Pine Street Foundation

Becoming Your Own Advocate

Talking To Your Children About Your Cancer Diagnosis & Treatment

BY MICHAEL HAAS, MA, MFT

You have just received a diagnosis of cancer. You probably tell your husband or wife and your closest friend, but when do you tell your children? And what do you tell them? You are feeling stunned and shaken...how can you possibly help them deal with what is clearly going to be a life-changing event? Explaining cancer to a child is difficult and requires thoughtfulness, compassion, and some understanding of how children of different ages deal with trauma.

LIFE IS FILLED WITH DIFFICULTIES, SO WHEN DOES A DIFFICULTY BECOME A TRAUMA?
Trauma occurs when we experience situations that are so overwhelming that our usual coping mechanisms fail to protect us. Although many situations can create fear, the main ingredient of trauma is a sense not only of physical peril but also of helplessness.

Psychologically, trauma involves the sudden loss of "denial" as a defensive option. We live in a world with many dangers; for the most part, we put them out of our minds and live with a series of probabilities that we can tolerate. For instance, we know we have to have fire insurance, but we tend not to worry about our house burning down day to day. The same goes for earthquakes. We take some reasonable precautions, of course. But if people went around concerned about earthquakes all the time, no one would be living in the San Francisco Bay Area. We may worry about getting into a car accident, but we couldn’t function if we stayed constantly aware of all the existing potential for crashes. In essence, we humans seem to be programmed to tolerate the possibility of low probability events. However, when one does occur, our typical coping strategies prove inadequate, our denial is suddenly stripped away, and we usually need a period of time to gradually rebuild our defenses. Whether or not an experience is a lasting trauma depends on its intensity and how it is handled.

Your task as a parent is to help regulate your children's emotional life and this does not change when you are diagnosed with cancer. You may fear that discussing cancer will somehow jeopardize their emotional equilibrium, but avoiding this discussion carries greater risks.

HOW IS CANCER A UNIQUE KIND OF TRAUMA?
A diagnosis of cancer clearly fits the definition of trauma in that it includes a sudden life-threatening event over which one feels little control. In this regard, it is also a potential trauma for those who are close to you, particularly your children.

Cancer is unique in that although the diagnosis happens suddenly, often it occurs when one does not particularly feel in ill health. Frequently, in fact, the cure seems worse than the illness. One's sense of danger is, at first, comprised more of what one knows or has heard about cancer than from actually being in immediate danger. Nonetheless, normal denial about death is suddenly torn away and one feels instantly scared and overwhelmed by all the decisions that have to be made, all the unknown perils to be faced, and the uncertainty of the treatment process.

Awareness of death is sometimes referred to as an "existential" crisis because it involves a fact of life that sooner or later everyone must face. But the unique existential fact about cancer is that it produces the ongoing awareness of death without any observable threat or certainty. One is left coping with chronic anxiety and fear, often over a great length of time. This perception of danger, combined with uncertainty, is one of the aspects of cancer that creates the most difficulty for parents when trying to talk to their children about the diagnosis. The danger is largely unseen and inexplicable, particularly to small children. Children may fear loss of a parent, but what they experience day to day may be more the need to adjust to a parent whose family role and physical appearance is constantly changing according to the effects of treatment. This is not necessarily traumatic, but it is surely a major source of anxiety and unhappiness.

A major purpose of talking should be to air feelings of frustration with day to day disappointments resulting from a parent being ill and to separate these from the "existential" fears about death and abandonment.

WHAT DOES IT MEAN TO "ACCEPT" OR "WORK THROUGH" SUCH A DIAGNOSIS?
There is a lot of debate among professionals about the most effective treatment of trauma. Some traumas are harder than others to overcome, such as rape, war, and sexual abuse, which often take years to overcome, if ever. Whatever the severity of trauma, what experts can agree on is that there are a number of stages that need to be passed through and that the process involves communication in a safe, loving environment. A mental restructuring needs to take place, one that allows a person to assimilate the experience without resorting to defensive maneuvers that can have lasting negative effects.

One key factor in certain kinds of trauma can be a sense of betrayal by somebody one trusted. Physical or sexual abuse both involve this combination of betrayal and helplessness. Our sense of trust in the world is broken because people we have relied on to keep us safe have, in fact, endangered us. A diagnosis of cancer is peculiar in this regard for adults. We may feel betrayed by our bodies, by ourselves, by God, but the "enemy" is less defined and less certain. It is therefore difficult to "blame" someone or something in particular. Although much is known about contributing factors to cancer in a population of people, at the individual level, the specific cause is usually unclear. This lack of identifiable "cause" is something that children under the age of twelve have a difficult time understanding and accepting.

