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Secrecy can make things worse

Some parents avoid talking about cancer because they want to protect their children. However research shows that children who are told about a loved one’s illness – particularly a parent’s – cope better than children who are kept in the dark.

Secrets can be difficult to keep. It can add to your stress; you may worry about whether you should tell or feel guilty if you don’t say something. You may need to change your routine without your children knowing which can be hard.

You can’t fool kids

Children are observant. No matter how hard you try to hide a cancer diagnosis, most children will suspect something is wrong. Even if it’s not a parent with the cancer but a close relative, such as a grandparent, this can cause stress that kids may pick up on.

Children will notice changes at home, such as your sadness, whispered conversations, closed doors, an increase in the number of phone calls or visitors, and possibly less attention being shown to them. These signs may be more obvious to older children and teenagers but even young children can sense a change.

If your kids suspect there’s a serious problem and you haven’t told them about it, they may make up their own explanation. Their ideas are often worse than the real situation.

They have a right to know

Children can feel deeply hurt if they suspect or discover they have been excluded from something important to them and their family. Sharing information shows you trust and value them which can enhance their self-esteem. The diagnosis may also be a chance for your kids to develop emotionally. They may learn about living with uncertainty and how to cope when life doesn’t go to plan. This helps build their resilience.

They might find out from someone else

Ideally children should hear about a cancer diagnosis from their parents or someone delegated by their parents, particularly if it is the parent, a relative or close friend with cancer.

If, as a parent, you tell friends and relatives about cancer in the family but you don’t tell your children, there is a chance your kids will hear about the cancer from someone else or overhear a conversation. Overhearing the news can give your children the wrong idea. They may think the topic is too terrible for you to talk about or that they are not important enough to be included in family discussions.

Kids may also misunderstand information and think a situation is much worse than it is. They may feel afraid to ask questions. They might worry in silence or spread incorrect information to other children in the family.

Kids can cope

When kids are in a family affected by cancer, it can be tough on them and you may wonder how they will get through it. But there is evidence that, with good support, children can cope. Research shows that a key factor in helping kids get through difficult times is a close relationship with an adult who values and supports them, and accepts them for who they are. That adult can be a parent, a grandparent, a favourite aunt or uncle or a family friend. Whatever the connection an adult who provides support can help a child through tough times.

Children need a chance to talk

Talking to your children about cancer gives them the chance to tell you
how they feel and lets them know it is okay to ask questions. Sometimes kids will open up to adults who are not their parents. They may feel guilty about burdening a sick parent or taking up the healthy parent’s time so they will confide in someone else like a teacher or step-parent. As a parent it is important to encourage your kids to talk about their thoughts and feelings with you or someone else who is trustworthy.

You are the expert

With careful thought and preparation, you can use your knowledge of your children to talk with them about cancer. This information aims to help you use that knowledge – firstly to tell your kids about the cancer and then to keep talking throughout the cancer journey. Sometimes it may take a few attempts before you find the best way for your family.

When you can’t talk about cancer

While some people are able to be open about cancer, others find it hard to discuss the illness particularly with children. Some parents don’t want to tell their children at all and try hard to hide the diagnosis.

People have their own reasons for not telling children including cultural differences, family circumstances and the death of a close relative from cancer. Sometimes you may not know how serious the cancer is and you want to wait to find out more before telling your kids.

Children’s understanding of illness and the implications of bad news 
varies depending on their age and family experiences. Click on the appropriate age group for information specific to children’s different needs, which can be helpful when working out what to say to children and how you might respond to lessen the impact of the news on them. Professional help may benefit a child who does not seem to be coping.

Your child may have a peer who has been diagnosed with cancer. While children often have some exposure to cancer, usually it’s an adult in their life who is affected. It can be confusing and frightening for a child to learn children can be diagnosed with cancer too. There are many ways you can help your child cope with another child’s cancer diagnosis.

Let your child know childhood cancers are not lifestyle-related 
(e.g. sun exposure or caused by smoking), nor does a child get cancer because of naughty behaviour or a minor accident like a bump on the head. There’s nothing anyone did to cause the cancer.

Children need to feel safe around the child with cancer. Tell them cancer can’t be passed on to other people. If the sick child is in isolation, this is to protect them from infection, not to protect everyone else.

Explain things will change for the friend or relative. They may not have as much energy to play or may be absent from school a lot. They may have physical changes (e.g. hair loss, wheelchair). Ask your child to focus on what hasn’t changed – their personality and friendship.

If possible give your child the opportunity to maintain their friendship with the child with cancer. They probably won’t see each other as often and they may not interact in the same way but both children will benefit.

Take your child to visit their friend or relative in hospital if you can. It is confusing and daunting for your child if the person with cancer disappears from their life after diagnosis. They may imagine the worst.

Take time to help your child keep in contact with their friend. You could make a get well card, write a letter, make a decoration for their hospital room or design a board game. For older children, phone, email and web contact help them maintain their links to the child having cancer treatment.

Allow your child the opportunity to have fears and grieve. They need to feel they can approach you when they want to discuss what they’re going through. Being honest with each other about fears and feelings can positively affect your relationship with your child and help your child’s well-being and ability to cope.

You might be unsure of the best time to tell your children; often there may be no right time. You may wonder if you should you tell them soon after you’ve been told yourself or wait until you have all the facts. It may be hard for you to decide how much information to reveal particularly if you are waiting on test results.

