Getting on with life after treatment
A guide for people after cancer treatment
Te hoki anō ki tō toioranga whai muri i te maimoatanga
Cancer Society of New Zealand/Te Kāhui Matepukupuku o Aotearoa
Adapted in accordance with Section 69 of the Copyright Act 1994 by the Royal New Zealand Foundation of the Blind, for the sole use of persons who have a print disability.
Produced 2013 by Accessible Format Production, RNZFB, Auckland
This edition is a transcription of the following print edition:
Cancer Society of New Zealand Inc., PO Box 12700, Wellington 6011
© Cancer Society of New Zealand Inc., 2013
Third Edition 2013
ISBN 0-908933-98-3
Any Cancer, Any Question0800 CANCER (226 237) Cancer Information Helpline
Acknowledgements
The Cancer Society would like to thank for their reviews, advice and contributions:
Health Psychologists at the Cancer Society Auckland
Associate Professor Chris Atkinson: Oncologist, St George Hospital, Christchurch and the Medical director of the Cancer Society of New Zealand
Meg Biggs, Julie Holt and Michelle Gundersen-Reid: Cancer Society Information Nurses
Phil Kerslake: Author of Life, Happiness... & Cancer, patient support advocate
Cheryl MacDonald: Breast Care Nurse, Palmerston North Hospital
Marie Glenys: Counsellor, Christchurch
Dr Sue Walthert MB ChB dip Obs FRNZCGP: Developer/Facilitator Bridge to Health Cancer Survivorship Programme Otago/Southland division, Cancer Society of New Zealand
Sarah Stacy-Baynes: Information Manager
We also thank the people who have reviewed this booklet and offered many valuable suggestions. Some of the material in this booklet is based on information published by the Cancer Council Victoria (Australia). The Cancer Society of New Zealand acknowledges their assistance.
The Society thanks the people who have experienced cancer and reviewed this edition, and offered many valuable suggestions. We also thank the Cancer Society volunteers who agreed to be photographed for our booklet.
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 for 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, healthy eating, physical activity and discouraging smoking.
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.
Other titles from the Cancer Society of New Zealand/Te Kāhui Matepukupuku o Aotearoa
Booklets
Advanced Cancer/Matepukupuku Maukaha
Bowel Cancer/Matepukupuku Puku Hamuti
Bowel Cancer and Bowel Function: Practical advice
Breast Cancer/Te Matepukupuku o ngā Ū
Breast Cancer in Men: From one man to another
Cancer Clinical Trials
Cancer in the Family: Talking to your children
Chemotherapy/Hahau
Eating Well During Cancer Treatment/Kia Pai te Kai te wā Maimoatanga Matepukupuku
Emotions and Cancer
Got Water?/He Wai?
Kanesa o le susu/Breast Cancer (Samoan)
Lung Cancer/Matepukupuku Pūkahukahu
Melanoma/Tonapuku
Prostate Cancer/Matepukupuku Repeure
Radiation Treatment/Haumanu Iraruke
Secondary Breast Cancer/Matepukupuku Tuarua ā-Ū
Sexuality and Cancer/Hōkakatanga me te Matepukupuku
Cancer of the Uterus/Matepukupuku o te Kopū
Brochures
Being Active When You Have Cancer
Being Breast Aware
Bowel Cancer Awareness
Gynaecological Cancers
Questions You May Wish To Ask
Talking To a Friend With Cancer
Thermography
Transcriber's Note
Images have been omitted from this e-text edition.
Page 1
Foreword
This guide identifies a very broad array of possible after-treatment stressors. However, it's important to realise that the after-treatment experience is different for everyone. After treatment you might experience a number of concerns or none at all.
Prevention is always better than cure. This guide provides many ideas to cope with possible hurdles to getting on with life after treatment. Relaxation techniques and exercise are good examples.
Emotional problems after your treatments such as stress, anxiety and self-doubt are common. This guide will give you some ways to cope and help you regain your sense of order and normality.
If you have emerged from your cancer ordeal feeling changed in some way, it may also be helpful to know that those who went before you managed to get through the challenges, with time. As is often the case, time can be a great healer.
However, a journey to a new sense of order can be exciting and ultimately rewarding too. Many people seem to find the outcomes of such a journey positive. Choosing to be proactive after treatment can both enrich the journey and smooth the way.
A cancer experience often provides people with a greater appreciation of the value of life. It can increase resilience and heighten self-awareness, fulfilment and joy. This can improve overall quality of life for both you and the people in your life.
Page 2
Life is about choice more than chance and today there is more support to help guide you with the choices you make than ever before. The Cancer Society of New Zealand provides a range of support measures and programmes to help you and your whānau with your recovery and welcome your contact at any time.
I wish you the very best in your journey ahead.
Phil Kerslake
Author of the book Life, Happiness and Cancer
Page 3
Getting on with life after cancer treatment
The information in this booklet was developed with help from people who have had cancer or who have cared for someone with cancer, and health professionals.
