Parents and friends

Is it the right thing to do to tell your children that you have cancer or is it better to keep silent? And what kind of reactions can you expect? More than anything you’d rather keep them from knowing. But is that at all possible? Those are questions that may sound familiar. Even so, being open is important. Because only then can your children do something about it. And you can teach them how to deal with feeling sad, worrying, being angry and anxious.

From experience we know that 'just' telling what is going is on brings the fewest problems. If you don’t do it, you risk your children finding out some other way. Because children have feelers. They see and hear everything. Their father walking out of the room with red eyes, grandma suddenly turning up on the doorstep, a telephone that keeps ringing, they pick up on the fact that something is wrong. If children do not know what is going on, they will search for explanations themselves. Often their imagination is worse than the reality. It is not bad if your children see you´re emotional, but try to prevent yourself from getting too upset. Do not give too much information all at the same time and use words the children can understand. Start by telling them what you have, why something has to be done about it and which treatment you will get. This website can help you. For all ages there is information on cancer, treatments and feelings.

It is not a good idea to avoid the word 'cancer'. Children can be misled and maybe hear it from friends instead of from their own mother or father. Remember that the fear is mostly your own. The bigger the fear, the more difficult it is to talk about it. By using the word 'cancer' in the first conversation, the children can get used to it and they will not be shocked if somebody else starts talking about it.

Many parents are afraid that their children will start talk about death. After all, there are quite a few grannies and granddads who have died from cancer, and so most children know you can die from it. It can be quite frightening if your child asks you such a question, but it is a good starting point for a conversation. After all, you can answer that there are different sorts of cancer and that you are only just starting your treatment because you believe you can get better!

It all seems so simple, but if you grew up in a ‘never-talk-about-anything family’, as a parent talking about cancer now can be really difficult. Do not expect too much of yourself, but follow your gut feelings. Keep an eye on your children and give them as much space as possible in what they want to see or hear. Maybe they do not want to know that much about it at the moment, but as time goes on they might have some questions. Do not hesitate to seek help from others.

Every child reacts to your illness in her or his own way. Those reactions depend on your child’s age and character, and on your own reactions.

Toddlers
Every child reacts in her or his own way to your being ill. Those reactions depend on your child’s age and character, and on your own reactions.

Primary school children
From around the age of seven children often are interested in facts. Some want to know all the ins and outs. The information on the children’s section of this website can help you to give them some information. At this age children often like to go with you to the hospital. Because seeing is believing. Some children will even choose to give a talk at school about cancer. By preparing this together you will get the chance to see if your child really understands it. Encourage your child not only to tell something about cancer and its treatment, but also what it does to her or him.

Young people
As your child gets older, she/he will be more involved with her/his friends and less with you as parents. That can mean it´s difficult to communicate. Remember that many teenagers behave like adults, but they are not adults yet. Often they say they understand everything, but looking back there were actually a lot of questions. A number of those questions are answered in their own section of the website. Make sure that your teenage daughter or son stays involved with what you are going through. Regularly going over the week often works really well.

Actually, children react just the same way adults do. They are sad, angry or scared, walk around with feelings of guilt, feel unhappy and ignored or behave very cool and pretend there is nothing going on.

Sadness
Children can be intensely sad. Usually that sadness doesn’t last very long and they will soon carry on as if nothing is going on. That is very normal. Children cannot focus on their sadness the whole day. They live in the here and now. But suddenly it can overwhelm them, when going to bed, for instance, or while doing the dishes. Many children do not show their sadness. Because just like you have the tendency to protect your child, your child has the tendency to protect you. Some children express themselves by writing. In their diary, for example, or in poems. Talk about sadness. Tell them how you deal with it. Tell them what helps and what does not. Find distractions, cry together, laugh together, set the grief aside every now and then and take some time to enjoy the nice things in life.

Anxiety
Many children are scared. Scared of the hospital environment, of changes in appearance, of the potential loss of the ill parent, of the loss of the healthy parent or of dying themselves. Some children think that cancer is catching, others know the concept of hereditary illness and are afraid they will get it too. Tell your child that cancer is not catching and that it being hereditary can play a role, but that often that is not the case and you can test for it. Talk to your doctor or nurse if your child has questions about it.

Feelings of guilt
Just like adults children look for causes. There are children who blame themselves for the fact that their mother or father has cancer. They think they said, did, or thought something that caused the cancer. Sometimes there is more going in their heads than you might think. It is also possible that they have the idea they are not doing their utmost and that that is the reason why, for instance, you are not getting better. Tell your children that it is not their fault you got ill or won´t get better.

Angry
Some children are angry. Angry because the world has changed, because home is not “home” anymore, because their mother or father is so ill. Teach your children how to deal with that anger.

Indifference
Sometimes children seem indifferent. They cannot or do not want to show their sadness. They need distraction and want to be just ‘ordinary’. Try to respect your children in how they deal with the situation and give them space to come to terms with it in their own way and own time.

