Supporting someone with cancer/Te manaaki i tētahi e māuiui ana nā te matepukupuku

Consumer reviewers

The Cancer Society wishes to acknowledge the input and expertise of our consumer reviewers.

Julie Holt, Michelle Gundersen-Reid, Viv Williams, Cancer Society Nurses

Sarah Stacy-Baynes. Information Manager

Photography

The Cancer Society would like to thank Tio Leota for his photography. Cover photo of Hagley Park in Christchurch was taken by Rob Suisted.

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.

Booklets

Advanced Cancer/Matepukupuku Maukaha

Bowel Cancer/Matepukupuku Puku Hamuti

Bowel Cancer and Bowel Function: Practical advice

Breast Cancer/Te Matepukupuku o nga Ū

Breast Cancer in Men: From one man to another

Cancer Clinical Trials

Cancer in the Family: Talking to your children

Chemotherapy/Hahau

Complementary and Alternative Medicine

Coping with cancer

Eating Well During Cancer Treatment/Kia Pai te Kai i te wā Maimoatanga Matepukupuku

Emotions and Cancer

Getting on with life after cancer

Living with dry mouth/Te noho me te waha maroke

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

Talking about grief and loss

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

Page 2

Carersair.net.nz

A place for family carers and friends to watch, listen, read, share, learn ... your place to close the hatch and unwind. http://www.carersair.net.nz/

Macmillan Support UK

"Working while caring for someone" is available on Macmillan's website: http://www.macmillan.org.uk

Young Carers UK

An innovative, online service for young carers from Carers Trust. http://www.youngcarers.net/

Cancer.net

This site has practical information for carers. http://www.cancer.net/

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Carersair.net.nz

He wāhi mā ngā kaimanaaki whānau me ngā hoa ki te mātakitaki, ki te whakarongo, ki te pānui, ki te tohatoha, ... tōu ake wāhi ki whakangaro i a koe anō. http://www.carersair.net.nz/

Macmillan Support UK

Ka taea a "Working while caring for someone" i te paetukutuku o Macmillan: http://www.macmillan.org.uk

Young Carers UK

He ratonga ā-ipurangi auaha mā ngā kaimanaaki mai i te Carers Trust. http://www.youngcarers.net/

Cancer.net

He pārongo pai mā ngā kaimanaaki kei tēnei paetukutuku. http://www.cancer.net/

Pages 5-7

The benefits of being a supporter

Supporting someone can be very positive. It can be very satisfying to know that you are making a difference. You might feel surprised and pleased with the way you handled the situation and the new skills you have learnt. Supporting someone with cancer can help you think about your values and what matters to you.

Spending time with the person with cancer can help build your relationship with them and be a rewarding time. Many people say that going through cancer leads to a better understanding of each other, improved communication and a stronger connection.

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The older person as the supporter

If you are an older person supporting someone with cancer, you may have difficulties with your own health. You may feel like you are the only one who can do the supporting.

You may need to think about:

• getting help with practical needs, such as housework, shopping, equipment, showering/bathing or meals

• how you will take on new tasks that you are not confident about, such as driving in the city, managing appointments or finances

• looking after your own health with regular visits to your GP, dentist, optician or other specialists

• keeping your family involved. You may be surprised about what they can do, such as helping with making changes to appointments, transport, running errands or coming to appointments with you. Often people want to help, but aren't sure how to. If there are some things they can take on, it can take the pressure off you and they will feel good for helping

• having regular breaks such as going for a walk or having a neighbour in to sit with the person you're supporting. Talk to a social worker or your GP who can assess your needs as a supporter

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• having someone to talk to about how you are coping

• looking for online support. Visit the Carers NZ website www.carers.net.nz.

• having after-hours phone numbers handy

• talking to the healthcare team about getting information about treatment

• checking your understanding of medications the person with cancer is having

• recognising your strengths and limitations.

Older supporters can receive further support over the phone, on the internet or in person. Contact a nurse on the Cancer Information Helpline 0800 CANCER (226 237).

Young people as supporters

Being a young supporter can affect your life in many ways. You may find that you can't concentrate at school or college, and that you don't have as much time to study. It could be hard to keep up with your friends. You may have to cancel plans to look after the person who has cancer.

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As a young supporter, you might do extra things to help your family—things that your friends won't necessarily be doing, such as:

• making dinner

• washing the dishes

• cleaning the house

• doing the food shopping

• washing clothes

• looking after brothers or sisters.

You may also be asked to do things for the person who has cancer, such as helping them get dressed or helping them with their medicines. You may be "there for them" to listen when they need to talk.

You may be worried about what's happening at home when you're not there. You may feel angry with the person you're looking after. You may feel neglected, and then feel guilty for feeling that way.