When we experience a trauma, we tend to follow certain predictable strategies to "master" it. "Fight" or "flight" are genetically programmed options; faced with a sudden overwhelming danger, flight is a typical first choice. However, if flight remains the dominant response, certain unhealthy behaviors can become habitual. Some of these behaviors psychologists call "acting out." They can include drinking in excess, using illegal drugs, dissociation (emotionally and physically "not being there"), and compulsive actions of various kinds. In children we often see, in addition, difficulties in school, angry or violent behavior, promiscuity, and various kinds of withdrawal from usual family life. Anger and resentment targeting the ill parent specifically is not uncommon.

Other behaviors that have been called "acting in" may be harder to identify. These tend to involve an outward appearance of looking fine, but a secret depression is hidden below the sur- face. For example, children can seem ok, but harbor lots of worries they are not sharing. These sorts of behaviors or "symptoms" are usually signs of failure to "master" the difficult experience. When these kinds of symptoms are stimulated by a parental diagnosis of cancer, the best way to help will depend on the age of the child.

Working through involves developing the skills to prevent or un-do "acting out" or "acting in." Both are unhealthy forms of coping with trauma.

DO CHILDREN "WORK THINGS THROUGH" DIFFERENTLY FROM ADULTS?
It can be said that adults and children are very alike emotionally but very different cognitively. It is this difference in children's ability to think "logically" that needs to be taken into account when helping children cope with a parent's cancer.

Children’s normal development follows a path starting from strong egocentrism and gradually leading to increased objectivity. Mentally, as they grow older, children increase their ability to reason and are less and less fooled by their immediate perceptions. Furthermore, as they age, children become increasingly able to see things from somebody else’s perspective.

One important thing to remember is that since cancer treatment can extend over a considerable period of time, facts and feelings need to be discussed again and again as your child matures. For two to seven year olds, imaginary play may be an important arena for working out fears and mastering change. As a child grows older, more direct discussion will predominate. (See "What Is Imaginary Play?" at the end of the article.)

WHY UNDERSTANDING COGNITIVE STAGES IS IMPORTANT: "WHAT MAKES A CAR GO?"
This may seem like a silly analogy to use but it will serve to illustrate this key point: a child will only understand an answer according to his age-related cognitive ability. A two year old probably won’t ask why a car works partly because he may not have the language to ask it and partly because he is not yet concerned with or interested in this sort of issue. He is wrapped up in learning to walk and talk and making sure you as a parent are always available when he wants you. The two year old is extremely egocentric and has no ability to comprehend abstract concepts. What he or she will understand about cancer is that you are less available. Also, this age child probably will "pick up" on changes in your emotional state. What children at this stage need is reassurance that they will be taken care of rather than explanations about a disease they can’t see or understand.

Between the ages of two and seven years, children are busy mastering symbols in the form of language and are very curious about the world around them. "What makes a car go?" is a question that could be answered simply by replying, "The engine makes a car go." A child of this age is generally satisfied with this sort of response. Any discussion of what an engine actually is would quickly lose meaning and involve words he or she has no way of understanding. Explanations about cancer should be kept simple and reassurance is still of key importance. It is always best to ask a child if he knows what a particular word means before launching into an overly difficult explanation. After all, how could a five year old know about hematocrit, lymphoma, or metastasis? Another issue with this group, and even those a little older, involves causality. Everything "must" have a cause. Because in this age range children remain particularly egocentric, some may even believe that they are the cause of their parent's cancer due to something "bad" they said or did. Or they might wonder, with a magical thinking sort of illogic, "If you never had gone to the doctor, would you have gotten sick?" Another fear that might arise is, "Can I catch cancer from you?" This becomes especially perplexing for a child who, for example, is trying to make sense of your avoiding getting too close if he or she is sick. The real reason may well be that your immune system is compromised during a particular phase of treatment.

Between the ages of seven and eleven years, children are in the world of school. They are learning to read and write and manipulate mathematical symbols. "What makes the car go?" might involve a discussion of how the engine burns gasoline and the fire makes the car go. If a child shows interest, you might show him a simple model of an engine. But a discussion of how gas expands when heated and how pistons push the crankshaft will be lost until the next phase of development when children gain the ability to manipulate abstract ideas. Up until around age eleven, children's understanding remains mostly tied to what they can see. Explanations like, "Cancer is a disease that can be treated by doctors and we are doing everything we can to make sure mommy or daddy gets better," is something these children can understand. As your child gets closer to twelve, more detailed explanations about "infection" and "chemotherapy" can be included. What children under twelve will need is reassurance about changes they can see, like a parent going bald or being too tired to take them to the park.