Keeping a secret while you’re waiting for results can be stressful and your children will probably sense that something is wrong. Try to tell the kids as soon as you feel able. It may be more manageable if you tell your children a little at a time. If you don’t know how serious things are or what treatment is required, say so. Assure your children that as soon as you know more details you will tell them. For example, “Daddy is in hospital to have some tests. We’re not sure yet what’s wrong but when we do know we will tell you”.

It’s also a good idea to tell children if:

  • you think they may have overheard a conversation
  • they are scared by adults crying
  • they are shocked or confused by physical or emotional changes in the person who has cancer
  • you observe major changes in your child’s behaviours
  • the person with cancer has symptoms that may need explanation, such as frequent vomiting, weight loss or hair loss.

For infants and toddlers, there is often not much benefit in including them in a family discussion about cancer. Perhaps you can introduce some words or phrases, such as “Daddy sick” to help explain changes from your normal routine. You should decide how much your young child needs to know.

Looking after yourself

Telling your kids about a cancer diagnosis can be confronting and difficult. It’s important not to attempt it while you’re in shock and still grappling with your own feelings. You may have trouble helping your kids deal with the news if you’re struggling yourself. You may be facing emotional and physical challenges and you will have to make many decisions but you don’t have to do this on your own.

Talking to other adults before discussing the situation with children can help you to articulate your own feelings and get used to the news yourself.

It may also help to write a list of things that other people can do for you. Family and friends are often keen to help out but usually need guidance on what to do. A friend can coordinate offers of help.

Talking about the diagnosis

You will know the best place and time that suits your children to hear important family news. It’s a good idea to find some time when you won’t be interrupted or have to rush off without answering questions, but it can be intimidating to sit the family down for a formal discussion. Many people find that bringing up the subject casually while doing something else – like walking the dog or cleaning up after dinner – can help reduce the tension.

Talking to children before bedtime or before an important event may not be a good idea. Ideally you should tell them at a time and in a place where they are most likely to listen and take it in.

Choosing the person who tells is another concern. In general it is easier if the information comes from someone who is close to your child. Ideally that will be the parent who has cancer, the other parent or both of you together. However this is not always possible.

Other options include an adult familiar to your child, such as a grandparent, aunt or uncle, or friend who may be able to tell your kids or be there when you do. This may be particularly important if you are a single parent. Or you could break the news with the support of a doctor, nurse or social worker.

Parents often doubt their ability to find the right words and to answer tricky questions their children ask. Take the time to consider how to approach the subject.

Role-playing the conversation with your partner, friend, relative or the oncology social worker at the hospital can help you. It means you’ve spoken the words and perhaps dealt with some of the anxiety attached to those words before you talk with your kids. You can also practise in front of a mirror. This helps set the words in your mind.

Even if you plan what to say and you think you might know how your kids will respond, be prepared to answer questions. You may not have all the answers but it’s okay to say you don’t know or that you’ll find out.

If you end up blurting out the bad news or your child reacts differently to how you expected, don’t worry. You have many conversations ahead of you and your children are unlikely to be affected by one discussion that doesn’t go according to plan.

Depending on the ages and temperaments of your children, you may decide to tell them individually or together. They may need to know different things because of their age or developmental stage.

The following checklist is a guide to the kinds of information you might discuss in your initial conversations about cancer.

The suggestions can help you tailor the information, depending on the children’s ages and reactions.

Tell them the basics in words they can understand

  • You can break the news with a few short sentences explaining what you know so far and what will happen next.
  • To help explain cancer terms, you can use the glossary, read books about cancer written for children or get hints from websites.

Find out what they already know

  • Ask your children what they know about cancer and then deal with any 
misinformation or myths (e.g. you can catch cancer or naughty behaviour caused the cancer).
  • Ask them what they want to know. Children get information from various sources, such as school, TV programs, the internet and they may have their own ideas of what having cancer means.
  • Only answer questions that the kids ask.
  • Don’t assume they have the same fears as you.
  • Give small bits of information at a time. You may need to keep repeating the information to ensure they understand the information you have given them.

 

Be honest and open

  • Let them know if you don’t know the answer to a question. Say you’ll try to find out the answer from the doctor and let them know as soon as possible. Make sure you follow this through.

 

Tell them what to expect

  • Your children may want to know what treatment will mean for them. If you are in hospital, who will drop them off at school, make them dinner, take them to after-school activities? Reassure them there will be a plan and that you will let them know about it.

 

Ask them if they want to tell anyone

  • They may want to tell their friends, the teacher, the whole class – or no-one.
  • You may want their teacher to know, even if your child doesn’t want to tell anyone.

Balance hope with reality

  • Tell kids that although cancer can be serious and going through treatment can be hard, most people get better. You – or the person with cancer – are going to do everything possible to get well.

Offer a listening ear

  • Your children may say very little and not ask questions when you first tell them. Some kids need time to absorb the information but it doesn’t mean they don’t understand.
  • Let them know they can come back to you at any time with questions, worries and scary feelings.

Don’t make promises you can’t keep

  • If there’s a chance you can’t keep a promise, it’s best not to make it. Rather than saying, “I’ll definitely be at the swimming carnival”, say something like, “I hope I can come to the carnival, but if I can’t, it’ll be great to see the photos. Maybe we can get someone to film your races”.

Show your love and emotion

  • Tell your children that you love them and assure them they will always be looked after.
  • Show your children you love them by hugging them, comforting them and making them feel valuable.
  • It’s alright to cry; this gives kids the message that it’s okay to show feelings. But try not to overwhelm or frighten them by your reactions.

