when a parent has cancer how to talk to your kids

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When a parent has cancer:

how to talk to your kidsA guide for parents with cancer, their families and friends.

cot,r iL L.. r Cxhr- Co",u,L.noil: al,tr]!

), E??".'.r 7 Council' I New South Wates


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When a parent has cancer:

how to talk to your kidsA guide for parents with cancer, their families and friends.

ft,TheCancerGouncilN6w South waleso


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When a parent has cancer: how to talk to your kidsA guide for parents with cancet their family and friends.First published June 2005. Revised August 2007.@ The Cancer Council New South Wales 2007,sBN 978 192 1041 617

The editorial committeeThis book is the result of a coliaborative initiatlve called the Communicating with Kids about CancerProject, which involves The Cancer Council NSW, Pam Mclean Cancer Communications Centre andCansupport at Royal North Shore Hospital, Sydney.

The project's Steering and Working Committee has been instrumental in researching and developingthis book. The committee is:. Amanda O'Reilly, Cansupport. Emma Robinson, Pam Mclean Cancer Communications Centre. John Friedsam, The Cancer Council NSW.Writer: Marge OversRevision Editor: Laura WuellnerDesigner: Suzanne Pye, Sta:-fish DesignCartoonist: Greg SmithCover illustration: Benjamin Barkwith

AcknowledgementsWe are grateful to the many parents and partners, whose real-life stories have added to the richness andrelevance ofthis book. Thank you for generously contributing your time, ideas and stories.We thank the expert reviewers: Dr Jane Turner, Senior Lecturer, Department o{ Psychiatry, University ofOueensland; Dr Fran Boyle, Medical Oncologist, Royal North Shore Hospital and Mater Hospital, NSW;and Alison Pryor, Senior Social Worker, Cancer Services, Liverpool Hospital, NSW.We thank and acknowledge Dr Paula K. Rauch, MD, Director ofthe Cancer Center Parenting program atMassachusetts General Hospital and Chief of the Chitd Psychiatry Consultation Service to pediairics,whose research and writing on helping parents talk to their children about cancerwas adapted forthisbooklet in a number of sections: page 10 Let your kids ask questions; pages 12-'15 From toddlers andteenagers; page 21 Involving the school, page 22 Answering key questions, Are you going to die?; page 27Hospital and treatment centre visits; and page 2g protecting familv time.Thank you to the organisations and consumers who reviewed this book, including representatives of theNational Breast Cancer Centre, Breast Cancer Network Australia, Breast Cancer Ailion Group, CancerVoices NSW, Cancer Council NSW Young Women with Breast Cancer Soiree Group, Cansupport, Cancercouncil NSW parents

telegroup counselling participants, and cancer council NSW staff.We also thank:

' Dr Kendra sundquist, Managet supportive care Development unit, The cancer council NSW, andPro{essor Stewarl Dunn, Director, Pam Mclean Cancer Communications Centre, for their valuable input.

' The Telstra Foundation for supporting and funding the original concept for the Communicating withKids about Cancer Project.

' TheAmericanCancerSocietyforpermissiontousemateria' fromitsbook, CancerintheFamity,lortheinformation on pages '16-17.

The Cancer Council New South WalesThe Cancer Council is the leading cancer charity in NSW. lt piays a unique and important role !n the fightagainst cancer through undertaking high-quality research, advocating on cancer issues, providinginformation and services to the pubiic and people wlth cancer, and raising funds for cancer programs.To make a donation to help defeat cancer, visit The Cancer Council's website at www.cancercouncil.com.auor phone 1300 780 1 13"

Before commencing any health treatment, always consull your doctor. This booklet is intended as ageneral introduction 10 the topic and should not be seen as a substitute foryour own doctor's or healthprofessional's advice. All care is taken to ensure that the information contained here is accurate at thetime of publication.

The Cancer Council New South Wales153 Dowling StreetWoolloomooloo NSW 2011Cancer Council Helpline: 13 11 20Telephone: (02) 9334 1900Facsimile: {02) 9334 1741Email: [email protected]: wwwcancercounc; I.com.au

, Thel, cancer\ / Council' I New Sodh Wales

Buildlng aCancea SmaftCammLinifu


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ContentsPreface

About this bookYou are the expert.Who is this book for?How this book was developedHow to use this book

Chapter 1Why children need to know.How The Cancer Council can helpCancer in the family: ten ways to help your kids cope

Chapter 2From toddlers to teenagers - what to sayNewborns, infants and toddlersPreschool children, 3-5 yearsSchool-age children, 6-12 yearsTeenagers, 13-18 yearsChildren's reactions and needs at different ages ........

Chapter 3Dealing with the diagnosisLook after yourself

When to tell . .Getling startedThe first conversationAsk for help.lnvolving the schoolAnswering key queslions .. .

Chapter 4Talking about treatmentU nderstanding treatmentWhat do children need to know?

How to explain cancer wordsCreative ways ro explain treatmentHospital and treatment centre visits .Living with uncertainty ....Family life during treatmentThe emotions thermometer ....How kids might react,Answering key questions . .

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Chapter 5Getting professional helpWho can help?When to seek additional helplf you feel overwhelmed .

Chapter 6After treatmentHow parents may feelHow your children may feelAnswering key questions . ..

Chapter 7When cancer won't go awayHow parents reactHow children react .Keeping the door open ...What information do children need? .Facing a parent's death: how different ages reactFacing questions about deathBeing togetherAnswering key questions . . .

Chapter 8Where to find more informationBooks for young childrenBooks for older readersBooks for parentsOrganisations . ..WebsitesThe Cancer Council Regional Offices

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About this book +4.".t!:ii,::'rs+:,:: -- -:-Cancer can have a profound irnpact onyour life and your family.

It's hard enough dealing with the impact ofcancer on your own life - especially in thewhirlwind of the days and weeks afterdiagnosis. You not only have to come to gripswith your cancer, you have to work out how to help your family copeand how to talk about issues you hoped you would never have to face.

The prospect of telling your children you have cancer can befrighteaing and upsetting. Parents often say they initially avoid tellingtheir chrldren because they are trying to protect them from anxiety anddistress, or that they don't want to spoil family occasions, such asholidays. Some parents also want to avoid confronring questions about

the possibility of death.These issues can be overwhelming, but they don't change the fact thatyou know what works best for your family. Y


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ln a nutshell

Youcan

use this book asa resource t0 ensure yourchildren hear a consistentmessage about yourcancer. Pass it on tograndparents, teachers,school counsellors andneighbours * anyonewho rs talking with yourchildren

Who is this book for?This book is for people with cancer who have children. It has beenwritten with the newly diagnosed person in mind, but will still beuseful for people who have had cancer for some time. It may aiso helppeople with cancer who are grandparents.

We hope it will also be useful for partners, close friends and relatives,and anyone else who may talk to your children about your illness.

How this book was developedThere are few Australian books on how parents can talk with theirchildren about cancer. Aiming to fill this gap, The Cancer CouncilNS!7, Cansupport and the Parn Mclean Cancer CommunicationsCentre worked together to produce this book.

It is based on medical evidence, and input from experts - such aspsychiatrists, oncologists, psychologists, social workers andcounsellors - who help families deal with the challenges of cancer.Most importantly, parents who have cancer have helped us to ensurethis book deals with the rnain issues they have faced - and continue tcrface - in communicating with their children about cancer.

How to use this bookThis book follows the cancer journey - from breaking the news aboutyour diagnosis and treatment issues, to life after treatment. You maychoose to read all the book at once or to read each chapter as itbecomes relevant to you.

Please keep in mind that Chapter 7, When cancer uon't go dway, maybe confronting for somc readers, partlcularly those who have iust beendiagnosed. Remember, not everyone will need to think about thoseissues. Cancer treatments are becoming more effective all the time andmorc pcople are surviving cancer.

A good summary of the key principles of this book is on pages 10 and11. Feel free to photocopy these pages and hand them out to familyand friends to help them understand what you're dealing with. Thesepages can also be a good starting place for you, if you don't feel readyto read more of the book at this poinf.'We

have used the terms 'kids' and 'children' interchangeably in thisbook, because that is how parents speak.

6 The Cancer Council New South Wales


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-l .,'t,\'f

Chapterhy children need to know\When you were told you had cancer, your first worries may have beenfor your children: How will they cope if you get really sick? \7hat willyou tell them? How will it affect their lives?

You're not alone - each year in NSW 30,000 people are diagnosedwith cancer. About one-quarter of these people have a child under 18.

It can seem overwhelming, but there is strong evidence that being openand honest with your children is the best way to help them cope withyour cancer.

This chapter looks at the reasons for telling your children about yourcancer and includes general tips to help your family.

There are several reasons why it is best to be honest with your childrenabout your cancer.

Secrecy can make it worseSome parents avoid talking about their cancer because they want toprotect their children. However, there is strong evidence that childrenwho are told about their parent's cancer have lower levels of anxietythan children who are kept in the dark. The problem with secrets isthat they are very hard to keep.

