-866-633-7365)

TTY: 1-877-889-5627

Web site: www.dol.gov/odep/ 

Nonprofit Organizations

American Cancer Society

National Cancer Information Center

Provides a variety of cancer information and support to patients, families and caregivers. Also 

supports research, community education, and advocacy and public policy issues.

Phone: 1-800-ACS-2345 (1-800-227-2345)

Web site: www.cancer.org

CancerCare

CancerCare provides support, information, and financial and practical help to people with cancer 

and their loved ones free of charge. 

Phone: 1-800-813-HOPE (1-800-813-4673)

Web site: www.cancercare.org

Cancer Hope Network

Cancer Hope Network matches patients and families with trained volunteers who have recovered 

from a similar cancer experience.

Phone: 1-877-HOPENET (1-877-467-3638)

Web site: www.cancerhopenetwork.org

Cancer Support Community

The Cancer Support Community is a national organization that provides support groups, stress 

reduction and cancer education workshops, nutrition guidance, exercise sessions, and social events.

Phone: 1-888-793-WELL (1-888-793-9355) 

Web site: www.cancersupportcommunity.org
28

Family Caregiver Alliance

Family Caregiver Alliance addresses the needs of families and friends who provide long-term care at 

home. 

Phone: 1-800-445-8106

Web site: www.caregiver.org

Lance Armstrong Foundation 

The Lance Armstrong Foundation seeks to inspire and empower people living with, through, and 

beyond cancer to live strong. They provide education, advocacy, public health and research programs.

Phone: 512-236-8820 (general number) 

1-866-235-7205 (LIVESTRONG SurvivorCare program) 

Web site: www.livestrong.org 

National Coalition for Cancer Survivorship (NCCS)

NCCS provides information and resources on cancer support, advocacy, and quality-of-life issues to 

cancer survivors and their loved ones. 

Phone: 1-877-NCCSYES (1-877-622-7937)

Web site: www.canceradvocacy.org

National Family Caregivers Association (NFCA)

NFCA provides information, education, support, public awareness, and advocacy for caregivers.

Phone: 1-800-896-3650

Web site: www.nfcacares.org

NeedyMeds

The NeedyMeds Web site lists medicine assistance programs available from drug companies. 

NOTE: Usually, patients cannot apply directly to these programs. Ask a doctor, nurse, or social 

worker to contact them on behalf of your loved one.

Web site: www.needymeds.com

Patient Advocate Foundation (PAF) 

PAF provides education, legal counseling, and referrals to cancer patients and survivors. It specializes 

in matters related to managed care, insurance, financial issues, job discrimination, and debt crisis.

Phone: 1-800-532-5274 

Web site: www.patientadvocate.org

The Well Spouse Foundation 

The foundation provides support to wives, husbands, and partners of chronically ill and/or disabled 

persons.

Phone: 1-800-838-0879

Web site: www.wellspouse.org

NIH Publication No. 10-

Printed May 20