After dad told us, the six of us sat around crying and hugging one another for some time. Despite the sadness of the occasion, we actually had a pleasant dinner with lots of laughter. Our lives changed from that day.
Lily, aged 17

 

When my ex-wife got breast cancer, I talked to my little girl about how the treatment caused changes, like Mummy would get very tired and her hair would fall out, but we expected her to be okay.
Father of a four-year-old

Creative ways to explain cancer

For younger children, children’s books and comics can be great ways to explain the basics of treatment. For older children, CanTeen’s publications may be helpful.

Try explaining cancer treatment using stories or dolls, or by playing games. You could make up a story about the battle of the good cells and the bad cells using surgery, radiotherapy, chemotherapy and other treatments as the weapons.

Think of the good and bad forces in Harry Potter or Dr Who. You could build a Lego game to show how, in the battle to defeat the bad cells, some good cells get hurt too (causing side effects). Kids who love Wii, Nintendo DS or PlayStation games will quickly get the idea about chemotherapy zapping the bad cells. Once you get your kids started their imagination will do the rest.

Art and music are another way to talk about cancer treatment. Ask your kids to draw what they think cancer is or how different treatments work. Their artwork can show a lot about what they understand or the experience of having a parent with cancer.

Listening to different types of music together or getting kids to make up their own music could help with their understanding of the different treatments (e.g. using percussion to represent destroying the cancer cells or listening to a lullaby to represent falling asleep before an operation).

Keeping a journal or diary can help older primary school children and teenagers express their feelings. Others may want to write a story about your diagnosis and treatment.

Before treatment starts you may be able to take your children for a tour of the treatment centre or hospital ward. Check with staff whether this can be arranged. This experience will mean your children get a clearer idea about what happens during treatment, they can picture where you will be and meet who is caring for you. Older children are often particularly interested in how the treatment technology works.

Answering key questions about your cancer

This is the question that most parents fear but often it doesn’t mean what you think. For example, younger children may really mean, “Who is going to look after me?”. Older children may be wondering, “Can we still go on our holiday?”. Try to explore the question by asking, “Do you have something in particular you’re worried about?” or “What were you thinking about?”. Some children think cancer is a death sentence, so it’s good to explain that many people are cured through surgery and medicine, and that new treatments are being found all the time.

A. “Some people do die from the type of cancer I have but I’m going to do everything that my doctor suggests to get better.”

“We don’t expect that to happen but I’ll probably be sick for a while. Sometimes it makes me sad and I wonder if you get sad too.”

Some children may ask you directly if they are to blame for the cancer while others worry in silence, so it’s best to discuss the issue.

A. “It’s no-one’s fault I have cancer. Scientists don’t know exactly why some people get cancer but they do know that it isn’t anything you did or said that made me sick.”

“Don’t ever think that you caused this cancer or that your behaviour can make the cancer better or worse.”

A common misconception for many children (and some adults) is that cancer is contagious. This belief may be reinforced because when patients have chemotherapy they need to avoid contact with other people who are sick. This is to protect the person with cancer from picking up infections.

A. “You can’t catch cancer like you can catch a cold by being around someone who has it so it’s okay to be close to me even though I’m sick.”

“Cancer can spread through the body of a person with cancer but it can’t spread to another person.”

When a problem arises in the family, it’s important for children to know what will happen to them and how it will affect their lives: who will look after them, who will pick them up from school and how roles will change. Try to give them as much detail as possible about changes so they know what to expect. For older children it’s valuable to ask them what arrangements they’d prefer.

A. “We will try to keep things as normal as possible but there may be times when I have to ask Dad/Mum/Grandpa to help out.”

Your children may not know who to tell about the cancer or what
 to say. They may not want to say anything at all. It helps to explore their feelings about talking to others. If you’re planning on informing teachers, the school counsellor or principal, tell your kids. Teenagers may be reluctant for the school to know so ask them who to tell and how much to say.

A. “You can tell your friends or teachers, if you want to, but you don’t have to. Many people find it helps to talk about the things on their mind.”

“What comes into your mind when you think about talking to other people about cancer?”

“I think it’s a good idea if the school knows what’s happening but you can let me know who you think we should talk to and how much we should tell them.”

Answering this question can be a delicate balance. It’s great to allow the kids to help out and contribute but it’s important that they don’t feel overwhelmed with responsibility. Some parents may feel hurt if their children don’t ask how they can help but it’s common for children not to think to offer.

A. “Yes, there are lots of things you can do to help. We will work out what those things can be and what will make things easier for everyone. Is there something in particular you would like to do?”

“Some help around the house would be good, but it’s important that you keep up with your school work and you have some time for fun.”

It helps to focus on what is happening now, what is actually known – not all the possibilities. One step at a time. It is important
to reassure children that
 you are not going to die immediately, that cancer is not a death sentence and that everything will be done to ensure that you live. Children often have unusual ideas about this.
Mother of three children, aged 18, 16 and 10

Crying

If your children cry, let them know it’s okay to do so and it’s a natural reaction. Holding them will help them feel secure.

Fear

Some children will become fearful and worry endlessly. It can be hurtful if they start to fear the person who has cancer. Explain that the person with cancer is still the same person, despite having bad cells in their body and possibly looking a bit different. Try to connect this to changes the child can relate to – a sick pet that got better or a tree that changes colour during the year.

Children may also fear that they’re going to be abandoned by their sick or their well parent. Reassure them that they will always be cared for. Help your child deal with their concerns by giving them a chance to talk about their fears.

Anger

It is natural for children to feel angry about the diagnosis as 
it is likely to change their routine. Older children may appear angry and uncooperative if asked to help out more. Younger children may
be annoyed if they are asked to
 play quietly. Both may be upset if a planned outing has to be postponed or cancelled.

