Understanding Grief - Te Mate Pāmamae - A guide for people dealing with the death of someone close

Produced 2009 by Accessible Format Production, RNZFB, Auckland

This edition is a transcription of the following print edition:

Copyright © 2008, Cancer Society of New Zealand Inc. PO Box 12700, Wellington

First Edition 2001

ISBN 0-908933-47-9

Second Edition 2008

ISBN 0-908933-74-6

Publications Statement

Our aim is to provide easy-to-understand and accurate information on cancer and its treatments. Our patient information booklets are reviewed and updated by cancer doctors, specialist nurses and other relevant health professionals to ensure the medical information is reliable, evidence-based and up-to-date. The booklets are also checked by consumers to ensure they meet the needs of people with cancer.

Due to cultural differences around grief and death the Cancer Society of New Zealand feels that translating this booklet would be inappropriate.

Other titles from the Cancer Society of New Zealand / Te Rōpū Mate Pukupuku o Aotearoa

Booklets

Bowel Cancer/Mate Whēkau Pukupuku

Breast Cancer/Te Matepukupuku o ngā Ū

Chemotherapy/Hahau

Eating Well/Kia Pai te Kai

Got Water?/He Wai?

Lung Cancer/Mate Pukupuku Pūkahukahu

Melanoma/Tonapuku

Prostate Cancer/Matepukupuku Repeure

Radiation Therapy/Haumanu Iraruke

Secondary Breast Cancer/Matepukupuku Tuarua ā-Ū

Sexuality and Cancer/Hōkakatanga me te Mate Pukupuku

Understanding Grief/Te Mate Pāmamae

What Do I Tell The Children?/He Aha He Kōrero Māku Ki Āku Tamariki?

Brochures

Being Active When You Have Cancer

Talking To Someone With Cancer

Questions You May Wish To Ask

Contents

Understanding grief – 1

Grief is healthy and normal - 3

People grieve differently - 3

The circumstances of the death affect your grief - 5

Grieving doesn’t always begin when someone dies - 6

Grieving is an up and down process - 7

Grieving doesn’t last forever but… - 8

How long does it take? - 9

How does grief feel? - 10

Numbness - 10

Sadness - 10

Anger - 11

Loneliness - 11

Relief and peacefulness - 11

Guilt and regret - 12

Fear and panic - 13

Depression - 13

Rejection - 13

Confusion and forgetfulness - 14

Exhaustion - 14

Dreams and visions - 14

Physical effects - 15

Anniversaries and other special times - 15

How you can help yourself - 16

Helping children in your family - 20

How to manage if you feel stuck or desperate - 21

What professionals can offer - 22

Suggested reading - 23

Notes - 27

Page 1

Understanding grief

This booklet has been prepared to help you understand more about your feelings when someone close to you has died.

We hope this information will answer some of the questions you may have.

If you find this booklet helpful, you may like to pass it on to your family or friends.

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Transcriber's Note: Contents page in the original print version. End of Note.

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Grief is healthy and normal

Grieving is the process of adjusting to your loss and learning to live with the changes it brings to your life. Grief is often accompanied by strong and painful feelings that change frequently. This booklet aims to help you to understand some of these feelings. Not everything in this booklet will apply to you. You might like to reread the booklet in a month or so, when some more time has passed.

The most important thing to remember is that grieving is a healthy and normal response to loss. We all experience it from time to time.

People grieve differently

How people experience grief depends on a number of things. Among them are:

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Everyone responds to loss, and shows their grief in different ways. Often members of a family, all mourning for the same loss, misunderstand one another’s way of grieving.

Women often grieve by crying and talking about the person who has died and about how they feel. Men often grieve by doing things such as tidying the shed, painting the fence or playing squash. It’s often difficult for them to understand each other’s ways of grieving and can lead to tension between them.

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Remember there’s no ‘right’ or ‘wrong’ way to grieve. Sometimes people find that a death brings back memories of other losses from the past, and they find they’re mourning for those again too.