Once a child enters the age of "formal reasoning," sometime in the early teens, he or she is more and more capable of comprehending complex scientific explanations about the world. A child of this age might get very engaged with how an engine actually works. He or she may also be quite interested in cancer, cancer research, and specific details of your treatment.

In general, the cognitive age of your child should determine the level and style of explanation you offer. Always check to see if what you have explained is understood. Assume nothing and pay particular attention to using difficult undefined scientific terms, which can be tricky. For example, the word "cell" might seem everyday to you, but it actually requires the ability to think about something outside daily perception. Also, a child might say he understands what "cell" means, but may be, in fact, concocting a strange explanation involving either jail cells or cell phones.

WHEN SHOULD I LET MY CHILDREN KNOW ABOUT MY DIAGNOSIS?
First and foremost, children need you to help regulate their emotional lives. Because it is usually impossible to keep such a diagnosis secret – due to easily observable changes in your appearance and normal routines as well as the emotional "tone" in the home environment – you need to speak with them about the diagnosis as soon as you feel strong enough to deal with their reactions. This will require considerable talking with the people closest to you. You will find that talking calms you down, helps you sort things out, and gives you the emotional equilibrium needed to discuss your situation with your children. This is normal and should be seen as similar to what your children will require no matter what their age: a period of time to assimilate the news and accommodate to a new and scary situation. The important point is that they will not be traumatized if you help them communicate. Although they will be sad, frightened, and angry, they won't have to resort to indirect expression or "acting out" if they can reveal their emotions without feeling you are threatened by a wide range of reactions. This is a very difficult task since your own emotions will be in constant flux.

It is important to remember that discussion of your treatment is not a one time event. Rather, it needs repeating over and over again. Not necessarily constantly, as this can be very exhausting and demoralizing, but often. There will be many ups and downs during treatment and children will observe many changes in you and in your family life. Adjustment to new realities will require frequent discussion of fears and frustrations as well as hopes and victories.

BUT WHAT ABOUT FEAR OF DEATH AND ABANDONMENT?
Children only gradually acquire a sense that death is permanent, a place from which one cannot return. Death is a possible outcome of cancer, so when should it be talked about? Since maintaining hope and positive energy are essential parts of treatment, and since the outcome often remains uncertain for a lengthy period, fears of a parent dying need to be addressed without causing unnecessary worry or panic. This means that unless you are certain you are dying within a specific amount of time, it is usually a good idea to emphasize all that the doctors are doing to help you get better, and that, while nothing is certain, you have a good chance of being around for a long time. This kind of response does not avoid the possibility of a bad outcome, but does not dwell on it.

If you finally decide that treatment is going to be unsuccessful, then a process of saying goodbye becomes essential. An ad- equate discussion of this would require another complete article since it is a difficult and painful topic and there are many ways to approach it appropriately. I will only make several comments here: Many resources are available and professional help may prove very useful. You cannot protect your children from this kind of loss, but you can arrange ways they can remember you and feel that you always will be with them in spirit.

A FEW WORDS OF ENCOURAGEMENT
Lasting trauma is minimized by communicating about difficult feelings and by allowing children to gradually work through their fears about cancer over a period of time. This involves not burdening a child with inappropriate explanations, being willing to revisit fears and worries as changes in family life inevitably occur, and accepting whatever reactions they express. Finally, speaking to your children about your diagnosis requires you to be emotionally centered as much as possible so that you can help them not to feel overwhelmed. In this regard, an adult support system is essential as drawing strength and wisdom from your circle of friends and empathic professionals will enhance your state of mind. Successfully carrying out this prescription will not be easy – nothing in parenting is – but with perseverance and understanding, you can and will "get it right."

Michael Haas is a Licensed Marriage & Family Therapist who has been working in the San Francisco Bay Area with children, their parents, couples, adolescents, and families for nearly twenty years. He can be reached at michaelhaas@sbcglobal.net or (510) 526-2118.

 

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WHAT IS IMAGINARY PLAY?
Imaginary play is what young children do both to amuse themselves and to master everyday aspects of life and experiences they find troubling. Between the ages of approximately two and seven, children begin to invent games with increasingly more elaborate imaginary components; what is "pretend" and what is actually "believed" by the child is often perplexing to adult onlookers. Most children, for example, have some sort of doll, stuffed animal, or blanket that they quite early on endow with certain important powers. They then progress to using various toys and objects to represent more and more elaborate situations that exist in their daily lives. If someone is sick or if there is violence in the home, often you will see a child enact a kind of script involving these themes.