No reaction

Sometimes a child will appear not to have heard the news or does not react. You may be confused or hurt by this especially if it took some courage to talk.

This reaction isn’t unusual – often
 the child is protecting themselves and needs some time to digest the information. Remind them that they can talk to you anytime about it. You may need to talk again if the situation changes or if their behaviour is different since you first told them.

Involving others

You don’t have to tackle the task of talking to children about cancer on your own. There are many ways to lessen the burden and to ensure kids hear a consistent message from people who are involved in their lives.

  • Tell key adults. Share the diagnosis with other people who talk with your kids (grandparents, friends, the nanny, babysitters) and tell them what you plan to say to your children so that you all communicate the same message.
  • Talk to other people who have cancer. Often the best support and ideas come from people who’ve already been there. You’ll realise you’re not alone and you may find out the way they handled things.
  • Ask a professional. Get some tips from the oncology social worker, psychologist or other health professionals at the hospital.

Many parents or carers wonder if they should tell the school. If things are tough at home, school can be a place where kids can be themselves with their friends and carry on life as normal.

Following are some ways to involve the school that you may like to consider.

  • Tell the principal and your child’s teachers. They may know of other people in the school community who have or have had cancer and this may affect your child’s perception of the illness (e.g. a parent or a child at the school may have died of cancer).
  • Tell relevant staff what your child has been told about the cancer and what they understand cancer to mean so they can respond consistently.
  • Ask the school to keep an eye on your child and to let you know of any changes, such as bullying. However request that teachers don’t probe – some well-meaning members of staff might misinterpret your kid’s behaviour and unintentionally make them feel uncomfortable (e.g. the teacher may ask if they’re okay when they’re happily sitting on their own).
  • Sometimes other children can be thoughtless in their comments. Check with the teachers and your kid to see how other children are reacting so that negative behaviour can be addressed appropriately.
  • Ask a parent of one of your child’s friends to help you keep track of school notes, excursions, homework and events. When life is disrupted at home, kids may feel doubly hurt if they miss out on something at school because a note goes missing.
  • Ask the principal whether the school could organise for Camp Quality to come and do a puppet show. Camp Quality is a not-for-profit organisation that educates both primary and high school children about cancer and its challenges. For more details, visit www.campquality.org.au.

Gemma, aged eight, asked her mother, Gayle, not to pick her up from school because Gayle was wearing a wig. Children at school had teased Gemma about the way her mother looked. Gayle confronted the issue directly. After asking permission from Gemma, the school and her classmates’ parents, Gayle visited the class and spoke about the cancer, the treatment side effects and why she wore the wig. Once the children understood, the teasing immediately stopped and the children started to support Gemma.

Understanding treatment

It can help to understand the treatments available and their effects. Don’t be afraid to ask the doctor to explain anything you don’t understand. The nurses, hospital social worker and Cancer Council 13 11 20 are also good sources of information.

Once you have a good understanding of the treatment, you will probably find it easier to explain it to your kids and answer their questions.

What do children need to know?

Children often need information to prepare them for what is happening to the person with cancer. An understanding of the treatment, why and how it is done, and the side effects, if any, can help them cope. What they’ll need to know will depend on their age.

  • Let the children be your guide as to how much they already know and how much they want to know about treatment.
  • Start with questions such as “Have you heard the word ‘chemotherapy’?” or “Do you know what radiotherapy is?”. Then explain the basic facts
of treatment using language they can understand.
  • Check if your kids have any questions and make it clear they can come back to you throughout the treatment if they have other queries or concerns, or are feeling overloaded after your first discussion.
  • Keep them up to date with how long treatment will take and how long you might be in hospital.
  • Explain who will be taking care of the person with cancer and the different ways they will help.

 

What will happen to them?

Routines can help children feel safe and secure. If you have to change a normal routine during treatment, tell them what the change will be, why it’s occurring and how it will affect them. They will probably want to know who will look after them, such as who will take them to school or sport. Tell them where you’ll be, such as at the hospital or resting at home, and that it’s okay to ask who will be doing the cooking or giving them lifts.

Hospital and treatment centre visits

Cancer treatment can involve short but frequent visits to the hospital as an outpatient (day treatment) or an inpatient (staying overnight). You might worry that your children will get anxious if they see the person with cancer in hospital or having treatment. For parents with cancer it can be worse if kids are separated from you and can’t picture where you are.

Ask your kids if they want to go to the hospital or treatment centre. If they’d prefer not to, don’t force the issue. If they are keen to visit, and you can make it happen, have a plan to help the visit go smoothly.

  • Before they enter the room, tell them what they may notice: the equipment, different smells and noises (e.g. buzzers, beeps, etc), and how different patients may look (e.g. tubes, bandages, drip, etc).
  • Let them decide how long they want to stay. It is common for small children to want to leave soon after arrival. They may want to help by getting you a drink or magazine from the hospital shop.
  • Have a friend or relative come along. They can take the kids out of the room if they feel overwhelmed and then take them home when they’re ready to go.
  • If your kids are reluctant to go to the hospital, their first visit could just be to the ward lounge room. Reassure them that this is okay and that they can send a card or call if they prefer.
  • Bring art materials, books or toys to keep them occupied. Older children may want to play cards or board games with you. Or you could simply watch TV or listen to music together.
  • If you have to travel for treatment and your children are unable to visit, use Skype or FaceTime on a mobile phone or laptop to communicate.
  • If you are staying in hospital for a while, ask the kids to make the room cozy with a framed photo or art work they’ve made.
  • After the visit talk to them about how they felt.
  • Ask the staff for support. Nursing staff and hospital social workers are sensitive to children’s needs during this difficult time and could talk to your children if necessary.

