Talking about treatment

What do children need to know?

Providing children and young people with information about the treatment, why and how it is done, and possible side effects can help them to understand what to expect in the weeks and months ahead.

Outline the treatment plan

• 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 radiation therapy is?”. Then explain the basic facts using language they can understand.
• Check if your kids want to know more, and let them know that they can ask questions  throughout the treatment period if they have other queries or concerns.
• Talk to kids about how to search for accurate information online, to avoid incorrect or unhelpful information.
• Keep them up to date with how long treatment will take and the length of the hospital stay.
• Explain who will be taking care of the person with cancer and the different ways the carers will help.

Explain side effects

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

Explain that 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 each person – everybody is different.

Tell your children what side effects to expect, based on what the doctor has said, and how  these may change how you look or feel. Say you’ll let them know if you start to experience these side effects.

Talk about ways your children can help you deal with the side effects (e.g. help shave your head or choose a wig). Such actions make your children feel like they’re being useful.

Let them know that the doctors will try to make sure treatment causes as few side effects as possible. They should know that side effects usually go away after the treatment is over – hair will grow back, scars will fade – but this often takes time.

Reassure your children that they will get used to the changes. Point out that you’re still the  same person as before.

Side effects do not mean that you’re getting worse. It’s common for kids to get upset on  chemotherapy session days when they see the effects of the drugs, which may include fatigue or vomiting. They may worry that the treatment is making the cancer worse or that the cancer
has progressed.

Let your children know that these treatment side effects are separate to the cancer symptoms. If there are no side effects, reassure them that this doesn’t mean the treatment is not working.

If side effects mean you can’t join in usual family activities, make sure your children understand that it doesn’t mean you’re not interested.

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.

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.” SIMON, FATHER OF A 4-YEAR-OLD

Hospital visits

Cancer treatment can involve short but frequent visits to the hospital as an outpatient (day treatment) or a longer stint as an inpatient (staying one or more nights). A visit to hospital can seem strange and confronting for a person of any age, but especially for children. They may have to have a COVID test and wear a mask.

You may 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, you may also worry about your kids being separated from you.

Reassure them that hospitals are special places where people are given good care; children’s fears may be worse than the reality. Ask your kids if they want to go to the hospital or treatment centre. If they would prefer not to go, don’t insist on them visiting.

Preparing for a hospital visit

If children are keen to visit, the following tips may help prepare them.

• Before children enter the hospital room, tell them what to expect and what they may notice: the equipment; different smells and noises (e.g. buzzers, beeps); how you may look (e.g. tubes, bandages, a drip or catheter bag full of urine hanging on the side of the bed); 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 look at pictures or see some of the equipment in an empty room before visiting you.
• 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. Small children tend to get bored quickly and 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 leave.
• 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.
• If the hospital stay will be longer, 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 and answer any questions they may have.
• 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 in hospital

If your child is visiting you – or a sibling or friend – in hospital, explain beforehand that you may not feel well enough to play or talk much but will be happy that they care enough to visit. Some activities you could try include:

• card games
• board games
• drawing games, such as folding a sheet of paper into thirds then taking turns to draw the head, middle and legs of a character
• charades
• shared imaginary play with toys
• simple craft
• using your laptop or tablet to watch a favourite movie or program together.

Cancer and COVID-19

The COVID-19 pandemic has resulted in many changes, including increased awareness of the importance of hygiene. When cancer treatment (e.g. chemotherapy) affects a parent’s or a child’s immune system, family members may become anxious about hygiene and go to extra lengths to protect their family from COVID-19 or other infections. You can reassure children and teenagers that routine hygiene practices are okay, and that you will tell them if extra measures are needed.

Creative ways to explain cancer and its treatment

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

Make up stories and play games – Try explaining cancer treatment using stories they know, or by playing games. For younger children, you could play a game of popping “cancer bubbles” to make them go away. Blow some bubbles in the air and challenge your children to pop these cancer bubbles – or bad cells – by jumping, slapping, or stomping on them. You can explain to your children that the chemotherapy or radiation therapy is “popping” the cancer cells, just like they are popping the bubbles.

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

Offer them a tour – Before treatment starts, give your children a tour of the treatment centre or hospital ward. Check with staff whether this can be arranged. This experience will give your children a clearer idea about what happens during treatment. They can picture where the person with cancer will be and meet the medical team. Older children are often particularly interested in how the treatment technology works. If a hospital visit is not possible, consider
organising a video tour.

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).

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.

Draw out feelings – Use art as a 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.