Stomach-ache and headaches are common. Sometimes it is easy to figure out the cause of those complaints. It may be because of tiredness, going to bed too late, eating at odd times or eating poorly. Or maybe they just have the flu, an infection or a quarrel with a friend. Also suppressing worries can cause physical complaints. “It gives me tummy ache” or “my head is so full” are well-recognized physical reactions in many children. Usually your children themselves know what helps and what does not. Distraction, a mug of hot milk, washing away your worries in the shower, there are a lot of possibilities. And then there is the fear of getting cancer themselves. That can also cause complaints. Sometimes your child can have exactly the same complaints as you. A visit to the GP and the reassurance that it really is not cancer can help.

Some examples of ‘normal’ behaviour:

• They withdraw into themselves
• They behave as if they are helpless
• They constantly seek attention
• They are extremely helpful and very wise
• They take a step back in their development
• They are overactive
• They are grumpy or aggressive
• They are short tempered
• They are super sweet
• They have problems doing their homework or are doing extremely well
• They cannot (get to) sleep or have nightmares
• They don’t want to play with their friends anymore

All of this behaviour goes under the label 'normal'. They are normal reactions to a crisis, but that does not make it less difficult. When should you start seeking help? Persistent negative behaviour is a cry for help. But also a child that is too sweet for a longer period of time is often feeling out of sorts.

Besides that, persistent physical complaints are a cause for concern, children who do not want to go to school anymore and children who -before you became ill – already had problems. Call on a good acquaintance, a teacher, someone in the same situation, a nurse, the vicar, a child psychologist or an adolescence psychologist.

Try not to feel guilty if your child needs some extra support. Bringing children up is hard enough, let alone if you’re ill. During the time you are ill your children may need to help out a bit more often around the house or looking after you. Nothing is wrong with that. Many children like being able to do something for their parents. Even if normally they would not volunteer to do those jobs. But sometimes they take on too much or they have responsibilities they are not up to. It is a good idea to get help from others.

Be aware of your child’s behaviour, not only at home but also at school and at the sports club. Be especially aware of any changes. Are there problems at school? Does your son or daughter suddenly not feel like going to athletics anymore? Has the extreme party-goer suddenly become a house mouse?

Inform the school in good time about what is going on. Keep the teachers and the form teacher informed and arrange to be contacted if something goes wrong. Give clear indications about what you and your child expect of the teachers. Do or don’t they have to pay attention to it and to what extent?

Is there somebody your child can turn to? Make the teachers aware of this website. Many children like the school to be informed, but want everybody to behave normally. Maybe they would like to give a book review or a talk about cancer.

If you are caring for your children on your own, then the news that you have cancer can come as an extra big shock. But if it´s your ex-partner who has cancer, you will wonder how best to guide your children. For your children it is important to know they are surrounded by adults who are there. That is why being open with family and friends is very important. Make plans together on who can step in, who can help. Do not hesitate to ask family and friends for help, then the children will feel secure too.

It is possible that during your illness you will get extra support for childcare and financial compensation for being a care giver. It is important that you make clear arrangements regarding guardianship and your estate. Make sure as much as possible is written down and try to find a trustworthy person with whom you can share your concerns. Ask a solicitor for professional advice on how to write your will as best as possible. That will give you peace of mind too. Renew, if possible, the contact with your former partner and try to agree upon as much as possible. Support each other. Do it for the children.

If your long-term outcome is poor from the beginning, talking about death is inevitable. It is possible that the children will want to know how that happens, whether there is still anything that can be done about it and what will happen to them. However hard and painful that may be, encourage them to come with their questions. Some children withdraw into themselves or would rather talk to somebody else. That is also fine. They need time and security to be able to show their sadness. Every child finds her or his own way. Looking back on everything that happened in the past years together can give direction to your and your children’s feelings. Look at photos, cry, make a scrapbook of beautiful and funny things you´ve done, just sit together without saying anything, try to find a way that suits you best. It can help to get a (children’s) book that deals with death. Maybe the Achter de Regenboog (Behind the Rainbow Foundation) is right for your children. This foundation supports children and young people in coming to terms with the (approaching) death of a parent. For more information go to www.achterderegenboog.nl. Also walk-in houses and support centres for people with cancer and their relatives offer programs for children and young people. See www.IPSO.nl for a centre in your neighbourhood.

• Keep the children up to date, prepare them for possible changes
• Try to keep it concrete and clear. Possibly use books and brochures. Did they understand what they were told?
• Answer questions and encourage them to ask your specialist or a nurse questions.
• Do not promise anything you cannot deliver
• Keep ears and eyes open
• Give them an extra cuddle every now and then
• Have you ever told them about your own feelings?
• Some children (families) just do not talk a lot; that’s alright! Actually, you can just watch a film together, listen to music, go into the woods, and so on.
• Listen to what your child says 'between the lines'
• Writing poems and lyrics is talking too
• Going to bed on time and going to school as normal is important
• Try to create a safe atmosphere where the children dare to come with their fears and sadness
• Do not shy away from consulting experts
• Take the time for nice things. Life goes on.