The circumstances of the death affect your grief

What happened in the hours and days before your loved one’s death, and at the time, can make a big difference to how you grieve.

If someone was terminally ill with a disease such as cancer, you may have had time to get used to the idea they are dying, to spend time with them and perhaps been able to talk about their death and what it will mean. This is often helpful in the months that follow, even though you may feel you can never be truly prepared for their death. If they die peacefully, you might find you draw comfort from that peace; there is perhaps a sense of acceptance about the loss, even if you feel sad.

Sometimes, even when a death is expected, when it actually happens it still feels like an unbelievable shock, especially if the person has rallied again and again in the past and you have come to feel that they will always ‘pull through’ somehow.

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If the death was very sudden, or happened in traumatic circumstances, it can take a long time to get over the shock and the sense of things being left unfinished or unsaid. A difficult and painful death can stay in your memory for weeks, months or years before it begins to fade.

Grieving doesn’t always begin when someone dies

When someone is ill for some time, they and their loved ones often begin to grieve for their death before it happens. While there may be a lot of attention taken up with caring for a very sick person in the family, there’s still often the thought: “How will it be when they are not here?” “How will I cope on my own?”

Sometimes people are shocked by how little they feel when their loved one actually dies. At times like this they sometimes comment that they feel they’ve done much of their grieving already. This is a normal response, and doesn’t mean that they’re denying the loss.

Sometimes people find that they’re not unduly affected by their loss at the time of the death, but find it harder as time passes and they experience their loss in a new way. Again, this is quite normal.

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Grieving is an up and down process

Grieving isn’t something you begin one day, move through step by step and emerge unchanged from at the other end.

People sometimes speak of the ‘stages’ of grief, but for most people it’s an up and down business: a bit like a roller coaster. Most find they move through it gradually, but don’t despair if you find yourself at the beginning again and again – that’s normal.

You might find there’s a time of day when you miss the person who has died or left most. Or it might be a song, a smell, an anniversary or doing something you used to do together that reminds you of them, and suddenly you feel upset again.

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Grieving doesn’t last forever but...

When people find grief particularly hard they sometimes worry that they’ll be this unhappy for the rest of their lives, but for most people it isn’t like that. After a while it doesn’t hurt as much as it did at the beginning, and surprisingly, you’ll find yourself enjoying things and feeling enthusiastic about life again. For a lot of people, coping with grief doesn’t mean getting over the loss; it’s about finding ways to live with it and adjusting to life being different. It’s not that it goes away, so much as that the loss becomes part of your life.

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How long does it take?

People often expect to be back to normal after just a few weeks or months. Friends and family can add to this expectation with comments, such as “Life has to go on. It’s time to pick yourself up and get on with living.” Often these messages feel like criticism, and you may feel you’re being told not to grieve any more.

For many people though, it’s at least a year before the loss is no longer overwhelming, and several years before they feel comfortable with it and able to take up the threads of life again. For some, grief never goes away completely, especially if the relationship was an important or long-standing one. When someone has died, you may continue to miss them from time to time all through your life. This doesn’t mean it will always feel as hard as it does in the early days, just that for you, it may continue to touch you from time to time. Remember it’s natural to feel upset sometimes, even when it’s a long time since the death.

Try to be patient with yourself. Many people make things harder for themselves by saying “I should be over this by now”. Don’t expect too much of yourself: giving yourself time to mourn is the best way to heal.

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How does grief feel?

Grief is not just sadness. It’s a whole range of feelings and experiences. Sometimes people are overwhelmed by the intensity of their feelings and wonder if they’re going crazy. If this happens to you, try not to worry too much: you’re not. Your mood may change quickly and often, but that’s normal too.

Numbness

At first most people feel nothing. They just can’t believe it’s true. It may feel like the person who has died has just gone on holiday and one day he or she will suddenly walk in the door and say, ‘I’m home again!’, or like you’re in a bad dream and one day soon you’ll wake up.