Explaining side effects

It’s important to prepare children for treatment side effects, such as physical changes after surgery, weight changes, fatigue and hair loss.

  • Not everyone gets all side effects. People who have the same cancer and treatment will not necessarily have the same side effects. Doctors know what happens to most people having a particular treatment but can’t be exactly sure what will happen to individuals.
  • Tell your children what side effects to expect, based on what the doctor has told you. Say you’ll let them know if you do start to experience these effects. Talk about ways they can help the person with cancer deal with the side effects (e.g. help pick out a wig).
  • Let them know the doctors will try to make sure treatment causes as few side effects as possible. A person’s weight and hair will probably go back to what it was after the treatment is over.
  • Reassure your children that they will get used to the changes. Point out the person is still the same person as before.
  • Side effects don’t mean the person is getting worse. It’s common for
kids to get upset on chemotherapy days when they see the effects of the drug, such as fatigue or vomiting. They may worry that the cancer has progressed. Explain to them that the side effects are separate to the cancer symptoms. Let them know that if there are no side effects it doesn’t mean the treatment isn’t working.

I knew that my hair falling out would be very traumatic for the kids. I invited two girlfriends around and involved the children
in a self-indulgence day. I
got one girlfriend to make scones while the other friend shaved my hair off. There was laughter, the children got involved in the shaving and then we all put make up on and did our nails. It was a great afternoon. There was no trauma. The children were happy to see I was happy and could still look wonderful with make up on.
Mother of two children, aged 13 and 9

Living with uncertainty

One of the challenges of a cancer diagnosis is dealing with uncertainty.

When first diagnosed, many people want to know what’s going to happen and when it will be over. But living with uncertainty is part of having cancer. There are some questions you will not be able to answer. Learning as much as you can about the cancer may make you feel more in control.

You may find you need to talk
to your family several times as things change. Update children regularly on the progress of treatment. You can talk about any uncertainty with your children by saying something like, “The doctor is confident that treatment will do ‘xyz’, but if that changes, we’ll let you know, and we may have to look at another treatment”.

Answering key questions about your treatment

Many children – and adults – are frightened of cancer because they think it will be painful. Cancer doesn’t always cause pain but if it occurs, it can be relieved or reduced.

A. “Cancer doesn’t always hurt but if I have pain, the doctors will give me medicine to help make it go away.”

Often people who have cancer look perfectly well when diagnosed. It’s only when they have treatment and the side effects kick in that they start to look sick. This can be hard to understand.

A. “The doctors are using strong medicine to kill the cancer but the medicine affects good cells as well as cancer cells. Some days I will feel and look sick but this doesn’t mean the cancer is getting worse. I will start to feel better when treatment finishes.”

Hair loss can be upsetting for you and your children so it can help if the family knows what to expect and what you might do about it.

A. “The doctor says I may lose my hair because of the treatment. It will come back but probably will look a bit different especially at first. I can wear wigs, scarves or hats until it grows back.”

A common fear among children is that they can become radioactive by touching you after radiotherapy. This is not possible.

A. “Radiotherapy is like an x-ray. It doesn’t hurt. It’s safe to touch me.”

Children often can’t comprehend the exhaustion you may feel after treatment. They may resent you not doing as much with them.

A. “The operation/treatment I’m having has made me tired and I need to rest a lot so my body can recover and get better. Why don’t we make a plan for where we’ll go or what we’ll do on a day I have more energy.”

Coping with changes

Many parents are keen to keep life as normal as possible for their kids during treatment. But this can be difficult to do when you are coping with the changes cancer brings such as changes to your appearance or to your energy levels. You may feel guilty about not being able to do all the usual things with your kids and some days you may not feel up to doing anything at all.

There are no easy answers to this problem but you can make the best of your good days by forgetting the housework and doing fun things with the family. On the not-so-good days, if you can’t take part in the kids’ activities, you might be able to watch and cheer from the sidelines. On the days when you can’t cope with much, let your kids know rather than protecting them from the reality of how you’re feeling.

It is normal for children to think mostly of themselves. Even on days when you don’t feel well they may be concerned with how it affects them. You may find this reaction hurtful or frustrating but it is normal.

Children may be curious about body changes and ask some matter-of-fact questions. It will help to explain why you look or feel the way you do. If you are not upset your children are more likely to accept changes easily.

You can let your children know that it is all right to joke and have fun. Laughter can often relieve tension and relax everyone.

It’s hard to predict how people will feel during cancer treatmentbut it’s important for a family to try to maintain routines and family traditions as much as possible.

Sometimes you have to strike a balance between doing regular activities and coping with the effects of the cancer. If you or your partner can’t get your children to their after-school activities maybe a friend or relative can help out. If that’s not possible, you may have to cut back activities for a while but involve your children in the decision.

Your children’s activities and friends can help them to cope. Encouraging a child to excel at their favourite activity can help their sense of optimism about life in general. When a child’s world is upside down, stability and routine often helps them feel less anxious.

During treatment, when life may be disrupted and unsettled, try to protect the time your family has together. These tips may help.

