About This Booklet
Making Choices About Care
Talking With Your Health Care Team
Getting Help for Your Symptoms
Coping With Your Feelings
Advance Planning
Talking With the Special People
Looking for Meaning
Closing Thoughts
Resources
Personal Affairs Worksheet
For more information
About This Booklet
"What lies behind us
and what lies before us
are tiny matters
compared to what lies
within us."
- Ralph Waldo Emerson
You've struggled with the
diagnosis,
treatment, and maybe
the
recurrence
of cancer. Now doctors may have told you
that you have
advanced cancer.
They may have said that your
cancer is not responding to treatment and that long-term
remission
is no longer likely. Or they may have said they
have run out of
standard treatment
options. However you
learn the news, it can be devastating to you and your loved
ones. Often it's hard to believe or accept at first.
"I have good days and bad days.
But I try to let there be more good
ones than bad, and focus on things
in my life that I can control. I just
do the best I can, enjoying family,
friends, and the little things in life."
- Louise
Having advanced cancer can bring anxiety and uncertainty
to your life. But some people with advanced cancer live far
longer than expected. And remember, you are still in control
of your choices and actions. Having an advanced disease can
be a time of personal growth. It can even be a time of
second chances. Many people say they started to see life in a
new way after learning that their cancer had progressed
despite treatment. They realized the importance of making
the most of each day.
This booklet stresses four main points:
- Learning more about ways you can help yourself may
ease some of your concerns.
- Your treatment may change, but as always, you deserve to
ask for and receive good medical attention from your
health care team and support from your caregivers.
- It's important to talk about your worries, frustrations,
and problems, and get support from others. In fact, it
may be one of the best things you can do for yourself.
- As your medical care changes, you still have many choices.
You can choose the way you wish to live each day.
"There are lots of things I still want to do, but I know
that I may not be able to do them the way I planned.
But that doesn't stop me from trying to achieve them
in a different way." - Millie
No two people are alike. Some chapters of this booklet may
apply to you while others may not. Or some may be more
useful later on. As you read this booklet, choose the parts that
are right for you. Share it with your family members and
loved ones. They may find it helpful to read it with you. Keep
in mind that this booklet is for you, an adult with advanced
cancer, and the people close to you. For other information
for a parent or loved one of a child or young person with
cancer, see the NCI booklet,
Young People With Cancer 1.
Your
friends and family members may also want to see the NCI
booklet, When Someone You Love Has Advanced Cancer.
Above all else, try to remember that you are still in charge of
your life. It may be hard to do this with all that you are going
through. You may have trouble coping with your feelings
from time to time. Or you may be grieving that your life has
gone a different way than you had hoped. It's natural to feel
negative at times. You'll have ups and downs. We hope this
booklet will help you. Our goal is to help you stay in control
as much as you can, and make the rest of your life fulfilling
and satisfying. You can still have hope and joy in your life,
even as you cope with what lies ahead.
Making Choices About Care
"There's a part of me that wants to
keep fighting and try a clinical trial;
the other part wants to stop
fighting. I'm just so tired of it all.
Yet I can't help wondering if there
are other options."
- John
People have different goals for care when dealing with
advanced cancer. And your goals for care may be changing.
Perhaps you had been hoping for a remission. Yet now you
need to think more about controlling the spread or growth
of the cancer. Your decisions about treatment will be very
personal. You will want to seek the help of your loved ones
and health care providers. But only you can decide what to
do. Your desire to avoid future regrets should be measured
against the positives and negatives of treatment.
Questions you may want to ask:
- What's the best we can hope for by trying another
treatment? What is the goal?
- Is this treatment plan meant to help side effects, slow
the spread of cancer, or both?
- Is there a chance that a new treatment will be found
while we try the old one?
- What's the most likely result of trying this treatment?
- What are the possible side effects and other
downsides of the treatment? How likely are they?
- Are the possible rewards bigger than the possible
drawbacks?
It is important to ask your health care team what to expect in
the future. It's also important to be clear with them about
how much information you want to receive from them.
You have a right to comfort care both during and after
treatment. This kind of care is often called
palliative care.
It includes treating or preventing cancer symptoms and the
side effects caused by treatment. Comfort care can also mean
getting help with emotional and spiritual problems during
and after cancer treatment. Sometimes patients don't want
to tell the doctor about their symptoms. They only want to
focus on the cancer. Yet you can improve your quality of life
with comfort care.
People once thought of palliative care as a way to comfort
those dying of cancer. Doctors now offer this care to all
cancer patients, beginning when the cancer is diagnosed.
You should receive palliative care through treatment,
survival, and advanced disease. Your
oncologist
may be able
to help you. But a palliative care specialist may be the best
person to treat some problems. Ask your doctor or nurse if
there is a specialist you can go to.
"I know that just because
I have stage-4 cancer doesn't
mean I'm going to die
tomorrow. My friend has
lived a long time with her
advanced cancer."
- Li
You have a number of options for your care. These depend
on the type of cancer you have and the goals you have for
your care. Your health care team should tell you about any
procedures and treatments available, as well as the benefits
and risks of those treatments. Options include:
- Clinical trials
- Palliative radiation, chemotherapy, or surgery
- Hospice care
- Home care
Many patients choose more than one option. Ask all the
questions you need to.
Try to base your decision on your own feelings about life and
death, and the pros and cons of cancer treatment. If you
choose not to receive any more active cancer treatment, it
does not necessarily mean a quick decline and death. It also
does not mean you will stop being given palliative care. Your
health care team can offer information and advice on
options. You also may want to talk about these options with
family members and others who are close to you.
Treatment
clinical trials
are research studies that try to find
better ways to treat cancer. Every day, cancer researchers
learn more about treatment options from clinical trials. The
different types of clinical trials are:
- Phase 1 trials test how to give a drug, how often it
should be given, and what dose is safe. Usually, only a
small number of patients take part.
- Phase 2 trials discover how cancer responds to a new
drug treatment. More patients take part.
- Phase 3 trials compare an accepted cancer treatment
(standard treatment) with a new treatment that
researchers hope is better. More treatment centers
and patients take part.
If you decide to try a clinical trial, the trial you choose will
depend on the type of cancer you have. It will also depend
on the treatments you have already received. Each study has
rules about who can take part. These rules may include the
patient's age, health, and type of cancer. Clinical trials have
both benefits and risks. Your doctor and the study doctors
should tell you about these before you make any decisions.
Taking part in a clinical trial could help you and help others
who get cancer in the future. But insurance and managed
care plans do not always cover costs. What they cover varies by
plan and by study. Talk with your health care team to learn
more about coverage for clinical trials for your type of cancer.
For more information about clinical trials, see NCI's booklet,
Taking Part in Clinical Trials: What Cancer Patients Need to
Know 2. Or talk to the NCI's Cancer Information Service at
1-800-422-6237 (1-800-4-CANCER).
