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For a person with cancer, one of the hardest things to go
through is when the cancer keeps growing during treatment or comes back
after treatment is over. It is hard for their loved ones, too, and may
be extra hard for young children and teens.
You may find that you are even more worried now (if that's
possible) than you were when you first learned you had cancer. And it
may have been many years since that happened. No matter how much time
has passed, you may find yourself facing all-too-familiar feelings of
fear and uncertainty. Each person close to you will go through feelings
like this, too.
This discussion is for a parent with cancer, but it can also
help during the illness of any adult who is important to a child. We
will try to help you understand what your children might be thinking
and feeling, and share some tips on how you may be able to help them
through this time.
If the family member with cancer is a child, you may want to
see our Children
Diagnosed with Cancer series. There are other pieces in
this Helping Children
When A Family Member Has Cancer series that might also be
helpful. They are listed in the "Additional
resources" section at the end.
How can I help anyone else when I'm so upset
about my cancer coming back?
Learning that your cancer is back can seem so overwhelming --
you may feel that you can't help yourself, much less anyone else. All
of a sudden, your life is in chaos again and your survival is in
question. And then there are your kids to think about.
Even though you are your children's best source of security,
remember that you don't need to be perfect. Your steadfast love for
them is the most important factor in how they will manage, so try to be
realistic about what you expect of yourself. You may need to rely on
the help of others for some time during active treatment. Although it
may be hard to ask for help, remember that people often really want to
help and it is only for a short time, until you feel more in control.
You may feel sadness and grief as you prepare to do battle
with cancer again. You realize that your comfortable, normal life will
go away again, at least for a while. Patients often describe a feeling
of betrayal because their body has "let them down." They say things
like "I did everything I was supposed to (surgery, chemotherapy, or
radiation) and the cancer still came back!" You may wonder what you can
count on. All of these feelings are normal. At some point, you will be
able to rally your resources and fight the cancer again. But one of the
biggest mistakes you can make at this point is to expect to meet this
challenge alone. You, your family, and your loved ones must meet it
together, because this battle may be even harder than the first one.
So, take some time to grieve and feel sad or angry. Talk to
your family about how they are feeling, too. Then you can pull yourself
(and all of your resources and support systems) together to begin doing
the things you need to meet the cancer challenge again.
What's the bottom line? Does recurrence mean
things are hopeless?
There are a lot of different ways of looking at and talking
about this issue, and there are many things that can affect your
outcome. Is there a chance you might not survive your cancer
recurrence? Yes. Does that mean there is no hope? No. When cancer comes
back, you may find that your hopes are very different than the kind you
had when you were first diagnosed.
To be more precise, the type of cancer you have and your
response to treatment will dictate your outcome. Today, a cancer
recurrence may not mean you will not live long. Advances in cancer
treatment and the management of treatment side effects continue to
improve. There is no denying the situation is more serious if the
cancer has come back, but for many patients this simply means that
treatment will be different and perhaps more aggressive than it was at
first.
At the same time, cancers that come back or get worse despite
treatment tend to be harder to treat and control. It is important for
you to talk to your cancer care team. They can give you a good idea of
what you can expect to happen. It may be that your cancer is not likely
to be cured, but there are things that can be done to treat it. You and
your family should be clear about the goal of any treatment you're
having.
It is often very hard to think about starting more treatment
for cancer. You may have feelings of panic and desperation. But there
often are more (or different) treatment options available. If you are
unsure about more treatment, it may help to get a second opinion from a
doctor at a cancer center or university teaching hospital. Make sure
you have covered all your bases and given yourself every chance to get
the most advanced treatment available to fight your illness.
What if my cancer is in many parts of my
body? Should I still think about more treatment?
There is no one answer to this question. It depends on the
type of cancer, the effect it is having on your body, what your health
care team is telling you, and what you and your family are thinking and
feeling about the situation. During cancer treatment (even if the
treatment is not working well), you are under a doctor's care, the
cancer's progress is being checked, and side effects and symptoms are
being watched and treated. For some, getting cancer treatment helps
them feel better and stronger, because they are doing something to
fight the cancer. For others, being in treatment works the opposite way
-- it may make them feel more tired or less free. Only you can decide
how you want to live your life. Of course, you will want to hear how
your family feels about it, too. Their feelings are important since
they are living through the cancer with you. But keep in mind, the
final decision is up to you.
Whether or not you want aggressive cancer treatment, there is
always the option of supportive care. This is also called palliative care,
and you can ask for it at any time. It can be used along with more
aggressive treatment, but is more often used when aggressive treatment
is no longer working. Palliative care is treatment of the symptoms,
such as pain -- it is not expected to cure the disease. It is care that
focuses on making your life the best it can be, even if there is not a
good chance of curing the cancer. This means that symptoms like nausea,
pain, tiredness, or shortness of breath are treated and controlled.
Sometimes medicines are used, but other types of treatment may also be
used. There are many resources available for giving you the latest in
palliative care options. If you need help finding them, call us for
more information.
Along with people getting treatment that is expected to cure
the cancer (curative treatment) and those getting palliative or
supportive care, there are many people who are treated for cancer for
long periods of time. Even though the cancer isn't likely to be cured
by treatment, for many patients, it can be kept under control for
years. Cancer becomes a long-term, chronic illness, much like diabetes
or heart disease. Treatment can be used to shrink the cancer, help
relieve symptoms, and allow you to live longer. Even though it can be
hard to do, many families adjust to this kind of treatment schedule.
