Talking about treatment

When someone important to them is having cancer treatment, children need to know the treatment plan and what impact it will have on them. You can also help them understand what cancer is and what side effects are likely and prepare them for visits to the hospital or treatment centre.

The treatment plan

Children often need age-appropriate 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.

• 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 using language they can understand (you may find Cancer words for kids helpful).
• Check if your kids have any questions, and make it clear that they can come back to you throughout the treatment period 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. Let them know that some treatments can take a few months, and the doctors will then decide whether the treatment can stop or if more treatment is needed.
• Explain who will be taking care of the person with cancer and the different ways they will help.

How it will affect 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.

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

– Anna, mother of two children aged 9 and 13

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 said. Say you’ll let them know if the person does start to experience these side effects.
• Talk about ways your children can help the person with cancer deal with the side effects (e.g. help shave the person’s head, help choose a wig). Such actions can be empowering.
• Let them know that the doctors will try to make sure treatment causes as few side effects as possible. After the treatment is over, a person’s weight and hair will probably go back to what it was before.
• Reassure your children that they will get used to the changes. Point out
  that the person having treatment is still the same person as before.
• Side effects do not 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. If there are no side effects, let them know that this doesn’t mean the treatment is not working.
• Explain to them how much of the side effect is considered normal. This can be especially important for older teenagers who might worry about when they should call for help.

Cancer treatment can involve short but frequent visits to the hospital as an outpatient (day treatment) or a longer stint as an inpatient (staying overnight). You might worry that your children will get anxious if they see people with cancer in hospital or having treatment. If you are a parent with cancer, however, 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 would prefer not to, don’t force the issue. If they are keen to visit, have a plan to help the visit go smoothly.

• Hospitals can seem strange and confronting for children and adults
  alike. Before children enter the hospital room, tell them what they may notice: the equipment, different smells and noises (e.g. buzzers, beeps),
  how the patients may look (e.g. tubes, bandages, drip, catheter bag full
  of urine hanging on the side of the bed), that doctors and nurses might keep coming in and out to check on the patients.
• You may be able to arrange with the nursing staff for children to see some of the equipment in another room before going in the room for their visit.
• 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.
• Let your kids 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.
• 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 video calling on a mobile phone to communicate. See Staying in touch for more tips on keeping connected with your kids.
• If you are staying in hospital for a while, ask the kids to make the room cosy with a framed photo or artwork 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.

How to play with a child in hospital

If your child is visiting a sibling or friend in hospital, explain beforehand that the other child may not feel well enough to play or talk much, but will be happy that you care enough to visit. If the child with cancer is interested in playing, here are some activities you could try:

• card games
• board games
• drawing games, such as folding a sheet of paper in three and the children taking it in turns to draw the head, middle and legs of a character
• charades
• shared imaginary play with plastic animals, dolls or cars
• using your laptop or tablet to watch a favourite movie or program together
• simple craft.

Sometimes talking isn’t the best way to communicate with children and teenagers. A range of creative methods can help to explain cancer treatment and to explore feelings. You can adapt these suggestions for different ages and interests.

Make up stories and play games – 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.

Tap into stories that kids love – Think of the good and bad forces in the Harry Potter series 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 video games will get the idea about chemotherapy zapping the bad cells. Once you get your kids started, their imagination will do the rest.

Draw out feelings – Art is 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 are feeling.

Say it with music – 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 having an operation).

Visualise it – Draw a flow chart or timeline to show the different stages of the treatment plan. At different times throughout the treatment, you can look at the chart together and see where you are up to and how far you have come.

Keep a journal – Keeping a personal journal or diary can help older primary schoolchildren and teenagers to express their feelings. Some may prefer to write a short story that is based on the cancer diagnosis and treatment.

Offer them a tour – 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 the person with cancer will be, and they can meet the medical team. Older children are often particularly interested in how the treatment technology works.

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.

Good days and not-so-good days

You may feel guilty about not being able to do all the usual things with your kids and you may try to push yourself to keep going, but 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 trying to protect 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 seem to be concerned only with how it affects them. You may find this reaction hurtful or frustrating, but it is normal and age-appropriate. It can be helpful to acknowledge your child’s disappointment:

“You’re frustrated we can’t go to the park today because I don’t have the energy. I’m frustrated too because that’s something I’d really like to do with you, and I’m sad that I’m just not well enough for us to do that together right now.”

Talking about body changes

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 happy to talk about the changes, your kids are more likely to accept them. 

Laughter and fun

It is important to let your children know that it is alright to joke and have fun. Laughter can often relieve tension and help everyone relax.

Accepting help

If you are a parent caring for someone with cancer, such as your partner or your own parent, you may feel like you have little time and energy left for your children. Although asking for and accepting help can be difficult, it may relieve some pressure and allow you to spend more time together as a family. Cancer Council’s Caring for Someone with Cancer discusses ways to look after yourself and how to take a break, and includes a list of support services for carers. 

Children’s responses during treatment are as varied as children themselves. Anger, crying and emotional outbursts are some of the possible and normal reactions. These can be protective responses that allow a child time to deal with the information.

– Debra, mother of a four-year-old

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 down their response by getting angry yourself, but remind them that they can talk to you anytime about it. If the situation or their behaviour changes, you may need to talk again to check whether your child has any new questions or worries.

If your kids’ reactions seem unusual or extreme, think about getting some professional advice. However, some children will choose not to let their feelings show because they do not want to add any more stress for their parents. Even if your child does not show outward signs or behaviours that indicate they are struggling, take the time to check in with them and acknowledge how hard this situation is for them.