Some palliative chemotherapy
and
palliative radiation
may
help relieve pain and other symptoms. In this way, they may
improve your quality of life even if they don't stop your
cancer. These treatments may be given to remove or shrink
a
tumor.
Or they may be given to slow down a tumor's
spread.
Palliative surgery
is sometimes used to relieve
pain or other problems.
For more information, see the NCI booklets
Chemotherapy
and You 3 and
Radiation Therapy and You 4.
Hospice care
is an option if you feel you are no longer
benefiting from cancer treatments. Choosing hospice care
doesn't mean that you've given up. It just means the
treatment goals are different at this point. It does not mean
giving up hope, but rather changing what you hope for. But
be sure to check with the hospice you use to learn what
treatments and services are covered. Check with your
insurance company also.
The goal of hospice is to help patients live each day to
the fullest by making them comfortable and lessen their
symptoms. Hospice doctors, nurses, spiritual leaders, social
workers, and volunteers are specially trained. They are
dedicated to supporting their patients' and families'
emotional, social, and spiritual needs as well as dealing with
patients' medical symptoms.
People usually qualify for hospice services when their doctor
signs a statement that says that patients with their type and
stage of disease, on average, aren't likely to survive beyond 6
months. Many people don't realize that they can use hospice
services for a number of months, not just a few weeks. In
fact, many say they wish they had gotten hospice care much
sooner than they did. They were surprised by the expert care
and understanding that they got. Often, control of symptoms
not only improves quality of life but also helps people live
longer. You will be reviewed periodically to see if hospice
care is still right for you. Services may include:
- Doctor services (You may still keep your own
doctors, too.)
- Nursing care
- Medical supplies and equipment
- Drugs to manage cancer-related symptoms and pain
- Short-term in-patient care
- Homemaker and home health aide services
- Respite (relief) services for caregivers. This means
someone else helps with care for awhile, so the
caregiver can take a break
- Counseling
- Social work services
- Spiritual care
- Bereavement (grief) counseling and support
- Volunteer services
What to Expect With Hospice Care |
You can get hospice services at home, in special facilities, in
hospitals, and in nursing homes. They have specialists to
help guide care. They also have nurses on call 24 hours a
day in case you need advice. And they have many
volunteers who help families care for their loved one.
Some hospices will give palliative chemotherapy at home as
well. Hospice care doesn't seek to treat cancer, but it does
treat reversible problems with brief hospital stays if needed.
An example might be pneumonia or a bladder infection.
Medicare, Medicaid, and most private insurers cover
hospice services. For those without coverage and in
financial need, many hospices provide care for free. To
learn more about hospice care, call the National Hospice
and Palliative Care Organization at 1-800-658-8898. Or
visit their Web site at
http://www.nhpco.org. The Web
site can also help you find a hospice in your community. |
Benefits of Hospice and Home Care |
Hospice and home care professionals can help you and
your family work through some tough emotional issues.
A social worker can offer emotional support, help in
planning hospice or home care, and ease the move
between types of care. Many people prefer the comfort
of their own home, familiar surroundings, and having
friends and family members nearby. Getting health care
at home gives family members, friends, and neighbors the
chance to spend time with you and help with your care.
|
Home care services are for people who are at home rather
than in a hospital. Home care services may include:
- Monitoring care
- Managing symptoms
- Providing medical equipment
- Physical and other therapies
You may have to pay for home care services yourself. Check
with your insurance company. Medicare, Medicaid, and
private insurance will sometimes cover home care services
when ordered by your doctor. But some rules apply. So talk
to your social worker and other members of your health care
team to find out more.
Talking With Your Health Care Team
"I told the doctor when I first met
him that I needed honesty from
him; otherwise, I didn't want to
work with him. So he promised me
he would be honest, and he was.
He said, 'You've got stage-4 lung
cancer. You have 3 months to
2 years if everything works well.'
I needed to know everything."
- Patrice
As your disease advances, it's still important to give feedback
to your doctor. That's the only way he or she can know what
is working for you. Many people have a treatment team of
health providers who work together to help them. This team
may include doctors, nurses,
oncology social workers,
dietitians,
and other
specialists.
They need to fully know
your desires during treatment and at the end of your life.
Let them know about any discomfort you have. You have a
right to live your remaining days with dignity and peace of
mind. So it's important to have a relationship and an
understanding with those who will be caring for you.
Here are just a few topics you may want to discuss with your
doctor or other members of your health care team:
- Pain or other symptoms. Be honest and open about
how you feel. Tell your doctor if you have pain and
where. Also tell him or her what you expect in the
way of pain relief. (See
Getting Help for Your Symptoms 5
for more about
pain and other symptoms.)
- Communication. Some people want to know details
about their care. Others prefer to know as little as
possible. Some patients want their family members to
make most of their decisions. What would you
prefer? Decide what you want to know, how much
you want to know, and when you've heard enough.
Choose what is most comfortable for you, then tell
your doctor and family members. Ask that they follow
through with your wishes.
- Family wishes. Some family members may have
trouble dealing with cancer. They don't want to know
how far the disease has advanced or how much time
doctors think you have. Find out from your family
members how much they want to know, and tell your
health care team their wishes. Do this as soon as
possible. It will help avoid conflicts or distress among
your loved ones. (See
Talking With the Special People 6
for more on talking
to your loved ones.)
Remember that only you and those closest to you can answer
many of these questions. Having answers to your questions
can help you know what to expect now and in the future.
"My doctor said, 'The cancer is spreading to your
lungs,' and from that moment on, I didn't hear a word
he said. He started talking about my options, but all I
saw were lips moving. I was in total shock."
- Tyrone
- Make a list of your questions before each
appointment.
- Bring a family member or trusted friend with you to
your medical visits. This person can help you
remember what the doctor or nurse said, and talk
with you about it after the visit.
- Ask all your questions. If you do not understand an
answer, keep asking until you do. There is no such
thing as a "stupid" question.
- Take notes. You can do this or you can ask a family
member or friend to take them for you. Or you can
ask if it's okay to use a tape recorder.
- Get a phone number of someone to call with followup
questions.
- Keep a file or notebook of all the papers and test
results that your doctor has given you. Take this with
you to your visits. Also keep records or a diary of all
your visits. List the drugs and tests you have taken.
- Keep a record of any upsetting symptoms or side
effects you have. Note when and where they occur.
Take this with you on your visits.
- Find out what to do in an emergency. This includes
whom to call, how to reach them, and where to go.
No One Knows the Future |
It's normal for people to want to know how long they will
have to live. It's also natural to want to prepare for what
lies ahead. You may want to prepare emotionally as well
as to make certain arrangements and plans.
But predicting how long someone will live is not exact.
Your doctor may be able to give you an estimate, but
keep in mind that it's a guess. Every patient is different.
Your doctor has to take into account your type of cancer,
treatment, past illnesses, and other factors.