How should I explain cancer recurrence to my
children?
Hiding cancer from children is almost impossible. What a child
imagines is often much worse than the truth. Some people may not tell
their children that cancer is back because they want to protect them.
But we often set our children up for more trouble in the future by
"sparing" them the truth.
Children who have not been told about a parent's illness tend
to have a harder time dealing with it when they do find out. A child
doesn't need to know every detail about the cancer and its treatment.
But assuring them that you can be trusted to tell them what is going
on—no matter what—will help them to feel safe even
when there is bad news. A bonus for the parent is that the truth is
always easier to remember because it is the truth. Take the pressure
off yourself and your kids by letting them be part of this experience.
Children are by nature most interested in what is happening
with them—in other words, how your cancer affects their
lives. They need to know enough to manage their own fears and still be
able to function in school, with their peers, and have everything as
normal and secure for them as possible.
When you first talk with your children about your cancer's
return, try to find out what they remember from the last time you
discussed it. You may be surprised by some of their memories or things
they misunderstood. Correct any wrong information and add to what they
were told in the past. Explain that the cancer has now come back and
will need to be treated again with stronger medicines or other
treatments. Make sure that children understand basic cancer terms. Even
though they are older now, don't assume they understand cancer
language. For example, one child believed that because his mother's
hair had grown back, her cancer had gone away forever. This makes sense
as we know that children often think in concrete terms. If Mom looks
healthy, she must be healthy.
Children need to be prepared so they will know exactly how
your treatment will affect their lives. They need to know what the side
effects of treatment will be, what changes in the family routine to
expect, and when they might return to a more normal life again. Still,
it is painful to see your children's lives upset. Even though you know
the cancer is not your fault, you might find that you blame yourself.
In regard to self-blame, perhaps this sums it up best: "You can visit
there, but don't live there!" Spending time feeling guilty is futile
and a waste of the energy you need to fight the cancer. Try to make
your children part of the problem-solving sessions about how to manage
the changes they will go through because of your cancer and treatment.
This will make them feel less helpless, make them feel valued, and help
them become part of the solution.
Weekly family meetings are a good way to manage the anxiety
that can build up. Meetings can help everyone feel that their concerns
are important, and they give others a chance to address these concerns.
As the parent or adult in the group, it is your job to keep everyone
focused in a positive way—toward solving the issues. Try to
also give family members a chance to share their feelings in a caring
and supportive way. In doing so, you get a break from thinking about
yourself and can feel you are effective in another area of your life.
The weekly family meeting is a special time reserved for everyone to
talk about anything that is bothering them. If you are expecting a hard
week, maybe due to treatment side effects or time spent away from your
kids, you can prepare them by talking about what plans you have made to
keep things at home going as normally as possible.
The family schedule of activities may need to be changed to
work around more intensive treatment. You might need to make other
arrangements so that their routines can continue, with other people
filling in, until you are feeling better. Even though you can't do
certain things, you might want to substitute some activities that won't
take quite as much energy. Arrange times to be together to watch TV,
read a book, make up a story, play a board game, or whatever else you
can think of to spend time with your children. Kids would rather you be
present, even if you're a little tired, than not there at all.
You may also want to see our information on Helping Children When a Family
Member has Cancer: Dealing with Treatment. It
contains tips on dealing with children of different ages, as well as
answers to common questions that might help you as you go through
treatment again. If you need more information on recurrence for
yourself, you may want to read When Your Cancer Comes Back:
Cancer Recurrence.
What if my children ask if I am going to
die?
Before talking to your kids, this is something you may want to
talk with your doctor about. Your cancer care team knows your situation
best and based on past experience, may be able to make some predictions
about your outlook for cure or control of the cancer, and possibly the
end of life. Keep in mind that this is still just an educated guess; no
one can ever know for sure how long you will live.
After you talk with your doctor, talk to your children about
this -- even if they don't ask the question directly. Your kids are
thinking about whether you are going to die, whether they ask you or
not. The prospect of death can be frightening for both you and your
children. It takes real courage to move ahead and bring up this subject
and it is a priceless gift to give your kids. This gift is much better
if it is given by you, rather than by an adult who is not as close to
them. Speaking directly about this issue will help not only your child,
but will also help you begin to prepare for whatever the future holds.
Even under the best of circumstances, death is often possible
with cancer recurrence. Here are some suggestions on how you might
answer the question, "Are you going to die?" in a way that is realistic
but that will not make your child too anxious:
- "Some people with cancer get all better and some don't--I
am trying my best to get better."
- "I don't think that is happening right now. If I think that
is something we need to think about in the future, I'll let you know."
- "You know this cancer is serious. It's possible that I
could die, but I'm not dying right now. So let's take every day, and
think of one good thing about the day. That will help us be happy about
the time we have right now."
- "It all depends on how I react to my treatment--let's give
the chemotherapy (or radiation) a chance to work. It worked before, so
hopefully it will work again."
In your answers you are trying to give your child a balanced
response. You want to admit that there is a chance you could die. But
there is also a chance you could live—for a long while or
maybe only a short time. Children tend to focus more on the present. So
they can be content with the here and now. Even if you are pretty sure
that death will be a reality sooner rather than later, your family
needs to live until you actually die. And so do you. There is no way
people can live anything like a normal life if they are always thinking
about death. If death is an unwelcome possibility, it should be faced,
but kept in perspective.