A family's story

Bronwyn did not tell herchildren she had breastcancer, despite havinghad a mastectomyand needing a wig tocover hair loss fromchemotherapy. Becauseher own mother had diedfrom breast cancetBronwyn refused to tellher children because shefeared they would worrythat she would also die.

Why children need to know 7


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What parents say

"I didn't tell her straightaway because I didn'twant her to worry over

Christmas. I didn't wantthis Christmas to beany different to all theother lovely Christmaseswe've had."

lather of a 1.5-year-old.

"Sooner or later they\ /ere going to find out.!7hy not te1l straightaway? I tell them franklywhat is happening. I thinkthey find it much easier tocope because they areready for things."Mother of three children,aged 16, 13 and 12.

You can't fool kidsChiidren are observant. No matter how hard you try to hide the cancerdiagnosis, most r,vill suspect something is wrong. Thcy will noticechanges at home, such as your sadness, whispered conversations, closed

doors and the rnany phone calls. These signs rnay bc obvious to olderchildren and tecnagers, but even young children can sense a change.

If your kids suspect you are facing a serious problem, and you haven'ttold them about it, they rnay make up their own explanation. Theirfantasy is often worse than the reality.

They have a right to knowChildren can feel deeply hurt if they suspect or discover they havebeen excluded from something important to them and their family.

lf you involve them, you show you trust their ability to participate,which can enhance their self-esteem and can be a chance for growth.This may be a powerful opportunity for your kids to learn about livingwith uncertainty - and how to cope when life doesn't go to pian.

They might find out from someone elseIf you tell close family and friends, there is a chance your children willhear about the cancer frorn someone else or overhear a conversation.The worst way to hear difficult news is to overhear it. It can give yourchildren the wrong idea. They may think the topic is so terrible youcan't talk about it, or that they are not worthy of being includcd in thcdiscussions.

Kids can copeWhen you have cancer, it can be tough on your children and you maywonder how they will get through it. But there is evidence that, withgood support, kids can cope.

Research has shown that a key factor that helps kids get through difficulttimes is a close relationship with an adult. That adult can be you, theother parent, grandparents, a favourite aunt or unclc or family friend.Whatever the connection, an adult who is a source of support and goodcomrnunication can help a child withstand the toughest of tirnes.



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Children need a chance to talkTalking to your children about cancer gives them the chance to tell youhow they feel and lets them know it is okay to ask questions.

Parents who can't tell'While more parents are choosing to be open about their cancer, somefind it hard to tell their children and try hard to hide their illness.

Sorne parents have their own reasons for not telling their children,including cultural differences, family circumstances and the death of aclose relative from cancer.

If you need support about issues that prevent you from talking toyour children about cancer, please call the Cancer Council Helpline on13 11 20, where trained oncology nurses can talk to you about yourchildren and the difficulties vou face.

How The Cancer Council can helpTalking to kids about your cancer can be very difficult. To help youin this situation, The Cancer Council NSW offers telephone supportgroups.

This service provides the opportunity to talk to other parents in asimilar situation guided by two specially irained facilitators.

ln the groups you can practise what you would say 10 your kids and

can hear from others what has worked and what hasn't gone so well.lf you live jn NSW and would like more information, or want toenrol in a group, call the Cancer Council Helpline on 13 11 20.

What parents say

"\7e mustn't brush themaway. Children are awareand chrldren can cope, so

I've never pretended withthem, but I've certainlyaccentuated the positive. "

Mother of a fiue-year-old.

"Try to be positive andlook at the cup half full.My own experience wasthat it was a very positiveyear for our family and atime for closeness. We hadlots of fun and learnt totreasure each other more."

Mother of tbree boys, aged1.8, 16 and 10.

A family's story

Ron, whose wife hadcancer, had twodaughters, Kelly andMarie. Kelly was sportyand Ron found the besttime to talk to her waswhen they playedbasketball in the backyardBetween shots, Bonwould occasionally ask aquestion about how shewas feeling. For Marie,

the best time tochat

wasstorytime before bed. Ronwould use that quiet timeto talk with her about howshe was feeling aboutmum. Sometimes shewould say she was okayand would want to qo onwith story, other timesshe wanted to talk.

Why children need to know 9


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Cancer the family: ten ways to help your kids copen

1 Open the doorFor many people, cancer is a long and uncertainjourney. At diagnosis you may know little aboutyour cance! so it's difficult to know what to tellyour children.

This means that teliing your children about canceris not a one-off event. It is an unfolding story, andyour children will need regular updates as youfirrd out more informarion.

$7hen you first break rhe news (see page 19),let your children know they can come to you atan1' time with questions or concerns. Childrenoftcn won't say they are worried, so they

needlots clf chances to talk and for you to draw outthose conccrns.

So it's a case of opening thc door to talk aboutcancer and trying to leave that door openthrorrghout your cancer expericnce.

2 Don't expect to be perfectTalking to your kids about cancer can beconfronting and upsetting. Sometimes it can betricky to talk to them, and you may make a bitof a mess of it. I)on't panic. If things don't workout the way you planned, take time to work outwhat you will do differently next rime.

Kids will cope if a conversarion doesn't goexactly as planned. And a setback can be a greatchance for growth for both you and your kids.

Givc yourself a break - you weren't a perfectparent before cancer and you won't be a perfectparent after the diagnosis.

3 Let your kids ask questionsTry not to overload children with too muchinformation at once. One way to avoid this is togive them small amounts of information, wairand then ask them if they have any quesrions. Ifthey don't, leave it at that. They may come backa day or two later to ask you a question.

Answer their questions as accurately as possible,considering their age and cxperience of canccr inthe family.

If your kids know they can ask you anything atany time and you'll do your best to answer, this

operrs the door for continued communication. Itcan hclp to show you appreciare their questionsby saying something like: "You have such greatquestions. "

Often children's questions have a hidden meaning,so try to tease out thc real rneaning r,vith responscslike: "Thatt interesting. \What got you thinkingabout that?"

You don't have to immediately answerquestions. If you don't know the answer or wanrto think about it first, say you'll come back withan answer. You could say something like:

"That's a really good question and I want totalk to dad/mum/the doctor. I'll let you knowwhat they say."

This shows that you welcome all qucstions.

10 The Cancer Courcil New South Wales


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4 Take every opportunity tocommunicateMost parents know the times and situations

when their kids are more likely to open up. Forone child it may be bath or bedtime, for anotherit may be the walk or drive to school.

Try to tap into those times and be creative infinding ways to talk to your children and findout how they are feeling. You don't have ro sitdown and have a heart ro heart, which childrenmay find threatening. Sometimes the bestconversations are in the car or while you'redoing the washing up.

Tune into how your kids like to play, becausegames can often reveal a lot about what theyare thinking and feeling. From sandpit play andjournai writing to playing with toys or kickinga soccer ball, there are many ways to gently findout how your children are feeling.

Art is also a great way to ger kids talking. Foryounger children, you can ask them to draw ahouse, and draw each of the family members,so you srart to get the picture of how they seethe family.

(SeeChapter 2 for tips on talking to kids ofdifferent ages.)

A11 through your cancer journey there areways to communicate with your kids that don'tinvolve talking. One of the best ways tocommunicate is to simply spend time with them.

5 Be honest and maintain trustYou can't protect your children by avoidingthe truth. Once you've established goodcommunication about cancer, keep it goingby being as open as you can, even if the newsisn't good.

6 Ask them what they knowEncourage your children to tell you what otherpeople have said about your cancer. This givesyou the chance to clear up any misunderstandingsand, if they hear anyrhing that upsets them, theyknow they don't have to worry alone.

7 Set them straightChildren often worry that they caused a parent\cancer. Make it clear that nothing they have donecaused your cancer and nothing they do can affectthe course of the cancer.

8 Show your love and emotionAs always, take every opportunity to tell yourchildren that you love them. Assure them theywill be looked after throughout your cancertreatment, even if you can't always do ityourself. And don't be afraid to show yourernotions in front of your children. This showsthern that it's okay for everyone to show theirfeelings, and that you don't always know whatto do or say.

It's also important to show your children thatyou love them, with lots of hugs and spendingspecial tirnc together.

9 Preserve family time and changetheir routine as little as possible

Continue with your normal routines as much aspossrble. If you can, during treatment try to setaside time for the whole farnily as well as foreach of your kids.

Depending on your famiiy, there may be manypeople corning to your house to help. This isgreat, but it is important to make sure thathelpers don't take over and visit too much.Sometimes it can be useful to let helpers knowthat a particuiar day or afternoon is family orquiet time.

Tell your kids it's okay to go about their life asusual * to see friends, piay sport, do after-schoolactivities and have fun. Welcome their efforts tohelp out at home but don't take it for granted.

10 Be prepared to listenWhen you're talking about the cancer andtreatment) remember to stop and listen to yourchildren. Somerirncs parents are so intenr ontalking about the medical information they don'thear how their kids reallv feel.

