Booklets

Advanced Cancer/Matepukupu Maukaha

Breast Cancer in Men: From one man to another

Bowel Cancer/Matepukupuku Puku Haumuti

Bowel Cancer and Bowel Function: Practical Advice

Breast Cancer/Te Matepukupuku o ngā Ū

Cancer Clinical Trials

Complementary and Alternative Medicine

Chemotherapy/ Hahau

Eating Well/Kia Pai te Kai

Emotions and Cancer

Got Water?/He Wai?

Lung Cancer/Mate Pukupuku Pūkahukahu

Melanoma/Tonapuku

Prostate Cancer/Matepukupuku Repeure

Radiation Treatment/Haumanu Iraruke

Secondary Breast Cancer/Matepukupuku Tuarua a Ū

Sexuality and Cancer/Hōkakatanga me te Matepukupuku

Understanding Grief/Te Mate Pāmamae

Brochures and DL cards

Being Active When You Have Cancer

Talking to a friend with cancer

Being Breast Aware

Bowel Cancer Awareness

Gynaecological Cancers

Thermography

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Talking to your children about your cancer

The first section covers the why, who, when, how and what to tell a child. There are some examples of what a parent or caregiver might want to say. It includes typical responses of children according to different ages and developmental stages.

Coping with the changes

The second section includes information to help you to think about your children's thoughts and feelings. We suggest things to say and do, depending on the ages and developmental stages of your children. We cover some issues you may want to consider if you are not going to recover, and how you and other adults can help your children face the future. It includes comments on the value of keeping life as normal as possible.

Sharing experiences, good and bad

The third section is about sharing experiences, good and bad. It contains suggestions on activities for your family/whānau, particularly things to do if a caregiver is in hospital. The emphasis is on positive approaches that should help families strengthen ties and express their love for each other.

If you're not going to recover

The fourth section is about talking with your child(ren) about your prognosis, your plans for who will care for them, and ideas for providing them with 'heirlooms', such as photo albums and recordings.

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Why should children be told?

• A child has a right to know about anything important that affects their family/whānau, as cancer does.

• Children know something is wrong. If you try to protect them by saying nothing, they may have fears or ideas which are wrong or worse than the real situation.

• Not talking about cancer may suggest it is a subject too terrible to be discussed.

• Children may find out the truth from someone else, or get misleading information from TV or other sources.

• Children can feel isolated if they are not told. They might feel they are not important enough to be included in a family/whānau matter.

• If your children know about your cancer diagnosis they will be less confused by the reactions of others.

• Younger children may notice things but misunderstand what they mean, which leads to confusion, for example, "Grandad died in hospital. Now Dad has to go into hospital. He is going to die too" or "I was cross with Mummy when she told me to pick up my toys, then she was ill. Maybe I made her ill".

• Children who know the situation can be a comfort and support to you. You won't need to feel secretive and isolated in your own family/whānau.

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• Children have an amazing ability and capacity to deal with truth. Even very sad truths will relieve the anxiety of too much uncertainty. We cannot take away their sadness, but we can share our thoughts and feelings, give them information about what is happening, and give them our support.

Who should tell the children?

• You should - if you think you can keep fairly good emotional control. It is alright to cry. Seeing you cry gives children permission to cry too. You will know in your heart if you can be the one to tell them.

• If you feel that you cannot tell your children yourself, perhaps a close relative, or friend, or your doctor or other appropriate professional could support you. Even if you cannot talk to them about it yourself at first, it will help if you can be there. Let them know why you find it difficult to talk about it and that you are still adjusting to the news yourself.

It may help to have another person there for support. Explain to the children that they too may like to choose someone special as their support person when they need to talk about cancer. Sometimes children do not tell their parents their worries or concerns as a way of protecting them or not adding to their stress. Encourage them to think of someone else that they trust and feel comfortable with and they can talk to.

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When should I tell the children?

• After being diagnosed explain what is wrong.

• When you are being treated explain how the treatment is given, what the side effects might be, and whether things will be different at home.

• After you finish treatment explain to the children that you will tell them about your health and about any changes.