Like adults, children are likely to feel a range of strong emotions when someone important to them has cancer. You can help them to understand and manage these emotions. 

• Encourage kids to identify and name feelings. You may need to recognise and identify the emotion for them (e.g. “You look angry.” or “You seem really worried.”).
• Reassure them that there are no right or wrong feelings. Everyone reacts in their own way.
• Let them know that anger, guilt and sadness are normal feelings. You feel them too and it is okay to talk about them.
• Discuss ways to manage anxiety and stress.
• Make sure they have ample opportunities for physical activity.
• Provide plenty of physical comfort, such as hugs and cuddles.
• Offer creative outlets for children to express their emotions. They may like to write a story, play a game with dolls, draw or paint a picture, or make up some music using simple instruments.
• Create everyday opportunities for humour and fun.

It’s important 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 on the activities for a while, but involve your children in the decision.

– Anna, mother of two children aged 9 and 13

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 help 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 after their bedtime.
• Put a message on the phone saying how you’re doing and asking callers to ring a designated family member or friend for more information.
• Organise times for the kids to show you their achievements of the week.
• Think of things to do together that don’t require much energy. You could share reading a book aloud, watching a movie, or playing 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.

When a family member is diagnosed with cancer, it can be difficult for parents to spend individual time with their children. One way to focus your attention, care and interest is to hold a 30-minute play session once a week for your child.

If you have more than one child, you may need to alternate weeks depending on your energy levels. Teenagers may prefer a special time set aside to visit a favourite cafe or go for a walk, although some may still enjoy a session spent drawing or painting or playing games together.

These play sessions should be a special time for just you and your child in a room at home that is private. This is a chance for you to be fully present with your child. They may play on their own or invite you into their play.

A child may not yet have developed the thinking or language skills to fully describe their experience with words. Play can help the child to express feelings, make sense of events, and understand the world. Children use toys as their words, and play as their language. If you find it difficult to know how your child is feeling, they may show you through their play.

A child may express their feelings through various kinds of play, including:

• acting out a story with toys
• using fantasy and dress-up
• role-play
• drawing or painting
• using puppets
• using clay
• playing games
• talking about their experience.

During a play session, try to respond with statements of empathy or observation, which help to convey that you are fully there with your child
and interested in what they are doing, saying and feeling. Avoid asking questions or correcting your child. This time is for them to lead the way.

When children participate in play sessions, they feel important, valued and understood. They will often express an inner world through play that you may never have known about from their verbal communication.

A few simple guidelines can encourage an effective play session:

• Choose a private location in the house where there will be no disturbance.
• Put a sign on the door saying “Do Not Disturb – Sarah’s Special Time”.
• Arrange the toys in the same layout each time around the perimeter of a blanket or carpet.
• Tell your child when they have five minutes left.
• Set limits when necessary.
• Have fun! Children and parents report they both really value spending this special time together.

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. In some cases, both parents may need to travel to a major hospital and leave their children with family members or friends.

The following tips may help you stay in touch. They might 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 you.
• Agree on a set time to call home each night when you’re away, then read a favourite story together over the phone or via video calling (e.g. Skype, FaceTime).
• Write an old-fashioned letter. Kids love finding a letter addressed to them in the mailbox.
• Send an email or recorded message.
• Leave notes and surprises for kids to find, such as a note in a lunchbox.
• Engage through social media or personal blogs.
• Use private messenger phone apps for one-on-one chats with teenagers.
• If they’re able to visit, children can bring cards or pictures from home, flowers picked from the garden, or a toy to ‘mind’ you in hospital.

Most children will want to help at home during treatment. If your children feel they are being helpful, 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 tasks fairly among all members of the family. 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.

Keep in mind that it is important for teenagers to keep up at least some of their normal social activities. Losing the chance to socialise with their peers can make them feel resentful at a difficult time and can affect self-esteem.

Helping around the house

The internet is a good source of information about appropriate jobs around the house for children of all ages. Try searching for ‘age-appropriate chores’. Some possibilities include:

Ages 2–4

• put toys into toybox
• put books back on shelf
• put clothes into dirty washing basket

Ages 4–8

• set table
• match socks
• help make beds
• help dust
• help put away groceries

Ages 8–12

• make bed
• feed pets 
• vacuum
• load and empty dishwasher
• rake leaves

Over 12

• make simple meals
• clean kitchen
• clean bathroom
• clean out fridge
• wash and hang out clothes
• wash dishes
• wash car

In any family, a cancer diagnosis can make it challenging to meet everyone’s needs. If you are the only parent in your household, cancer may come on top of an already heavy domestic, financial and emotional load. 

Your children will need to help out, but may end up taking on more responsibility than they are ready for. Call on your friends and extended family to support them. You can also find out what support services are available in your area by calling Cancer Council 13 11 20.

You may want to get in touch with Young Carers. This organisation runs camps, activities and support groups for children and young people up to 25 years of age who care for a parent with a serious illness. Even younger children may be considered young carers – for example, if they are helping with cooking or cleaning. Camp Quality and CanTeen can also offer support to children when a parent has cancer.

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 sense of security and their ability to cope.

Keeping up children’s chores, promoting good study habits, calling out inappropriate behaviours, sticking to regular bedtimes, and other areas of potential conflict require continued and ongoing supervision from adults. 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 cancer treatment or of caring for someone with cancer. Some parents say they feel bad for putting the family through the stress of cancer, so they don’t want to keep pushing the homework and chores.

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.

Although some flexibility may be reasonable at this time, a predictable set of boundaries and expectations can help to maintain a sense of normal life and will be reassuring for children and young people.