Around the age of 8, children can begin to understand that
death is forever. About age 13, a child is capable of thinking more
abstractly about things that they have not experienced themselves. They
have a new understanding that people are fragile. They may also try to
deny fear and worry to avoid talking about them.
If you reach the point that treatment no longer is working, or
if you decide to go with palliative care (treatment that is not
designed to cure), you may want to read Helping
Children When a Family Member Has Cancer: Dealing With a Parent's
Terminal Illness. It has ideas to help you talk with children
about the limits of cancer treatment and plan ahead for them. You can
also learn more about this stage by reading our information, Nearing the End of Life.
How can children (or anyone) live with this
kind of uncertainty?
It is not easy to live with uncertainty. There is no other
option but to simply put one foot in front of the other, day by day.
Sometimes even having sad and discouraging news is slightly better than
the unknown.
One way to master the unknown is to find something good in
your life every day. Write down one good thing or one thing you are
thankful for every day. Over time, you may find you are beginning to
search each day for the one "good thing" to write in your journal. Try
doing this with your children. Sometimes, you may be so low you can't
think of one good thing to say. But your kids may have 5 small things
that have made their lives fun or interesting that day. Children are
amazing in their resilience. Since they are always learning and
everything seems new to them, their precious insights may help you
appreciate each day even more.
This is not to say that there are not really hard days where
there is just no getting past the lack of good news. Give yourself and
others permission to feel down, then help each other come back up.
Depending on the age of the children, parents might want to
plan ways to distract them from the illness. Ask for help from people
in your family or support network. It may be easier for someone else to
listen to the child's worries and concerns and arrange activities that
will briefly distract her or him from the sad realities of a parent's
serious illness.
While there is nothing good about the possibility of a
parent's death, every family has stories about how even the worst times
had a silver lining. Try to find examples of this in your family's life
and share them with each other.
Research has shown that children with a relative who has a
cancer recurrence learn to be more sensitive to peers with other family
troubles. As parents we want to protect our children from all pain, but
in the process of letting them feel some of life's painful realities,
they often become more mature. They also learn that you trust them to
deal with the hard parts of life, not just the happy ones.
What is a child's greatest worry if a
parent's illness progresses?
Clearly, children worry about what will happen to them if a
parent dies. In a one-parent family, this concern can be even greater.
Depending on the age of the children, the "Who will take care of me?"
question can be the most critical. This question must be addressed
whether the child actually asks it or not, at least for children who
are school age and older. We all fear being abandoned. Children are not
able to survive without someone to take care of them, so this question
is basic and critical. Dealing with this question is probably one of
the most painful things a parent can do. As a parent or caretaker, you
might want to get help from a professional.
Families come in many shapes and sizes. There may be many
people involved in the discussions that take place about these issues.
Extended family members, beloved friends, teachers, or spiritual
leaders can all be invited into the family to help with
decisions—both making them and talking about them.
In an ideal world, all parents will have made arrangements for
their children to be cared for in the event something happens to them.
Even with parents who are not sick, accidents can happen, life can
change in an instant, and children can find themselves in a very
different world. Regardless of how your illness is expected to
progress, you and your partner, or you and your close family members
may want to sit down and discuss the best plan for your child's living
situation. A lawyer can draw up a will or legal document that will
outline your wishes if you die. You should also explain to your
children the decisions you have made and why you made them. Questions
should be encouraged and answered as honestly and directly as possible.
Make clear to your children that you are making the best plan for them,
but that you do not expect to have to put this plan into place right
away. This is a "just in case" plan, a back-up plan.
For example, Linda is an adoptive parent with one son and no
partner. Her son needs to know that she has already talked to her
sister, Sara, about plans for him if something happens. She may say
something like, "As sad as your Aunt Sara would be if I died, she would
be thrilled to have you as part of her family. She loves you very much,
and I know you love her, too. We have talked about it and it's all
settled."
For a 2-parent family, changes need to be discussed because
things will never be the same if one is lost. For example, a mother
whose husband is being treated for cancer might say to her 3 children,
"Your dad's doing very well with treatment right now, and we expect he
will keep doing well. But we have talked about what might happen if
treatment stops working. Your dad has a life insurance policy that
would give us some money to help us live here in the house. But just to
make sure we would be OK, I would probably go back to school and become
a teacher, like I've always wanted. Later on I would probably go to
work, but not right away. Your dad thinks this is a good idea too. What
do you guys think?"
Talking to your children about this is important, but it's
even more crucial if the child has only one parent. The child knows
that you provide all or most of their care, and may not know who would
do it if you weren't around. Again, what the child imagines may be much
worse than reality.
If you do not have relatives or friends who are logical
choices as caregivers, there are social service agencies that can help
designate potential caregivers. While this is a painful issue to think
about when you learn you have cancer, it is something that must be
done. It is one way you can be sure that your children know that they
will always be cared for. If your children are older, tell them that
they may suggest who might become their caregiver. But it is important
to make those arrangements, let your children know about them, and do
the legal paperwork that’s needed.
This is a tough talk to have with your child, and you may have
to rehearse before you can do it without getting very emotional
yourself. When you are ready, give yourself some uninterrupted quiet
time with your child. You can open the subject by saying that you know
that children often worry about who would care for them if a parent
couldn't, or if their parent died. This lets the child know that you
won't be shocked or upset with them if they ask questions. You can see
how the child responds to this statement before you explain your
back-up plans.