Cancer in the family: ten ways to help your kids cope 1 1


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J1

Chapter 2 From toddlers to teenagers- what to sayRegardless of age, all children need to know that they are loved andwill be cared for when a parent has cancer.

This chapter includes gcneral infonnation about how different agcgroups undcrstand and react to a parent's cancer, and some tips forhelping thern cope. Every child is different, so use your knowledgc ofyour child's personality to help work out how they may react.

For detailed infonnatiorr about how kids of all ages undcrstand a cancerdiagnosis and react to it - and how to help them cope - see the table onpagcs 16-17. On the ncxt few pagesr we have tips and parents'storics togct you started.

Newborns, infants and toddlersChildren in this age group usually have littlc awareness of illness butwill rcact to being separated from you and changes in routine. Theymay not be able to talk about it, but they often pick up on physicaland ernotional changes. Their level of awareness can be surprising.

For this age group, the kcy issues are rneeting thcir basic physical andemotional needs and reducing the impact of separations.

What you can doRoutinc is important for children in this age group. If you bring inextra helpcrs, ask thenr to try to follow the sarne routinc.Create a familiar environment that can travel with the child. Thiscould be a travel cot that has the child's favourite blankcts and tovs.Your child could sleep in the travel cot at home and away.

Preschool children, 3-5 yearsChildren in this age group are beginning to understand the differencebetween being well and bcing sick.

They often think thc world revolves around thern and Lrelieve in magicalthinking, which means that wishing or hoping can make sorncthinghappen - likc wishing for a special Christrnas present. But it also meansthey believe thirt bcing naughty or thinking angry thoughts can makethings happen too. So it rnakes sense that a preschooler may worry thatrhey caused a parent's cancer, pcrhaps by being naughty.

What parents say

"I was worried about thefirst time my two boyssaw me without hair soI wore a bandanna.My three-year-old said:'Mum, you look like apirate.'l knew then thathe accepted how I lookedand that I had nothing toworry about."

Mother of two children,aged tbree and one.

A family's story

Melissa, mother of Maddy,2, and Anna, 4, was havingchemotherapy. Everyafternoon when she camehome after treatment,Maddy would check hermother's arm for the Band-Aid. lf she found one,Maddy would bring hermother a bowl rn case shehad to vomit. For monthsafter the chemo finished,Maddy continued to checkher mother's arm.



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Also, their main concerns are for themselves. They may be thinking:Did I cause it? Can I catch it? Who will look afrer me?sornetimes their feelings and words are separated - they will feel upsetbut their words don't express it. An example would be the four-year-old who announces,

all smiles, at preschool: "Guess what? My dad'sgof cancer!"

What you can doFind out what your preschoolers know by saying: *What do youthink cancer is?" Ask them to draw a picture ofcancer and thenexplain it.Ask them what they think caused the cancer by saying: ..How doyou think daddy got his cancer?"Set them straight by saying: "sometimes kids worry that theythought or did something to cause cancer. Kids never cause cancer."Reassure them that you are not about to die and there are ways tofrcat your diseasc.Help them to feel i'rportant by saying things like: ..1 love the picturesyou bring into the hospital."Maintain routines and limits, which help children feel secure. Bedtirnerituals can help ease fears of separation.

School-age ch:ldren, 6-12 yearsBy this age, some children know about cancer, but may not knowwhat causes it. They are likely to fill in their gaps in understandingwith their own thcories.

They have simple causc-and-effect logic. For example, it is commonfor children of this age to think that cancer is contagious, that allpeople with cancer die, and that smoking causes all cancer.

They usually understand the permanence of death, so they may askquestions about death.

This age group can feel guilty about things they have said or done to theparent and may try to be 'very good' to avoid troubling their parents.

School and best friends are often important ro them. School canprovide time out if things are stressful ar home. Many children of thisagc will want their lives to be as normal as possible and may not wanttheir friends to know that mum or dad has cancer. This means that,even if you are talking openly about your cancer at home, yourchildren may not want to be open with their friends.

A family's story

Pauline, who had breastcancer, looked after hergrandson, Kyle, two nights

a week. Kyle, 4, slept inthe same bed as hisgrandma. He liked tosnuggle close to her andwould often rest his headon her chest. After hermastectomy, Kyle wasn'table to stay for a whileuntil Pauline recovered.When he returned, Pauiinewisely realised that sheneeded to explain why herbreast wasn't there. Kylesimply accepted thechange, and occasionallywould whisper secretivelyto her: "We know you'veonly got one boobie. "

A family's story

Nicole and her nine-year-old daughter agreed toshare their feelings bywriting and drawing in thesame journal. Nicole wassurprised by how muchcame through in thejournal. Her daughterfound it easier to writeabout some feelings thantalk about them

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What kids say

"lfhen my mum wasdiagnosed I was only nineyears old, so I didn't

know how serious it was.All I knew was that mymum was sick and maynever get better. For mecancer didn't reallychange my iife heapsbecause I didn'tunderstand what cancerwas all about."

Julia, aged 14.

A family's story

Graham's wife hadadvanced cancer. Their1 3-year-old daughtel Ellie,wouldn't talk to him, andhe struggled to find waysto communicate with her.He found that simplyspending time togetherhelped them to stay intouch. Sometimes theywould sit on the loungeand watch TV together,and she would put herfeet on his lap and lethim massage them.Graham felt it was f llie'sunspoken way ofconnecting with him.

What you can doBe open and truthful so they don't fill in rhe gaps with their owninterpretation.Give them little tasks to help around the house and ro help you feel

better (eg, bringing you a glass of water). If they want to do more,let them.Reassure thern that cancer is not contagious, that its causes arecomplex and often unknown, and that smoking does not causeall cancer.Let thern know it's not selfish to enjoy themselves.Tell the school about your cancer (see page 21).Help your children to understand that what their schoolmates saymay not always be right. You could say somerhing like: "I knowTom says that cancer is really bad and I will get very sick, but Torndoesn't know everything about my cancer. I will let you knowexactly what is happening."

Teenagers, 13-18 yearsTeenagers have an adult understanding of cancer, and often wantdetailed infonnation about their parent's illness.

Teenagers are at a stage rvhen they are starting to separate frorl thefamily and to think about who they are as young, independent adults.This time can be turbulent enough, but if a parent is diagnosed withcancer, it can become even harder.

Teenagers can feel an overwhelming sense of responsibility to becorne

rnore involved and help out at a time when many of them are lookingfor independence. This conflict can make them feel frustrated and guilty.



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Teenagers' relationships with people outside of the family are imporranr.It's normal for teenagers to confide in an adult who is not a parcnt, suchas their best friend's mum. Their friends are also very important.However, relationships rnay becomc strained with their friends who arehaving trouble coping.

Some feens lnay worry that they will also get cancer) particularlydaughters of women with breast cancer.

Teenagers will worry about you, but they will also want to get on withlife - and this may cause problems.

What you can doCheck in with teenagers if they're okay and if they're gerting enoughinformation. They may not tell you what they're thinking or feeling.You can ask permission to see how they're going by sayingsornething like: "It's important for me that I check in with you arleast once a week to see how you're going. Is that okay with you?"This can help you feel better, and your teenager, even though theymay resist, rnay feel better too.Realise that even though cancer is tough, kids will be kids. Whenyou're feeling low, a teenager's normal behaviour can be upsetting,but it's no reflection on you or how much thcy care for you.Be carefui about assunring that the teenager should take a parentingrole with younger brothers and sisters. Some teenagers may behrppy to do this because they feel they are helping, but if they feelit has been dumped on them, it can lead to anger and stress.Understand that some teenagers may not want, or need, to talkabout the cancer. Keep providing the information without forcingthern to talk about ir.Encourage their relationships with other adults. If you say rhingslike, "It's good that you and (their best friend's mum, for example)worked that out together," it gives the message that you appreciateit, rather than think it is disloyal.Talk to them about how to find a balance between going out andstaying home. Let them know that you understand how difficult itis for them.Welcome their help with household chores but don't expec it. Ir'sreasonable to expect teenagers to help out. If they are given jobsthey can do, they will feel they are contributing. The key thing is tonegotiate what is fair, rather than taking the teenager for granted.Teenage girls are more likeiy to become stressed if they feel youexpect them

to do too much.Keep an eye on the information they're getting from the Internet.Explain that not all websites are reliable and that everyone'scase is different. See Chapter 8 for some reliable websites,including the excellent National Breast Cancer Centre site,www.myparentscancer.com. au/.

A family's story

Garry's wife Melinda hadadvanced cancer. Garrywas tryrng to take on the

role of primary carer oftheir teenage children.When the kids fought,Garry would get upsetbecause he knew thefightrng upset his sickwife. He would try to calmthem but lost patience andstarted yelling until allthree were in a shoutingmatch. Garry learnl to letthe kids settle their owndisputes. He alsoexplained to them that hewas trying to keep thingsquiet for his wife. Theythought their dad wasyell!ng at them for noreason. This simplechange in attitude had ahuge impact and allowedGarry to turn thingsaround at home.