Being a young supporter is a big responsibility. And that can, sometimes, be really hard. But positive things can also come out of the experience. Things like becoming closer to the person you care for, learning new skills and feeling more mature.

It's very important to remember to look after yourself. You may feel like you have the weight of the world on your shoulders, or that you have to be strong for others. But you should only ever take on as much as you can handle.

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Ngā Tīwhiri

Me kōrero ki tētahi kua mōhio kē ki ēnei momo āhuatanga

• Whakapā atu ki a Cancer Connect mā te Kāhui Matepukupuku.

• Whakauru atu ki tētahi rōpū tautoko.

• Torotoro atu, kimi tautoko ā-ipurangi.

• Kōrero ki tētahi hoa.

• Kōrero ki tō minita, kaitohutohu ā-wairua rānei.

• Kaua e whakamā ki ngā āwhina ka puta ki a koe.

Pages 18-19

Feeling alone and lonely

Being a partner or supporter can be extremely lonely at times. Even if others offer help, you may still feel as though nobody else truly understands what you are going through.

Feeling frightened and anxious

Watching someone go through cancer and its treatment can be frightening. You may be fearful that the person with cancer won't get better or that you won't cope with the situation. The person with cancer may have their own fears, which may make it difficult to talk to them and share experiences.

Feeling sad and depressed

It's common to feel down or sad at times when you are caring for someone with cancer. You may feel sad about what the person has to cope with or what they have had to give up. If you are partners then you may feel sad about not being able to enjoy things together as you used to. For some people the sadness may not go away. You may begin to feel down nearly all of the time and not able to pull yourself out of it. If this is the case, you may have depression. Other symptoms of depression can include changes in your appetite or weight, sleeping problems and feelings of hopelessness.

Depression is very different from sadness. Depression is an illness that may need treatment. There is very effective treatment for depression, and the earlier you seek advice, the better. If you think you might be depressed talk to your GP.

For more information and support, go to Depression NZ (http://www.depression.org.nz/).

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Feeling guilty

Many supporters say they feel guilty.

You may feel guilty about:

• not being available as much as you'd like because of your other commitments

• not being able to do enough for the person with cancer

• knowing you are well and the person you are caring for is ill.

Te whakaaro hara

• Nā ō herenga whaiaro, kāre koe i te tino wātea i ētahi wā.

• Nā te pakupaku noa o tō tino āwhina i tō hoa matepukupuku.

• E ora pai ana koe ā, e māuiui ana tō hoa.

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Feeling frustrated

Your frustration may be related to many things: lack of time to do your own thing, or not being able to change the situation for the person with cancer. You may feel frustrated about waiting for appointments or test results. Talk to your cancer nurse or doctor about this. Although it's a very normal feeling, frustration can make you feel anxious, upset or even angry at times.

Coping with Waiting is an information sheet that has advice on coping with stress caused by waiting for test results and appointments. You can read this on the Society's website (www.cancernz.org.nz). You can also get a copy by phoning your local Cancer Society or a nurse on the Cancer Information Helpline 0800 CANCER (226 237).

Feeling angry

There may be times when you feel angry about what you have to do or how the person with cancer treats you. You may feel that they don't appreciate everything you are doing, or that they are only thinking about themselves.

Feeling resentful

It is very normal for partners or supporters to, sometimes, feel resentful. This may be towards the person you are supporting. You may feel other family/whānau members, friends or medical staff could be doing more to help.

Loving someone doesn't always protect you from resentment. If your relationship with the person you are caring for was "rocky" or had ended before they became ill, you may resent supporting them.

Feeling helpless

There may be times when you feel that there is nothing you can do to help. You can't take away the cancer or the pain. Many people say this makes them feel helpless or out of control. This can be especially hard for people who have always felt in control of life. Some people say they feel helpless as they have no medical background and feel overwhelmed when the person with cancer says things aren't going well.

Feelings of loss and grief

Many changes and losses occur with cancer. You may feel that you have lost part of your relationship with the person you are caring for. You may be missing work, people, regular exercise or an active social life. Certain family/whānau and friends may be staying away because they are not sure how to deal with illness. You may be dealing with an uncertain future and financial changes.

Ngā kare ā-roto mō te ngaronga me te pāmamae

Feeling stressed

Looking after someone with cancer will be different for everyone. It is likely to bring a lot of stress into your life as you both try to deal with the demands of the treatment and its side effects or other changes. Feeling tired, upset, angry or anxious can add to your stress.

Some symptoms of stress can include:

• feeling very tired but having difficulty sleeping

• becoming easily upset

• feeling anxious all the time or having panic attacks

• regular headaches

• aches and pains

• high blood pressure

• an increased heart rate.