You can expect that with any change children will have
questions. They may even have some resistance to the change, as well as
feelings of sadness and loss. It is unrealistic to expect them to "get
behind the plan" right away. But at least you are giving them
information and structure to make them feel safe and secure should the
worst happen. Even though cancer may change everything in the family,
they will still be taken care of. Making a plan and talking to them
about it lets them know how important they are to you. That's a great
message for children to get. So give yourself a pat on the back for
getting this accomplished.
What about the "why" questions?
Both adults and children deal with the question "why?" at
diagnosis, during treatment, and especially if there is recurrence.
This question becomes more intense the more serious the situation is.
Why me?
For some people, looking for an answer to the "why" question
can cause many sleepless nights and incredible soul searching. Others
find that it doesn't really matter why something has happened -- how to
best deal with it is more important. Many people think that if they
knew why something has happened -- and then they can do or stop doing
something -- somehow the situation will change. While this notion is
not usually rational, it helps to understand the way people think. We
all look for reasons for what happens in our lives. It is hard to
accept that cancer can be a random event and that there may be no
answer to why a person develops the disease. There are many things that
can influence the development of cancer -- these can be genetic,
environmental, or related to behavior, like smoking or sun exposure.
Most people never know why they have cancer, so trying to find the
answer to this question only leads to frustration, sadness, or anger.
Was it something I did?
For some people, the answer to the "why" question might relate
to something they did, such as smoking, tanning, or drinking a lot.
These people can have a much harder time living with their choices
because they feel guilty about doing something that could have caused
their cancer. Their job is to forgive themselves. If they can't let go
of the guilt and self-blame, living with the cancer is usually much
harder. Many times it helps to talk to an oncology social worker or
cancer counselor to make peace with these issues.
The bottom line in answering the "why" question is that
knowing the answer to the question will not change what happens next.
Worrying about "why" drains people of energy which is better used in
coping with the illness. Consider getting some counseling if you find
yourself unable to move beyond this question. Children should be told
that although no one knows for sure why some people get cancer, it is
certain that the child did nothing to cause the family member's cancer.
This point should be made often and clearly to your children.
Children are exposed to a lot of information about health and
illness--in school, on television and in talking to their peers. Some
of this information is accurate but much of it is not. Some of it may
be misunderstood by the child telling it or by the listener. Ask your
kids to tell you what they know or what they have heard about cancer
before you talk about it. In most cases, you can honestly say that
doctors do not know why a parent has cancer. You should also make it
clear that cancer is not contagious and there is no risk of anyone else
in the family catching it. In cases where a person's behavior may have
helped cause the cancer (such as smoking and lung cancer) it is best to
admit that, and express sorrow and regret. Kids may express anger, but
this is normal and should be expected. Allow them to vent, get help
managing these feelings if needed, and encourage your kids to learn
from the mistakes you made.
How might my advancing cancer affect my
child's religious faith?
For some families, a strong faith makes all the difference in
getting through life and its challenges. During cancer treatment, faith
is often an ongoing source of comfort and strength. For some, faith is
tested in unexpected ways when a person has cancer--after diagnosis,
during treatment, during recurrence, and after. Children at any age may
also question how God or their higher power could allow their parent to
have cancer, especially if there is a chance that a parent might die.
Your answers reflect who you are
How you address this with your children is a reflection of
your own beliefs. The issue of why bad things happen to good people is
one that many humans struggle with. Do you believe that people get
cancer as some sort of punishment for past mistakes, or is cancer a
random event? Your own answer reflects who you are, your family beliefs
about these things, and your own philosophy of life. At times like
these, a talk with a spiritual counselor or leader might bring comfort
or help you to focus your spiritual direction. Do not hesitate to reach
out for help for yourself and your children. Sometimes your spiritual
advisor can help you explain things better to your child—this
may help you, too.
The word faith implies that trust or belief is required. So
faith is not a proven or scientific theory. This means that faith is
more about asking questions than giving out answers—more
about the process of searching rather than knowing it all. For
instance, if you believe that your higher power is merciful and not
punishing, you may want to share that belief with your family. If you
are not sure exactly how religion fits into your life, it's OK to share
that uncertainty. You can say something like "I'm not really sure how I
feel right now -- some days I'm really angry and not sure what to
believe." By being honest you lay the foundation for more truth and
openness within the family.
Is it all right if I talk about being angry?
You may be feeling quite angry about having cancer back and
feel you have to hide this anger from your kids. But it's better to
talk about your anger at the cancer. Be very sure not to direct your
anger at the children. You will want to encourage them to express their
anger, too. Show them that being angry doesn't mean that you will fall
apart, or that your family will suffer more. Show them that calmly
talking about these feelings can even make you closer as a family.
Explain to your children that you know that some of their angry
feelings are not directed at you personally, even though it may
sometimes seem like that. Tell them that you understand the cancer is
the real culprit and you share their feelings. Make this a bonding
experience and find ways to release the anger together.
Help your children express their feelings
Children, depending on their age and personality, often try to
protect their parents from their true feelings. We all do this to one
degree or another with people we love. Asking your children if they are
angry and assuring them that these are normal feelings may open the
door to a helpful and healing discussion. Often underneath the anger is
a deep sadness which needs to be recognized and shared in order to move
on. While these feelings can be painful to express and to listen to,
getting them out into the open can take away some of their power and
help people to regroup and feel closer.