From toddlers to teenagers - what to Say 15


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Children's reactions and needs at different ages

N ewbo rns/i nfa nts/tod d I e rs

Children'sunderstanding of illness

They have litlle awarenessof illness.lnfants are aware offeelings that parentsshow, including anxiety.They are aware of periodsof separation from parents.They can get upset whenthe presence of a physlcaland loving parent is

missing.Toddlers may react tophysical changes in theirparent or presence of sideeffects (eg, vomiting).

Preschoolers (3-5 years)


They have a beginning

level of understandingabout illness.Children may believe thatthey caused the illness(eg, by being angry withparents, thinking badthoughts). This rs anexample of magicalthinking.Children considerthemselves the centreof the universe. Theyare egocentric and thinkeverything rs related

to them.Chrldren may thrnk theycan catch the same thing.lllness may be seen aspunishment for being bad

Children'spossible reactions

fussy and crankycllngingchange in sleeping oreating habitscolicslight skrn rashtoddlers: tantrums. morenegativityre[urns to thu'-nb sucking,

bedwetting, baby talk etc

Children'spossible reactions

thumb sucking

fear of the dark, monsters,animals, strangers and theunknownnightmaressleepwalking

sleeptalkingbedweltingstutteringbaby talkhyperactivityapathyfear of separation fromsignif icant others(especially at bedtime andgoing to preschool)aggression (eg, hltting,biting)

Parents' possible responseProvide consistent caretaking bymaintaining baby's schedule.Ask family members and friends to helpwrth household tasks and care.Give plenty of physical contact (patting,hugging, holding).Observe play for clues to theiradjustment.Provide daily contact to help them feelsecure.Express your feelings and fears withothers.Use relaxalron tapes, music or babymassage.

Pa rents' possible responseTalk about the illness with pictures, dolls,or stuffed animals. Read a p:cture book

about the illness.Read a story about nightmares or otherproblems.

Explain what they can expect; describehow schedules may change.Reassure them that they will be takencare of and will not be forgotten.Provide brief and simple explanationsRepeat explanations when necessary.Encourage them to have funAssure them that they have not causedthe illness by their behaviour or thoughts.Paraphrase for children what theirbehaviour might mean.Continue usual discipline and limitsetting provide outlets for aggressionthat are positive.Be sure children get physrcal activity touse up excess energy and anxiety.Assure them they cannot catch theillness.



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School-age children (6-12 years)


They are able tounderstand moreco'nplex explanationsof cancer diagnosis.Can understand whatcancer cells are.They still may feelresponsible for causingillness because of badbehaviour.

Children aged nine andover understand thatparents can die.

Children's possible reactionsirritable

sad, cryinganxiety, guilt, jealousyphysical complaints: headaches,stomach achesseparation anxiety at time ofgoing to school or away to camphostile reactions toward sickparent, like yelling or fightingpoor concentration, daydreaming,

lack of attentionpoor gradeswithdrawaldifficulty adapting to changefear of performance,punishment, or new situationssensitivity to shame andembarrassment

the illness situationdepressionanxietyworry about being dlfferentpoor judgmentwithdrawalapathy

physical symptoms: stomachaches, headaches, rashesmore likely to turn feelingsinward (so parents are less likelyto see reactions)

Parents' possible responseUse books to explain illness,treatment and potential outcomes.Assure them that they did not causethe illness by their behavrours orthoughts.Reassure them about their care andschedule.Tell them the other parent is healthy.Let them know how they can help.Take time to listen and let them knowyou care

about theirfeelings.

Address issue of parent dying evenif chjldren do not bring up the topic.See also ideas for preschool agechildren.

Provide plenty of physical and verbalexpressions of love.Talk about role changes in the family.Provrde privacy as needed.Encourage them to maintain activrtiesand friendships.lf there are problems, provideopportunities for counselling.Set appropriate limitsDon't rely on them to take on toomany added responsrbilitres.Provide resources for learning moreabout the disease and getting support.See also ideas for school-age chrldren.

Teenagers ( 13-1 8 years)

Children'sunderstanding of illnessThey are capable ofabslract thinkrng: theycan think about thtngsthey have notexperienced themselves.They are able to beginthinking more like adults.They are able tounderstand that peopleare fragile.They are able to

understand complexrelationships betweenevents.They are able tounderstand reasons forsymptoms.They are more likely todeny fear and worry inorder to avoid discussion.

Children'spossible reactions Parents'possibleresponsewant to be more independent Encourage them to talk about theirand treated like adults feelings, but realise they may find itanger and rebellion easier to confide in friends, teachersmay criticise how parents handle or other trusted people'

Copyright 2001 American Cancer Societl Inc. u,rvrv.cancerorg/bookstore. Reprioted with permission.

From toddlers to teenagers - what to say 17


19/47

J7Chapter

What parents say

"It's hard to think abouttalking to your kids whenyou are diagnosed. Youare so overwhelmed withyour own informationthat to stop and be calmand in control is hard."Mother of two teenagers.

Dealing with the diagnosis

Look after you rselfTelling your kids you have cancer is confronting and difficult. It'simportant not to atternpt it while you're in shock and still grapplingwith your own feelings.

You may have trouble helping your kids cope with cancer if you'restruggling yourself. You are facing a big emotional and physicalchallenge and will have to makc many decisions, but you don't haveto do it on your own.

Call in the cavalry. Family and friends will be keen to help out butmay not know how. Write a list of things they can do to help, or aska friend to co-ordinate offers of help.

Use support services. There are many services to help people newlydiagnosed with cancer. Some are listed in Chapter 8. A goodstarting point is the Cancer Council Helpline (13 11 20). For thecost of a local call, you can talk to an oncology nurse, who canhelp explain treatment options, provide emotional support and referyou to local services.

When to tellDeciding when to tell * and how much to tell initially - can be difficult,depending on the type of cancer you have and how much is kn


20/47

Talk through your fcelings with another adult. This can hclp you rodeal with your emotions before talking to your kids. You may chooseto talk to a close friend, family member or a spiritual adviser.Practise what you want to say. Parents often doubt their ability tcrfind the right words and to answer rricky questions from theirchildren. Role-playing the conversation with your partner, friend,relative or the oncology social worker at the hospital can show thatyou can do it. It means you've spoken the words and perhaps dealtwith some of the anxiety attached ro those words before you talkwith your kids.

The first conversationHow to tellThe choice of who tells the children may depend on how your familyalready communicates. In most two-parent families, one parcnt usuallydoes most of the talking, so ir rlay be best if that parent breaks thenews, ideally with the other parent present.

If possible, the key thing is that you tell your children before rhey startto worry.

Depending on the ages and temperaments of your children, you maydecide to tell thern separately or together. Ideally, you should tell thcrn ata time and in a place where they are most likely to listen and take it in.

Have a plan of what to say but be prepared for anything. If your planfalls over and you end up blurting out the bad news, don't panic.You have many conversations ahead of you and your children won'tbe darnaged by one discussion that doesn't go according to plan.

What kids say

"Mum was driving usover to McDonald's whenshe asked me about cancer

and what I knew about ir.Then she told me aboutdad's leukacmia - what itmeant, what it was doingand how it would afiecthin:. I was sitting in thecar park feeling pretryoverwhelmed."

James, aged 12.

"After dad told us, the sixof us sat around cryingand hugging one anotherfor some time. Despite thesadness of the occasionwe actually had apleasant dinner with lotsof laughter ... Our liveschanged from that day."

Lily, aged 17.

ln a nutshell

Tell your kids whathas happened.

Explain what willhappen next.

Leave them withfeelings of hope thateven though you areupset now, there willbe better times.

Assure them they willcontinue to be lovedand cared for.

What to sayTell them the basics in wordsthey can understand. Breakingthe news in the beginning canbe just a few short sentencesexplaining what you know sofar and what will happennext. You can use children'scancer books to help explaincancer terms (sce Chapter 8).

Find out what they alreadyknow. Ask your children whatthey know about cancer andthen deal with any myths(eg, you can catch cancer).

j rtll 3** *s.#"r i'li*; : l;*'*e I'.*n.,:Ci"-'- i

Dealing with the diagnosis 19


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What parents say

"\(/e were in shockourselves and found thesubject very emotional.

My small children didn'tseem shocked but wereworried and neededreassurance that thingswould work out."Father of two children, agedfour and ttuo.

"Talking is not the onlyway of communicatingahour feelings - in facr, itoften goes over the headof a young child. Ifithlittle children, it is usefulto use dolls or stuffedanimals to play out heingsick, having treatmentand getting well."Mother of three children,agcd 18, 16 and 10.