• Be willing to talk whenever a child asks questions or seems concerned about your health. It can be helpful to take your children to treatment. Talk to the staff first so they can spend time explaining things to your children.

How should I tell the children?

• At first you may want to talk to children individually. They may need to know different things because of age or development level. Later, it might be comfortable for you to talk about some things together as a family.

• You may want to practise what you will say and anticipate what questions your children might ask (see "Different ages and stages" later in this booklet).

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• You will want to talk in a language each child understands - some children understand more when you draw pictures or use books, or both. See the list of books at the end of this booklet.

  • Assure them they will still be loved and cared for.

  • Listen to them.

  • Let them know it is okay to ask questions. Answer their questions simply. Ask them if they have understood your answers.

How much should I tell the children?

Children need to be given information they can understand in 'bite-sized' pieces.

• Tell them what has happened.

• Explain what will happen next.

• Leave them with thoughts and feelings of hope that even though you are upset now, there will be better times.

• It is okay to use the word 'cancer'. You could explain that while cancer is a serious illness, the doctors have a plan for the best way to treat it.

• Timelines need to be linked to real life. For example, if you are going into hospital for two days, say it will be just like a weekend. If chemotherapy takes four hours to run, say it is as long as two movies.

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• Correct any wrong ideas they may have.

• Be as clear as you can about how your cancer will affect your family.

• Let them know feelings as well as facts.

Some don'ts:

• Don't lie.

• Don't trouble them with frightening medical details, money worries (unless it will directly affect them), test results that are not in yet.

• Don't make promises you may not be able to keep. (Say "I think I will be able to or "I'll try to…").

• Don't be afraid to say "I don't know". (Find out later if you can.)

• Don't push children to talk.

Some ways to say things:

• "I have an illness. It is called cancer. The doctor is giving me medicine to help me get well. Sometimes I will feel sick or tired and sometimes I will feel fine. Dad/Grandma/Auntie will help me take care of you until I feel better."

• "Being ill makes me feel sad. You are a help but it's alright for you to feel sad (or angry or happy or whatever)."

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• "There was something growing in my body that wasn't supposed to be there. It is called cancer. The doctors took it out in the operation I had. Now I will have treatment so it doesn't grow back. If you have any questions about cancer, you should ask me. Sometimes you hear frightening things about cancer. I will tell you what we know about my cancer."

• "The cancer is trying to grow again. That makes me angry and sad too. I have to take very strong medicine (or have another operation or radiation treatment) to try to get rid of it. Doctors know a lot about taking care of people when this happens. We are doing the best we can. We think it will work."

• "Having cancer in our family makes all of us think and feel lots of different things. I know there are times when my cancer makes us frustrated or sad or worried. Remember that there are still lots of times when playing and having fun and going to school are important. I love to see you smiling and laughing but if you find you are feeling angry or sad, come and find me and we can work it out together."

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Different ages and stages

Helping children to understand your experience with cancer needs sensitivity and a good sense of timing. Children may go through the stages you are going through . disbelief, anger, re-organisation, hope and acceptance. They may have special needs because of their ages. During your illness, their needs may change.

Children's reactions and needs at different ages

Children's understanding of illness and the implications of bad news varies depending on their age and family experiences. These charts give an overview of children's different needs, which can be helpful when working out what to say to children and how you might respond to lessen the impact of the news on them.

Title: Newborns, infants and toddlers

Understanding of illness	Possible reactions	Suggested responses
They have little awareness of illness Infants are aware of feelings that parents show, including anxiety They get upset when the presence of a physical and loving parent is missing. Toddlers may react to physical changes in their parent or relative or the presence of side effects (e.g. Vomiting).	Newborn and infants: unsettled, especially if weaned suddenly Newborn and infants: may want to increase breastfeeds for emotional comfort Fussy and cranky Clingy Change in sleeping or eating habits Colic Toddlers: Tantrums, more negativity (Saying 'no') Return to thumb-sucking, bed-wetting, baby talk, etc.	Provide consistent caretaking by maintaining baby's or toddler's schedule. Give plenty of physical contact (patting, hugging, holding, extra breastfeeds) to help them feel secure. Ask family members and friends to help with household tasks and care. Observe play for clues to their adjustment. Use relaxation tapes, music or baby massage. Express your feelings and fears with others

