Talking about treatment

Thursday 7 March, 2019

Cancer treatment can be challenging for the whole family, but children and young people often manage better when they know what to expect. How much detail you provide will depend on the child; in general, kids like to know what the treatment involves, how it works, and why there are side effects. While you may not be able to say exactly what will happen, you can promise to keep your children updated.

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 prepare them for what to expect and help them adjust.

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 (see the glossary).
  • 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 (see a list of recommended websites), 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 they will help.

Explain side effects

It's important to prepare children for treatment side effects, such as physical changes after surgery, weight changes, fatigue, nausea 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 individuals.
  • Tell your children what side effects to expect, based on what the doctor has said, and how these may change how the person with cancer looks or feels. 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 and make your children feel like they're 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, but this often takes time – hair will grow back, scars will fade.
  • 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 treatment is making the person worse or that the cancer has progressed. Let them know that the 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.
  • Assure them that even if some side effects mean the person with cancer can't participate in activities or appears drowsy, it doesn't mean they'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.

Understanding treatment

It can help to understand the treatments and their side effects. Don't be afraid to ask the doctor to explain anything that is confusing or unclear. The nurses and social workers at the hospital are also good sources of information, as are Cancer Council's 13 11 20 Information and Support nurses.

You can read Cancer Council's information on different aspects of cancer treatment or get more information by calling 13 11 20. You can also listen to The Thing About Cancer podcast. 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.

Making a day of it

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

Prepare for hospital and treatment centre 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 overnight). A visit to hospital can seem strange and confronting for a person of any age, but especially for children. 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, you may worry about your kids being separated from you.

Ask your kids if they want to go to the hospital or treatment centre. If they would prefer not to, don't insist on them coming in.

If they are keen to visit, the following 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 the patients 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 the person with cancer.
  • 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. See more tips on staying connected with your kids.
  • 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 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 then the children take 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.
"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 four-year-old

Creative ways to explain cancer

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.

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.

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.

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.

Make up stories and play games

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

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).

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.

Chemo days

"I turned my yuck chemo days into "treat" time for the kids and me. We'd pick out some movies the day before chemo. After school, the kids would come into my room and we'd watch the videos. I didn't take much in and often dozed, but at least we were all together. It made the times very special and something positive in the midst of all the awful treatment." - Anna, mother of two children aged 9 and 13

Answering key questions

Q: Is it going to hurt?

Many children – and adults – worry about cancer pain. Cancer doesn't always cause pain, and if it does, the pain 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."

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

A: "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."

"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."

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.

A: "The doctor says I may lose my hair because of the chemotherapy. 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."

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.

A: "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.

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? Perhaps today we can do something quiet together like watch a movie."

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 give your family regular updates on the progress of treatment.

Talk about any uncertainty with your children by saying something like, "The doctor is confident that this is the best treatment for me, but if that changes, we'll let you know, and we may have to look at another type of treatment."

Family life during treatment

If you are a parent with cancer, you may be keen to keep life as normal as possible for your kids during treatment. But this can be challenging when you are coping with treatment and recovery, because of frequent trips to the hospital, changes to your appearance or lower energy levels. You may feel guilty about not being able to do all the usual things with, and for, your kids. You may try to push yourself to keep going, but some days this may not feel possible.

There are no easy answers to this problem, but you can make the most of your good days by forgetting the housework and doing fun things with the family. On the not-so-good days, 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 and how a situation affects them. You may find their reaction hurtful or frustrating, but it is ageappropriate. It can be helpful to acknowledge your child's disappointment: "I know you're finding it frustrating to keep the noise down because I don't feel well, but I just need a bit of quiet time right now."

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. Call 13 11 20 for a free copy or order online.

Changed behaviour

"My husband, Bruce, had a brain tumour and his personality changed because of it. At the dinner table one night, our four-year-old, Emma, announced, 'I wish Daddy was dead.'' I calmly asked Emma what she meant. She replied, "I don't like the man who's in my Daddy's body. I want my real Daddy back." I could then explain why Bruce's behaviour had changed." - Debra, mother of a four-year-old

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.