Some patients live long past the time the doctor first
predicted. Others live a shorter time. Also, an infection
or other complication could happen and change things.
Your doctor may know your situation best, but even he or
she cannot know the answer for sure. And doctors don't
always feel comfortable trying to give you an answer.
In truth, none of us knows when we are going to die.
Unexpected events happen every day. The best we can
do is try to live fully and for today.
|
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Getting Help for Your Symptoms
"The nighttime is harder than
during the day. There's not all that
routine going on to take my mind
off of things. Sometimes I fall
asleep, but then wake up in the
middle of the night sweaty and
shaky."
- Susan
Cancer and its treatment affect people differently. Some
have symptoms, while others have no symptoms for a long
time. As we said earlier, you have a right to comfort care
throughout your illness.
Sometimes people assume their symptoms will get worse as
their cancer progresses. But with good supports in place and
good care, your symptoms should always be managed. So don't
downplay your symptoms if you're having them. It's important
to report how you are feeling. Tell your doctor, members of
your health care team, and your loved ones. If you feel very sick
or tired, your doctor may be able to adjust your treatment or
give you other medicine.
Following are some of the symptoms you may have.
Having cancer doesn't always mean that you'll have pain. But
if you do, you shouldn't accept pain as normal. Most types of
pain can be treated. Your doctor can control pain with
different medicines and treatments.
You may want to ask your doctor if you can talk to a pain
specialist. Many hospitals have doctors on staff who are
experts at treating pain. They may also have palliative
medicine specialists.
Managing your pain helps you sleep and eat better. It makes
it easier to enjoy your family and friends and focus on what
gives you joy.
There are a few different ways to take pain medicine,
including:
- By mouth
- Through the skin (like with a patch)
- By shots
- Through an
I.V.
or an
S.C.
pump
Your medicine, and how you take it, will depend on the type
of pain and its cause. For example, for constant pain you
may need a steady dose of medicine over a long period of
time. You might use a patch placed on the skin or a slowrelease
pill.
Medicines can be used for all types of pain, including:
- Mild to medium pain
- Medium to very bad pain
-
Breakthrough pain
- Tingling and burning pain
- Pain caused by swelling
You should have regular talks with your health care team
about the type and extent of your pain. That's because pain
can change throughout your illness. Let them know the kind
of pain you have, how bad it is, and where it hurts.
You may want to keep a "pain diary." Write down the
information that's noted in "Controlling Pain: What to Tell Your Doctor". Include the
time of day that the pain occurred and what you were doing.
Rate the pain on a scale of 0 to 10. (Zero means no pain,
and 10 is the worst pain you could have.) Use the diary when
you talk to your doctor about your pain.
Unlike other medicines, there is no "right" dose for many
pain medicines. Yours may be larger or smaller than
someone else's. The right dose is the one that relieves your
pain and makes you feel better.
Cancer pain is usually treated with medicine and other
therapies. But there are also some non-drug treatments.
They are forms of
complementary and alternative medicine
(CAM). Many people have found the methods listed below
helpful. But talk with your health care team before trying
any of them. Make sure they are safe and won't interfere
with your cancer treatment.
-
Acupuncture
is a form of Chinese medicine that
stimulates certain points on the body using small
needles. It may help treat nausea and control pain.
Before using acupuncture, ask your health care team
if it is safe for your type of cancer.
-
Imagery
is imagining scenes, pictures, or experiences
to feel calmer or perhaps to help the body heal.
-
Relaxation techniques
include deep breathing and
exercises to relax your muscles.
-
Hypnosis
is a state of relaxed and focused attention.
One focuses on a certain feeling, idea, or suggestion.
-
Biofeedback
is the use of a special machine to help
the patient learn how to control certain body
functions. These are things that we are normally not
aware of (such as heart rate).
-
Massage therapy
brings relaxation and a sense of
well-being by the gentle rubbing of different body
parts or muscles. Before you try this, you need to
check with your doctor. Massage is not recommended
for some kinds of cancer.
These methods may also help manage stress. Again, talk to
your health care team before using anything new, no matter
how safe it may seem. Ask your health care team for more
information about where to get these treatments. To learn
more, see the NCI booklet
Thinking About Complementary and
Alternative Medicine: A Guide for People With Cancer 7.
Controlling Pain: What to Tell Your Doctor |
When describing pain to your doctor, be as detailed as
you can. Your doctor may ask:
- Where exactly is your pain? Does it move from
one spot to another?
-
How does the pain feel - dull, sharp, burning?
-
How often does your pain occur?
-
How long does it last?
-
Does it start at a certain time - morning,
afternoon, night?
- What makes the pain better? What makes it worse?
|
Using Strong Drugs To Control Pain |
People with cancer often need strong medicine to help
control their pain. Don't be afraid to ask for pain
medicine or for larger doses if you need them. The drugs
will help you stay as comfortable as you can be.
When treating pain in people with cancer, addiction is
not an issue. Sadly, fears of addiction sometimes prevent
people from taking medicine for pain. The same fears
also prompt family members to encourage loved ones to
"hold off" between doses. But people in pain get the
most relief when they take their medicines and
treatments on a regular schedule.
|
Cancer takes a toll on both your body and your mind. You
are coping with many different things now. You may feel
overwhelmed. Pain and medicines for pain can also make
you feel anxious or depressed. And you may be more likely
to feel this way if you have had these feelings before.
Here are some signs of anxiety:
- Feeling very tense
and nervous
-
Racing heartbeat
-
Sweating a lot
-
Trouble breathing or
catching your breath
-
A lump in your throat or a knot in your stomach
-
Sudden fear
Feeling anxious can be normal. But if it begins disrupting
your daily life, ask for help from the members of your health
care team. They can recommend someone for you to talk to.
Counseling from a mental health professional has been
shown to help many people cope with anxiety. Your doctor
can also give you medicines that will help. Some of the
complementary and alternative medicine choices for pain
may work for your anxiety as well (see
"Other Ways to Treat Pain"). Art therapy
and music therapy have also helped people cope.
Fatigue is more than
feeling tired. Fatigue is
exhaustion - not being
able to do even the
small things you used
to do. A number of
things can cause
fatigue. Besides cancer and its treatment, they include
anxiety, stress, and changes in your diet or sleeping patterns.
If you are having some of these problems, you might want to:
- Tell your health care team at your next visit. Some
medicines can help with fatigue.
-
Ask about your nutrition needs.
-
Plan your daily activities. Do only what you really
must do.
-
Hand over tasks to others who are willing to help you.
-
Include short periods of rest and relaxation every day.
-
Take naps (no longer than 15-30 minutes).
-
Ask others for help, especially when you are
feeling fatigued.
-
Do light exercises that are practical for you.
Nausea and vomiting may be a problem for cancer patients.