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Title: Preschool and Kindergarten 3 - 5 years

Understanding of Illness	Possible Reactions	Suggested Responses
They have a beginning level of understanding about illness. Children may believe that they caused the illness, e.g. by being naughty or thinking bad thoughts – this is called magical thinking. Children are egocentric and think everything is related to them. Children may think cancer is contagious.	Thumb-sucking. Fear of the dark, monsters, animals, strangers and the unknown. Nightmares. Sleepwalking or sleep talking. Bedwetting, Stuttering or baby talk. Hyperactivity or apathy. Fear of separation from significant others (especially at bedtime and going to preschool). Aggression (e.g. hitting or biting). Repeated questions about the same topic, even if it has been discussed several times.	Provide brief and simple explanations about cancer. Repeat or paraphrase when necessary. Talk about the illness using picture books, dolls or stuffed animals. Read a story about nightmares or other problems. Assure them that they have not caused the illness by their behaviour or thoughts, nor will they catch cancer. Explain what children can expect; describe how schedules may change. Reassure them that they will be taken care of and will not be forgotten. Encourage them to have fun. Listen and be alert to their feelings, which they may express through speech and play. Continue usual discipline and limit setting. Let children get physical activity every day to use up excess energy, get rid of anxiety and to provide a positive outlet for any aggression.

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Title: Primary school 6 – 12 years

Understanding of Illness	Possible reactions	Suggested responses
Able to understand more complex explanations of cancer and basic information about cancer cells. They may feel responsible for causing illness because of bad behaviour. Younger children may be starting to understand that people, including parents, can die. Older children tend to understand the finality of death and its impact. If a child has been exposed to illness or death at a young age, they may have a more mature understanding of dying.	Irritable. Sadness, crying. Physical complaints: headaches, stomach-aches. Sudden worry about health of the well parent. Separation anxiety when going to school or away to camp. Regressive behaviour. Hostile reactions like yelling or fighting, including towards the sick parent. Poor concentration, daydreaming, lack of attention. Poor marks. Withdrawal from family and friends. Difficulty adapting to changes. Fear of performance, punishment or new situations. Sensitivity to shame and embarrassment. Trying to be extra good, with the risk that their distress and anxiety is not identified by parents – this is more common in girls.	Listen and be alert to their feelings, which they may express through speech or play. Use books to explain the illness, treatment and potential outcomes. Assure them that they did not cause the illness by their behaviours or thoughts. Reassure them about the care and schedules. Tell them that their other parent and other relatives are healthy. Let them know how you care about their feelings. Address the issue of dying even if children do not bring up the topic. See also ideas for younger children.

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Title: Secondary School 13 – 18 years

Understanding of Illness	Possible reactions	Suggested responses
They are capable of abstract thinking they can think about things they have not experienced themselves. They are starting to think more like adults. They are able to understand that people are fragile. They are able to understand complex relationships between events. They are able to understand causes and effects: relating to symptoms and illness or between actions and outcomes. They are more likely to deny fear and worry in order to avoid discussion.	Want to be more independent and treated like adults. Anger and rebellion. Critical of how adults react to or handle the situation. Depression or anxiety. Worry about being different. Poor judgement and risk-taking behaviour (e.g. alcohol abuse, smoking, staying out late, unsafe sex) Withdrawal. Apathy. Physical symptoms from stress (e.g. stomach-aches, headaches) More likely to turn feelings inward (so adults are less likely to see reactions) Regression: some lapse into pervious behaviours such as watching children's TV shows or being insecure and dependant on parents.	Encourage them to talk about their feelings, but realise they may find it easier to confide in friends, teachers or other trusted people. Provide plenty of physical and verbal expressions of love. Talk about role changes in the family. Provide privacy as needed. Encourage them to maintain activities and friendships. Set appropriate limits. If there are problems, provide opportunities for counselling. Don't rely on them to take on too many responsibilities. Provide resources for learning more about cancer and getting support. Make agreements that you don't always want to talk about cancer: you still want you and your kids to talk about homework, sport, friends, boyfriends/girlfriends, their part-time job etc.