A lot of stress can lead to misunderstandings and hurt feelings, avoidance and withdrawal. Refusing to talk or withdrawing is often a response to strong emotions, such as fear and anxiety. This can be difficult to handle. If the person with cancer refuses or avoids talking about what's happening, this can cause a lot of frustration for the supporter. If this is a problem, talk to a counsellor, close friend or a member of your family/whānau.

Try to accept that they have their own way of coping, and some people prefer not to talk about their cancer or don't yet feel ready to do so. If someone coped with life's challenges in this way before the cancer came along, it's

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likely they'll cope in the same way. It can help the person with cancer to express how they are feeling through other means (writing, art or music) if they're not "a talker" or confident talking.

Te pōkaikaha

• Te ngenge engari kāre e taea te moe.

• Tere hōhā.

• Te anipā i ngā wā katoa, me te puta ohooho.

• Te riterite o te ānini māhunga.

• He pākikini, mamae hoki

• Te toto pōrutu.

• Te pikinga o tō kapa manawa.

Being over-protective

Sometimes, partners or family members do more for the person with cancer than that person wants. They may stop the person with cancer from expressing any negative thoughts for fear of burdening them. While it may be done with good intentions, it can often make the person with cancer feel powerless and unable to talk about how they feel. Often, people with cancer will not express bad thoughts to protect their supporters if they think they are stressed or fragile. This is another reason why taking really good care of yourself will help the person you're supporting.

Kaua e tāmi tangata

Talking about cancer all the time

Either person may wish to talk about the cancer or their feelings and this can be a useful way of thinking things through. However, constantly talking about cancer may become exhausting or distressing; it can drag down the mood and make people feel like the cancer has taken over all aspects of life.

Key points

• Caring can be physically and emotionally demanding.

• Looking after your own wellbeing can relieve stress and tiredness.

• You may feel like your health and interests are less important than those of the person with cancer; however, it is important to take time for yourself, even if it's a few minutes a day.

• Supporters often forget to look after their own health. Try to eat well, get some exercise, rest and keep up your regular check-ups. Talk to your doctor about any health concerns, especially if you are feeling depressed.

• If you lift, move or physically support the person with cancer, get professional advice about safe ways to lift them.

• Life can seem uncertain at times. Learning more about cancer and treatment may help you feel more in control. You may also want to attend doctors' appointments with the person.

• Talking to friends and family or joining a support group can help you sort out your feelings and ways to deal with them.

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• Organise your time wisely and try to concentrate on one task at a time. Using a diary and getting help from others can relieve some of the pressure.

• Focus on the value of your caring role can make you feel more satisfied.

Looking after your own health

Supporters often forget to look after themselves. If you are caring for someone, your own health and wellbeing is very important as well. It's important to say when you're not feeling well or when things are getting "on top of you".

Tiakina tōu ake hauora

Don't expect too much of yourself

Sometimes you may feel like you could have handled a situation better. It's okay to make mistakes. Don't expect too much of yourself. No one is perfect; you're doing the best you can.

Adjusting to change

Cancer is not just one stressful event to be dealt with and moved past—it is a series of changing situations and demands.

You may need to:

• talk to your employer about what's happening at home and that you may need extra time off

• talk to your bank about changing financial commitments to make them more manageable

• check what help you might be entitled to through your medical insurance

• talk to the school about what's happening and the possibility of changes in routine if you have young children.

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Adjusting to shifting roles

When your loved one is diagnosed with cancer, there may be changes in family roles and routines. The person with cancer may not be able to manage all their usual roles and tasks. They may now be more dependent on you. You may have to take on roles that don't come easily or that you find hard to manage. Supporting the person with cancer to do things they are still able and want to do is important.

At first, a shift in roles may be difficult for you both. Talk together about how you are both coping with these changes. This may include doing less housework, simplifying tasks where possible or accepting offers of help from friends or family/whānau. Often supporters feel frustrated because their usual standards cannot be met. It can be helpful to talk to each other about this, and discuss what is most important. What you may value as important may not be to the person with cancer. Remember to be kind to yourself and keep things manageable.

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Ways of coping when the "going gets tough"

We all have our own ways of coping during bad times. However, many people supporting someone with cancer say they have times when they are "fed up" and struggle to think how they can deal with the situation.

Kia tau te mauri

• Whakaritea he kaupapa kotahi mō ia rā, ia rā, pērā ki te haere tūtaki hoa, inu kawhe me tētahi atu, he wā hei pānui pukapuka, hīkoikoi haere rānei.

• Me whakatūpato i a koe anō ki ngā tohu o te pōkaikaha, me te whai āwhina i mua i te rarutanga—inā kei te oho koe i te toru karaka ia pō, ia pō, me te kore e taea o te hoki ki te moe, tērā pea e pōkaikahatia ana koe. Kaua e takoto noa iho me te whakaaroaro noa iho te mahi, me ara ake ka haere ki te tiki inu, ki te whakarongo ki ō pūoro pai rawa kia pai ake ai tō whakatā. Ka taea e koe te whakarongo ki te kōpaepae Relax kei runga i te paetukutuku www.cancernz.org.nz, mā te whakapā atu rānei ki tō Kāhui Matepukupuku ā-rohe. Kōrero ki tō rata ki te kore e mutu tēnei āhuatanga.