This booklet is for people who have finished their cancer treatment. It is about the feelings and challenges you may face now that your treatment is over and your focus has changed to carrying on with 'normal' life. We hope it will give you some of the information you need to help you do this.
Box:
Mā ngā tāngata kua mutu te whai i ō rātou maimoatanga matepukupuku tēnei whārangi pārongo. E kōrero ana mō ngā kare ā-roto me ngā mātātaki tērā pea ka puta inā kua oti te maimoatanga, kua huri hoki tō aro ki te whai oranga mōu e rite ana ki te toiora 'māori'. Ko te tūmanako, ka hoatu tēnei i ētahi o ngā pārongo e hiahia ana koe, hei āwhina i a koe ki te whakatutuki i tēnei.
End of Box.
Your family and friends may also find it useful to read this booklet. It can help them to understand that, although your treatment is over, you could still face difficult times. Their love and support will help you cope. The words in bold are explained in the list at the back (the glossary).
Pages 4 – 5
Contents
Foreword – Page 1
Getting on with life after cancer treatment – Page 3
Coping with your feelings after treatment finishes – Page 6
- Common feelings and questions – Page 7
- Understanding your feelings – Page 11
Reactions and needs of those close to you – Page 16
- When people who are close to you don't understand – Page 17
- Coping with your children's needs – Page 19
- Will my children inherit my cancer? – Page 22
Side effects of cancer treatment – Page 23
- Fatigue (extreme tiredness) – Page 26
- Feeling down or depressed – Page 27
- Pain – Page 28
- Neuropathy (tingling or numbness) – Page 29
- Changes in your sex life – Page 29
- Memory and concentration changes – Page 31
- Lymphoedema – Page 32
- Hormone changes – Page 33
- Bone and joint changes – Page 34
- Bowel or bladder changes – Page 34
- Loss of self-esteem and self-confidence – Page 35
- Heart and lung changes – Page 36
- Dental, hearing and vision changes – Page 36
- Second primary cancer – Page 37
- Skin and nail changes – Page 37
Fear of your cancer coming back – Page 39
- Managing your fears – Page 42
- Ideas that might help with fears – Page 43
- Knowing what to look for: the signs of a recurrence or a new cancer – Page 44
What I can do to help myself? – Page 47
- Not smoking – Page 47
- Regular exercise – Page 47
- Protecting yourself from the sun – Page 49
- Eating a healthy and varied diet – Page 50
- Some common questions answered – Page 52
- Learn how to relax – Page 56
- Keeping a record of your medical information – Page 59
Check-ups – Page 60
- Why do I need to have regular check-ups? – Page 62
- What happens during check-ups? – Page 65
- Coping with anxiety before your check-ups – Page 66
- Working after your treatment is over – Page 68
- Effects on employment – Page 69
- Challenges you may face if you do go back to work – Page 70
- Useful employment websites – Page 71
- Insurance, superannuation and loans – Page 72
- What if I can no longer work? – Page 73
Support services and resources – Page 74
- Cancer Society information and support services – Page 74
- Counselling – Page 74
- Cancer support groups/education programmes – Page 74
- Your general practitioner (GP) – Page 75
Websites – Page 76
Questions to ask – Page 77
Glossary: What does that word mean? – Page 78
Notes – Page 81
Feedback – Page 85
Page 6
"You're seeing somebody every day, day after day, and then suddenly it's 'goodbye, we'll see you in three months'. So you're left there on your own to cope with things."
Neil
Coping with your feelings after treatment finishes
It's common for people to feel excited and anxious when treatment finishes. During your cancer treatment it may have been hard to imagine that it would come to an end. You and your family may have focused on just getting through each day: getting to hospital appointments on time, having tests and dealing with side effects of treatment. You may have coped with many emotions and not thought much about life after treatment.
Page 7
"It took me a long time to feel more like myself."
Anne
Common feelings and questions
You may have thought life would return to normal once treatment was over. For many people who finish their cancer treatment, it isn't that simple. You may no longer feel as unwell as you did during treatment but you might not feel that great either. Knowing what to expect after treatment can help you and your family.
Box:
Tērā pea i whakaaro koe, ka oti ana ngā maimoatanga, ka māori anō tō toiora. Mō te tokomaha o te hunga kua mutu ngā maimoatanga, ehara noa iho i te mea māmā. Tērā pea, kāre i pērā rawa tō māuiui, i a koe e whai ana i ngā maimoatanga, heoi anō rā, ehara i te mea, kei te tino pai hoki to āhua. Mā te mōhio he aha ngā āhuatanga ka ara ake whai muri i te maimoatanga, e āwhina i a koe me tō whānau.
End of Box.
Pages 8 – 9
"As soon as the treatment finished, that was more of a shock. All of a sudden you're on your own. Having spoken to quite a few other people, they felt the same. Not that people have left you: I could call on anyone, I could call on the hospital, I could call on my doctors — but it wasn't the same, there wasn't active treatment going on."