Shock helps us through the first days and weeks after a loss. Don’t feel you have to push yourself past this. The sense of numbness will start to fade in a few days or weeks, although it may return from time to time. As time passes the reality of your loss will become clearer.

Sadness

Sometimes you feel like you’ll never stop crying. You long to see the person so much you just don’t know what to do with yourself. At other times you might feel

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terribly sad but can’t seem to cry, even though you feel you are crying inside. It’s difficult to know which is hardest.

Anger

Most people feel very angry at times when they’re grieving. It’s common to feel angry with God, with the person who has died, with the fact of death, with yourself, with those who were involved with caring for the person who died, or with the driver in the car behind you for no reason at all! Sometimes there’s reasonable cause for this anger, but even if there’s not, the feeling will still be there and it’s real and normal.

Loneliness

Loneliness is very common for grieving people, particularly if someone you’ve been close to for a long time has died. You may miss having someone around to chat to about the ordinary events of life. It can be very lonely, too, when some time has passed and everyone around you has moved on in their lives, but you’re still feeling your loss keenly.

Relief and peacefulness

Relief is very common when someone dies. Sometimes it’s a relief that it has happened at last: that this death that you’ve been worrying about for months is finally

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a reality you can deal with, and you can get back to familiar routines. It’s also normal to feel glad that a person’s suffering is over, or relief that someone you had a difficult relationship with is no longer around, and you can begin a new life. Many people find that there were parts of the person who has died that were difficult to get along with, and that life is easier without these.

It’s hard not to feel guilty about this sense of relief – we often seem to be expected to ‘put someone up on a pedestal’ when they have died – but remember that they were human, with good points and bad ones, and you are too. Although you may be surprised by your feelings, they are a normal response to your situation.

Guilt and regret

You may feel guilty about the things you did or wish you had done differently, and there may be regrets for the way things happened in the past. When someone dies we lose the opportunity to change things. Try to remember that no one is perfect. Often, talking it over with someone else helps. You might also feel guilty for joking and laughing, or feeling happy at times. But it’s okay to do those things: we can’t grieve all the time; sometimes we need a break.

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Fear and panic

People often become very fearful when they have a major loss in their lives. You may feel terribly worried about other people you love, or fear for your own safety. Little things that were no trouble to you before can throw you, and you worry about how you’ll cope.

Depression

Some time after the loss, when the reality of it really sinks in, you may find yourself feeling depressed and unmotivated. A loss of self-esteem and a lack of direction or purpose are common, especially if you feel you’re taking a long time to come to terms with the loss. “Why me?” is a question people find themselves asking a lot.

Rejection

When someone dies or leaves, you might feel rejected and abandoned. People with a religious faith may feel that God has abandoned them, at a time when they particularly need support. Sometimes, too, people feel rejected by the friends they thought would be most supportive, or unwelcome at social functions because of their changed situation. Grieving people are often surprised by which people offer the best support; often it’s someone who has experienced a major loss themselves in the past.

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Confusion and forgetfulness

Frequently people find they are confused and forgetful, and even getting simple tasks done seems like a big hurdle. It’s as if your mind is filled with thoughts of what has happened, and you can’t concentrate on anything else.

Exhaustion

Don’t be surprised if you have no energy and feel constantly tired. Adjusting to major change is exhausting. You may find you can’t sleep well, or conversely, you may find you want to blot it all out and sleep all the time.

Dreams and visions

Dreams and nightmares are common after a major loss. When someone has died, people often experience them in some way. Hearing their voice, feeling their presence or sensing them around can be a common experience. If you believe people live on after death, you may find this comforting; if not, you may be frightened or disturbed by it. Sometimes, too, you might see them everywhere; catching sight of them in the distance in the street, only to find it’s someone else when you get closer.

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Physical effects

Grief is experienced in your body too: feeling tense and headachy, having no appetite and feeling sick, unexplained aches and pains, and a tight feeling in the chest are all common. If someone has died from an illness, it’s not unusual to have symptoms that mirror theirs.