• Me āta noho ki te whakaaroaro i ngā kare ā-roto e puta ana.

• Kaua e mataku ki te tono āwhina.

• He pai noa iho te tuku i tō riri, te tangi rānei, te whakaputa i ō kare ā-roto rānei ki mua i te tangata. Ehara i te mea ka noho harikoa koe i ngā wā katoa.

• Kōrerohia ō kare ā-roto me tētahi hoa tata, whanaunga tata, me rapu āwhina i tētahi kaitohutohu ārahi rānei.

• Mā te whakapono e āwhina ētahi ō rātou ā-kare ā-roto. Tērā pea ka puta he wero nui ki tō taha whakapono, engari, he mea āwhina anō kia pakari ake hoki.

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• Whakaritea he wā mōu ake.

• Whakaritea he pepa me tētahi pene hei tuhituhi i ō whakaaro. Tērā pea me mau ēnei te taha o tō moenga kei oho koe me te puta anipā, te okeoke rānei. E ai ki te nuinga, he āwhina te tuhi i ngā whakaaro.

• Me mōhio hoki, ka puta te mahi hē ki a tātou katoa—ehara tātou i te iwi harakore.

• Kia rata koe ki a koe anō. Ko te mea nui, kia mōhio koe ka taea.

• Kāre e taea ngā mea katoa, nō reira kaua e māharahara. Ka puta he rā tērā pea, kāore koe e hiahia ki te mahi i ētahi mahi, pērā ki te horoi kākahu, ki te whakapai rānei i te whare. Me whakapau kaha, e pai ana ki a koe.

• Me maumahara—e kore e taea ētahi mea te panoni!

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How counselling can help

When you support someone with cancer, you will have to deal with many things for the first time.

No matter how you're feeling, support services are available to you. Your GP or medical team can refer you to someone who can help you manage these feelings such as a counsellor or psychologist who will:

• help talk to you about any fears, worries or emotions you may have

• help you to think about your feelings of loss or grief

• help you and the person with cancer manage the effects of cancer on your relationship

• help you cope with problems so that you can find more pleasure in your life

• teach you ways to manage your anxiety

• teach you ways to relax by meditation or breathing techniques, or recommend someone who can

• help you communicate better with your family

• help you work out ways to manage things that are causing you stress.

To find a counsellor, contact your GP, your local Cancer Society or phone the nurses at the Cancer Information Helpline 0800 CANCER (226 237).

Page 47 Page 48

Listening to the person with cancer

Listening is an important part of communication because it gives the person with cancer an opportunity to talk about how they're feeling.

Ngā hononga me te tangata kei te manaaki koe, rātou ko ngā whānau me ngā hoa

Effects on your sexual relationship

If it is your partner you're supporting, you may find cancer and its treatment affects your sexual relationship. However, sex may be one of the things that makes life more normal.

Talking openly with your partner about sex can help. Speak to your partner about whether or not they need time and space to recover from treatment.

How it affects your sex life will depend on the type of cancer, the treatment and its side effects.

• Tiredness can make people lose interest in sex during and after treatment. This is called a lowered libido.

• Pain, medications and treatment can also reduce sexual feelings and desire. They can also affect someone's physical ability to have sex.

• A person's body may change after treatment, making them feel self-conscious and embarrassed.

• The stress of caring for someone with cancer may mean you, as a supporter, cannot think about anything else and have lost interest in sex.

• Many people worry that touching their partner will cause pain.

• If you provide personal care, such as showering the person or helping them go to the toilet, this can change the way you feel about having sex.

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There are some ways you may be able to improve your intimate relationship with the person who has cancer.

Ngā pānga ki ō hononga ai

• Tērā pea ka ngaro te hiahia ai i roto i te tangata i te wā o te maimoatanga, whai muri rānei i te maimoatanga, nā te puta o te ngenge. Kīia ai tēnei, ko te hekenga o te hiahia ai.

• Ka heke anō hoki te hiahia ai nā runga i ngā mamae ka puta, ngā rongoā me te maimoatanga hoki. He mea pā anō hoki ki te āheitanga ā-tinana ā tētahi ki te mahi ai.

• Tērā pea, ka panoni te tinana o te tangata whai muri i ngā maimoatanga, me te puta o te whakaaro kiri hihira me te whakamā ki a rātou.

• Tērā pea, kāre e taea e koe, i runga i ō kawenga hei kaimanaaki, ki te whakaaro mō te mahi ai, nā runga i ngā taumahatanga e pā ana ki te tiaki i tētahi tangata matepukupuku.