Reprinted with permission from Cancer in the Family: helping children cope with a parent's illness, American Cancer Society 2001.

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Here are some ways you can encourage some expression and discussion in children or teens:

• encourage physical activity and sport

• run, jump, play, dance, walk to get stored-up energy out

• talk about what's happening:

  • with young children, using a doll house, puppets, stuffed animals or a phone

  • with teens, maybe while driving or taking a walk somewhere. It can be helpful doing something as you talk.

• drawing, painting

• clay, play dough

• take photos, make videos

• music - write songs, play songs, listen to music or dance to music

• storytelling and reading - see the booklist at the end of this booklet

• writing - stories, poems, a journal, or a letter.

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The unknown and the uncertainties

What makes cancer especially difficult are the many unknowns. Living with uncertainty is part of having cancer. There are some questions you will not be able to answer. Finding out as much as you can about your cancer may make things less scary.

Discipline

Discipline may be difficult because children can behave badly in order to get the attention they feel they are missing. But a breakdown in discipline can convince a child that something is very wrong at home. It is important to set consistent and familiar limits and find ways to enforce them - for your sake and for theirs. Communicate your understanding, love and acceptance of the children but not their misbehaviour. Reward good behaviour and let them know you especially appreciate co-operation now. Remember it wasn't always perfect before. (For teenagers: let them know the usual rules apply, such as curfew, expectations about behaviour, rules about drugs, alcohol, unsafe sex…)

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If you notice a consistent change in behaviour you may like to plan on spending some more one-on-one time with your child. Suggest that if it is hard to ask for your attention, they could use a sign or secret code that you have thought up together. They can, for example, put a magnet on the fridge next to a picture of the two of you when they need a hug.

Children's thoughts and feelings

If you never show how you feel or talk about your thoughts, the chances are they won't either, but covering up strong emotions is like sitting on a time bomb. A child can become frightened of his/her own thoughts and feelings instead of accepting them as normal.

You will have many feelings about your diagnosis. Don't be afraid to express them. If you are sad, cry. If the children are sad you can cry with them - it may help to ease the tensions. It is important to talk to them about how you think and feel and what you do to cope. Ask them to think of a time when they were angry or sad. What did they do to make themselves feel better? Would that work now? What else might you do?

Some children may:

• feel sorry for themselves when the person who cares for them is ill, and then feel guilty because they think they should feel sorry for the parent or caregiver.

• try to make up for those guilt feelings by being super good and setting impossibly high standards for themselves.

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• cling to you too much - afraid something will happen if they are not there.

• withdraw from you, unconsciously trying to become more independent in case something else happens to you.

• resent the fact that they need to help you when the opposite was true before.

• laugh and behave badly to cover up their real feelings or their lack of understanding (especially in strange situations).

• pretend to be ill to get attention or because they want to be with a parent. They might make a big fuss about a minor illness.

• be afraid they'll get cancer too, or that others they love might.

Let your children know that you understand and accept them. Talk to them about how they are thinking and feeling and if you notice changes in their normal behaviour. Remember that this may be their way of coping and that it is okay as long as it does not stop them participating in their usual activities, such as school. If you have concerns don't be afraid to ask for support. There are many other families who will have struggled with the same issues.

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Being together

If you need to, think of things to do together that do not require much energy - read, watch TV together, or write a story about your family/whānau and share it with them. Have play dough and other creative materials to use to work out some frustrations that you and the children share. Plan for laughter, such as watching a funny DVD together. Laughter is good medicine for all of you.

Here are some additional activities that you may want to try.

Benefits of sharing

You may be spending more time with your children and actually feel closer to them. Sharing emotions can really strengthen the bond between parents or caregivers and children.

Children can grow in their ability to face other difficult experiences in life. They can grow in independence and self-confidence. They may become more responsible. They may become more sensitive to the needs of others and more able to understand and love another person.

Cancer can bring out the best in people. You can take pride in their ability to deal with problems and find new solutions. Your whole family/whānau may discover reserves of love and inner strength that will enhance the rest of your life together.

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What about me?

• What will happen to me?

• Am I going to die too?

• Will others I love die too?

