For Parents
How to explain treatment
As you work with your doctors to choose a treatment plan, you will face a number of challenges. You may be stressed—or even overwhelmed—by the prospect of treatment and by the need to raise your children, manage your household, and the rest of your life, all at the same time.
When you consider discussing your treatment plan with your children, you can use many of the same principles that guided you when you decided how you would share the news of your diagnosis.
Topics discussed in this section
- Try to identify your reactions to your diagnosis before discussing your treatment with your family.
- Think about how your children might benefit from knowing about your treatment plan.
- Try to use words that your children can understand.
- Consider changing what you say to fit your children's different ages and capabilities.
- Whenever possible, tell your children how your treatment will affect them as well as you.
- In addition to being concerned about you, recognize that your children may also worry about how they will be affected by your treatment.
- Encourage your children to come to you or your partner with questions, and then try to answer them directly, clearly, and honestly.
First, try to identify your reactions to your diagnosis
As you consider various treatment options, you may feel as though you are on an emotional, never-ending roller coaster ride. If you feel worried and stressed, take time with your partner, a member of your health care team, or a friend to reflect on your reactions to your diagnosis and to your treatment options. Talking through your thoughts and feelings may help you understand why you are anxious or feeling out of control. In turn, this discussion may help you determine the timing for when to share your treatment plan and its expected impact on you with your children. You also may be more able to focus on their concerns and questions if and when you talk together.
If you have younger kids, you might consider sharing the specifics of treatment only after you've made a final decision among all your options. You might tell them, for example, that you and your doctors are discussing different kinds of medicine to try to get rid of the cancer and to keep it from coming back. Reassure them that you'll tell them more once you've made a choice.
Consider the benefits of sharing this information
Children often make up stories to explain situations they don't understand
These explanations, while frequently quite creative, can also be very misleading and incorrect. Children pay close attention to their parents' moods and appearances, even when they seem totally unaware. When they notice your hair loss or decreased appetite, but don't understand the underlying reasons, they may conclude that you are far sicker than you really are, or that something else is going on that you don't want to tell them.
Children often respond better to challenging situations when they have some advance warning and a chance to ask questions
Even if you did not share any information when you were first diagnosed, seriously consider talking with your kids now that you have a treatment plan and are aware of its potential impact on your health and physical appearance, as well as the family's usual routines. You might also mention that you don't know exactly how you will feel during treatment, and that you may react to your treatment in different ways at different times. As always, let your children know that you will keep them updated on how you are doing, and give them frequent opportunities to ask questions and express their worries.
Children appreciate feeling included and trusted
You may assume that your kids won't be able to understand anything you say about your treatment, or don't even remember that you are sick. If this describes you and your family, you may conclude that you have nothing to lose by keeping silent about your treatment.
Potentially, however, you have a lot to gain by sharing this information. Although it is a challenge to begin treatment, many patients and their families feel some sense of relief once there is plan in place and treatment begins. If your children already know about your diagnosis, it is likely that they will be relieved to hear that you are taking steps to get better. Your relationship with them might also be strengthened by your willingness to confide in and trust them with this information.
If and when you talk, explain your treatments in words that your kids can understand
As in all situations, try to talk to your children using language they can understand. The following information may be helpful in guiding your discussions:
Talking with preschoolers
Kids in this age group tend to think in concrete terms, so whenever possible, explain your treatment plan using very simple words. The attention span of preschoolers is short, so try to keep conversations brief. For example, you might describe chemotherapy as a "good medicine" that will fight bad cells or "make mom's sickness go away."
Because preschoolers are very aware of their physical surroundings, help them prepare for any possible changes in your appearance or in the set-up of the household. For example, explain that grandma will be coming for a long visit to help out, or that your medicine gets rid of bad cells and also makes your hair fall out.
Preschoolers have a different sense of time than grown-ups, and are much more "creatures of the moment" than are adults or older children. So while you may decide to give them information well in advance of a change in your appearance, treatment, or routine, be prepared to repeat the information much closer to the time it will actually occur.
Games and pretend play are important ways that kids of this age process information. Drawing pictures with them, making a stuffed animal hospital together, or encouraging them to try on your wig are examples of activities that may help your young children to absorb this news. Books on cancer geared for this age group can also be concrete, helpful guides.
Talking with school-age children
At this age, children are learning about how the human body works, and may be able to handle more details about your treatment.
They still do better with simple, clear, brief discussions, but school-aged children can usually understand more complicated explanations than can younger boys and girls.
Children of this age need to hear that you are getting this treatment to help you fight the cancer. But they also will be concerned with concrete, specific details about how it will affect you and them. If possible, be matter-of-fact about side effects, such as hair loss or low energy.
!Your children's experience with medicine may be quite different from what they see as you undergo chemotherapy or radiation. Kids usually take medicine for brief periods until their symptoms go away. You may want to explain that your taking medicine over many months (or having treatments for many weeks) does not mean that you still have cancer—the medicine or other treatment also helps to keep the cancer from coming back.