Ask them what they want to know. Onll' 2ns*.r questions that thekids ask, and don't assume they have the same fears as you. Avoidgiving too much information.Be honest and open. Don't be afraid to say yor"l don't know theanswer to a question. Say you'il try to find out the answer from thedoctor and let then.r know as sool1 as possible. Make sure youfollow through.Tell them what to expect. Let them know about changes ro rheirroutine that may happen (eg, mum won't be able to pick them upfrom school).Ask them who they want to tell. They may wanr to tell their bestfriend, the teacher, the whole class - or no one.Open the door. Your children may say very little when you first tellthem and not ask quesrions. Some kids need timc to absorb theinformation, but it doesn't mean they don't understand. Let themknow they can come back to you any time with questions and worries.Balance hope with reality. Tell your children that although cancercan be serious, many people get better and you are doing everythingyor can to be well.Listen. Let them know that they can talk to you about anything -even scary and awful feelings. You can't always take away thosefeelings, but you will understand and help them to cope.

Words you can useHere are some ways to tell younger and older children you have cancer.

For younger children"I haue an illness called cancer. Tbe doctor is giuing me some medicine

to help me get well. The medicine might also make me feel sick or tiredsome days, but otber days I uill feel fine.""I haue an illness called cancer. It means something is growing insidemy body that shouldn't be there. I am going to haue dn operdtion tohaue the cancer taken owt and some more treatment to make sure itdoesn't grow back."

For older children and teenagers"'We'ue bad some bad neus. I'ue got cdncer. We don't know wbat we'redealing with yet, but I'm going to haue surgery so that the doctors canhaue a look and find out."

"You know I'ue been sick a lefi lately. The doctors told me today tbatthe tests show I haue cancer. The good news is that I haue an excellentcbance of beating it."



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Ask for helpYou don't have to tackle the task of talking with your children aboutcancef on youf own. There are many ways to lessen the burden and toensure they hear a consistent message from people who are involved intheir lives.

Tell key adults. Think about other people who talk with your kids(grandparents, friends and housekeepers). Tell them about yourdiagnosis and your plan for talking to the children, so that you allsay the same things.

What parents say

"It is often helpful to talkto other parents whohave or have had kids ara similar age to yourswhen diagnosed. Talkingto another parent whohas travelled the sameroad can be helpful."

Mother of tuo children,aged 12 and three.

A family's storyGemma, aged 8, askedher mother, Gayle, to notpick her up from schoolbecause Gayle waswearing a wig. Children atschool had teased Gemmaabout the way her motherIooked. Gayle confrontedthe issue head on Afteraskrng permission fromGemma, the school andher classmates' parents,Gayle visited the class andspoke about her cancerand treatment sideeffects, and why she worethe wrg. Once the childrenunderstood, the teasingimmediately stopped, andthe children started tosupport Gemma.

Talk to other parents whohave cancer. Often the bestsupport and ideas come frompeople who have alreadybeen there. Talking withother parents makes yourealise you're not alone andgives you access to a wealthof creative ideas. Contact theCancer Council Hclpline (seeChapter 8) for ways ro gcr intouch with other parents.Ask a professional. Get sometips from the oncology socialworker, psychologist orother health professionals atthe hospital.

lnvolving the schoolIf things are wobbly at home, school can be a haven for your kic{s -a olace where they can be themselves with their friends and carry onlifc as norrnal. School can also be a source of support.

Here are some ways to involve the school that you may like to consider:Tell the principal and your child's reachers. They will know of otherparents at the school who have cancer and this rnay affect yourchildt perception of cancer (eg, if a parenr of a child at the schoolhas died of cancer).Ask the school to keep an eye on your children and to let youknow of any worrying changes, such as bullying. But ask the teachernot to probe

-some well-meaning

teachers could push too hard(eg, they may ask your child if they are okay r,vhen they are happilysitting on their own).Ask a parent of one of your child's best friends to help you keeptrack of notes, excursions, homework and events. rX/hen life isdisrupted at home, kids may feel doubly hurt if they miss out onsomcthing at school because a note gocs missing.

Dealing with the diagnosis 21


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What parents say

"Spend time together asa family. Speciai timesrogether will often openup questions from kids."Motber of tbree children,aged 18,16 and 10.

"lt helps to focus on whatis happening now. what isactually known - not allthe possibilities. One stepat a time. It is importantto reassure children thatyou are not going to dieimmediately, thar cancer isnot a death sentence andthat everything will bedone to ensure that you1ive. Children often haveunusual ideas about this."Mother of tbree cbildren,aged 18,16 and 10.

Answering key questionsHere are sotne ways to deal with the most comrlon questions that kidsraise at diagnosis.

Are you going to die?This is the question that most parents fear, but often it doesn't meanwhat you think. Firstly, try to explore what the child means, by saying:"Do you have a special worry?" or "rrVhat were you thinking about?"

Younger chiidren may really mean, "Can we still go or rhar holiday?"while older children rnay mean, "Who is going to look after me?"

Some children think that cancer is a death sentence, so explain thatmany people are cured of their cancer and that new treatments arebeing found all the time.

'Wordsto use"Some people die from tbe type of cancer I baue, but I plan to do

euerything that my doctor recommends to get better."

"'V/e're not planning on that, but I'll probably be sick for a wbile."

Am I to blame?Some children may ask you directly if they are to blame for your cancer,while others worry in silence, so it's best to confront the issue.

Words to use"It's no one's fault that I haue cancer. Nothing you did or said mademe get sick.""You can't make my cancer better or taorse, but you can make me lawghtuith a fitnny story."

"Don't euer think that you caused this cancer or tbat your behauiourcan make the cancer better or ruorse."

Can I catch cancer?A common misconception for many children (and some adults) is thatcancer is contagious. This belief can be reinforced after chemotherapywhen a patient has to avoid contact with people who are sick, becauseof the risk of infection.

Words to use"Yow can't catch cancer like you can catch a cold, so it's okay to beclose to me when I'm sick."

"No, euen though c(lncer can spread through a person's body, it can'tspread to anotber person."



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Who will look after me?Nflhen a parent has cancer, the most important thing for children iswhat will happen to thern and how will it affect their lives. childrenneed to know the basics: who will look after rhem, who wiil pick themup fror-n

school, and how roles will change. Try to give them as muchdetail about changes as possible, so they know what to expect.

For older children, it's irnportant to ask them what arrangementsthey prefer.

Words to use"\X/e will h7 to keep things as normal as ltossible, bwt there may be timeswhen I haue to ask dad/mum/grandpa to hellt out."

Do I have to tell other people about it?Your children lnay not know who to tell about your cancer and how

much to say. They may not want to say anything at all. So it helps toexplore their feelings about talking to other people - this can triggera discussion.

If you're planning on telling your children's teachers, counsellor orprincipal, it's important to let your children know.

Words to use"You dctn't haue to tell anyone, bwt would you like to speak to anyone?"

"Wbat comes into your mind uhen you think about talking to otberpeople about cancer?"

"You don't haue to tell anybody, but if you feel comfortable, it mighthelp."

What can I do to help?Answering this question can be a delicate balance. fu's great to allowthe kids to help our and conrribute, but it's imporrant that they don'tfeel overwhelmed with responsibility.

Words to use"Yes, there are lots of tbings you cdn do to help out. 'We can work outtogether what those things could be, and that will make things easierfor eueryone."

What parents say

"Let the kids know howmuch you appreciate thelitrle things rhey do. Givethem ways of helpingand looking after you sothey can share in yourtrearment and help makeyou better (eg, "I love theway you make my tea.It is important for me todrink lots of fluids.").Mother of three children,aged 18, 16 and 10.

Deal;ng with the diagrosis 23


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,rChapter 4 Talking about treatment

For many people, cancer is their first experience of maior illness, so it

can be difficultenough to prepare for chernotherapy, radiotherapy,

surgery and other treatlrent) lct alone prepare the kids.

But there are things you can do to help your kids understand and copcwith what is about to happen.

U ndersta nd i ng treatmentFirstly, it can help to understand the treatments and how they willaffect you. Don't be afraid to ask the doctor to explain anything youdon't understand. The ntrrses, hospital social worker and CancerCouncil Helpline (13 11 20) are also good sources of informationabout treatment options and side effects.

Once you have a good understanding of the treatment' you shouldfind it easier to explain it to your kids and answer their questions.

What do children need to know?The treatment planChildren often need inforn.ration to preparc thern for what is aboutto happen to you and how it will affect their lives. Just like you, theyneed to understand the treatment, why and how it is done, and theside effccts.

Again, let your children be your guide to how much they want to knowabout your treatment. Firstly, explain the basic facts of your treatment- using language they can understand (see table next page)'

Ask them what they understand so far and if they havc any questions.Make it clear they can corle back to you throughout your treatmentwith questions and conccrns.

What parents say

"I turned my yuck chemodays into 'treat'time forthe kids and me..We'd goto the video shop the daybefore the chemo to makea famlly selection. TheTV and video weremoved into my bedroomready for the next day.'When they came homefrom school/crdche, they'dcome to my room andwe'd watch the videostogether. I didn't takemuch in and often dozed,but at least we were all inthe same cosy room. Itmade the times veryspecial and somethingthat was positive to enjoyin the midst of all theawful treatment!"