  • Limit visitors and don’t answer the phone or mobiles at mealtimes.
  • Ask your friends to send an email rather than call. For phone calls, ask them to ring when the children are at school or well after bedtime.
  • Put a message on the phone to say how you’re doing and for more information to ring the designated family member or friend.
  • Organise times for the kids to show you their achievements of the week.
  • Organise special activities (when you’re feeling up to it).
  • Think of things to do that don’t require much energy. You may want to read, watch TV or a DVD together, or play a board game.
  • Ask a close friend or relative to coordinate all offers from friends and family to help out with household chores. This will give you more time with your family.
  • Plan for ‘cancer-free’ time with the family where you don’t focus on the illness but do fun things that allow you to laugh, joke and relax.

Most children will want to help at home during treatment. If your children feel they are being of help, it can increase their confidence and self-esteem because it shows that you trust, value and need them. Even quite young children can help.

With older children and teenagers, it’s reasonable to want them to help more around the house but talk to them about it first. It’s important to negotiate tasks with teenagers – avoid overloading them and try to allocate them equally if possible. Jobs that are obvious to you are not necessarily obvious to them so make a point of discussing what needs to be done and how tasks can be divided up.

Teenage girls are often expected to pitch in more than their siblings which can take them away from their normal social activities. This can make them feel resentful at an already difficult time and can affect self-esteem.

The internet is a good source of information about appropriate jobs around the house for children of all ages. Search for ‘age-appropriate chores’ or something similar.

Children’s responses during treatment are as varied as they are. Anger, crying and emotional outbursts are some possible and normal reactions. Often the child is protecting themselves and needs some time to deal with the information.

When kids don’t know how to cope their fears can be channelled into anger because it is a familiar response. An angry outburst can be a chance to find out what’s going on; try not to shut their response down by getting angry yourself but remind them that they can talk to you any time about it. You may need to talk again if the situation changes, to check whether your child has any questions or if their behaviour is different since you first told them.

If your kids’ reactions seem unusual or extreme, think about getting some expert advice.

The issue of discipline is a common concern for families dealing with cancer. Maintaining the family’s usual limits and discipline can enhance your children’s security and ability to cope.

Sometimes parents say they have trouble keeping up normal discipline during cancer treatment. It can be hard enough to maintain family rules when you’re fit and healthy, let alone when you’re dealing with the emotional and physical effects of treatment.

Some children may misbehave to get the attention they feel they are missing. It’s okay to bend the rules occasionally but try to maintain your family’s boundaries and keep to them as best as you can. Let teenagers know that the usual rules apply for curfews, drug and alcohol use, and unsafe sex.

If you live in the country and need to travel for treatment, or if you have extended hospital stays, you may be away from your family for long periods. Try these tips to help you stay in touch. They may also be useful if you don’t need to leave home but want extra ways to communicate with your kids.

  • Ask your kids to do drawings and take photos to send to you.
  • Have a set time to call home each night when you’re away, then read a favourite story together over the phone.
  • Write an old-fashioned letter or send a recorded message. Kids love finding a letter addressed to them in the letterbox.
  • Leave notes and surprises for kids to find such as a note in a lunchbox.
  • Use the internet or a handy wireless network to keep in touch if possible (e.g. email, Skype or FaceTime).
  • If they’re able to visit, they can bring cards or pictures from home, flowers picked from the garden or a toy to ‘mind’ you in hospital.

After treatment

For many people the end of treatment is a time of relief and celebration. But it is also a time when you may have mixed emotions. Sometimes people feel at a loss. With more time and energy to think, they feel they need to reflect on what’s happened and re-evaluate their life.

How children react

Like many adults around you, children may find it hard to understand why things simply can’t go back to the way they were before the cancer. They’ve had to make adjustments while their parent or other loved one was sick and now they probably want to get back to normal.

Your kids may:

  • Expect the person who had cancer to bounce back. Often children don’t understand that fatigue can continue after cancer treatment is over.
  • Become clingy. Separation anxiety that started during treatment may continue well after treatment is over.
  • Worry the cancer will return. Like the person with cancer, recurrence is a big fear for children. You may need to reassure your children that regular check-ups will help monitor the cancer.

Below are a few ideas on things to do after treatment which may help you and your loved ones ease into your new normal.  

  • Celebrate the achievement of surviving cancer and thank your kids for their contribution to your recovery. Acknowledge the sacrifices your family has had to make; this is particularly important for teenagers.
  • Let the family know about your emotional and physical state so they understand if you’re not bouncing back.
  • Be prepared for mixed reactions from family and friends. If people don’t know how to react, try not to get upset.
  • Be open about your fears such as if you’re feeling anxious before a check-up. This may encourage your kids to talk about their own fears.
  • Explain changes that are being made to the family’s lifestyle and negotiate where possible.
  • Incorporate changes you need to make after cancer treatment into family life or activities e.g. do light exercise together or make healthy changes to the kids’ diets as well as your own.
  • Do things at your own pace. Avoid pressure to return to normal activities. You may want to ask yourself: Am I doing what fulfils me? Am I doing what I want to do? What is important to me?
  • Focus on each day and expect both good days and bad days, for both adults and children.
  • Encourage kids to have fun. They have lived with worry for months and may need permission to relax again.
  • Consider joining a support group. Many cancer survivors join a support group to meet people who understand what they have been through and how they’re feeling. This can be an important outlet which may help you cope and therefore benefit your kids.
  • Read other survivors’ stories. Learning how other people have made meaning of a cancer diagnosis may help.
  • Take part in a survivors’
event or attend a survivorship program, if there is one in your area. To find out more contact Cancer Council 13 11 20.

Barbara, who had early breast cancer, had surgery and chemotherapy. She had spoken openly and honestly with her son, Tom, 14, throughout the experience. When treatment was over, Tom said, “I wasn’t worried, Mum. You always told me the truth and I believed you”.