Both can make you feel very tired. They can also make it hard
to get treatments or to care for yourself. If you feel sick to
your stomach or are throwing up, there are many drugs to
help you. Ask your health care team which medicines might
work best for your nausea and vomiting.
You also may want to:
- Make small changes in your diet. Eat small amounts
5-6 times a day.
-
Avoid foods that are sweet, fatty, salty, spicy, or
have strong smells. These may make nausea and
vomiting worse.
-
Drink as much liquid as possible. You'll want to keep
your body from getting dried out (dehydrated).
Water, broth, juices, clear soft drinks, ice cream,
and watermelon are good choices.
-
Choose cool foods, which may help more than hot ones.
-
Try acupuncture.
Constipation is a problem in which stool becomes hard, dry,
and difficult to pass, and bowel movements do not happen
very often. Other symptoms may include painful bowel
movements, and feeling bloated, uncomfortable, and
sluggish. Chemotherapy, as well as other medicines
(especially those used for pain), can cause constipation. It
can also happen when people become less active and spend
more time sitting or lying down.
Here are some ways to help manage constipation:
- Drink plenty of fluids each day. Many people find that
drinking warm or hot fluids helps with bowel
movements.
-
Be active. You can be active by walking, doing water
aerobics, or yoga. If you cannot walk, talk with your
doctor or nurse about ways you can be active, such as
doing exercises in bed or a chair.
-
Ask your doctor, nurse, or dietitian if you should eat
more fiber. He or she may suggest you eat bran,
whole wheat bread and cereal, raw or cooked
vegetables, fresh and dried fruit, nuts, and popcorn
and other high-fiber foods.
-
Let your doctor or nurse know if you are in pain or
discomfort from not having a bowel movement.
He or she may suggest you use an enema or take a
laxative or stool softener. Check with your doctor or
nurse before using any of these.
-
Ask your doctor about giving you laxatives when you
start to take pain medications. Taking a stool softener
at the same time you start taking pain drugs may
prevent the problem.
Eating and appetite changes are common in the later stages
of cancer. As your cancer progresses, your appetite may
become poor.
On the other hand, you may be eating enough, but your
body can't absorb the nutrients. This can cause you to lose
weight, fat, and muscle.
Nutrition goals may become less important at this time. Even
if your family members think you should have food, let your
body be the judge. The goal should not be weight gain or
improving your eating but rather comfort and symptom relief.
Your nurse, dietitian, and other members of your health care
team can help. They can help you decide on changes to your
diet that may be needed to keep you as healthy as possible.
There are also new drugs to improve appetite and get rid of
nausea. Ask your health care team about them.
Illness, pain, drugs, being in the hospital, and stress can
cause sleep problems. Sleep problems may include:
- Having trouble falling asleep
-
Sleeping only in short amounts of time
-
Waking up in the middle of the night
-
Having trouble getting back to sleep
To help with your sleep problem, you may want to try:
- Reducing noise, dimming the lights, making the
room warmer or cooler, and using pillows to support
your body
-
Dressing in soft, loose clothing
-
Going to the bathroom before bed
-
Eating a high-protein snack 2 hours before bedtime
(such as peanut butter, cheese, nuts, or some sliced
chicken or turkey)
-
Avoiding caffeine (coffee, teas, colas, hot cocoa)
-
Keeping regular sleep hours (avoid naps longer than
15-30 minutes)
-
Talking with your health care team about drugs to help
you sleep. These may give relief on a short-term basis.
You may start noticing signs that you feel confused. This can
occur in some people with advanced stage cancer. It can also
be caused by some medicines. Confusion may begin suddenly
or come and go during the day. Possible signs include:
- Sudden changes in feelings (such as feeling calm
then suddenly becoming angry)
-
Having trouble paying attention or concentrating
(such as feeling easily distracted, having trouble
answering questions, or finding it harder to do tasks
that involve logic, such as math problems)
-
Memory and awareness problems (such as
forgetting where you are and what day it is or
forgetting recent events)
If you notice these signs, talk to your health care team to try
to find out the cause. Meanwhile, try one or more of the
following to help relieve confusion:
- Go to a quiet, well-lit room with familiar objects.
-
Reduce noise.
-
Have family or loved ones nearby.
-
Put a clock or calendar where it can be seen.
-
Limit changes in caregivers.
-
Ask your health care team about drugs that may help.
Coping With Your Feelings
You've probably felt a range of feelings during your cancer experience. You may
have had these feelings at other times in your life, too, but they may be more
intense now.
There is no right or wrong way to feel. And there is no right or wrong way to
react to your feelings. Do what is most comfortable and useful for you.
You may relate to all of the feelings below or just a few. You may feel them at
different times, with some days being better than others. It may help to know
that others have felt the same way that you do. You may also want to read "Ways
You Can Cope".
"I feel it's important to me that
I live each day to the fullest,
and make peace with my relatives
and friends and develop loving
relationships with them."
- Kate
You can feel a sense of hope, despite your cancer. But what you hope for
changes with time. If you have been told that remission may not be possible,
you can hope for other things. These may include comfort, peace, acceptance,
even joy. Hoping may give you a sense of purpose. This, in itself, may help you
feel better.
To build a sense of hope, set goals to look forward to each day. Plan something
to get your mind off the cancer. Here are some tips from others with advanced
stage cancer:
-
Plan your days as you've always done.
-
Don't stop doing the things you like to do just because you have cancer.
-
Find small things in life to look forward to each day.
You can also set dates and events to look forward to. Don't limit yourself.
Look for reasons to hope, while staying aware of what's at hand. See "Ways You
Can Cope" for more ideas from other patients.
"My biggest struggle is that I need help, but I don't
want people to give me too much of it. I want to do
what I can for myself. If I have to work at something,
there's a reason to live."
- Will
People with cancer find strength they didn't know they had. You may have felt
overwhelmed when you first learned that your doctors couldn't control your
cancer. And now you aren't coping as well as you did in the past. But your
feelings of helplessness may change. You may find physical and emotional
reserves you didn't know you had. Calling on your inner strength can help
revive your spirit.
Some people find it helpful to focus on the present instead of the past or
future. They start a new daily routine. They accept that it may have to be
different from the old routine. Others like to plan ahead and set goals. With
places to go and things to do, life stretches out before them. Others focus on
the relationships they have with people close to them. Inner strength is
different for each person. So draw on the things in your life that are
meaningful to you. Look at other sections in this booklet for ways to tap into
your inner strength.
It's normal to feel sad. You may have no energy or not want to eat. It's okay
to cry or express your sadness in another way. You don't have to be upbeat all
the time or pretend to be cheerful in front of others.
Pretending to feel okay when you don't doesn't help you feel better. And it may
even create barriers between you and your loved ones. So don't hold it in. Do
what feels natural to you.
Depression can happen if sadness or despair seems to take over your life. Some
of the signs below are normal during a time like this. Talk to your doctor if
they last for more than 2 weeks. Some symptoms could be due to physical
problems. It's important to tell someone on your health care team about them.