Mother of two children,aged 12 and three.

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26/47

How to

Word

Cancer

Cells

Chemotherapy

Malignant

explain cancer words

To young children

Canceris when bad cells - or trouble-maker cells - stop the good cells from

doing their job. These bad cells can growinto a lump and can spread to other partsof the body

The body is made up of milltons of tinythings called cells, and each has a job tomake your body work and stay healthy.

Medicine that kills the bad cancer cells

Another word for cancer.

To older children and teenagers

Cancer is the name for more than 100drseases in which abnormal cells grow andrapidly divide These cells usually developinto a lump called a tumour. Cancer canspread to other parts of the body.

Cells are the basic building blocks of thebody. Our bodies constantly make newcells: to enable us to grow, to replaceworn-out cells or to heal damaged cellsafter an injury.

Special drugs that kill cancer cells or slowtheir growth.

Cancer. Ma|gnant cells can spread to otherparts of the body.

When cancer has spread from one part ofthe body to another.

Treatment that controls symptoms withouttrying to cure the cancer

The likely outcome of a djsease, especiallythe chance to get better.

The use of x-rays to kill or rnjure cancercells so they can't grow or multiply.

When cancer comes back because ofcancer cells that evaded treatment.

When cancer cells and symptomsdisappear because of treatment. Remissiondoesn't mean the cancer is cured, but thatit is under control for a period.

The unwanted effects of treatment suchas nausea, hair loss and fatigue fromchemotherapy andlor radiotherapy.

An operation to remove the part of thebody where there is canceT.

Metastasis(advanced cancer)

Palliative care

Prognosis

Radiotherapy

Recu rrence/relapse

Bemission

When the bad cells have travelled toanother part of the body.

Sometimes the doctors and nurses can,tstop the cancer from growing, and theywill give mum/dad medicine to makethem feel better and stop the pain, eventhough the cancer can't be stopped.

What the doctors think might happento mum/dad after treatment and theirchances of getting better.

X-rays or a laser beam that qoes into thebody to kill cancer cells and make thecancer smaller.

lf cancer cells are left in the body, theycan start to grow again, and the cancercomes back.

When the cancer goes away aftertreatment.

Side effects Problems that can make mum or dadfeel sick or tired or lose their hair aftertreatment. This is because the treatmentstops good parts of the body growinq aswell as the bad parts.

This is when mum/dad will have anoperation and a surgeon will cut outthe cancer.

Surgery

Talking about treatment 25


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What parents say

"Everyone respondsdifferently to treatmentbut when the going is

tough and you want to beselfish to get through theprocess, the family need tounderstand this. It can besurvival mode for a periodof time and you needsupport although you maybe seen to be selfish. Thefamily need to understandthat there are gooddays/weeks and baddays/weeks and when thegood ones come, it is timefor everyone to enjoy themwith special occasions."

lather of three cbildren, agedsix, fowr and ttuo, utbo wasdiagnosed witb bowel cancerwben bis wife was pregndntwith their first child.

"We found humour wasverv helpful. lVe jokedthat our daughter couldpaint my head. I alsoencouraged her to touchmy head and feel howstrange it felt anddiscussed how my hairwould come back. She wasvery upset when I cut myhair short before chemo!"Father of two cbildren, agedfour and two.

Explaining side effectsIt's important to prepare your children for treatment side effects, such aschanges in your body after surgery, weight changes, fatigue and hair loss.'Vfhen you talk about side effects, two important things to say are:

Not everyone gets all side effects. People who have the same cancerand treatment wili not necessarily have the same side effects. Yourdoctor knows what happens to most people who have your treatment,but can't be exactly sure what will happen to you. Tcll your childrenwhat the doctor has told you, and say you will tell then'r if you start toexperience side effects.

The side effects dont mean you are getting sicker. It's cclmmon forkids to get really upset on chemotherapy days, when they see youlooking sick, and worry that the cancer has progressed. Explain t


28/47

Offer them a tour. Before treatment starts, you may like to take yourchildren for a tour of the treatment centre or: hospital ward.

Primary schoolchildren are often interested in the science o{ rreatment.1X/ith notice, the cancer treatment centre staff may be able to arrange a

tour of the radiotherapy unit and explain how the technology works.This experience will mean your children can undersrand how it worksand can picture where you are and what you're doing during treatment.It rnay also he a conversation starter.

Hospital and treatment centre visitsCancer treatment can involve short but frequent visits to the hospital asan outpatient or inpatient stays. You might worry your children willbe stressed and anxious if they see you in hospital or having treatment,but it can be worse if they are separated from you and can't picturewhere you are.

Ask your kids if they want to go to the hospital or treatment centre.lf they refuse, don't force the issue.If they are keen to visit you, and you can rnake it happen, have a planto hclp the visit go smoothly.

'Iell them what they will see before they enrcr the room.Let them decide how long they should stay.Bring along a friend or relative, who can take the kids out of theroom if they feel overwhelmed and take them home when they'reready to go.If your kids are reluctant, their first visit could be in the ward

lounge room.Bring art materials, a book or roys to keep them occupied.After the visit, talk ro them about how they felt.

Living with uncertaintyOne of the many challenges of living with cancer is dealing withurcertainty. When first diagnosed, many people want a clear mapof what's going to happen and when it will be over. But with cancerthe path is not always clear.

You can communicate this uncertainty to your children by sayingsomething like; "The doctor is pretty confident that treatment willdo'xyz' , but if that changes, we'll let you know, and we may haveto look at another treatment."

what parents say

"One of my children wasdragged kicking andscreaming to the hospitaivisit, which lasted all ofone minute. It was oflittle benefit to anyone.You need to assesschildren individually. "Mother of two children, agedfour and one.

What kids say

"I aiways brought a packof cards so we could playas soon as I got to thehospital after school. Dadmade sure that there were

biscuits ready for methat he had taken frornthe tea lady that does therounds."

Belle, aged 12.



29/47

what parents say"l took the kids onweekend outings whilemy wife resred. Mv kidsand I set up an organicvegetable patch toprovide vegies for juices.,,Father of two children, apedl0 and eighr, uhose wife"had0reast cancer.

Family life during treatmentFinding a balanceIt's hard.to predict how you will feeldur.can do tt'inj' to irv to mainrain ,."r,n.r'l'fa'ffiJi::ll;;i'r.ou"ousometimes you have to strike a barance between d.ing regular activitiesnd coping with the effects .f ;;;;;;If vou or your parrner can,tet your children to their

"f,.._r.t,ooiu.iivities, maybe a friend orelative can hetp out. rf ,h"r,r;;;;;;riit., ,o, may have to cut backctivities for a while, but inuotu.-1io-ur."t,ta..n in the decision.Your children,s friends and activities can help them to cope.ncouraging a chird * ."..i"i;;;; f"r.;rire activity can herp theirense of optimism about tife i, s.;;;;i.'#h." ;.ili;1r;dd.i,pside-down, stabirity

"nd ,outi''.'"rr." i.ro, thern feel less anxious.

Doing your bestMany parents are keen to keep life as normal and stable as possibleor their kids whire tt.v a.'ui i,i;";. ;ilorions of cancer. But it cane difficulr to carrv on as normal when you are coping with cancernd rreatment side"ll::r, y;; il';;rtg"";rry abour nor being abte tofiftHi,',*1Tr:' with vour kid'',b';;;;.2,v' ;;; ;;;;1?."r uoThere are no easy answers to. this probrem, but you can make the bestt your good davs bv forgetting ,h. ;;;:;l"ld chores and doine funhings wirh rhe famiiv.,oi tr.,. ioi_r"_s".i'a"ys, if you .rnt i"i. pr.,n their activities. wrtch and .h.., i;o;;;h'e sidelines. On the days:_l:" r",, can'r cope *irh,ru.h l, ,li'l.i'r.rr kids know,

rather thanrotect them from the reality .f tr;;;;,1e feeling.Protecting family timel:l-l rrearmenr, .n._l l1t rnay be disrupted and unsertled, ir,sH?T:illto

protect the time vo,,r f",trilf-h", tog"th.r. irr.rl'iip,Limit visitors and rurn off the phone at meal times.Ask your friends ro scnd.an e_mail rather than call. Fror phone;;,T,;jjr,r};: ro rins -r,.n tr.,..hia,." *. at school ,,. *rii

3:?::Ttimes for the kids to show you their achievements of

Organise special activities (when you,re feeling up to it).Ask a close friend or relative to co-ordinate at offers frorn friends;'j jiil'J;ifig :xli ; ;,*r' ;i; .i, o,., m i, *;l;;; ;;.

A family,s story

Andrew, a single father,had brain cancer. His fourchildren were agedbetween one and fifteen.Andrew used to surf withhis older son but had tostop swimming becauseof seizures caused by thecancer.

lnstead, heworked on engines withhis son. He liked to playcricket with the twomiddle boys - aged nineand seven - but had tostop doing that as well, socneered them on from achair in the backyard.