Answering key questions

Q: Is it going to hurt?

Cancer doesn’t always cause pain, and if it does, the pain can be relieved or reduced. How you answer this question will depend on the child’s age.

For younger children, you may say: “Cancer doesn’t always hurt, but if I have pain, the doctors will give me medicine to help make it go away.”

For older children and teenagers, you may say: “The cancer treatment may cause me pain. The doctors can give me medicines for pain, but I might have good days and bad. I’ll let you know if I am having a bad day.”

Q: Why do you look so sick when the doctors are meant to be making you better?

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 for children to understand.

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

Q: Will your hair come back?

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.

“The doctor says I may lose my hair because of the chemotherapy. I can wear wigs, scarves or hats until it grows back.”

Q: Does radiation therapy make you radioactive?

A common fear among children is that they can become radioactive by touching you after radiation therapy. With most types of radiation therapy, this is not possible. Your doctor will tell you if you need to take any precautions.

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

Q: Why do you need to rest so much?

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

“The operation/treatment I’m having has made me tired and I need to rest so my body can recover. Let’s make a plan for what we’ll do on a day I have more energy. Perhaps today we can do something quiet like watch a movie.”

Acknowledging disappointment

It is normal for children to think mostly of themselves and how a situation affects them. Some older children and teenagers may seem annoyed about the diagnosis and uncaring of their parent. You may find their reaction hurtful or frustrating, but it is age-appropriate. Other
teenagers may take on too much responsibility around the house, and lose touch with their friends. It’s also important for them to maintain social networks.

It can be helpful to acknowledge your child’s disappointment: “I know you’re finding it frustrating that I can’t watch you play soccer like I usually do, but I am not feeling well and I just need some quiet time right now.”

It’s also important that children and teenagers understand that how they behave won’t affect your health and recovery. Children can sometimes feel that if they are not quiet, their parent won’t get better. You may like to tell younger children: “I know you feel upset that I can’t play with you. I am sad too, but I am very tired. Let’s think about what we can do tomorrow when I feel better.”

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.

Download our book ‘Caring for Someone with Cancer’ which discusses ways to look after yourself and how to take a break and includes a list of support services for carers. Call
13 11 20 if you would like a free copy.

Managing emotions

Everyone responds differently to the treatment phase. Anger, crying and withdrawal are some of the possible reactions. These can be protective responses that allow a child or young person time to deal with the information.

Some children may hide their feelings because they do not want to add to their parents’ stress. Even if your child’s behaviour doesn’t suggest they are struggling, let them know you  appreciate how hard this situation is for them.

Children will express their emotions differently depending on their age and nature. If your kids’ reactions seem unusual or extreme, consider getting some professional support.

• There are many ways to help children to understand and manage their emotions. These  include:
• Encourage, but don’t push, kids to identify and name feelings. For younger children, you may need to recognise and identify the emotion for them (e.g. “You seem like you might be 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.
• Remind them that they can talk to you about how they’re feeling at any time.
• Discuss ways to manage anxiety and stress.
• Make sure they have plenty of opportunities for physical activity and spending time with  friends.
• Provide plenty of physical comfort, such as hugs and cuddles.
• Offer creative ways for children to express their emotions.
• Create everyday opportunities for humour and fun. Let your children know that it is alright to joke and enjoy themselves. Laughter can often relieve tension and help everyone relax.

The emotions thermometer

The physical and emotional health of a person with cancer will vary during and after  treatment. It can sometimes be hard to let your family know how you’re feeling, and they might find it hard to ask.

An emotions thermometer may help. This simple tool allows you to show how you’re feeling every day. You can make one yourself and ask the kids to help, or there are many versions available online. Just search for “emotions thermometer”. Choose which feelings to include
and add a pointer that moves to the different feelings.

Put the emotions thermometer up where everyone can see it, such as on the fridge or noticeboard.

Encouraging family time

Maintaining routines and family traditions as much as possible will help children and young people feel safe and secure. Sometimes you have to strike a balance between doing regular activities and coping with the effects of the cancer.

If you need to change a regular routine during treatment, tell children 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 or do the cooking. Tell your children where you’ll be, such as at the hospital or resting at home.

If you or your family members can’t get them to their after-school activities, arrange for a friend or relative to 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.