If your kids' reactions seem unusual or extreme, consider getting some professional support. However, 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.

Ways to help them to understand and manage these emotions, 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 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.
  • Remind them that they can talk to you anytime about how they're feeling.
  • 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 have fun. 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. 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 have to adjust 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 partner 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 tips you could try:

  • Limit visitors and don't answer any phones 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.
  • 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. .
  • Use an invite-only blog, such as caringbridge.org, to update family and friends on how you're doing, or put a message on your voicemail.

Family time

"I tried to get some rest during the day so that I was bright and more energetic when the family came home from school and work in the evening. I didn't want them to feel they had a sick Mum all the time – I was only sick from the treatment, not from the disease itself.

"It was important to spend time together as a family. Special times together often opened up questions for the kids.

"Talking is not the only way of communicating about feelings – in fact, it often goes over the head of a young child. When my kids were younger, it worked better to use dolls or stuffed animals to play out being sick, having treatment and getting well again." - Liz, mother of three children aged 10, 16 and 18

Tell your cancer story.

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 will help them feel important, valued and understood.

If you have more than one child, you may need to alternate weeks 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 or paint
  • 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

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.

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.

Some children may misbehave to get the attention they feel they are missing. It's okay to bend the rules occasionally, but try to keep to your family's boundaries 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.

Encouraging children to help

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

Young children can help with simple tasks (see below for ideas). 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 share tasks fairly among all family members. Jobs that need to be done are not necessarily obvious to them, so discuss priorities and how tasks can be divided up.

When asking teenagers to help, keep in mind that it is age-appropriate for them to spend time with their friends. Missing the opportunity to socialise with their peers can make them feel resentful at a difficult time and affect their self-esteem.

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 out, 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 children and young people up to 25 years of age 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.

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 "ageappropriate 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

Staying in touch

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 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. Skype, FaceTime).
  • 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 lunchbox.
  • Connect 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.

The Thing About Cancer podcast

For more information about all things cancer, listen to Cancer Council NSW's audio podcast series, The Thing About Cancer. The episodes cover a wide range of topics, including:

  • Coping with a Cancer Diagnosis
  • Managing Cancer Fatigue
  • How to Help Someone with Cancer
  • Explaining Cancer to Kids
  • Making Treatment Decisions
  • Sleep and Cancer
  • Cancer Affects the Carer Too
  • Family Dynamics and Cancer

To listen, go to cancercouncil.com.au/podcasts.

Key points

  • 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 home life as stable as possible and allow kids to continue their normal activities.
  • Realise that children and adults alike may become emotional or overreact occasionally.
  • Maintain boundaries as much as possible.
  • Let all children help out around the house.
  • Reassure your family if you expect there to be better days ahead.
  • Enjoy time just with the family.

Expert content reviewers:

Professor Kate White, Chair of Nursing, The University of Sydney, NSW; Sarah Ellis, Psychologist, Behavioural Sciences Unit, Kids with Cancer Foundation, Sydney Children's Hospital, NSW; Kate Fernandez, 13 11 20 Consultant, Cancer Council SA; Chandra Franken, Program Manager - NSW & ACT, Starlight Children's Foundation, NSW; John Friedsam, General Manager of Divisions, CanTeen, NSW; Keely Gordon-King, Cancer Counselling Psychologist, Cancer Council Queensland; Stephanie Konings, Research Officer, CanTeen, NSW; Sally and Rosie Morgan, Consumers; Dr Pandora Patterson, General Manager, Research and Youth Cancer Services, Canteen, and Adjunct Associate Professor, Cancer Nursing Research Unit, The University of Sydney, NSW and Visiting Professor, Faculty of Health and Life Sciences, Coventry University, UK; Suzanne Rumi, Consumer; Michael Sieders, Primary School Program Manager, Camp Quality.

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