How do children react to the thought of a
parent's death?
Of course, children react in their own ways to this
complicated and heartbreaking issue. The answer depends on many factors
such as the child's personality, his or her relationship to the sick
parent, the age of the child, his or her maturity, and the child's
developmental needs -- along with how close or distant the death is.
Some children refuse to believe that their parent is seriously ill and
demonstrate this in their behavior. For instance, they may refuse to
accept that their dad can't play ball with them, become whiny and
irritable, and act out their sadness and anger by refusing to go along
with the family rules.
Sometimes children will withdraw and isolate themselves from
others in the family or their friends. They may refuse to listen to an
explanation of what is going on or pretend that nothing is wrong.
Children may regress, meaning that they do things the way they did when
they were younger. For example, they may have trouble leaving the
parent to attend school, have temper tantrums, or change toileting
habits that had been under control. These changes in behavior can be
very upsetting for a parent. And these things happen when parents have
less time and energy than usual to deal with them. Kids often "act out"
because they don't have the words to "talk out" their distress.
Anger is probably the most common reaction to the stress of a
serious illness. Anger is also one of the harder issues to deal with
directly. Many of us have been told, in one way or another, that it's
not OK to be angry. People can spend a lot of energy hiding such
feelings. One of the reasons for this may be that to some people,
expressing anger may mean acting enraged and threatening, which can be
very scary and destructive to those you love. Children and other loved
ones do not usually feel safe when a parent is out of control.
But simply feeling angry doesn't mean that you are less of a
person or that you are not coping well. Anger is a valid response to
the unfairness of cancer and needs to be recognized as such. If you, as
the patient or family member, can claim your right to feel cheated
because of the impact that cancer has had on you and your family, it
will be easier for your children to express these normal feelings, too.
Trying to suppress such feelings takes up energy that could best be
used elsewhere.
Teens may find anger a special problem. Remember that
teenagers are already usually somewhat rebellious and don't like
feeling different. Feeling angry about the illness is another layer to
add to their insecurities and anxieties. If they won't talk to you as
the parents, they may open up to other adults such as teachers, church
leaders, or coaches. There are also some great Web resources and online
support groups that may appeal to this age group (see "Additional resources").
Isn't having a positive attitude important
in fighting the cancer?
In recent years, much attention has been paid to the
importance of having a positive attitude. Some go so far as to suggest
that such an attitude will stop the cancer from growing or prevent
death. Patients are even told that they will never beat the cancer if
they don't stop feeling sad, bad, depressed, or some other so-called
"negative" feeling. This kind of message is destructive to people who
are dealing with cancer and a recurrence. They are fighting for their
lives and then are told they are responsible for causing their own
illness. And to make matters worse, they may feel like they aren't
supposed to grieve or feel sad over the new hardships and major changes
in their lives. Please do not allow others' misguided attempts to
encourage positive thinking to place the burden of your cancer on you.
That is not fair or accurate.
Cancer is not caused by a person's negative attitude nor is it
made worse by a person's thoughts. You might be better able to manage
your cancer when you are able to look at things in a positive light,
but that is not always possible either. It is much healthier to admit
that cancer can cause you and your loved ones to feel sad. Once you can
admit that reality, it is much easier get on with your life, whether
that life is measured in days, months, or years. Some of those days
will be good days; some of those days will be not so great. Most of us
know that this is the natural course of life anyway—with
cancer or without it.
People may tell you about studies which have shown that
patients with a positive attitude live longer. These studies often
offer anecdotal evidence (people's stories) based on too few patients
and questionable research methods. No solid, well-accepted research has
shown that a patient's attitude has anything to do with whether the
person will live or die. There are patients who live longer than they
are expected to, but researchers do not know why. If they did, they
could certainly use that information to try to help many people. So
don't let the "positive attitude" myths stop you from talking about how
you feel with your loved ones or your cancer team. People with positive
attitudes can still die of their cancer. People with negative attitudes
often live a normal lifespan despite their cancer. Everyone gets
through cancer in their own way.
Along those same lines, there may be times when friends or
relatives try to reassure you with comments like "God doesn't give us
anything we can't handle," or "God must have a reason that this has
happened." While people say these things with the very best of
intentions, if you are struggling with spiritual doubts, the thoughts
and feelings invoked by such comments might only add to your stress.
Sometimes people say these things because they just don't know what
else to say. You may feel very annoyed and even angry at their
insensitivity. Sometimes this can be a good topic to talk over with
another cancer patient or your nurse or support group. They will
understand where you are coming from. How do you respond to such
comments? Usually this is a battle you just don't want to fight! Since
these people are trying to help, just a simple "thank you" and changing
the subject may be the best response.
How can I help my child when I have so
little energy?
This is probably the one of the toughest parts about dealing
with recurrent and advanced disease. There may be days when treatment
side effects are harsh and you don't have an ounce of extra energy to
spare. There are days when it's hard enough to figure out how you are
going to take care of yourself, let alone deal with what your children
may need from you.