These things are normal, but talk over anything that’s worrying you with your doctor. If lack of sleep becomes a real problem for you, tell your doctor about that too: a short course of something to help you sleep may make things much easier to deal with. Lack of sleep can make anybody’s day feel awfully grim.

Anniversaries and other special times

You may find that around the anniversary of the death (especially the first anniversary) and other special days such as your birthday, their birthday, wedding anniversaries, Christmas, etc. You may feel as if you’re back at the start of your grieving process. Don’t be alarmed by this as this is very common. Often the best way of handling this is to be prepared for it.

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Many people find planning activities with others around these times gives them a focus and provides support. Ideas include planning to visit the grave, planning a family dinner, visiting a beach or park that you know the person enjoyed, getting photos out to look at, using their favourite fruit cake recipe, lighting a candle, having flowers by their photo.

How you can help yourself

Grieving can be hard work, but the year or so ahead doesn’t need to be a time of constant sadness or distress. There’s always something you can do to help yourself through the dark patches. Here are some suggestions:

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Helping children in your family

When there’s a major loss in the family, everyone is affected, but in different ways. Children and teenagers feel grief just as adults do when someone close dies, but they may express it differently. They may express their grief in outbursts of anger, or by becoming very withdrawn.

The ways children and young people understand death and experience grief change with their age and development. Like adults, they need acknowledgement of their loss, support and the opportunity to understand and express their feelings. They need to feel part of what’s going on. They need the adults around them to model grief for them; to show them that it’s okay to cry or to be angry in ways that don’t hurt themselves or others. And they need to feel encouraged to cherish their memories.

‘Being there’ for your children is especially hard when you’re grieving yourself. Sometimes people feel they just don’t have any emotional energy left for their children.

Letting others help is important. Extended family, friends and school can make a big difference. Stay in touch with your child’s school or preschool so that their teachers are aware that your child is having a difficult time.

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Skylight is a national organisation which works specifically in the area of children and young people’s grief. It offers information and support for parents and professionals who work with grieving children. You can contact skylight at 0800 299 100, at PO Box 7309, Wellington South, or by emailing them at skylight@xtra.co.nz

It has an excellent website (www.skylight.org.nz) which has more detailed information on children and young people’s grief, on ways of supporting them and has resources which you can loan and/or buy.

How to manage if you feel stuck or desperate

Most people have times after a major loss when they feel they just can’t go on any longer. The pain of grief is too hard, or just doesn’t seem to be getting any better. Usually they find if they just ‘ride it out’, in a week or two things do pick up, and they realise there’s a pattern of good days and bad days, with the good ones gradually increasing.

But sometimes grieving people begin to feel ‘stuck’ in their grief, and become very depressed. They may begin to feel suicidal, as if not going on is a real option for them.

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At times like this it’s very important that you look for help from others. Don’t struggle on alone feeling desperate. Professional support can make a big difference. Talk to your GP, or to a grief counsellor (see below).

What professionals can offer

Hopefully you’ll have family or friends to support you through the next months but sometimes it helps to talk to someone outside. Perhaps at the moment you’re not feeling too upset by what has happened, but if you do find things difficult, bear it in mind.

It can help a lot to talk to a professional counsellor, particularly one who’s experienced in dealing with grief. They can’t do your grieving for you, but they can ‘walk with’ you for a while.

Counsellors usually charge on a sliding scale basis, and are occasionally able to offer a free service. Choose a counsellor who is part of a professional organisation, such as the New Zealand Association of Counsellors. If the first person you talk to isn’t helpful, don’t give up. Try someone else. Your local Cancer Society may be able to assist and will have information about suitable counsellors, support services and groups available in your area.

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This booklet is part of a series called Living with Cancer, which is published by the Cancer Society. These booklets, and booklets from the Understanding Cancer series can be viewed and downloaded from our website, www.cancernz.org.nz.

Suggested reading

Kath Beattie. Walking Backwards Into Your Future. Kath Beattie, Dunedin, 2007.