Talking about dying

"Although Mummy is dying, the family/whānau will stay together; we will look after one another. Mummy's love will always be with us and will help us."

Children need to know what will change in their family/whānau life and why, and the reassurance of knowing that some things will stay the same: "We will still go to the football match on Saturday".

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"Everyone is very sad that Mummy is dying. Sometimes it makes us all feel very angry too. It seems so unfair. It is no-one's fault. It is because of Mummy's illness."

Remember - no-one knows exactly when someone will die. Children need to have gradual explanations about what has happened and why, and what may happen next. When death is very near, children may need to know that: "We don't think Dad will live much longer now". "We think he will be weaker each day."

Older children may want to know something about how death will occur and may be reassured to know that: "Dad will become more deeply unconscious, his breathing will get much slower, with big gaps between the breaths, until eventually it stops altogether. Dad's heart will stop beating and he will be dead. It will be quite peaceful."

Here's an example of how death and a funeral can be explained to a child.

"When someone dies their body is no more use to them. It cannot feel pain, happiness, hunger or sadness. A dead body has stopped working forever. It is not like being asleep. A dead body cannot wake up again. A dead body is usually put in a special box called a coffin. Their coffin is either buried in the ground or burnt in a special oven called a cremator. This is known as cremation.

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A funeral is a time when everyone who knew Mummy will get together to remember her. Some people will cry, everyone will think a lot about Mummy. There will be special prayers and hymns/songs. We will play Mummy's favourite music. Uncle will talk about Mummy. Is there something that makes you think of Mum - a special song or story that you would like to share at the funeral?"

Feeling a part of this ceremony can give children a sense of belonging.

Tangihanga

Tangihanga is one of the most important cultural rituals of Māori. While it is an emotional time for all, it also unites members of the whānau, hapu and iwi who are affected by the 'mighty hand of death . te ringa kaha o aituā. The formalities begin with the karanga . the call of welcome by selected women . onto the marae. Women from the visiting group of mourners respond in kind. They are directed to seating while close members of the deceased's family may approach and sit beside the body. Formal speeches by the local male leaders begin and are replied to by males from the visiting group.

Speeches on the marae ātea are usually in Māori. However, if the body is held inside the meeting house, opportunities are given for women and even young adults to pay their respects in English.

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Children are an integral part of the mourning and fare-welling ceremonies, often being seated beside the open coffin. These speech formalities are completed by the hongi, the pressing of noses, between visitors and local people.

Young people are often seen working in the kitchen, providing food and drink as part of the process of removing the tapu from the visitors. This is called whakanoa. Tangihanga generally last for three days but may be prolonged for up to a week. Nowadays, tangihanga are also held in family homes, community halls and urban marae.

After the burial, the ritual of 'takahi whare' occurs to remove any lingering spirits, followed by a formal hakari.

The ritual of 'kawe mate' - taking the spirit of the deceased to related marae - takes place sometime after the burial.

After a year, the unveiling of a headstone - te hura kōhatu - takes place to commemorate the passing of a loved one.

Lee Smith

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Afterwards

You can help children face life afterwards by preparing them for the future without you. A letter or DVD from you to be read/viewed later can be very positive.

You can make a photo album or scrapbook with photos recording the child/children's babyhood and childhood, with messages about how you felt about your child at the time the photo was taken. You could select a special treasure that is significant to each of your children individually - this does not have to be a bit of jewellery or a family heirloom - something that they associate with a memory of you. Leave a story with it. You can, for example, leave their baby blanket, the shells you collected together at the beach, the first drawing they did for you. It doesn't have to be fancy or expensive, but these things show your children that you valued and treasured them and your times together.

Who is going to care for your children after your death?

As a parent or caregiver, it is important to sort out who will care for your children after your death. You may want to talk to a lawyer to ensure these details, along with your Will, are taken care of properly. For more information, contact your local Cancer Society or call 0800 CANCER (266 237). The Cancer Society has a booklet titled Advanced Cancer: A guide for people with advanced cancer that you may like read.

"It's very important to me to make sure you will be safe and looked after, so I've talked to mum/dad/grandpa about what is going to happen. We will talk to you about it as well."

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Books

Cancer in the Family: Talking to your children

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