Talking to your children about your cancer

Why should children be told?

  • A child has a right to know about anything important that affects their family/whānau, as cancer does.
  • Children know something is wrong. If you try to protect them by saying nothing, they may have fears or ideas which are wrong or worse than the real situation.
  • Not talking about cancer may suggest it is a subject too terrible to be discussed.
  • Children may find out the truth from someone else, or get misleading information from TV or other sources.
  • Children can feel isolated if they are not told. They might feel they are not important enough to be included in a family/whānau matter.
  • If your children know about your cancer diagnosis they will be less confused by the reactions of others.
  • Younger children may notice things but misunderstand what they mean, which leads to confusion, for example, “Grandad died in hospital. Now Dad has to go into hospital. He is going to die too” or “I was cross with Mummy when she told me to pick up my toys, then she was ill. Maybe I made her ill”.
  • Children who know the situation can be a comfort and support to you. You won’t need to feel secretive and isolated in your own family/whānau.
  • Children have an amazing ability and capacity to deal with truth. Even very sad truths will relieve the anxiety of too much uncertainty. We cannot take away their sadness, but we can share our thoughts and feelings, give them information about what is happening, and give them our support.

Who should tell the children?

  • You should – if you think you can keep fairly good emotional control. It is alright to cry. Seeing you cry gives children permission to cry too. You will know in your heart if you can be the one to tell them.
  • If you feel that you cannot tell your children yourself, perhaps a close relative, or friend, or your doctor or other appropriate professional could support you. Even if you cannot talk to them about it yourself at first, it will help if you can be there. Let them know why you find it difficult to talk about it and that you are still adjusting to the news yourself.

It may help to have another person there for support. Explain to the children that they too may like to choose someone special as their support person when they need to talk about cancer. Sometimes children do not tell their parents their worries or concerns as a way of protecting them or not adding to their stress. Encourage them to think of someone else that they trust and feel comfortable with and they can talk to.

When should I tell the children?

  • After being diagnosed explain what is wrong.
  • When you are being treated explain how the treatment is given, what the side effects might be, and whether things will be different at home.
  • After you finish treatment explain to the children that you will tell them about your health and about any changes.
  • Be willing to talk whenever a child asks questions or seems concerned about your health. It can be helpful to take your children to treatment. Talk to the staff first so they can spend time explaining things to your children.

How should I tell the children?

  • At first you may want to talk to children individually. They may need to know different things because of age or development level. Later, it might be comfortable for you to talk about some things together as a family.
  • You may want to practise what you will say and anticipate what questions your children might ask (see “Different ages and stages” later in this booklet).
  • You will want to talk in a language each child understands – some children understand more when you draw pictures or use books, or both. See the list of books at the end of this booklet.
    • Assure them they will still be loved and cared for.
    • Listen to them.
    • Let them know it is okay to ask questions. Answer their questions simply. Ask them if they have understood your answers.

How much should I tell the children?

Children need to be given information they can understand in ‘bite-sized’ pieces.

  • Tell them what has happened.
  • Explain what will happen next.
  • Leave them with thoughts and feelings of hope that even though you are upset now, there will be better times.
  • It is okay to use the word ‘cancer’. You could explain that while cancer is a serious illness, the doctors have a plan for the best way to treat it.
  • Timelines need to be linked to real life. For example, if you are going into hospital for two days, say it will be just like a weekend. If chemotherapy takes four hours to run, say it is as long as two movies.
  • Correct any wrong ideas they may have.
  • Be as clear as you can about how your cancer will affect your family.
  • Let them know feelings as well as facts.

Some don'ts:

  • Don’t lie.
  • Don’t trouble them with frightening medical details, money worries (unless it will directly affect them), test results that are not in yet.
  • Don’t make promises you may not be able to keep. (Say “I think I will be able to or “I’ll try to …”).
  • Don’t be afraid to say “I don’t know”. (Find out later if you can.)
  • Don’t push children to talk.

Some ways to say things:

  • “I have an illness. It is called cancer. The doctor is giving me medicine to help me get well. Sometimes I will feel sick or tired and sometimes I will feel fine. Dad/Grandma/Auntie will help me take care of you until I feel better.”
  • “Being ill makes me feel sad. You are a help but it’s alright for you to feel sad (or angry or happy or whatever).”
  • “There was something growing in my body that wasn’t supposed to be there. It is called cancer. The doctors took it out in the operation I had. Now I will have treatment so it doesn’t grow back. If you have any questions about cancer, you should ask me. Sometimes you hear frightening things about cancer. I will tell you what we know about my cancer.”
  • “The cancer is trying to grow again. That makes me angry and sad too. I have to take very strong medicine (or have another operation or radiation treatment) to try to get rid of it. Doctors know a lot about taking care of people when this happens. We are doing the best we can. We think it will work.”
  • “Having cancer in our family makes all of us think and feel lots of different things. I know there are times when my cancer makes us frustrated or sad or worried. Remember that there are still lots of times when playing and having fun and going to school are important. I love to see you smiling and laughing but if you find you are feeling angry or sad, come and find me and we can work it out together.”

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