During treatment, when life may be disrupted and unsettled, try to protect the time your family has together. Here are some ideas:

• Some families may limit visitors and choose not to answer any phones at mealtimes. Others may welcome some visitors at this time.
• You may want to set some boundaries around when friends phone you, or you might ask them to send an email or keep in touch through social media platforms. There are many ways to keep family and friends updated on how you are doing. You may use a closed Facebook group, set up a chat group on a messaging app, or use Caring Bridge.
• Think of things to do together that don’t require much energy. You could read a book aloud, watch a movie, or play a board game or a video game.
• Ask a close friend or relative to coordinate all offers from friends and family to help out with household chores. To help coordinate offers of help, you may choose to use an app, such as Gather My Crew or KiteCrew.
• 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.

Camp Quality Family Retreats offers holiday accommodation to families affected by cancer. This is often the first break a family has after a cancer diagnosis, and it gives them the chance to relax and reconnect.

Spending one-on-one time

When a family member is diagnosed with cancer, it can be difficult for parents to spend one-on-one time with their children. One way to focus your attention and care is to schedule a weekly 30-minute session with your child or teenager. This may help them feel important, valued and understood.

Talk with your children about the type of activities and family time that are important to them. If you have more than one child, you may need to alternate weeks for one-on-one time depending on your energy levels.

A younger child may not have developed the thinking or language skills to describe how they’re feeling, but a play session can help the child to express feelings, make sense of events, and understand the world. They may:

• act out a story with toys or puppets
• use fantasy and dress-up
• draw, paint or play games
• talk about their experience.

During a play session, comment on what they’re doing using empathy or observation, which will let them know that you are interested in what they are doing, saying and feeling. They may play on their own or invite you to play with them. Avoid asking questions or correcting your child.  This time is for them to lead the way. Their play may reveal an inner world that you may never have known about from what they say.

It’s common for teenagers to prefer spending more time with friends, but they may like to visit a favourite cafe, go for a walk, watch a movie or listen to music with you.

Maintaining discipline

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 caring for someone with cancer. Some parents say they feel guilty for putting the family through the stress of cancer, so they don’t want to keep pushing their children to do homework and chores.

The issue of discipline is a common concern for families dealing with cancer. Maintaining the family’s usual boundaries and discipline during this time can strengthen your children’s sense of security and their ability to cope.

Keeping up children’s chores, encouraging good study habits, calling out inappropriate behaviours, and sticking to regular bedtimes – all require continued and ongoing supervision from adults.

Some children may misbehave or push the boundaries to get the attention they feel they are missing.

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. Let teenagers know that the usual rules apply for curfews, drug and alcohol use, and sex.

Encouraging children to help

When a family is dealing with a cancer diagnosis, children may need to take on extra  responsibilities. If children feel they are being useful at this time, it can boost their self-esteem because it shows that you value and need them.

Young children can help with simple tasks. With older children and teenagers, it’s reasonable to want them to help more around the house, but it’s important to talk to them first.

Try to avoid overloading teenagers with household chores and try to share tasks fairly among all family members. Jobs that need to be done are not always obvious to older children, so discuss priorities and how tasks can be divided up.

When asking teenagers to help with household chores, keep in mind that it is age-appropriate for them to spend time with their friends as well. Missing the opportunity to socialise with their peers can make them feel resentful at a difficult time and affect their self-esteem. It may also cause them to be socially isolated from friendship groups.

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 bed
• 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
• wash and hang out clothes
• wash dishes
• wash car

This can be a time to reflect on priorities and what really matters for your family. You might choose to let go of some household tasks that you previously thought were essential.

Single-parent families

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 but may end up taking on more responsibility than they are ready for. Ask 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 Carers Australia Young Carers Network. This organisation runs activities and support groups for young people (aged up to 25 years) who care for a parent with a serious illness. Even young 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.

Staying in touch

If you 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 to you.
• Set a 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. FaceTime, Zoom or Teams).
• Write an old-fashioned letter. Kids love finding mail addressed to them in the letterbox.
•  Send an email or recorded message.
• Leave notes and surprises for kids to find, such as a note in a lunch box.
• Connect through social media.
• Use private messenger 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.

Key points: Talking about treatment

• Explain treatment to children as simply as possible.
• Don’t be afraid to be creative or have fun with your explanations.
• Let kids know how treatment works and how side effects may change the person with cancer.
• Encourage your kids to ask questions and express any fears or worries about the cancer treatment.
• Try to keep life at home as stable as possible and allow kids to continue their regular activities.
• Realise that children and adults alike may become intensely emotional occasionally.
• Maintain boundaries as much as possible.
• Let all children help out around the house.
• For teenagers, let them know their help is appreciated but not expected.
• Reassure your family if you expect there to be better days ahead.
• Spend time just with your family.