Melba Colgrove, Harold H Bloomfield and Peter McWilliams. How to Survive the Loss of a Love. Rev ed. Prelude Press, Los Angeles, 1991.

Michele Durkson (Ed). Memento – A Solace for Grieving. Clise Little, Brown and Company, Boston, 1996.

Ann K Finkbeiner. After the Death of a Child: Living with loss through the years. The Free Press, New York, 1996.

Helen Fitzgerald. The Grieving Child: A parent’s guide. Fireside, New York, 1992.

Thomas Golden. Swallowed by a Snake. Golden Healing Publishing, USA, 2000.

Pam Heaney. Coming to Grief: A survival guide to grief and loss. Longacre Press, Dunedin, 2002.

Virginia Ironside. You’ll Get Over It: The rage of bereavement. Penguin, UK, 1996.

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Joy Johnson. Keys to Helping Children Deal with Death and Grief. Barron’s Educational Series, New York, 1999.

Jeanne Katz, Moyra Sidell (Ed). Easeful Death: Caring for dying and bereaved people. Hodder & Stoughton, London, 1994.

Mal McKissock. Coping with Grief. Australian Broadcasting Corporation, 3rd ed. 1995.

Hamish McIlwraith. Coping with Bereavement. Oneworld, Oxford, 1998.

Therese Rando. Grieving: How to go on living when someone you love dies. Lexington Books, Lexington, Massachusetts, 1988.

Richard Stanton. When Your Partner Dies – Stories of women who have lost their husbands. Allen and Unwin, Australia, 1999.

Susan Wallbank. The Empty Bed. Bereavement and the loss of love. Darton, Longman and Todd, London, c1992.

Doris Zagdanski. Now That the Funeral is Over. Michelle Anderson Publishing, Australia, 1997.

Books for young adults

Earl Hipp. Help for Hard Times: Getting through loss. Hazelden, USA, 1995.

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Jill Krementz. How it Feels When a Parent Dies. Alfred A Knopf, New York, 1991.

Doris Zagdanski. Something I’ve Never Felt Before: How teenagers cope with grief. Hill of Content, Melbourne, 1990.

Books for children to read

Etan Boritzer. What is Death? Veronica Lane Books, USA, 2000.

Marilyn E Gootman. When a Friend Dies. Free Spirit Publishing, Minneapolis, 1994.

Mandy Hager. Tom’s Story. Mallinson Rendel, New Zealand, 1995.

Judith Bryers Holloway. Hine’s Rainbow. Mallison Rendel, New Zealand, 2001.

Sue Limb. Come Back Grandma. Random House, London, 1993.

Bryan Mellorie and Robert Ingpen. Lifetimes: A beautiful way to explain death to children. Bantam Books, New York, 1983.

Margaret Nild and Julia Vivas. The Very Best of Friends. Margaret Hamilton, Sydney, 1989.

Michael Rosen. Michael Rosen’s Sad Book. Walker Books Ltd, London, 2004.

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Pete Sanders and Steve Myers. Death and Dying. Aladdin Books, London, 1995.

Doris Sanford. It Must Hurt a Lot: A child’s book about death. Illustrations by Graci Evans. Multnomah Press, USA, 1986.

Norma Simon. The Saddest Time. Albert Whitman and Company, Illinois, 1986.

Alicia M Sims. Am I Still A Sister. Big A & Co, USA, 1986.

The Dougy Center for Grieving Children. 35 Ways to Help a Grieving Child. The Dougy Center for Grieving Children, USA, 2004.

Lois Tonkin. Everybody Hurts Sometimes: A book about grief for children & teenagers. Port Hill Press, Christchurch, New Zealand, 1997. Available from Skylight, ph 0800 299 100.

Susan Varley. Badger’s Parting Gifts. Lothrop, Lee & Shepard/HarperCollins, New York, 1984.

Judith Viorst. Tenth Good Thing About Barney. Aladdin Paperbacks, New York, 1971.