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The emotions thermometerYour physical health and emotions will flucruate during and aftercancer treatment. It can sometimes be hard to let your family knowhow you're feeling and they may find it hard to ask.

An emotions thermometer may help. This is a simple device thatallows you to show how you're feeling each day. You can make oneyourself and ask the kids to help.

Decide on the feelings you want on the thermometer and make apointer that moves between the feelings. Put it up where evcryone cansee it, such as the fridge.

You can decide onthc feelings you wantto include on thcthermometer, but hereare some ideas:

Feeling sone pain -gentle hugs only.Feeling tired -offers of helpgreatly appreciated.I need a hug today.I need some spacetoday.Feeling great - let'sdo sornething fun.

Allowing children to helpMost children will want to help at home during freatmenr. If you letthem help, it can increase their confidence and self-esteem because itshorvs that you trust and need them. Even quite young children canhclp. It can take longer to let a three-year-old carry in groceries fromthe car, but they feel they're helping and contributing. It's importantto match the task to thc child's age and confidence.

With oider children and teenagers, it's reasonable to want them to helpmore around the house, but talk to them about it first.Teenage girls are often expecred to pitch in more than their siblings,which can take them away from their no.nal social activities, such astime with friends and chatting on rhe Internet. This can make themfeel worse at an already difficult time and can affect self-esteem.

So it's critical to negotiate tasks with teenagers - and share them equallyif possible.

'What parents say

"lt was also importantfor me to get some restduring the day so that Iwas bright and moreenergetic when the familycame home from schooland work in rhe evening.I didn't wanf them to feelthey had a sick mum allthe time - I was only sickfrom the treatment notfrom the disease."Mother of three cbildren,aged 18,16 and 10.

*q*



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A family's story

ln a family of threechildren, the father, Brian,had a brain tumour and

his personality changedbecause of the tumour. Atthe dinner table one night,four-year-old Emmaannounced, "l wish daddywas dead."

When her mother, Debra.calmly asked what shemeant, Emma said: "ldon't like the man who'sin my daddy's body. I wantmy real daddy back."

This is an example ofopen communication inaction. Debra could havescolded Emma, whichwould have been anunderstandable reaction,but instead she 'openedthe door'to find out whatEmma was really thinking.She was then able toexplain why Brian'sbehaviour had changed.

Maintaining limitsThe issue of discipline is a common concern of parents with cancer.Maintaining the family's usual limits and discipline can enhance yourchildren's security and ability ro cope.

Sometimes parents say they have trouble maintaining discipline duringcancer treatment. It can be hard enough to maintain family rules whenyou're fit and healthy, let alone when you're dealing with the emotionaland physical effects of treatment.

It's okay to bend the rules up to a point but try to maintain limits asbest you can.

Staying in touchIf you live in the country and need to travel for treatment, or if youhave extended hospital stays, you may be away frorn your farnily forlong periods.

The tips below can help you stay in rouch. They may also be usefulif you don"t have to leave home but want extra ways to comrnunicatewith your kids.

Ask your kids to do drawings and send you their arrwork.Read a favourite story together over the phone.\ifrite an old-fashioned letter. Kids love finding a letter addressed tothem in the mailbox.If you're away from home, have a set time to call horne each night.Send a tape-recorded message.Lcave notes and surprises for kids to find, such as a note in alunchbox.

How kids might reactChildren's responses during trearmenr are as varied as they are.Anger, crying and ernotional outbursts are some possible and normalreactions of children who have a parent with cancer. But if theirreactions seem unusual or extreme, think about getting some expertadvice (see Chapter 5).

'S7hen kids don't know how to cope, their fears can be channelled intoanger because it is a fami]iar response. An angry outburst can be achance to find out what's going on

-try not to shut it down and get

angry yourself.



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Answering key questionsls it going to hurt?Many children - and adults - are frightened of cancer because theythink it will be painful. But cancer doesn't always cause pain and, whenpain does happen, it can be relieved or reduced.

Words to use"Cancer doesn't always hurt, but if I baue pain, the doctors uill giueme medicine to make it go away."

Why do you look so sick when the doctors are meantto be fixing you?C)ftcr-r people who have cancer look perfecdy well when diagnosed. It'sonly when they have treatment and the side effects kick in that they starrto look sick. This can be

hard for children (and adults) to undersrand.Words to use"The doctors are giuing me strong medicine to kill the cdncer, but themedicine affects good cells as well as the cancer cells. Some days aftertreatment I will feel and look sick, but tbis doesn't mean the cancer isgetting worse. I will start to feel better after the treatment finishes."

Will your hair come back?Hair loss can be upsetting forvou and your children, so itcan help to be prepared so

the children know what toexpect and what you planto do about it.

Words to use"Tha doclor sa1's I migbtlose my hair because of tbetrertments. It will come back bwt may look a little different, especidllyat first. I can wear wigs, scarues or hats until it comes back."

Does radiotherapy make you radioactive?A common fear among children is that they can become radioactive by

touching you after radiotherapy. This is not possible and you may needto make this clear to your children.

Words to use"Radiotherapy doesn't hurt me. It's fust like hauing an x-ray. It is safeto touch me."

What kids say

"Mum developedlymphoedema, whichfilled her arm with veryheaq, fluid. Her specialisthad her arm bandaged up- as mum says, like theMichelin tyres logo-man."Mark, aged 10.

A family's story

Linda's two daughters,aged six and four, madeup a play in which Barbiedolls were the stars, Thegirls shaved the dolls'heads and put bandannason them. Linda joined inthe game and talkedabout what it was like forBarbie to go through thal'treatment'. The girls'game not only allowedLinda to talk about cancerand treatment in a relaxedway with her daughters,it showed her how muchthe girls had picked upabout her illness.



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J1Chapter 5 Getting professiona I help

What parents say

"I rhink all members ofthe famiiy shouid getsome form of counselling.My wife found it veryhard looking after: a sickhusband and rwo youngkids. \7e didn't have anyhelp either outside orfrom the family, as theylive overseas."

Father of tuo children, agedfowr and ttuo.

Many professionals and organisations can help y


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Psychologists and counsellors. These professionals can help you workthrough communication and behavioural issues. Call the CancerCouncil Helpline on 13 1l 20 for ideas on how ro find a psychologistor counsellor experienced in the area.Psychiatrists. Depending on thc seriousness of the situation, you mayneed to see a psychiatrist. You will need a referral frorn a GP if youare being treated privately.Cancer organisations. The Cancer Councii NS'$fl, Cansupport andCanteen all have programs that may help. See Chapter 8 for contactdetails.School counsellors. They are trained in child development and can bean enormous source of support and ideas.

When to seek additional helpThese two rules of thurnb

rnay help:If you are worried. A parent's instincts are usually pretty accurate.Some families can tolcrate and deal with behaviour that orherfarnilies find unacceptable. You need ro decide what is worrying inthe context of your family.If your child has changed behaviour and the change persisjs overtime. It's not unusual for a child to revert to less mature ways ofcoping, such as wetting the bed. Once or twice is okaS but if it goeson every night for a monrh, the child is ciearly struggling. Anotherexample is when a child refuses ro go to school. A child may saythey have a tummy-ache and are too sick for school, but they mayhave separation anxiety and think they have ro stay home to lookafter mum. The occasional reluctance to go to school is okay but ifit become s part of a pattern, it is a warning sign.

lf you feel overwhelmedResearch shows that a child's ability to cope is closely linked tohow their parents are faring. Kids often copy their behaviour fromtheir parents, so if mum or dad is depressed and anxious, their kidsare more likely to be too.

There are many sources of support to help you. For many people,

family and friends will be keen to help. You need to let them knowwhat you need, because they may not know the best way to help.They probably have a limrted understanding of what you are goingthrough and will be relieved that you can ask for help.

For more information about coping with cancer, call the CancerCouncil Helpline (1311 20\ for a copy of the free booklet, Emotionsand Cancer, or download it from www.cancercouncil.com.au/.

A family's story

This is a story of how acouple called in a teamof experts to help their1 4-year-old daughter copewith her father's terminalcancer.

At diagnosis, Srian'scancer was very advancedAlthough it was hard to besure, it seemed likely thathe would survive onlyanother few months.

Brian and his wife Jennyarranged to see theoncology social worker totalk through their optionsTheir daughtel Alex, didn'thave any behaviouralproblems, but they knewit would be a rough timefor her and wanted astrategy in place.

The social worker had twosessions with Jenny andAlex, and talked about howBrian's health woulddeteriorate, so Alex knewwhat to expect. They alsodiscussed how Alex couldmake the most of time shehad left with her father.

The social worker alsocontacted the counsellorat Alex's school, and metwith Alex and her threebest friends. Alex wantedto draw on their supportwhile her father wasdying and to know it wasokay to talk to her friendsabout him.