• He nui rātou ka noho māharahara mō te mahi whakapā atu ki ō rātou hoa, kei mamae rawa rātou.

• Mehemea ko koe te tangata e mahi ana i ngā mahi whaiaro, pērā ki te horoi i a rātou, ki te āwhina rānei i a rātou ki te haere ki te tiko, ka whakarerekē tēnei i ō kare ā-roto e pā ana ki te ai.

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Talking with family and friends

You may feel uncomfortable talking to the person with cancer because you think they have a lot to deal with already and you are meant to be their support. You can share your feelings with trusted friends, family/whānau members or a counsellor. You may be surprised how helpful some people can be. Help can come from unexpected places.

When friends stay away

Cancer can change friendships. Some friends handle it well. Others cut off all contact. Friends stay away for different reasons. They may not be able to cope with their feelings or what's happening to you may remind them of a difficult situation in their past. Your friends can care for you, even when they stay away, but often don't know what to say.

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Many supporters say they find keeping family and friends up to date on the condition of the person with cancer is tiring and takes a lot of time. They also find it stressful dealing with other people's reactions to the updates. The following tips may help.

Talking to your children about cancer

Talking about cancer with children or young adults can be hard. How you talk with a young person will depend on their level of understanding. For more information, download a copy of Cancer in the Family and Supporting your Young Adult Children when you have Cancer from the Cancer Society's website (www.cancernz.org.nz) or phone the Cancer Information Helpline 0800 CANCER (226 237) for a copy.

When your support is not wanted

There may be certain tasks that the person you are supporting doesn't want your help with, such as putting the children to bed or doing the shopping. It may be hard to step back and let the person with cancer do things for themselves, especially if you can see they are having trouble.

If the person refuses your offers of help, you should respect this. If you are worried about the person with cancer's safety, you could place a bell nearby so they can ring you if they need to. You may say that you can come back regularly. You can also talk to your doctor or nurse to get some help in the home.

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The person with cancer may do something that you do not agree with, such as refusing medications or wound care. If this happens, try talking to them about why they are feeling this way. Another family member or close friend may also be able to help. If this doesn't work, you should find support and advice from the healthcare professional. They may be able to discuss it more openly with the person with cancer.

If it doesn't work out

You might try to support the person with cancer but find it hard to cope with. Sometimes the changes in your relationship make it hard for you to give support. Don't feel bad about this.

It might help to get counselling, either alone or with the person with cancer. The counsellor can talk to you about ways to cope.

Ask your GP or call the Cancer Information Helpline 0800 CANCER (226 237) for information on how to get a referral to a counsellor.

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Organising your time

It may not be possible to do everything you want to do. You may need to manage your time.

Ngā āhuatanga ō te Kaimanaaki

Asking for help

You may want to do all that is possible to help, especially at first. If the condition of the person with cancer changes over time, you may have to take on more tasks.

Some partners or supporters say they feel as though they have failed if they can't manage all the responsibilities of caring by themselves. Others worry that asking for help will be seen as a sign that they are not coping, and their role will be taken away. You may feel that everything should be provided by the family and that outside help is not necessary. But by asking for help you may be surprised by how useful their support is.

Write a list of simple things people can help you with (for example, taking the kids out, shopping or collecting a prescription).

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Working with the healthcare team

As a partner or supporter, you're part of a healthcare team made up of doctors, nurses and other health professionals who specialises in treating cancer. In some treatment centres these health professionals work together closely—this is often referred to as a multidisciplinary team.

The team will talk about the needs of the person with cancer and plan the best treatment for them. They may also refer the person to other health professionals who can also help to support them through their treatment. Your family doctor/GP will also be kept up to date.

You may not be used to dealing with health professionals. You may feel overwhelmed with all the new and detailed information. It can be scary to go to a new clinic or treatment centre. Having one contact person in the multidisciplinary team (such as a nurse) can make it easier to understand what's happening.

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Te kapa toihauora

Including supporters in the healthcare team

Working with health professionals when you are caring for someone with cancer may vary some people have good experiences, while others may feel that their role is not acknowledged. If you feel you aren't being recognised as a supporter, talk to the healthcare team about your role. For example, some young supporters are not included in important conversations because the health professionals believe that the person is too young to be in the supporting role.

It's important that any conversation about the person with cancer happens with their consent.

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Confidentiality and sharing information

At times, you may be worried about the person with cancer and how to look after them. You may feel uncomfortable about asking the health professionals questions or that you are not being kept up to date with what is going on.

Professionals will only share information with relatives or a person chosen by the person with cancer. If the person with cancer would like the health professionals involved in their care to share information with you, they should let them know as early as possible.