Signs of Depression
-
Feeling helpless or hopeless, or that life has no meaning
-
Having no interest in family, friends, hobbies, or things you used to enjoy
-
Losing your appetite
-
Feeling short-tempered and grouchy
-
Not being able to get certain thoughts out of your mind
-
Crying for long periods of time or many times each day
-
Thinking about hurting or killing yourself
-
Feeling "wired," having racing thoughts or panic attacks
-
Having sleep problems, such as not being able to sleep, having nightmares, or
sleeping too much.
Your doctor can treat depression with medicine. He or she also may suggest that
you talk about your feelings. You can do this with a psychologist or counselor.
Or you may want to join a support group.
"I heard the doctor say, 'I'm so sorry, but . . .' and
then I heard nothing else. My head was spinning,
and I kept saying to myself, 'No, the doctor must be
making a mistake.'"
- Rosa
We all cope with loss or the threat of loss in different ways. You may feel
sadness, loneliness, anger, fear, and guilt. Or you may find the way you think
changes from time to time. For example, you may get easily confused or feel
lost. Or your thoughts may repeat themselves over and over again. You may also
find yourself low in energy. You may not want to do things or see people. These
are all normal reactions to grief.
What you grieve for is as varied as how you think and feel. You may be grieving
for the loss of your body as it used to be. You may grieve for the things you
used to be able to do. You also may grieve losing what you have left: yourself,
your family, your friends, your future.
It's okay to take time for yourself and look inward. It's also okay to surround
yourself with people who are close to you. Let your loved ones know if you want
to talk. Let them know if you just want to sit quietly with them. There is no
right or wrong way to grieve.
Often people who go through major change and loss need extra help. You can talk
with a member of your health care team, a member of your faith community, or a
mental health professional. You don't have to go through this alone.
"I feel like the reality of this cancer isn't going to go
away if I deny it. If I did that, I might miss the
comfort I get from sharing fears and concerns. I don't
want to miss the sense of well-being I have knowing
I have taken care of my loved ones."
- Carrie
It's hard to accept the news that your cancer has spread or can no longer be
controlled. And it's natural to need some time to adjust. But this can become a
serious problem if it lasts longer than a few weeks. It can keep you from
getting the care you need or talking about your treatment choices. As time
passes, try to keep an open mind. Listen to what others around you suggest for
your care.
The feeling of "No, not me!" often changes to "Why me?" or "What's next?" You
have a lot to deal with right now. It's normal and healthy to feel angry. You
don't have to pretend that everything is okay. You may be mad at your doctor,
family members, neighbors, and even yourself. Some people get angry with God
and question their faith.
At first, anger can help by moving you to take action. You may decide to learn
more about different treatment options. Or you may become more involved in the
care you are getting. But anger doesn't help if you hold it in too long or take
it out on others. Often the people closest to us are the ones who have to deal
with our anger, whether we want that or not.
It may help to figure out why you are angry. This isn't always easy. Sometimes
anger comes from feelings that are hard to show, such as fear, panic, worry, or
helplessness. But being open and dealing with your anger may help you let go of
it. Anger is also a form of energy. It may help to express this energy through
exercise or physical activity, art, or even just hitting the bed with a pillow.
(See "Ways You Can Cope".)
"Just because I love God and know where I'm going,
doesn't mean I'm not stressed. I worry all the time
about what's to come. I try to focus on the things I can
control, but it's not always easy."
- David
Everyone has stress, but most likely you're having a lot more now. After all,
you're dealing with many changes. Sometimes, you may not even notice that
you're stressed. But your family and friends may see a change.
Anything that helps you feel calm or relaxed may help you. Try to think of
things that you enjoy. Some people say it helps to:
-
Exercise or take a walk.
-
Write thoughts and feelings in a journal.
-
Meditate, pray, or do relaxation exercises.
-
Talk with someone about your stress.
-
Do yoga or gentle stretching.
-
Listen to soothing music.
-
Express yourself through art.
See "Ways You Can Cope" for more ideas to relieve stress.
"I have people around all day, but there's nothing
worse than waking up alone and upset at 3:00 in the
morning in a quiet, dark room. You have to have
someone you can call right then."
- Jamal
Facing the unknown is very hard. At times, you may feel scared of losing
control of your life. You may be afraid of becoming dependent on other people.
You may be afraid of dying.
If you struggle with these fears, remember that many others have felt the same
way. Some people worry about what will happen to their loved ones in the
future. Others worry about money. Many people fear being in pain or feeling
sick. All these fears are normal.
Sometimes patients or family members worry that talking about their fears will
make the cancer worse. This is not true. Thinking about getting sicker or dying
is not going to make your health worse. But it's good to be hopeful and
positive. It's better for your health to express your feelings, rather than
hold them in.
Some people say it helps if you:
-
Know what to expect. Learn more about your illness and treatment options by
asking questions of your healthcare team.
-
Update your affairs. If you have not already done so, make sure your will and
other legal paperwork are in order. Then you won't have to worry about it. (See Advance Planning 10.)
-
Try to work through your feelings. If you can, talk with someone you trust.
If you feel overwhelmed by fear, remember that others have felt this way, too.
It's okay to ask for help.
"I couldn't stop thinking about what I could have done
to slow down my cancer. Maybe I should have gone to
the doctor sooner, maybe I should have given up
sweets, maybe I should have done this, maybe I should
have done that. After talking about it with my social
worker, she helped me see that this is no one's fault,
especially mine."
- Erika
It's normal for people with cancer to wonder if they did anything to add to
their situation. They may blame themselves for lifestyle choices. They may feel
guilty because treatment didn't work. They may regret ignoring a symptom and
waiting too long to go to the doctor. Others worry that they didn't follow the
doctor's orders in the right way.
It's important to remember that the treatment failed you. You didn't fail the
treatment. We can't know why cancer happens to some people and not
others. In any case, feeling guilty won't help--it can even stop you from taking
action and getting the treatment you need. So, it's important for you to:
-
Try to let go of any mistakes you think you may have made.
-
Focus on things worthy of your time and energy.
-
Forgive yourself.
You may want to share these feelings with your loved ones. Some people blame
themselves for upsetting the people they love. Others worry that they'll be a
burden on their families. If you feel this way too, take comfort in this: many
family members have said it is an honor and a privilege to care for their loved
one. Many consider it a time when they can share experiences and become closer
to one another. Others say that caring for someone else makes them take life
more seriously and causes them to rethink their priorities.
Maybe you feel that you can't talk openly about these things with your loved
ones. If so, counseling or a support group may be an option for you. Let your
health care team know if you would like to talk with someone.
"I know my friends try to understand. It doesn't
matter what I say though--they just don't get it.
I can't even begin to explain to them how I feel or
what's going on. I'm not saying it's their fault or
anything. It's just hard."