When a child plays out the same situation over and over again, you know that he or she is attempting to "master" something and is trying to find a "solution." An example of this might be a five year old who plays with a stuffed animal and announces that it is "losing its hair." No reference will be made to the parent who has lost hair due to chemotherapy and the child will attempt to take care of the suffering animal in various ways.

"Displacement" is the most important aspect of imaginary play to understand. That is, the child does not label the situation, especially the characters as specific real people in his or her life. This allows the child to express various emotions that might not be acceptable to the actual person (often a parent) who is central to the situation being enacted. In imaginary play, a child finds safety in the distance created by displacing real events into a drama that he or she doesn't have to acknowledge as representing his or her actual ideas and feelings. This is "pretend," but it is pretending with a purpose. It is usually best not to question a child too closely about the action, but just observe and stay focused on the "imaginary" drama rather than relating it too directly to reality.

Children "work through" difficult material remarkably well by means of this kind of play. As a parent, you can sometimes suggest possibilities to the child as a way of finding "solutions," or discuss the difficulty the animal is in; remember that it is most helpful to stay in the metaphoric frame that the child has set up and not to refer directly to the life situation.

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HOW DO I EXPLAIN HAIR LOSS?
Plenty of warning beforehand combined with ongoing monitoring of reactions are keys to success with this. With very young children, warnings may not be understood, but as children get older they will take in and remember more. You can discuss how you will be wearing scarves and can even ask your child to help you pick some out. Another good idea is to lose your hair gradually. By this I mean, first cut your hair short, then get a buzz cut. Try out a wig and show your child how it looks. This will help a child get used to the idea. Also, reassurance that your hair will grow back is important, even though it may not be believed by younger children.

The most difficulty will probably occur around reactions that your child might keep secret. For example, there may be "shame" or "embarrassment" about having a parent who is bald. Children do not like to be different from their peers, so having a bald parent will force them to be noticed in ways they don't want to be noticed. This may seem egocentric, but it would be typical of young children and even adolescents. You might not find out about this response right away and could easily feel "hurt" by it. By accepting it – or any response – as normal, you can help your child adjust to the change.

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WHAT IF YOU HAVE CHILDREN OF DIFFERENT AGES?
Having children in different developmental stages may present problems in terms of talking about your cancer treatment. However, the situation is not radically different from other topics that require caution and attention to age-appropriateness. Sex education is a good example of a topic that creates similar difficulties, so you may already have experience with this rocky territory. Your teenager will need information that your six year old shouldn't have yet, so how do you handle this? Partly it depends on your comfort level and personal style, but generally you would talk to your teenager in private about things to which you don’t want your younger child exposed. If the teenager becomes provocative in front of his or her sibling, then you probably would, again, speak to him or her in private. The main thing to avoid would be over-reacting to a provocation, which would both emphasize the material you are trying to de-emphasize and create an incentive to repeat the inappropriate behavior.

Teenager's worries may, at times, be more difficult to address than a younger child’s. This is because adolescents typically hide themselves more, requiring more direct discussion to pin-point their concerns. Often teenagers act out in ways that can be hurtful to their parents. In fact, with teenagers, the most helpful thing you can do is, through discussion, encourage them to name what they are feeling. This requires persistence. Also, although boys and girls often differ in their ability and willingness to put their feelings into words, using language to master feelings is the key to avoiding harmful acting out. Distinguishing, for example, between "sad," "scared," "angry," or "confused," can be surprisingly helpful.

The main thing to keep in mind is that, under emotional stress, children of any age tend to "regress," which means they revert to younger forms of behavior. Expect your children to feel less independent and need more reassurance than normal. This can take the form of dependence or clinging, sadness, anxiety, listlessness, loss of focus, or anger. The chief difficulty for the parents will be that just at the moment you need them to act more independently and "grown-up," they will demand more attention. The normal family routine has been upset in a frightening way and this inevitably causes children to "act out." You should see this as a cry for help, not as "being bad."

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SHOULD I TELL MY CHILD'S TEACHER?
This depends on how old your child is and how widely you want it known that you have cancer. The benefit of telling a young child’s teacher is that he or she can then correctly interpret observed changes in behavior and also report these to you. You otherwise might be unaware of them and miss early opportunities to stay on top of difficulties. A sensitive teacher can also help a child with activities that can assist him or her to deal with anxieties.

A teenager should be asked what he or she would prefer. The surest way to offend teenagers is to do something without consulting them first about what they want. But don't take a teenager’s first reaction to be definitive, which may take the form of a simple "No way!" or an "I don’t care!" shrug. Finding out what is really bothering him or her is important and can lead to discussing more fully what the pros and cons of informing the teacher might be.

 

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