Margaret Wild and Noela Young. Toby. Ommibus Books, Sydney, 1993.

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Notes

You may wish to use this space to write down any questions for, or advice given by, your doctors, nurses or health providers at your next appointment.

Transcriber's Note: Blank page for your notes. End of Note.

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Transcriber's Note: Blank page for your notes. End of Note.

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Cancer Society of New Zealand Inc.

National Office
P.O. Box 12700, Wellington 6011
Telephone: (04) 494-7270

Auckland Division
PO Box 1724, Auckland 1140
Telephone: (09) 308-0160
Covering: Northland

Waikato/Bay of Plenty Division
PO Box 134, Hamilton 3240
Telephone: (07) 838-2027
Covering: Tauranga, Rotorua, Taupo, Thames and Waikato

Central Districts Division
PO Box 5096, Palmerston North 4441
Telephone: (06) 364-8989
Covering: Taranaki, Wanganui, Manawatu, Hawke’s Bay and Gisborne/East Coast

Wellington Division
52 Riddiford Street, Wellington 6021
Telephone: (04) 389-8421
Covering: Marlborough, Nelson, Wairarapa and Wellington

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Canterbury/West Coast Division
PO Box 13450, Christchurch 8141
Telephone: (03) 379-5835
Covering: South Canterbury, West Coast, Ashburton

Otago/Southland Division
PO Box 6258, Dunedin 9059
Telephone: (03) 477-7447

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Feedback

Understanding Grief / Te Mate Pāmamae

We would like to read what you thought of this booklet, whether you found it helpful or not. If you would like to give us your feedback please fill out this questionnaire, cut it out and send it to the Editor at the address at the bottom of the following page.

Transcriber's Note: Blank areas for you to fill in are indicated by the word blank. Tick boxes are indicated by the words (Tick box). End of Note.

1. Did you find this booklet helpful?

Yes (Tick box)

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Please give reason(s) for your answer: blank

2. Did you find the booklet easy to understand?

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3. Did you have any questions not answered in the booklet?

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If yes, what were they? blank

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4. What did you like the most about the booklet? blank

5. What did you like the least about the booklet? blank

6. Any other comments? blank

Personal information (optional)

Are you a person with cancer, or a friend/relative/whānau? blank

Gender: Female (Tick box); Male (Tick box)

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Thank you for helping us review this booklet. The Editorial Team will record your feedback when it arrives, and consider it when this booklet is reviewed for its next edition.

Please return to: The Editor, Cancer Society of New Zealand, PO Box 12700, Wellington 6011.

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Information, support and research

The Cancer Society of New Zealand offers information and support services to people with cancer and their families. Printed materials are available on specific cancers and treatments. Information on living with cancer is also available.

The Cancer Society is a major funder of cancer research in New Zealand. The aim of research is to determine the causes, prevention and effective methods of treating various types of cancer.

The Society also undertakes health promotion through programmes such as those encouraging SunSmart behaviour, eating well, being physically active and discouraging smoking.

We appreciate your support

The Cancer Society receives no direct financial support from Government so funding comes only from donations, legacies and bequests. You can make a donation by phoning 0900 31 111, through our website or by contacting your local Cancer Society.

Acknowledgements

The Cancer Society would like to thank for their reviews, advice and contributions:

Lois Tonkin- Writer, Christchurch

Marie Glenys - Counsellor, Christchurch

Meg Biggs, Julie Holt and Liz Wright - Cancer Society Information Nurses

Sarah Stacy-Baynes - Editor

Volunteers

Many thanks to the Cancer Society volunteers who agreed to be photographed for our booklets covers.

We also thank the people who have experienced grief, review editions and offer many valuable suggestions.

Photography

Cancer affects New Zealanders from all walks of life, and all regions of our beautiful country. Lindsay Keats of Lindsay Keats Photography took the photograph for our booklet cover.

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Cancer Society

For cancer information and support phone 0800 CANCER (226 237)

www.cancernz.org.nz