- Jennifer
You may feel alone, even if you have lots of people around you who care. You
may feel that no one really understands what you're going through. And as the
cancer progresses, you may see family, friends, or coworkers less often. You
may find yourself alone more than you would like. Some people may even distance
themselves from you because they have a hard time coping with your cancer. This
can make you feel really alone.
Although some days may be harder than others, remember that you aren't alone.
Keep doing the things you've always done the best you can. If you want to, tell
people that you don't want to be alone. Let them know that you welcome their
visits.
More than likely, your loved ones are feeling many of the same things you are.
They, too, may feel cut off from you if they can't talk with you. You may also
want to try joining a support group. There you can talk with others who share
your feelings.
Finding Humor |
Laughter can help you relax. Even a smile can fight off stressful thoughts. Of
course, you may not always feel like laughing, but other people have found
these ideas can help:
-
Enjoy funny things children and pets do.
-
Watch funny movies or TV shows.
-
Read a joke book or look at jokes on the Internet. If you don't own a computer,
use one at your local library. Or ask a friend to print some for you.
-
Listen to comedy tapes.
-
Read the comics in the newspaper or the cartoons and quotes in magazines.
-
Look in the humor section in the library or book store.
|
Your feelings will come and go, just as they always have in your life. It helps
to have some strategies to deal with them.
First, know that you aren't alone. Many people have been in your situation.
Some choose to confide in friends and family members. Others do better when
they join a support group. It helps them to talk with others who are facing the
same challenges. You may prefer to join an online support group, so you can
chat with people from your home.
If support groups don't appeal to you, there are many experts who are trained
to work in cancer care. These include oncology social workers,
health psychologists, or
counselors.
Many people also find faith as their source of support. They may seek comfort
from the different members of their faith community. Or they may find that
talking to a leader in their religious or spiritual community can be helpful.
If you need help finding faith-based support, many hospitals have a staff
chaplain who can give support to people of all faiths and religions. Your
health care team may also be able to tell you about faith-based organizations
in the area.
About Support Groups |
You may have heard about support groups in your area for people with cancer.
They can meet in person, by phone, or over the Internet. They may help you gain
new insights into what's happening, get 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 and try to help others who are dealing with
the same kinds of issues. Some people like to go and just listen. Others prefer
not to join support groups at all. Some people aren't comfortable with this
kind of sharing.
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 people with
cancer say that Web sites with support groups have helped them a lot.
|
You may be able to keep doing many of your regular activities, even though some
may be harder to do. Just remember to save your strength for the things you
really want to do. Don't plan too many events for one day. Also, try to stagger
things throughout the day.
On the next page you'll find some ideas that other patients say have helped
them cope. As you can see, even little things can help.
Advance Planning
"Don't feel like you're being morbid
because you're taking care of
business in advance. My goal is to
try not to leave things undone
because it's not going to be any
easier on anybody else."
- Ronald
This section outlines some things you can do to ensure your
wishes are understood. This can help relieve the burden on
your loved ones later.
It's important to start talking about your wishes with the
people who matter most to you. There may come a time
when you can't tell your health care team what you need.
Some people prefer to let their doctor or their family
members make decisions for them. But often people with
cancer feel better once they have made their desires known.
Advance directives
are legal papers that tell your loved ones
and doctors what to do if you can't tell them yourself. The
papers let you decide ahead of time how you want to be
treated. They may include a
living will
and a
durable power of attorney for health care.
Think about giving someone you
trust the right to make medical decisions for you. This is one
of the most important things you can do.
A living will lets people know what kind of medical care you
want if you are terminally ill (dying). It states in writing your
wishes about being kept alive by artificial means or extreme
measures (such as a breathing machine or feeding tube).
Some states allow you to give other instructions as well.
A durable power of attorney for health care names a person
to make medical decisions for you when you can't make them
yourself. (In some places, you can appoint this person to
make decisions when you no longer want to.) This person is
called a
health care proxy.
Choose a person you can trust to
carry out your decisions and follow your preferences. Be sure
to discuss this in-depth with the person you choose. They
need to know they could be called upon. They should
understand your wishes and any religious concerns you have.
Setting up an advance directive is not the same as giving up.
Making decisions now keeps you in control. You are making
your wishes known for all to follow. This can help you worry
less about the future and live each day to the fullest.
It's hard to talk about these issues. But it often comforts
family members to know what you want. And it saves them
having to bring up the subject themselves. You may also gain
peace of mind. You are making hard choices for yourself
instead of leaving them to your loved ones.
Make copies of your advance directives. Give them to your
family members, your health care team, and your hospital
medical records department. This will ensure that everyone
knows your decisions.
Here are some other legal papers that are not part of the
advance directives:
- A will divides your property among your heirs.
- A trust is when a person you appoint oversees, invests,
or pays out money to those named in the trust.
- Legal power of attorney - you appoint a person to
make financial decisions for you when you can't
make them yourself.
Following State Laws |
You do not always need a lawyer present to fill out these
documents. But you may need a
notary public.
Each state
has its own laws concerning living wills and durable
powers of attorney. These laws can vary in important
details. In some states, a living will or durable power of
attorney signed in another state isn't legal. Talk with your
lawyer or social worker to get more details. Or look at
your state's government Web site. (See the Resources 11 section at the end of the booklet for more on how to get
copies of advance directives.)
|
Careful planning reduces the financial, legal, and emotional
burden your family and friends will face after you're gone.
For many people, it's hard bringing up these subjects. But
talking about them now can avoid problems later.
Maybe you don't feel comfortable bringing up the subject
with loved ones. Or maybe your family simply doesn't talk
about these things. In either case, seek help from a member
of your health care team. They may be able to help your
family understand.
- Clearing up insurance issues. Contact your health
insurance company if you decide to try a new
treatment or go into hospice. Most insurance plans
cover hospice. They also cover brief home visits from
a nurse or a home health aide several times a week.
But it's wise to ask in advance. This may prevent
payment problems later.
- Putting your affairs in order. You can help your
family by organizing records, insurance policies,
documents, and instructions. You may want to call
your bank to make sure you have taken all the right
steps in doing these things. On the next page is a
checklist to share with the person who will help you
manage your affairs. (Also see the Personal Affairs
Worksheet 12.)
- Making funeral arrangements. You may want to help
your family plan a funeral or memorial service that
has your personal touch. Some people plan services
that are celebrations. Talk with your family about how
you want others to remember you.
A Checklist for Organizing Your Affairs |
- If you can't physically gather important papers,
make a list of where your family can find them.
- Keep your papers in a fireproof box or with
your lawyer.
- If you keep your important papers in a safety deposit
box, make sure that a family member or friend has
access to the box.
- Although original documents are needed for legal
purposes, give family members photocopies.