Answering key questions after treatment

You probably wish you could tell your children that everything will be fine now but the uncertainty of cancer lasts long after treatment is over. As well as giving a positive message, this may be a chance to listen to your child’s concerns about “What if?”. Allowing a child to talk about their fears and concerns is important in helping them cope.

A. “The treatment is over and we all hope that will be the end of it. We hope that the cancer won’t come back but the doctors will keep a careful eye on me. I will need to have check-ups every now and then. If the cancer does come back we’ll let you know.”

Cancer survivors often feel tired for many months after treatment. This can be hard for kids who want their energetic mum or dad back.

A. “I’m feeling a lot better but the doctor said it might take months, even a year, to get all my energy back.”

“The treatment was worth it because now I’m better and the cancer has gone away but it took a lot out of me and now my body needs time to recover. This is normal for people in my situation.”

You may need time to process the way cancer has affected you but 
this will probably be hard for children, particularly younger ones, to understand. It may be helpful to explain that not everything will be the same as it was before but that doesn’t have to be a bad thing.

Many people who’ve had cancer can see positive outcomes from the experience and it may help to highlight these to the kids.

A. “Things will start to get more like normal as I feel better but there may be some changes to the way we do things, like… [the way we eat / how much I go to work / how much time we spend together as a family]. Maybe we can also find some new hobbies to do together.”

“We’ve all been through a lot and I know it’s been hard for you too. Things might not get back to exactly how they were before I got sick but together we can find a new way that works for all of us.”

When cancer won’t go away

The information here is a starting point for talking to your children if someone they love has cancer that has come back or spread. The issues are complex, emotional and personal so you may find reading this chapter difficult. If you want more information or support, talk to the professional staff at the hospital or call Cancer Council 13 11 20.

If the cancer has advanced it is important to keep talking with your children. Again, just as with the diagnosis, children may sense that something is happening and not telling them can add to their anxiety and distress.

How you react to a diagnosis of advanced cancer can affect how the whole family adjusts. If you are anxious and depressed the family may be too. Some studies of people with advanced cancer show that family members often feel more distressed than the person with cancer. This seems to be more common where there is a lack of communication.

When children find out that the cancer is advanced, they may have similar but more intense reactions than when they found out about the original diagnosis. They are likely to feel insecure although teenagers may not want you to see this. Depending on their age, kids usually have different immediate concerns when they hear the news.

Preparing children for the loss of a parent is an incredibly hard thing to do. The following is a guide to how you can approach the initial conversation.

Be honest and open

  • Once children know the cancer has advanced they will need to be given some kind of an idea about what this may mean, in terms of the outcome (prognosis). With some cancers the prognosis is fairly clear and people will know that they may only have months to live. However more and more people with advanced disease are surviving for a longer time, sometimes for many years.
  • If death is likely in the short term it is best to be as honest as you can. If you need to talk about yourself or your partner, this can be an especially hard thing to do. You don’t need to do it on your own; social workers and other health professionals at the cancer treatment centre or the palliative care service can help you tell your children.
  • Being open about death gives you and your family the chance to show and say how much you care for each other as well as the opportunity to work on unresolved issues. The chance to talk through old arguments and make amends seems to be particularly important for older children.

Use words they can understand

Terms such as ‘passed away’, ‘passed on’, ‘lost’, ‘went to sleep’, ‘gone away’ or ‘resting’ can be confusing for children. It’s best to use straightforward language. This includes using the words dying or death.

Tell them what to expect

Prepare children by explaining how your illness might affect you in the 
days ahead. For example you might be sleepy or need a lot of medicine.

Wait for your child to ask

Give brief answers to questions they ask. It usually doesn’t help to offer lots 
of explanations if your child isn’t ready to hear them.

Balance hope with reality

Parents worry that if they talk about the death they take away their children’s hope. You can still be honest and offer hope. Tell your kids how the person with cancer is being cared for: the treatment they’re having, what the doctors say, and what things can be put in place to make things easier for the family.

Memory box

Putting together a memory box may help children come to terms with the fact that someone is dying. You can discuss what to put in the box and look for small keepsakes together.

Some ideas include:

  • postcards
  • photos
  • a lock of hair
  • a favourite item of clothing
  • a handwritten list of happy 
memories
  • a recipe of a favourite dish
  • a favourite CD.

Answering key questions about advanced cancer

How you answer these questions depends on the nature of the cancer and the effects of treatment. It may help to think about questions your children may ask in advance and to think about how you want to respond.

Asking the same question repeatedly is normal for children. By answering your children’s questions over and over again you are helping to ease their worries.

Sometimes children may test you to see if your answers stay the same. Try a different approach to answer your child’s questions each time they ask.

Time is a difficult concept for young children so it may not help to give even vague timeframes. Older children may want some idea. It is still important to balance hope with reality.

A. “Nobody knows for sure when anyone will die. The doctors have
said Dad/Pop/I will probably live for at least … months/years. Whatever happens, we want to make the most of that time. Dad/Pop/I will be trying to live for as long as possible.”

When death is near you may need to give a different answer.

A. “I honestly don’t know, but Dad/Pop/I will probably get a little weaker each day now.”

“No-one can answer that but we hope there’ll still be some good days.”

“Pop is very ill now because the treatment hasn’t made him better. He’s not having any more treatment and will probably die soon.”

Many children will still be worried about who will look after them so it’s best to tackle the question early on.

A. “It’s very important to me that you will always be safe and looked after. Dad will be there for you and your Aunty will help you all.”