Gett;ng professional help 33


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'yChapter 6

what parents say

"Di{ferent people respondin dif{erent ways to

illness. People who youthought would besupportive are not, whileothers who have not beenthat close are extremelysupportive. Childrenneed to know that it isnot them or the parentwho is to b1ame. Instead,it is the inability ofpreviously close friends tocope with the situation.Children often feel letdown by their friends andfeel angry with thembecause they cannotunderstand theirresponse. Relationshipschange dramaticallybecause of cancer. "Mother of two teenagedaugh ters, p h o se h usbanddied from a brain tumour.

After treatment

How parents may feelEmotional effectsThe end of treatment is a time of relief and celebration, but it is also atime when many people havc mixed emotions.

After treatment, some people feel at a loss. \Vith more time and energyto think, some people start to attach meaning to the cancer.

This period can be unsettling and lead to changes, such as relationshipbreakups, and changes in work, diet and lifestyle. It is irnportant tocontinue communicating throughout this period as you and yourfarnily adjust to a 'new normal'.

One of the biggest fears for survivors may be that the cancer will comeback. This is an understandable fear, which can be triggered by regularcheckups and even minor achcs and pains.

Physical effectsThe physical effects can last long after the treatment is over - and somemay be permanent. Fatigue is a big problem for tnost cancer survivorsand can interfere with daily activities. Many have to deal withtemporary or permanent sidb effects, such as physical scars,lyrnphoedema, premature menopause, and fertility and sexuai problems.

How your children may feelLike many aduits around you, children rnay find it hard to understandwhy things simply can't go back to the way they were before the cancer.They've had to make adjustments while you were sick and now maywant to get back to normal.

Your children may also:Expect you to bounce back. Often children don't understand thcfatigue that lasts after cancer treatment.Become clingy. Separation anxiety that started during treatment maycontinue after you are well.

Worry that the cancer will come back. Recurrence is also a big fearfor children, just like it is for you.



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Tps for helping your children cope whentreatment is over

Celebrate your achievement of surviving cancer, and thank your kidsfor their contribution to your recovery. Acknowledge the sacrifices

your family has had to make; this is particularly important forteenagers.Be open about your ernotional and physical state, so your childrenunderstand if you're not bouncing back. Keep using the emotionsthermometer if you have one (see page 29).Be open about your fears, such as if you're feeling anxious before afollow-up visit. This may encourage your kids to talk about rheirfears when you go for a checkup.Explain changes that are being made to the famrly's lifestyle andnegotiate where possible.Encourage them to have fun. They have lived with tear for monthsand may need your permission to relax again.

Consider joining a support group. Many cancer survivors join asupport group to meet people who understand what they have beenthrough and undersrand how they're feeling. This can be animportant outlet, which will help you cope and will therefore bencfityour kids.

What parents say

"Let your childrenknow how you will bemonitored. It is importantto share new information,such as results of tests,and celebrate milestones. "

Mother of three children,aged 18, 16 and 10.

"My children are tooyoung to understandthar the cancer mightcome back and so wedidn't burden them withthis possibility. Insteadwe said that I was sick,had medicine and nowI'm fine."Father of tu,o children, agedfour and huct.

A family's story

Barbara, who had earlybreast cancer, had surgeryand chemotherapy. Shehad spoken openly andhonestly with her son,Tom, 14, throughoutthe experience. Whentreatment was over,Tom sa;d: "I wasn'tworried, mum. You alwaystold me the truth and Ibelieved you. "

Am&rS. frY,S'rmF*e#, trgru

After treatment 35


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What parents say

"It is a majorpsychological hurdle to bepositive after treafment.

It is a relief for it to beover, but during testsafterwards you alwayswonder if the treatmenthas worked. It takes timeto heal mentally and itcan take years, as was mycase. Every year was aneven better year, Thefamily need to understandthat life does not alwaysrefurn to normal mentallydue to a near deathexperience and they needto support this.Sometimes you get sickafterwards, but it doesn'taiways mean it is canceror related to thetfeatment. It may just bethe flu and children needto know this."

Father of three children, agedsix, four and tuo, ubo wasdiagnosed with bowel cancerwhen his wife was pregnantwitb their first child.

"This can be a strangetime. The patient, partnerandlor children may haveexpectations that life cannow return to normal.The patient and familymay have mixed feelingsand fears, and may feelless supported thanduring the diagnosis andtreatment period."

Mother of two children, agedeight and four.

Answering key questionsWill the cancer come back?You probably wish you could tell your children that everything will befine now, but the uncertainty of cancer lasts long after treatment is over.

'Words to use"The treatment is ouer and we all hope that will be tbe end of it.'We hope that the cancer won't come back and the doctors will keepa careful eye on me. lf it does come back, I'll let you know."As well as giving a positive message, this may be a chance to listen toyour child's concerns about "Iflhat if?" Allowing a child to talk abouttheir fears and concerns is important in helping them cope.

Why are you still tired?Cancer survivors often feel tired for many months after treatmentfinishes. This can be hard for kids, who want their old energetic mumor dad back.

'Vi/ords to use"l'm feeling a lot better, but it might take many montbs, euen a yeor,to get all my energy back."

Can't we get back to normal now?Words to use"Things will start to get

more like normal as I feelbetter, but there may besome changes, like I mighttake some time off workand baue a rest. Maybeduring that time we can findsome new things we like todo tctgether."

"'We'ue all been through a

l;tr,4r'rcd F*tsqlri.i

i

lot and I know it's been hard for you too. Things might not get backto exactly how they were before I got sick, bwt together we can find aneu way tbat works for all of us."



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,'l/When cancer wont go away Chapter 7How to talk with your children about advanced cancer can be veryhard to explain in detail in a booklet. The issues are complex,ernotional and personal. This chapter is a starting point for some ofthose difficult issues. If you want more information, talk to theprofessional staff at the hospital or the services listed in Chapter 5.

How parents reactWhen cancer becomes advanced, you confront difficult emotionalissues and the possibility of death perhaps more rhan at any other timeof your illness.

Many peopie say the news that the cancer is advanced is moredevastating than the original diagnosis. Significant anxiety anddepression are common and it can be harder to cope emotionally.However, people with advanced cancer who express their emotionsand communicate may find it easier to cope.

For some people, faith and spiritual beliefs can help them get throughtough times. For others, cancer can test their beliefs. Either way, youmay find it helpful to talk to your spir:itual adviser.

How children reactHow you react to advanced cancer can af{ect the adjustment of thewhole family. If you are anxious and depressed, the family may betoo. Some studies of people with advanced cancer show that familymembers often feel more distressed than the person with cancer. Thisseems to be more common where there is a lack of communication.Some people avoid talkrng about the advanced cancer because theydon't know what to say.'When cancer is advanced, your children may have sirlilar but moreintense reactions than when you were first diagnosed.

Children (12 and under)They rnay worry about the well parent.They may think that they, or their behaviour, caused the cancer robecorne advanced.

Teenagers

One of the biggest issues is that teenagers are striving for independencewhile feeling drawn back into the family.They may hide their feelings ro prorect you.They struggle with not being able to do their normal social activiries- this is a significant loss for teens.

A family's story

Jonathan's father wasdying of lung cancer. Hehad told Jonathan, 16,about the cancer, but notthat he was dying.However, his mother hadtold him. Jonathanbecame stressed andupset because he knewhis father was dyingbut couldn't talk to himabout it.

When cancer won't go away 37


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ln a nutshell

One way to deal with theuncertainty of advancedcancer is to prepare forthe worst and hope for thebest. Most people whoprepare for the worst sayit's liberating because theyfeel prepared for anything.

A family's story

Tom's mother hadadvanced cancer, and herprognosis was not good.When lom, 12, asked hisfather Keith, if his mumwould be okay, Keith'sfirst instinct was to say:"Yes, of course she willbe mate. "

But realising he needed totell the truth, Keith said,"I really hope so, butsometimes l'm scaredthat she *on'1 5s " Thisopen response allowedthem both to talk abouttheir feelings.

Keeping the door openIf cancer becomes advanced, it is more important than ever to keeptalking with your children. Again, iust as with diagnosis, children maysense that something ts happening, and not telling them can add totheir anxiety and distress.

Show them that they can talk about it and ask questions. You can sayto them: "It's okay to talk about this; you don't have to protect mefrom scary feelings because you're worried about ine'"

What information do children need?If the cancer is advanced and unable to be cured, your children mayneed to know how rnuch time you have left. What you say depends onthe cancer, the inforn-ration you have, and the age of your children.

'With some cancers, the prognosis is fairly clear and people willknow that they may only have months to live. However, more peoplewith advanced disease are surviving for a longer time, sometimes formany yeafs.

Facing a parent's death: how differentages reactIn preparing children for the possible loss of a parent' it can be helpfulto understand what death means to kids of different ages.

ToddlersVery young children have some sense that something is happening.They often confuse death with sleep. While they don't understand thepermanence of death, children as young as thrce can grieve.

Ages 3-5Preschoolers understand the concept of de

when a parent has cancer how to talk to your kids

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