See the Personal Affairs Worksheet 12. You can use it as a guide to the types of papers
your family will need.
|
Talking With the Special People
"I went to the Grand Canyon with
my brother. I started crying and
couldn't stop. I realized he started
crying, too, because he couldn't
handle the fact that he may not
have me around any more. So
there we were, just crying in the car.
He was like, 'I don't want to lose you.
I don't want you to die.'"
- Rhonda
Your loved ones may need time to adjust to the new stage of
your illness. They need to come to terms with their own
feelings. These may include confusion, shock, helplessness, or
anger. Let them know that they can offer comfort just by being
themselves and by being at ease with you. Ask them to listen
when you need it, rather than try to solve every problem.
Knowing that people cope with bad news in their own way
will help you and your loved ones deal with their emotions.
Many people are reassured and comforted by sharing
feelings and taking the time to say what they need to.
Bear in mind that not everyone can handle the thought that
they might lose you. Or some people may not know what to
say or do for you. As a result, relationships may change. This
isn't because of you, but because others have trouble coping
with their own painful feelings.
If you can, remind them that you are still the same person
you always were. Let them know if it's all right to ask
questions or tell you how they feel. Sometimes just
reminding them to be there for you is enough. But it's also
okay if you don't feel comfortable talking about it either.
Sometimes certain topics are hard to talk about with others.
If this is the case, you may want to talk by yourself with a
member of your medical team or a trained counselor. You
also may want to attend a support group where people meet
to share common concerns.
Some families have trouble expressing their needs to each
other. Other families simply do not get along with each other.
If you don't feel comfortable talking with family members,
ask a member of your health care team to help. You could
also ask a social worker or other professional to hold a family
meeting. This may help family members feel safer to express
their feelings openly. It can also be a time for you and your
family to meet with your team to problem-solve and set goals.
It can be very hard to talk about these things. But studies
show that cancer care goes more smoothly when everyone
stays open and talks about the issues.
Often, talking with the people closest to you is harder than
talking with anyone else. Here's some advice on talking with
loved ones during tough times.
"My wife has been my biggest source of strength, plain
and simple. That's how I cope with all of it, because
we talk and sometimes we literally are talking until 4
or 5 in the morning. We are just sitting here and just
talking and reminiscing, and asking questions and
answering them. Being there for one another."
- Steve
Some relationships grow stronger during cancer treatment,
but others are weakened. It's very common for patients and
their partners to feel more stress than usual as a couple.
There is often stress about:
- Knowing how to give and get support
- Coping with new feelings that have come up
- Figuring out how to communicate
- Having money problems
- Making decisions
- Changing roles
- Having changes in social life
- Coping with changes in daily routines
Some people feel more comfortable talking about serious
issues than others. Only you and your loved one know how
you communicate. Some things to think about are:
- Talk things over. This may be hard for you or your
partner. If so, ask a counselor or social worker to talk
to both of you together.
- Be realistic about demands. Your spouse or partner
may feel guilty about your illness. They may feel
guilty about any time spent away from you. They also
may be under stress due to changing family roles.
-
Spend some time apart. Your partner needs time to
address his or her own needs. If these needs are
neglected, your loved one may have less energy and
support to give. Remember, you didn't spend 24
hours a day together before you got sick.
- Know that it's normal for body changes and
emotional concerns to affect your sex life. Talking
openly and honestly is key. But if you can't talk
about these issues, you might want to talk with a
professional. Don't be afraid to seek help or advice
if you need it.
"We can't always protect the people we love. But we
can prepare them."
- Unknown
Keeping your children's and grandchildren's trust is still very
important at this time. Children can sense when things are
wrong. It's best to be as open as you can about your cancer.
They may worry that they did something to cause the cancer.
They may be afraid that no one will take care of them. They
may also feel that you are not spending as much time with
them as you used to. Although you can't protect them from
what they may feel, you can prepare them.
Some children become very clingy. Others get into trouble
in school or at home. Let the teacher or guidance counselor
know what is going on. And with your kids, it helps to keep
the lines of communication open. Try to:
- Be honest. Tell them you are sick and that the
doctors are working to help you feel comfortable.
- Let them know that nothing they did or said caused
the cancer. And make sure they know that they can't
catch it from others.
- Tell them you
love them.
- Tell them it's
okay to be upset,
angry, or scared.
Encourage them
to talk.
- Be clear and simple, since children do not have the
focus of adults. Use words they can understand.
- Let them know that they will be taken care of
and loved.
- Let them know that it's okay to ask questions. Tell
them you will answer them as honestly as you can.
In fact, children who aren't told the truth about an
illness can become even more scared. They often use
their imagination and fears to explain the changes
around them.
"My father and I are so much closer. It's a totally
different family than we were before I was diagnosed.
We've learned how to talk about how we feel, how to
talk to each other about what's going on and what
we're afraid of."
- Jake
Many of the things listed above also apply to teenagers. They
need to hear the truth about an illness. This helps keep
them from feeling guilt and stress. But be aware that they
may try to avoid the subject. They may become angry, act
out, or get into trouble as a way of coping. Others simply
withdraw. Try to:
- Give teenagers the space they need. This is especially
important if you rely on them more than before to
help with family needs.
- Give them time to deal
with their feelings,
alone or with friends.
- Let your teenager know
that they should still go
to school and take part
in sports and other fun
activities.
If you have trouble explaining
your illness, you might want to
ask for help. Try asking a close friend, relative, or health care
provider for advice. You could also go to a trusted coach,
teacher, or youth minister. Your social worker or doctor can
help you find a good counselor.
Your relationship with your adult children may change now
that you have advanced cancer. You may have to rely on
them more for different needs. It may be hard for you to ask
for support. After all, you may be used to giving support
rather than getting it. Or it may be hard for other reasons;
perhaps your relationship with them has been distant.
Adult children have their
concerns, too. They may become
fearful of their own mortality.
They may feel guilty because they
feel that they can't meet the
many demands on their lives as
parents, children, and employees.
As your illness progresses, it helps to:
- Share decision-making with your children.
- Involve them in issues that are important to you. These may include treatment choices, plans for the
future, or types of activities you want to continue.
Reaching out to your children and openly sharing your
feelings, goals, and wishes may help them cope with your
disease. It may also help lessen fears and conflict between
siblings when other important decisions need to be made.
"It's a roller coaster ride, so we just ride the roller
coaster. I've got the whole family prepared, and that's
what you have to do when you have cancer. Things
are going well and then really bad."
- Delia
Looking for Meaning
"I've learned a lot about myself and
the strength I have in dealing with
this. I've learned a lot about my
kids and family too, watching them
handle this, and it makes me proud
to be their mother. I figure I must
have done something right."
- Madeline
Many people who have advanced cancer look more deeply
for meaning in their lives. They want to understand their
purpose and their legacy. They want to examine the things
they have gone through in life. Some look for a sense of
peace or a bond with others. Some seek to forgive
themselves or others for past actions. Some look for answers
and strength through religion or spirituality.