Don't feel guilty that you can't meet all
your children's needs
The ages of your children will affect how you respond to their
needs. Younger children who need a great deal of attention may seem
harder to manage than those who are more self-sufficient. But all
children have needs that you may not be able to meet. Feeling guilty
about having cancer and how it changes you as a parent is another
burden you don't need in your life. Try to think about this: if someone
else in your family were ill, would you want to be there for them?
Would you try to understand how they feel and do anything you could to
help them? The answers are probably yes. Though serious illness can
bring changes and stress to family relationships, you don't need to
apologize for being sick. Explain that you know how tough it is on
everyone and ask for help--you and your loved ones can get through the
rough times together.
Your unique family situation will play a role in getting
through those times when you have little to give to the family. In a
2-parent family, adults can share roles when one parent is unable to
help out as much as usual. But in these families, the well parent
usually feels more pressure to keep things going and needs to take an
honest look at how they are managing with all the extra tasks. If you
are the patient, you may suspect that your spouse is feeling tired and
even resentful at times. That is to be expected, even though people
usually have a hard time saying it. Any anger you perceive is likely
not directed at you but rather at the situation. There will be times
when everyone has run out of patience. It's best to admit that you are
at the end of your rope and need a break. In a one-parent family, you
may have reach out further to get help. But you will need it, so it's
better to start sooner rather than later. Family members, friends,
neighbors, and even the parents of your children's friends may be
willing and able to help you with your kids' day-to-day routines.
Let the kids help out
It's also a good idea to let children help in any way they
can. Are there small jobs that your children might do for you that will
make them feel they are included in a special way? Can they make you a
cup of tea after school? Bring your medicines to the bedroom for you?
Cook meals? Get the mail and sort it if you're not feeling up to it?
Children enjoy having special jobs and being rewarded with praise. Just
helping you makes them feel special, too.
Be careful though, because sometimes this can go too far.
Often one or more of the children wants to help you all the time. This
can cause other kinds of problems for them, such as feeling that
they've failed when you still feel bad. It may also cause more stress
for them, and deprive them of many chances to be children and enjoy
life. Sometimes you must remind your child that you are thankful for
their offers of help, but that you don’t expect them to take
care of you all the time. Depending on their age, their job will always
include spending some time helping out with the family and household.
But their job also includes going to school, doing homework, playing
games with friends, sports or school activities, and having some fun.
Children should not feel guilty about needing play time. Their lives
may not be carefree any more, but they need time every day when they
can leave those cares behind.
Other family members and friends may help,
too
In families with a large support network, it's nice to have
even more people to share the workload. But the number of people is not
the important thing. Some families just naturally work well together.
Others find it harder and may feel like it would invade the privacy of
other family members. Some family relationships were troubled before
the cancer, and those problems may not be easily forgotten. Your cancer
team may be able to refer you so that you can get help with any ongoing
family problems, or to get help for your children or other loved ones.
Oncology social workers, nurses, or doctors can usually get you started
in the process of finding mental health resources.
Asking others to help can be hard
Asking people for help is probably one of the hardest parts of
having cancer in the family. For the most part, people prefer to be
self-sufficient and take care of their own problems. But cancer is not
something a person can manage alone—you need a team of
players to get through it. Family members often want to help and it
often makes them feel better, too, when you ask for their help.
If this is hard for you to do this yourself, is there someone
in your family who can manage things for you? That person might become
the family organizer and can help you make a list of the things that
need to be done. There may be someone who can easily pick your children
up from an activity at the same time they are picking up their own
children. There may be other people who can help during an emergency or
on an "on-call" basis even if they can't help regularly. Is there a
neighbor who shops for their family every Thursday morning? If so, can
they call Wednesday evening to see if they can pick something up for
you? When people say to you, "Let me know what I can do," try to answer
the question with specific suggestions about what they can do. If they
can't do the first task, move on down the list and ask about another
one. Again, people who offer to help really want to do so. Though it
may be awkward at first, a list of specific tasks can make this easier
and even small efforts can really help you and your family.
How will I know if my children need extra
help?
Parents usually understand the behavior of their children and
how they most often react to stress. We all tend to react the same way
to upsetting events, and parents can usually predict how children in a
family will react differently from each other. When children are upset,
they often react with a more dramatic version of how they behave
normally. Quiet children may become more withdrawn, loud and active
children crank it up a notch, and children with learning problems start
doing worse in school. Some children complain of physical illnesses or
may seem sad or lonely much of the time. Any type of change that
persists for weeks may be a signal that the child needs more attention.
Pay attention to how and what your kids are
doing
It may be useful to watch how your children play with their
friends, what they say to their dolls, or what they draw in school.
Because young children usually cannot talk easily about their feelings,
their behavior will usually tell you what might be going on. We've
talked before about the tendency of young children to regress in their
development during times of stress. For example, a child might have
trouble maintaining his or her toilet training. Although teens probably
won't regress in such dramatic ways, they may argue more or be more
distant as a way of acting out their distress.
Cancer may not be causing all the problems
Remember that all problems are not necessarily related to the
cancer. Sometimes it can feel as if cancer has totally taken over a
family's life. People may need to work very hard to look beyond cancer
as the source of all problems. This is especially tough when the
disease has progressed, because everyone will be more upset than usual.
But look closely at your child's behavior and think about what else
might be going on. Is your child having trouble adjusting to a new
teacher? Are they upset about not being invited to a party? Are they
struggling for more independence? Although cancer in the family can
certainly add a lot of stress, there may be other things going on in
your child's life that could explain their behavior. You may not know
unless you ask.