“In case you’re worried about what will happen if the treatment doesn’t work and I’m not around, I’ve already talked to your Uncle and Grandma and they will be there for you and look after you.”

A. “It’s no one’s fault. Nothing you or anyone else, did or said made me ill.”

Q. What happens if Mum/Dad/Nanna dies too?

A. “When someone you love is very sick it can make you feel very scared. But Mum/Dad/Nanna are well and healthy now and they will be around to look after you. Whatever happens we will make sure you are cared for and looked after.”

A. “You can’t catch cancer. Most people die when they’re old and their bodies get worn out. It’s very unusual and sad for someone young like you to be so ill that the doctors can’t make them better.”

Issues with going to school

It can be difficult to know whether to send your children to school each day if you think someone in the family may die soon. You may feel like you need to keep them at home to be with their loved one as much as possible.

Maintaining routine in your child’s life can help them to feel more stable and safe. It may help them to go to school and see that normal life can continue even though things are changing at home. However there may also be days when keeping them home may feel like the right thing to do.

You may want to consider talking your child’s teacher about what is going on at home. You don’t have to tell them anything in detail if you don’t want to but it’s helpful for the school to know about any major changes in a pupil’s life.

If you have older children it’s important to ask them what they want you to do.

Teenage children might choose to tell their teachers themselves. They may not want their teachers to know at all because
they don’t want the attention or
to be thought of as different from the other students. Reassure your teenager that their teacher can help and won’t tell anyone else without their permission.

Being together

When cancer is advanced and life is even more uncertain, many families find new ways to make the most of every minute. Following are some ideas for maximising your time with your family and preparing them for the future.

  • Accept offers of help. It not only allows friends to feel that they are contributing, it frees up your time and energy for your family.
  • Make a memory box.
  • Plan a special outing with your family. You might have always wanted to take your kids to the beach, the ballet or the grand final football. You might want to show your kids where you grew up or maybe there is somewhere special your children would like to take you.
  • Listen carefully to what your child wants to say. If your child has any regrets let them express them at the time.

Getting professional help

Many professionals and organisations can help you communicate with your children throughout your experience with cancer. You don’t need to have a specific problem to make contact with these services.

You can ask for help even before breaking the news to your children. The health professionals can practise the conversations with you so that you feel better prepared.

You can also ask health professionals and organisations for help if you are worried about your children’s behaviour. You may choose to see or call the professional yourself and to use their advice to sort out the problem. Most parents, with the right advice, can support their children through the most difficult situations.

Occasionally a child may need to attend a consultation, and parents may be asked to come too.

These suggestions may help you decide whether you should contact a professional for advice about your children:

If you are worried

A parent’s instincts about their children are usually pretty accurate. Some families tolerate and deal with behaviour that other families find unacceptable. You need to decide what is worrying behaviour in the context of your family and your child’s development.

 

Ongoing behavioural change

If your child’s behaviour has changed (e.g. aggressive or regressive behaviour) and the change persists, it may be worth seeking advice. It’s not unusual for a child to revert to less mature ways of coping such as wetting the bed. A few times is okay, but if it goes on every night for a month, the child is clearly struggling. Another example is when a child refuses to go to school. They may say they are too sick for school but actually have separation anxiety and think they have to stay home to look after Mum. An occasional reluctance to go to school is not unusual but if it becomes a pattern, it’s a warning sign.

A young person should be referred to professional help if they:

  • Say they want to die too.
  • Are extremely preoccupied with dying.
  • Suffer academically or at work for an extended period after the death.
  • Act sad and withdrawn, or demonstrate severe behaviour like self-harm.
  • Have trouble socialising.
  • Simply need someone to talk to.

There are several places to look for professional help.

Here are some ideas:

Your specialist and GP
Not all doctors feel comfortable about how to talk to children about cancer. It will depend on the doctor and the relationship you have with them. Ask if they can help.

Nurses
Nurses may be the most constant contact you have with the treatment centre and are a source of valuable information and support.

Social workers
Social workers talk to patients every day about communication issues and have a wealth of knowledge. They can also help you work out if there are other professionals that can help meet your family’s needs.

Psychologists and counsellors
These professionals can help you work through communication and behavioural issues. Call Cancer Council 13 11 20 for more information.

Psychiatrists
Depending on the seriousness of the situation, you may need to see a psychiatrist. You will need a referral from a GP if you are being treated privately.

School counsellors
They are trained in child development and can be an enormous source of support and ideas.

CanTeen
CanTeen is an organisation that helps 12 to 24-year-olds who either have cancer themselves or whose parent or sibling has cancer. It offers resources, workshops, counselling, outings, camps and online forums for adolescents to help them cope with the emotional, physical and social impacts of cancer.

Call 1800 639 614 for more details or to order a copy of one of the titles in the Now What? series – various books for dealing with a parent’s cancer.

If you feel overwhelmed

Research shows that a child’s ability to cope is closely linked to how their parents are faring. Kids often copy their parents’ behaviour so if their mum or dad is depressed and anxious, they are more likely to be too.

There are many sources of support for you. Family and friends are usually keen to help. Let them know what you need because they may not know the best way they can help. They probably have a limited understanding of what you’re going through and will be relieved you can ask for help and give them something to do.

Assistance from organisations or the government for practical and financial difficulties can help reduce your stress. Other ways to help reduce your worry include complementary therapies such as massage, hypnotherapy or relaxation techniques. These may give you some time out and help to improve your sleep.

Contact Cancer Council 13 11 20 for copies of its free resources that may help you cope with cancer.