Before you see the doctor

Before the visit, together:

• write down any questions you may both have so you can discuss them at the appointment

• list all the drugs being taken, the dose, and any side effects the person with cancer may be having

• write down any change in the person with cancer's condition.

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During the visit it can be helpful to:

• take notes during the discussion with the doctor

• write down any instructions

• check that you've understood what the doctor has said

• ask the doctor if they can give you printed information or tell you where to find further information

• refer to your GP if you would like a summary of the patient's notes. The patient will need to give their consent for this to happen.

After the visit it can be helpful to:

• read your notes

• write down when your next appointment is

• contact the GP or hospital about changes in the person with cancer's condition with their consent

• have a list of the many different health professionals involved, their roles and their phone numbers.

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I mua i te haere ki te rata

I mua i te haere, me mahi ngātahi kōrua:

• ki te tuhi i ngā pātai, kia pai ai tā kōrua matapaki i te hui

• ki te whakarārangi i ngā whakapōauau katoa e whakamahia ana e koe, tae noa ki ngā pānga puta e rongohia ana e te tangata matepukupuku

• ki te tuhi i ngā rerekētanga ki te āhua o te tangata matepukupuku.

I te wā o te hui, he pai:

• te tuhi whakaaro i te wā o te matapakinga me te rata

• te tuhi i ngā tohutohu ka puta

• te whakatau mārama ki ngā kōrero a te rata

• te pātai kia hoatu tārua o ngā pārongo, māna rānei e whakamōhio wāhi rapu pārongo ake ai

• me hoki atu ki tō GP mēnā kei te pīrangi whakarāpopotonga koe e pā ana ki te tūroro. Me whakaae rā anō hoki te tūroro.

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Whai muri i te hui:

• me pānui i ō tuhinga

• tuhi i te wā o te hui rata ka whai ki muri i tēnei ake

• ki te whakaae te tangata matepukupuku, whakapā atu ki te GP, ki te hōhipera rānei, e pā ana ki ngā rerekētanga ki te āhua o te tangata matepukupuku

• me whakarite i tētahi rārangi o ngā mātanga hauora katoa e whai pānga ana, ō rātou kawenga, me ō rātou tau waea.

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Managing medications

The person with cancer may be taking prescription medications (from the doctor) and over-the-counter medications from the chemist (for example vitamins or supplements). Keep a list of all of these drugs, their purpose, dose, when to take them and any side effects. This will help the person with cancer take them safely. It can also save time and confusion when seeing health professionals.

Te whakahaerenga rongoā

Oral chemotherapy: What you need to know

Oral chemotherapy is any drug you take by mouth to treat cancer. This is a treatment that is taken at home. Chemotherapy taken by mouth is as strong as other forms of chemotherapy and works just as well. Oral chemotherapy has the same side effects as chemotherapy given in the hospital.

When taking oral chemotherapy at home, the person with cancer will have been given clear instructions from their doctor on when and how to take it. As a supporter of someone with cancer it is important to know how to handle this medication safely.

Instructions are likely to include:

• how much and when to take the oral chemotherapy

• how to store and handle the chemotherapy drugs. Gloves should be used by supporters who handle the drugs

• that oral chemotherapy drugs must be kept in the container or wrapper they come in and must not be put in a pillbox

• unused doses need to be taken back to the hospital pharmacy for safe disposal

• that if the person with cancer cannot keep the drug down (because of vomiting) the hospital needs to be contacted

• that oral chemotherapy drugs should be taken with a large glass of water (not orange juice)

• that chemotherapy drugs should not to be crushed or cut in half

• that if a dose is missed (more than 2 hours later than usually taken) the person with cancer should not take double the dose the next time. Contact your cancer doctor or nurse if you are unsure

• that a missed dose should not be taken at the end of treatment

• keeping tablets away from children; store them out of reach.

Source: http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/chemotherapy/oral-chemotherapy

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Hahau ā-waha: Me mōhio koe

• kia pēhea te rahi o te rongoā hahau ā-waha me kai, me te wā hoatu ai

• pēhea te tiaki me te nanao i ngā whakapōauau hahau. Me mau karapu ngā kaiāwhina e nanao ana i ngā whakapōauau

• kia puritia tonu ngā whakapōauau hahau ā-waha ki roto tonu i te puoto, te kōpaki tākai rānei i whakamahia, ā kaua rawa e puru ki rō pouaka pire

• me whakahoki ngā rongoā katoa kāore i whakamahia ki te toa taka rongoā o te hōhipera, ā mā rātou e ruke

• mehemea kāore te tangata matepukupuku e āhei ki te kai i te whakapōauau (nā tōna kaha ruaki) me tere whakapā atu ki te hōhipera

• me inu ngā whakapōauau hahau ā-waha mā te karaehe wai rahi (kaua mā te inu wai ārani)

• me kaua rawa e kōnatinati, e tapahia kia hāwhe ngā whakapōauau hahau

• mehemea kua warewaretia te kai i te whakapōauau (tōmuri ake i te rua hāora i te wā tika mō te kai) me kaua rawa te tangata matepukupuku e tāpara i te horopeta. Ki te kore koe e tino mārama, whakapā atu ki te rata matepukupuku, ki te tapuhi matepukupuku

• me kore rawa te horopeta i warewaretia, e tāpirihia i te mutunga o te maimoatanga rānei

• te whakarite kia rokiroki ngā pire ki tētahi wāhi kāore e taea e ngā tamariki.