Try to get your children to tell you what's troubling them, if
they can. A simple "You seem very thoughtful (sad, worried, etc.) these
days, can you tell me what's happening?" may give you new insight into
your child's behavior. Check with the school to see if the behavior is
also noticed there. Maybe a teacher is incorrectly assuming that
because a parent is ill, the child should be treated differently. Often
this just makes the child feel more isolated. Check out all of the
possibilities before you decide what you need to do to help your child
feel better.
Also remember that a child's personality is an important
factor in how they will react to illness in the family. Some children
are easy-going and kind of "roll with the punches" while others "make a
mountain out of a molehill." Different things work for different
children in a family, so think about how you handled each of your
children before cancer was part of your lives. Those same methods will
often work again, even though the problems may be different.
Find out as much as you can about the
problem
It often helps to get as much information as you can about a
problem from all possible resources. That means speaking with your
child's teacher, guidance counselor, pediatrician, or a counselor or
social worker on staff where you are being treated. It's also a good
idea to ask your child what you might do to help them feel better.
Don't forget to remind them that they had nothing to do with your
getting sick or your cancer coming back. As illogical as this idea may
seem to adults, experts know from experience with families dealing with
cancer that children usually believe, at one time or another they had
something to do with a parent's illness. If your child seems distressed
and talking about it together doesn't help, the child may need outside
help. Children can become depressed or anxious, just as adults do,
though they may not show it in the same ways.
Depression in children can look different from depression in
adults. For instance, a common sign of depression in a child is a
change in behavior, like suddenly getting poor grades in school or
losing friends. Most children whose parent has cancer seem able to
cope, but there may be times when it gets to be too much. If a child
seems to be having trouble, it may mean a more serious problem than a
normal, sad response to cancer. Extra help is needed if a child:
- is unable to handle the feelings of sadness
- feels sad all the time
- cannot be comforted
- admits to thinking of suicide
- feels extra irritable
- becomes very angry very quickly
- has changing grades
- withdraws or isolates himself or herself
- acts very different than usual
- has appetite changes
- has low energy
- shows less interest in activities
- has trouble concentrating
- cries a lot
- has trouble sleeping
When a child shows 1 or 2 of these symptoms, it may help to
offer more support. But if the usual ways of handling these problems
are not working, or if the problem goes on for more than a couple of
weeks, the child may need special help. (For more serious problems,
such as if the child is planning to hurt himself or herself, urgent
help is needed.) It may be useful to talk with the child's
pediatrician, school counselor, or with the social worker or counseling
staff at the hospital where the parent is being treated. Since these
experts know how other children have reacted to illness in the family,
they may be able to offer useful ways to look at the problem. They can
evaluate the child and make sure that any needed help is given. They
can also suggest books, videos, and children's support groups that may
help. Rarely, a child may need to see a psychiatrist for medicines or
counseling.
Will the experience of advanced cancer
within the family leave my children with emotional scars?
This is a question that many people struggle with and one for
which there is no simple answer. A child will never forget the stress
and pain of losing a parent from cancer. But there will be happy
memories and many important life lessons learned through the cancer
experience as well. Cancer in a parent or important family member will
certainly have an impact on children, but it should not be assumed that
it will always be harmful. Parents should do their best to be honest
with their children and keep the children's lives as normal as
possible. That's a good start in helping children get through the
changes that are taking place.
There are many factors that influence how a child will grow
and develop into adulthood. These factors include genetics, social
class, culture, personality, education, spiritual orientation, and the
quality of child/parent relationships. Even when the child has all of
those things going for him or her, there is no guarantee that they will
"turn out right." And there are other kids who, in spite of the most
chaotic homes, achieve well beyond what might be expected of them. So
it's hard to make statements about how the experience of chronic
illness will affect any one child.
Most parents do the best they can to deal with a cancer
diagnosis and treatment, and that's really all that can be expected.
But parents are rarely satisfied with their best efforts and might feel
guilty and worried about what the experience of cancer will do to their
child's future. It may help to remember that children tend to bounce
back quickly, and even if you feel you are making mistakes, these
mistakes will not destroy them. If you find yourself in turmoil about
how you or your children are doing, think about getting some help. For
many people, having a parent with advanced or recurrent cancer is
probably the most stressful or serious situation they have ever faced.
It is not reasonable to expect a family to just know how to deal with
all of the problems that come with a serious illness.
Many people don't want to seek help because they think that
means there is something wrong with them. But the more help you ask
for, the more help you get, and the more resources there are for the
rest of your family if you are not around to tend to all the details.
In the end, all you can do is your best. We have given you
some ideas about how to help yourself and your family. None of us
escapes life pains or problems. The best we can hope for is that you
continue to grow and love each other through the experience.
Additional
resources
More information from your American Cancer
Society
We have selected some related information that may also be
helpful to you. These materials may be ordered from our toll-free
number, 1-800-227-2345.
- Helping Children When a Family Member Has Cancer: Dealing
with Diagnosis (also available in Spanish)
Books from your American Cancer Society
The following books are available from the American Cancer
Society. Call us at 1-800-227-2345 to ask about costs or to place your
order.