Patricia
Most people go through a mixture of good and bad feelings after their treatment is over. Perhaps you feel relief and happiness that you have made it this far and your treatment seems to have been successful. But it isn't uncommon to feel unsure during the first few months. You no longer have regular attention and support from your nurses and doctors. Even if they have told you to call them if you are worried, you might not want to do that. Your family and friends may not visit or call you as much. You may get the feeling that the people around you are assuming that you are doing okay. Many people who have had cancer say they can feel very lonely and angry about this. But, at the same time, you may think that you should be able to cope, now your cancer has gone. It can become confusing.
Page 10
After completing treatment, it is normal to have concerns about your future and how you will cope. Like many people after cancer, you may feel:
- uncertain, not daring to believe that your treatment really has worked. Has the cancer really gone? How can you be sure? Will the cancer come back?
- in limbo and unsure how to start your life again or even if it is what you want right now: nothing feels secure or stable
- anxious about how you will be followed up: What tests will you need? How often will you have a check-up?
- worried about possible long-term side effects and how these may affect your work, social life and relationships
- lacking in confidence: How will you cope with the changes in your body image and sexuality that your cancer and its treatment may have caused?
- you don't trust your body like you used to.
Some people feel they need to make huge changes in their life. Others are happy with the way things were before their cancer diagnosis. This is okay. You don't have to make life changes.
Page 11
"[Following treatment] I felt very scared in a lot of ways, very nervous about what the future held for me."
Kerry
Understanding your feelings
Some people adjust fairly quickly after their treatment finishes. But for many people their problems and fears won't just go away. You may need a lot of love and support: maybe even more than you did during your treatment.
Box:
Tere tonu te whakatikatika a ētahi ka mutu ana tō rātou maimoatanga. Heoi anō, he tokomaha rātou, e kore rawa e hiki ngā raruraru me ngā whakamataku. Tērā pea, me nui tonu te aroha me te tautoko me whiwhi koe: nui ake pea ki tērā i whiwhi koe i te wā o tō maimoatanga.
End of Box.
Page 12
"Every day brings a new challenge. I think it's been both a curse and a blessing, when I look back on it."
Neil
Be kind to yourself during this time. Don't expect to feel great about everything. Go slowly so you can come to terms with all you have been through.
You may have days when you feel very down. Other days you may feel angry, fearful or frustrated. This is okay. Try to 'listen' to your feelings and accept them as they happen. It is better not to ignore negative thoughts. Most people who have had cancer say that they do feel better with time. But it usually doesn't happen overnight. Also, don't be surprised if, some time after your treatment (sometimes a few years), you have periods of feeling down. This is not uncommon.
Page 13
Box:
Tērā pea ka puta he rā, e noho tino taumaha ana koe. I ētahi atu rā, tērā pea kei te noho riri koe, kei te noho mataku, kei te noho hōhā hoki. He pai noa iho tēnā. Me whakarongo ki ōu kāre ā-roto, ka whakatau i ngā āhuatanga e puta ana. He mea pai te kore karo i ngā whakaaro kino. E ai ki te nuinga kua pāngia ki te matepukupuku, ka pai ake tā oranga, ā huri noa te wā. Ēhara i te me ka tere pai. Kaua hoki e ohorere mehemea, a tātahi wā whai muri i tō maimoatanga (i ētahi wā he nui tonu ngā tau), ka puta he wā tino taumaha ai koe. He āhuatanga tēnei e kitea ana.
End of Box.
Friends and colleagues may keep advising you to 'think positively'. This is very difficult when you are dealing with what has happened and how your life has changed. There is no scientific evidence that 'being positive' has any effect on surviving cancer although many people who have had cancer say that being positive helped them to cope through their illness.
If family and friends think you should be doing more and feeling happier, let them know that you still have a lot to deal with. You may get sick of others telling you that you look so well. It's normal to feel like this. Remember, go at your own pace.
If you feel very low for long periods of time, see your doctor (GP). You may have depression. This is different from the sadness and low moods many people have soon after their treatment. There is more about depression and its symptoms on page 27.
Page 14
Box:
Mēnā e taumaha ana koe mō te wā roa, haere ki te kite i tō rata (GP). Tērā pea kei te mate koe i te matapōuri. He mea rerekē ake tēnei ki te pōuritanga me te taumaha o te hinengaro ka pā ki te nuinga o ngā mōrehu matepukupuku whai muri i ngā maimoatanga.
End of Box.
Similarly, if you are experiencing ongoing health issues, it is important to speak to your doctor (GP). For more about long-term side effects see page 23.
If you don't feel like talking to those close to you about your feelings, there are several other services and people you can contact. These include:
- your GP and practice nurse
- experienced cancer nurses on the Cancer Information Helpline 0800 CANCER (226 237)
- a counsellor or a counselling service in your area (ask your local Cancer Society)
- Cancer Connect NZ arranges telephone peer support calls for people living with cancer and their caregivers. Call the Cancer Information Helpline 0800 CANCER (226 237) for more information
- Cancer Chat is an online support and information forum to join (
Page 15