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Managing pain

If the person with cancer is in pain, they may become irritable, have trouble sleeping and find it hard to move around. In most cases, pain can be controlled throughout treatment with medications or other techniques. Talk to your cancer doctor or nurse if the person with cancer is experiencing pain.

Whakahaere mamae

Providing food and drinks

When the person with cancer is having treatment you may notice their appetite changes. Steroids can make you very hungry whereas chemotherapy can often change the way food tastes or can make you feel sick, so food is not enjoyed as it was before treatment.

Treatments such as chemotherapy and radiation treatment damage and kill cancer cells but also affect healthy cells. This may cause side effects such as:

• loss of appetite

• nausea (feeling sick)

• fatigue and tiredness

• mouth or throat sores

• taste changes

• constipation or diarrhoea.

If the person with cancer refuses food you have prepared, try not to take it personally; they are unwell and the treatment has changed their taste and appetite. Feeling sick and not enjoying food can last for months after treatment has finished.

You may worry because you want the person with cancer to eat well so they can cope with the side effects from the treatment and recover quickly. However, it's not necessary to follow a strict eating plan.

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A dietitian, doctor or nurse can provide advice on good food and drink to have during treatment. The Cancer Society has a booklet titled Eating Well During Cancer Treatment. You can get a copy at your local Cancer Society, by phoning the Cancer Information Helpline 0800 CANCER (226 237) or you can read it online on our website (www.cancernz.org.nz).

Te whakarato kai me te inu

Ka tūkino, ka whakamate ngā mahi maimoa, pērā ki te mahi hahau, ki te mahi iraruke hoki, i ngā pūtau matepukupuku, otirā, ka patu anō hoki ki ngā pūtau ora. Ka puta he pānga puta ki te taha, pērā ki:

• te kore hiakai

• te whakapairuaki (te hia ruaki)

• te hūhi me te ngenge

• te hakihaki ā-waha, ā-korokoro

• te rerekētanga o te rongo ā-kai

• te kōroke, te mate tikotiko rānei.

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Managing finances

Supporting someone with cancer can be a difficult time financially. There may be a drop in your household income if you or your partner have reduced work hours or stopped working. There may also be new expenses, such as childcare, transport, medication and equipment.

You may be able to get help with financial issues, such as budgeting advice, managing your mortgage and other expenses. You can talk to the hospital social worker about financial or practical assistance available. You may be eligible for financial assistance from Work and Income, volunteer organisations or church groups.

It can help to talk to your bank early if you need to re-arrange any finances.

You may be eligible for travel and accommodation expenses if you live a long way from the treatment centre. See the social worker about this.

Dealing with paperwork

Paperwork can pile up. You may have to keep track of bills, receipts and letters from health professionals. It's easier if you have them all in one place such as a folder, expanding file, a shoe box or a folder on your computer.

Working while supporting someone with cancer

It's up to you whether you say anything about your situation to people at work. However, they are unlikely to give you the support and understanding you need if they don't know what's happening.

It may be a good idea to find out about your employer's policy around supporting someone with an illness. You can do this by checking your contract, talking with Human Resources at your workplace or your manager.

Check with your employer whether they have an Employee Assistance Programme (EAP). EAP is confidential counselling and support service provided by your workplace.

For more information you may like to read the Cancer Society's Information Sheet Managing Cancer in the Workplace. You can get a copy of this at your local Cancer Society or by phoning the Cancer Information Helpline 0800 CANCER (226 237). You can also read it on the Society's website (www.cancernz.org.nz).

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Me mahi tonu

Kei a koe te tikanga mēnā ka whakamōhio atu koe i ō hoa mō tō āhuatanga. Heoi anō rā, e kore rātou e āhei ki te hoatu tautoko me he māramatanga, ki te kore rātou e mōhio, kei te aha koe.

He mea pai mōu te rangahau i te kaupapahere a tō kaiwhakawhiwhi mahi mō te taha manaaki i tētahi e mauiuitia ana. Ka taea e koe tēnei mā te tirotiro ki tō kirimana, ki te kōrero rānei ki te hunga Pūmanawa Tangata kei tō wāhi mahi, ki tō kaiwhakahaere rānei.