National organizations and Web sites*
Cancer Really
Sucks
An internet-only resource designed for teenagers by teenagers who have
loved ones facing cancer
Web site: www.cancerreallysucks.org
Cancercare for
Kids
Especially for children with a parent, sibling, or other family member
who has cancer
Toll-free number: 1-800-813-HOPE (4673)
Web site: www.cancercareforkids.org
Kids Konnected
For children and teenagers who have a parent with cancer and for those
who have lost a parent to cancer
Toll-free number: 1-800-899-2866 (If you get voicemail, leave message
to receive a return call within 24 hours.)
Web site: www.kidskonnected.org
Kidscope
Has special online materials, a comic book for children about
chemotherapy and another item about breast cancer in the family
Telephone: 404-892-1437 (voicemail is only checked once per week)
Web site: www.kidscope.org
National Cancer
Institute
To learn more about cancer, or to get special information for teens;
you can call to order a special booklet for teens whose parents have
cancer or read it online at: www.cancer.gov/cancertopics/when-your-parent-has-cancer-guide-for-teens
Toll-free number: 1-800-422-6237
Web site: www.cancer.gov
Other publications*
Books for adults
Can I Still
Kiss You? Answering Your Children's Questions About Cancer
by Neil Russell. Published by HCI, 2001
Helping Your
Children Cope With Your Cancer: A Guide for Parents by
Peter Van Dernoot and Madelyn Case. Published by Hatherleigh Press,
2002
How to Help
Children Through a Parent's Serious Illness by Kathleen
McCue and Ron Bonn. Published by St. Martin's Press, 1996
Life and Loss:
A Guide to Help Grieving Children by Linda Goldman.
Published by Taylor and Francis Group, 2nd Edition, 1999
When a Parent
Has Cancer: A Guide to Caring for Your Children by Wendy
S. Harpham. Published by HarperCollins, Publishers, 2001
When Someone in
Your Family Has Cancer. National Cancer Institute,
1-800-4-CANCER or www.cancer.gov
Books for children
Becky and the
Worry Cup, by Wendy Harpham. Published by HarperCollins,
1997. Best for ages around 5 to 10. (Sold with When a Parent Has Cancer,
by the same author.)
In Mommy's
Garden: A Book to Help Explain Cancer to Young Children by
Neyal J Ammary. Published by Canyon Beach Visual Communications, 2004.
Best for very young children. Also available in Spanish.
Lost and Found:
A Kid's Book for Living Through Loss by Marc Gellman and
Debbie Tilley. Published by HarperCollins, 1999. Best for ages around 9
to 12.
My Mommy Has
Cancer by Carolyn S. Parkinson. Published by Solace
Publishers, 1991. Best for ages around 4 to 7.
Sammy's Mommy
Has Cancer (Books to Help Children) by Sherry Kohlenberg,
Published by Gareth Stevens Publishers, 1994. Best for ages around 4 to
7
The Paper Chain
by Claire Blake, Eliza Blanchard, and Kathy Parkinson. Published by
Health Press, 1998. Best for ages around 4 to 9.
The Year My
Mother Was Bald by Ann Speltz and Kate Sternberg.
Published by American Psychological Association, 2002; Best for ages
around 9 to 12.
Tickles
Tabitha's Cancer - Tankerous Mommy by Amelia Frahm.
Published by Hutchinson,
Nutcracker Publishing Company, 2001. Best for around ages 4 to 7.
Vanishing
Cookies: Doing OK When a Parent Has Cancer by Michelle B.
Goodman, Published by Michelle B. Goodman, 1991. Best for ages around 9
to 12.
Videos for children and adults
We Can Cope:
Helping Parents Help Children When a Parent Has Cancer.
DVD has sections for teens, younger children, and parents, as well as a
guidebook on how to use it. Check your cancer treatment center library
or call Inflexxion at 1-800-848-3895, extension 276 (try extension 201
if no response from 276) to find out how to buy it. (Cost is $99.95 so
you may want to try to borrow it or buy a used copy.)
Kids Tell Kids
WhatIit's Like When Their Mother or Father has Cancer.
Children talk about coping with their parents' cancer; best watched as
a family, to help kids and parents talk about cancer's effects in their
lives. Check your cancer center treatment library or buy DVD from
www.cancervive.org (cost: $40.00 new)
*Inclusion on
this list does not imply endorsement by the American Cancer Society.
No matter who you are, we can help. Contact us anytime, day or
night, for information and support. Call us at 1-800-ACS-2345 (1-800-227-2345) or
visit cancer.org.
References
Christ GH, Christ AE. Current approaches to helping children
cope with a parent's terminal illness.
CA Cancer J Clin.
2006 Jul-Aug;56(4):197-212. Full text available at:
http://caonline.amcancersoc.org/cgi/content/full/56/4/197
Harpham WS. When
a Parent Has Cancer: A guide to caring for
your children. New York: HarperCollins 2004.
National Cancer Institute. Pediatric supportive care
(PDQ®). Accessed at
www.cancer.gov/cancertopics/pdq/supportivecare/pediatric/HealthProfessional
on April 2, 2009.
National Cancer Institute: When Someone In Your Family Has
Cancer. Accessed at:
www.cancer.gov/cancertopics/when-someone-in-your-family/page1 on April
2, 2009.
Welch AS, Wadsworth ME, Compas BE. Adjustment of children and
adolescents to parental cancer. Parents' and children's perspectives.
Cancer.
1996 Apr 1;77(7):1409-18.
Last Medical Review: 05/11/2009
Last Revised: 05/11/2009
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