Be specific about when and why you need your children's cooperation. You might say that while germs don't cause cancer, the treatments you get may make it easier for you to catch a cold or get an infection. That is why you might ask them to wash their hands more often than usual. Explain that there might be times when you may not be able to kiss them, but only for a while until you get stronger. School-age children can develop a basic understanding of the potential danger of low blood counts, and may be more supportive when you let them know that your counts are low.
After hearing your updates, your kids may simply go off to school or play, and may ask questions or bring up their concerns at some later time. Try to remember this, and follow up on your conversations several hours or days later by asking, for example, "Do you remember what we talked about? Do you have any more questions about it?"
Your children may also react to these conversations through their behavior rather than (or in addition to) words. Be on the alert for any signs that they are pulling back from others, are unusually clingy, or are more likely to start fights with siblings or friends. To evaluate your kids' reactions, refer back to the link "Stress warning signs in children" for more detail.
As children get older, they usually develop a better sense of time. Perhaps you can hang up a calendar, and use it to show how long your treatment will last. Refer to familiar milestones, such as, "Just before July 4, I'll be all done."
Talking with teens
At this age, your children are trying to become "grown ups." Respect this by asking what they want and need to know, and then providing straightforward, honest answers. As in other situations, try to take your direction from your teens, giving as much or as little information as they seem to want. Don't expect to cover everything in one conversation, and come back to important information as many times as necessary.
!Brief updates on your treatment and how you are doing are also helpful. Some kids with cancer in the family say they don't need to know everything, but do want to know what is going on and not be left out. Others say they want all the details or they will worry about what is being kept from them.
Teen-agers may also want more direct involvement with your treatment. They might want to meet your doctor or go with you to one of your chemotherapy or radiation sessions. If you are comfortable with these requests, honor them as much as possible.
Although teens are more able to understand abstract and complicated ideas, they still need specific concrete details of how treatment will affect both them and you. As with school-aged children, use a calendar when you give information. For example, you might say, "Surgery will be next Tuesday. Then I'll be recovering for the next three weeks," or "Chemotherapy is every Thursday for the next six weeks, until spring vacation starts."
Because adolescents often rely on the Internet or their peers for information, recognize that you may not be their primary source of knowledge. If your teen-age son or daughter seeks information on the Internet, you might want to caution them that medicine changes rapidly, and that what they read on Web sites might not be relevant to you and your illness. Encourage your children to share what they find with you. Try to keep the door open to conversation about your diagnosis and treatment, and let them know that you would appreciate it if they would let you know when they are confused or upset by something they read or hear from others.
Some of the books and videos included in the "Resources for families" section offer other suggestions on ways to use language geared to your children's ages. You might also refer to the links called "What children want to know" and "Medical terms made easy."
Try to explain how your treatment will affect your children
Even if your kids seem unconcerned about your diagnosis and treatment, remember that they will have many reactions that remain invisible to you—and perhaps even to them. When a parent is diagnosed with cancer, it is the rare child who never wonders, "What if my mom (or dad) dies?" Children can tend to push away these worries by "forgetting" about the illness, acting out (for example, misbehaving and drawing attention to themselves about other issues), or keeping silent to protect their parents from what they believe would be the burden of their anxiety.
Directly acknowledge this possibility. If you need to have surgery, for instance, begin by explaining what will happen in a clear, brief and general way. ("The surgery will take the cancer out of my breast.") Then ask if they have any questions and respond as honestly as possible. Don't be afraid to say you don't have all the answers. It is often enough to reassure them that their anxieties are normal, and that you understand. You might even say that you are a bit nervous as well, because this situation is new to you, too.
!As you can, identify the specific ways in which your kids will be affected. For example, you might let them know if you won't be able to drive them to school for a while. If you are starting chemotherapy or radiation, tell your sons and daughters that sometimes you may be so tired that you won't be able to help them with homework or read to them at bedtime. Whenever possible, talk with your children about who will help out when you are not available. Ask them for their ideas and preferences, and act on these when you can.
Remember to discuss how your treatment will affect you
As you can, adapt your language to the age of your child, but try to let your sons and daughters know how you might react to treatment. For example, you might tell a younger child that, "Mommy's medicine will make her feel very tired, so she will take lots of naps today and tomorrow." You might say to an older child or a teen that you will be sleeping a lot for two or three days after each chemotherapy appointment because you'll be nauseated and not feeling well from the treatment.
Be sure to mention, however, that your reactions to your medicine may change from treatment to treatment, sometimes in unpredictable ways. Let your children know that you will keep them informed about how you are tolerating your medicine as time goes on.
After you start your treatment, your kids may come up with new concerns. They may worry that you are getting sicker or that you will die, especially as your appearance or behavior changes. Address these concerns as directly as possible, and refer to the link "Questions parents often ask" for examples of how you might respond.
Ask your children to come to you with questions
Your children probably will have questions as your treatment progresses. Be aware that they may pick up information from other sources such as television and radio news, the Internet, and stories of friends or family. Some of this information may be accurate and may apply to your situation; some may not. Point out that while you want your kids to get information and support from many sources, you would like them to come to you with their questions. And when they do, try as much as possible to be available and open.