Being spiritual can mean different things to different
people. It can be a very personal issue. Everyone has their
own beliefs about the meaning of life. Some people find it
through religion or faith. Some people find it by teaching,
or through volunteer work. Others find it in different ways.
Having cancer may cause you to think about what you
believe. You may think about God, an afterlife, about the
connections made between living things. This can bring a
sense of peace, a lot of questions, or both.
Like some people, you may also find that cancer changes
your values. Having the disease may help you learn what is
most important to you. The things you own and your daily
duties may seem less important. You may decide to spend
more time with loved ones or helping others. You may want
to do more things in the outdoors, or learn something new.
You may have already given a lot of thought to these issues.
Still, you might find comfort by exploring more deeply what
is meaningful to you. You could do this with someone close
to you, a member of your faith community, or a mental
health professional.
Or you may just want to take time for yourself. You may want
to reflect on your experiences and relationships. Writing in a
journal or reading also helps some people find comfort and
meaning. Many people find that prayer, meditation, or talking
with others has helped them cope and explore their lives.
Having advanced cancer often gives people a chance to look
back on life and all they have done. They like to look at the
different roles they have played throughout life. They think
about what something meant at the time, and what it means
now. Some gather things that have meaning to them to give
to their loved ones. Others share memories or projects with
loved ones.
Doing these things is often called "making a legacy" for
yourself. It can be whatever you want. Don't limit yourself!
And you can do these things alone or with others close to
you. Some examples of ways people have celebrated their
lives are:
- Making a video of special memories
- Reviewing or arranging family photo albums
- Charting or writing down your family's history
or family tree
- Keeping a daily journal of your feelings
and experiences
- Making a scrapbook
- Writing notes or letters to loved ones and children
- Reading or writing poetry
- Creating artwork, knitting, or making jewelry
- Giving meaningful objects or mementos to loved ones
- Writing down or recording funny or meaningful
stories from your past
- Planting a garden
- Making a tape or CD of favorite songs
- Gathering favorite recipes into a cookbook
You can do whatever you want that brings joy and meaning to
you. Some people with cancer also make what is called an
"ethical will." It's not a legal paper. It's something you write
yourself to share with your loved ones. Many ethical wills
contain the person's thoughts on his or her values, memories,
and hopes. They may also talk about the lessons learned in
life or other things that are meaningful. It can say anything
you want, in any way you want.
"For the meaning of life differs from man to man,
from day to day and from hour to hour. What matters,
therefore, is not the meaning of life in general but
rather the specific meaning of a person's life at a given
moment."
- Viktor Frankl
Closing Thoughts
"Our family has become very close
since I got cancer. I remember
my son said to me, 'Dad, it's all
because of the way you reacted to it.'
I believe him, too. I wasn't bitter.
He wrote a poem for me that said,
'You're embracing your death instead
of running away from it.' And that
was beautiful to me."
- Bill
Living with advanced stage cancer may bring many
challenges and hardships. But it can also be a time of
fulfillment and joy.
As you think about the issues raised in this booklet, keep in
mind that survival statistics are just numbers. The numbers
that really mean the most for any of us are quite different.
They measure the good days, the comfortable nights, and
the hours of happiness and joy. Keep living your life the best
that you can and in the fullest way possible.
"Think only of today, and when tomorrow comes, it
will be today, and we will think about it."
- St. Francis de Sales
Resources
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.
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.
Toll-free: | 1-800-4-CANCER (1-800-422-6237) |
TTY: | 1-800-332-8615 |
Visit: | 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 |
Visit: | 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.
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.
Toll-free: | 1-800-669-4000 |
TTY: | 1-800-669-6820 |
Visit: | www.eeoc.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.
Aging With Dignity
Provides information and materials regarding advance
directives. You can order the document Five Wishes, which
states your end of life decisions for your health care team,
and friends and family members.
American Cancer Society
National Cancer Information Center
Available to answer questions 24 hours a day, 7 days a week.
CancerCare
Offers free support, information, financial assistance, and
practical help to people with cancer and their loved ones.
Hospice Foundation of America
Provides programs and materials on hospice care, caregiving,
grief, and end of life. They also provide a hospice locator
service, and links to other organizations and resources.
Kids Konnected
Offers education and support for children who have a
parent with cancer or who have lost a parent to cancer.
National Coalition for Cancer Survivorship
Provides information on cancer support, employment,
financial and legal issues, advocacy, and related issues.
National Hospice and Palliative Care Organization
Provides information on hospice care, local hospice
programs, state specific advance directives, and locating a
local health care provider. They also provide education and
materials on palliative and end of life issues, as well as links
to other organizations and resources.
NeedyMeds--Indigent Patient Programs
Lists medicine assistance programs available from drug
companies. NOTE: Usually patients cannot apply directly to these
programs. Ask your doctor, nurse, or social worker to contact them.
Patient Advocate Foundation
Offers education, legal counseling, and referrals concerning
managed care, insurance, financial issues, job discrimination,
and debt crisis matters.
The Wellness Community
Provides free psychological and emotional support to cancer
patients and their families.
Personal Affairs Worksheet
By filling out this worksheet, you can help family members
deal with your personal affairs after you're gone. Be sure to let
your loved ones know about this list. It will help them cope
with your death and find comfort in knowing your needs and
wishes were met. Try to keep it updated and in a safe place.
Make sure that only those you trust have access to it.
Banks, savings and loans
Contact Information
What Needs to be Done
Life insurance company
Contact Information
What Needs to be Done
Health insurance company
Contact Information
What Needs to be Done
Disability insurance company
Contact Information
What Needs to be Done
Homeowners' or renters' insurance company
Contact Information
What Needs to be Done
Burial insurance company
Contact Information
What Needs to be Done
Unions and fraternal organizations
Contact Information
What Needs to be Done
Attorney
Contact Information
What Needs to be Done
Accountant
Contact Information
What Needs to be Done
Executor of the estate
Contact Information
What Needs to be Done
Internal Revenue Service
Contact Information
What Needs to be Done
Social Security office
Contact Information
What Needs to be Done
Pension or retirement plans
Contact Information
What Needs to be Done
Department of Veterans Affairs
Contact Information
What Needs to be Done
Investment companies
Contact Information
What Needs to be Done
Mortgage companies
Contact Information
What Needs to be Done
Credit card companies
Contact Information
What Needs to be Done
All other lenders
Contact Information
What Needs to be Done
Employer
Contact Information
What Needs to be Done
Faith or spiritual leader/organization
Contact Information
What Needs to be Done
Safety deposit box keys and box location
Safe, lock combinations
Location of other important items (such as jewelry)
For more information
This booklet is only one of many free booklets for
people with cancer. Here are some others you and
your loved ones may find useful:
These booklets are available from the National
Cancer Institute (NCI.) To learn more about the
specific type of cancer you have or to request any of
these booklets, 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 speak with
an information specialist.
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