How should I talk about cancer recurrence with my children and help them cope with it?
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 haven’t been told about a parent’s illness tend to have a harder time dealing with it when they do find out. The child may lose trust in the parent. Keep in mind that 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 feel safe even when there’s bad news. Take the pressure off yourself and your kids by letting them be part of this experience.
Children are by nature most interested in what’s happening to them – in other words, how your cancer affects them. 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.
Try to find out what they remember from the last time you had cancer. 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.
Make sure that children understand basic cancer terms. Even though they’re older now, don’t assume they understand cancer language. For example, one child believed that because his mother had hair, there was no way she could have cancer. 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’ll know exactly how your treatment will affect their lives. They need to know what the side effects of treatment could be, what changes in the family routine to expect, and when they might return to a more normal life again. Still, it’s painful to see your children’s lives upset. Even though you know the cancer isn’t 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 cancer.
Try to make your children part of the problem-solving process about how to manage the changes they’ll go through because of your cancer and treatment. This will make them feel less helpless, make them feel valued, and help them be part of the solution to any problems that come up.
Weekly family meetings are a good way to manage built-up anxiety 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’s your job to keep everyone focused in a positive way – that is, focused on solving issues that are within your control.
Try to 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 you can feel effective in another area of your life. The weekly family meeting is a special time for everyone to talk about anything that’s bothering them. If you’re expecting a hard week, maybe from treatment side effects or time spent away from your kids, you can prepare them ahead of time. Talk about what plans you’ve made to keep things at home going as normally as possible and get their ideas about that.
The family activity schedule may need to be changed to work around more intensive treatment. You might need to make other arrangements for the kids 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 be able 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 there even if you’re a little tired, than not there at all.
What if my children ask me if I am going to die?
Before talking to your kids about your recurrence, the likely outcome is something you may want to talk with your doctor about. Your cancer care team knows your situation best. Based on their experience with you, they 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’re 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’s a priceless gift to give your kids. It may be ideal for you to be the one to speak to your children about your illness, but you may find you need a supportive psychosocial nurse, trusted family friend, minister, or your spouse to have this talk. Who delivers the message is not as important as how the message is delivered and the content of the message. Read below for ideas of what to say. Speaking directly about this issue will help not only your child, but will also help you begin to prepare for whatever the future holds.
Here are some suggestions on how you might answer the question, “Are you going to die?” in a way that’s realistic but won’t make most children 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’s happening right now. If I think that it’s 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 respond to my treatment. Let’s give the chemo (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’s 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’re 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’s no way people can live anything like a normal life if they’re always thinking about death. When 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 they’re afraid and worried so they can avoid talking about these feelings.
If you reach the point that treatment no longer is working, or if you decide to go with only palliative care (treatment that’s not intended 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 death and dying in Nearing the End of Life.
How can children (or anyone) live with this kind of uncertainty?
It’s not easy to live with uncertainty. The Alcoholics Anonymous axiom, “I can stand anything for 24 hours that I couldn’t for a lifetime” applies here. So, live one day at a time, but also take some time to plan for the future. (This is especially important if death is likely.) One way to master living with the unknown is to find something good in your life every day. Write down at least 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 that one good thing to write in your journal. Try doing this with your children. Sometimes, you may feel 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 amazingly resilient. 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 aren’t going to be really hard days where there’s just no getting past the lack of good news. Give yourself and others permission to feel down sometimes, but then help each other get 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.
There’s nothing good about the possibility of a parent’s death, but every family has stories about how even the worst times had a silver lining. Look for examples 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.
- How can I help anyone else when I’m so upset about the cancer coming back?
- How should I talk about cancer recurrence with my children and help them cope with it?
- What is a child’s greatest worry if a parent’s illness progresses?
- What about the “why” questions?
- How might my advancing cancer affect my child’s spirituality or religious faith?
- How do children react to the thought of a parent’s death?
- Isn’t having a positive attitude important in fighting the cancer?
- How can I help my child when I have so little energy?
- How will I know if my children need extra help?
- Will this experience leave my children with emotional scars?
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