Me pātai ki tō kaiwhakawhiwhi mahi, mehemea e whai Employee Assistance Programme (EAP) ana rātou. He ratonga tohutohu me te tautoko matatapu te EAP, whakaratohia ai e tō wāhi mahi.

Mō te roanga ake o ngā kōrero, pānuihia te Whārangi Pārongo a te Kāhui Matepukupuku, arā ko te Managing Cancer in the Workplace. Ka taea he kape mai i tō Kāhui Matepukupuku ā-rohe, mā te waea atu rānei ki te Cancer Information Helpline 0800 CANCER (226 237). Ka taea hoki te pānui mā te paetukutuku a te Kāhui Matepukupuku (www.cancernz.org.nz).

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Supporting someone when you live far away

Living away from the person with cancer can be difficult. You may feel guilty for not being closer, and you may feel you are the last one to know about treatment and care. This can be frustrating when you want to stay involved.

However, there are many things you can offer to do for the person with cancer.

What is Enduring Power of Attorney?

The person with cancer may appoint you as their Enduring Power of Attorney while they are undergoing treatment. This gives you power to act on their behalf on all financial matters, and it will also enable you to do things such as pay bills and manage bank accounts.

An Enduring Power of Attorney differs from a Power of Attorney because it means you can act on behalf of the person you care for even if they cannot make their own decisions.

Consult a lawyer or the Public Trust for more details about this and advice about how to make legal arrangements.

Page 88

Te Mana Taimau Rōia?

E āhei ana te tangata matepukupuku ki te kopou i a koe ki te tū hei Mana Taimau Rōia mō rātou i te wā e whai ana rātou i ngā maimoatanga. Ka hoatu tēnei i te mana ki a koe ki te whai i ngā mahi ā-pūtea mō te taha ki a rātou, mō ngā take pūtea katoa, ā, mā tēnei hoki e whai wāhi ai koe ki te tutuki i ngā mahi, pērā ki te utu nama me te whakahaere i ngā pūtea pēke.

He rerekē te Mana Taimau Rōia e ai ki te Mana Rōia, i te mea ko te tikanga kē, ka taea e koe te mahi mō te taha o te tangata kei te manaaki koe, ahakoa kāre rātou e āhei ana ki te mahi i ō rātou ake whakataunga.

Me whai tohutohu i tētahi rōia, mai i te Public Trust rānei mō te roanga ake o ngā kōrero e pā ana ki tēnei, me he tohutohu e pā ana ki te mahi i ngā whakaritenga ā-ture.

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What is advance care planning?

Advance care planning or (ACP) is a process of thinking about, talking about and planning your future care. ACP gives everyone a chance to say what's important to them. It helps people understand what the future might hold and to say what treatment they would and would not want. It helps people, their families and their healthcare teams plan for future and end of life care.

For more information about advance care planning, visit this New Zealand site: http://www.advancecareplanning.org.nz/

Te mahi māherehere manaaki whakamua?

He hātepe te mahi māherehere manaaki whakamua mō te whakaaroaro, mō te kōrerorero, me te māherehere hoki i tōu ake kaupapa manaaki mō ngā rā kei mua. Ka whai wāhi te katoa, nā runga i te hātepe māherehere manaaki, ki te kōrero mō ngā mea whai take ki a rātou. He mea āwhina i te tangata kia mārama ai ki ngā āhuatanga tērā pea kei mua i a ia, me te whakaputa kōrero e pā ana ki te maimoa e hiahia ana rātou, kāre rānei rātou e hiahia. He āwhina i te tangata, ō rātou whānau me te kapa toihauora ki te whakatakoto mahere mō ngā rā kei mua, me ngā rā whakamutunga o te mahi manaaki.

Mō te roanga ake o ngā pārongo e pā ana ki te māherehere manaaki whakamua, torotoro atu ki tēnei pae nō Aotearoa.

Pages 90-91

Moving forward after treatment has finished

While the person with cancer is taking time to adjust to life after cancer, you'll also need time to rest and try to take up your life again.

Reactions and adjustments to life after cancer

After cancer treatment is over, like the person with cancer, you may have some strong feelings. What has happened to the person with cancer may make you question things about your own life and future. Your priorities may change: you may want to focus more on enjoying the important things in life, such as family and friends. This can be very positive. Your relationships may be stronger and more loving because of it.

You may be expecting the person with cancer to get back to "normal" life after treatment. As a supporter you may feel frustrated that this may not be happening quickly enough, and recovery is taking longer than you thought. It may be helpful to read the Cancer Society's booklet Getting on with Life after Treatment.

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Sometimes, it can be the supporter who is struggling to come to terms with what has happened to their partner/family/whānau member or friend. If you find that you are having difficulty moving on with life after cancer treatment you may benefit from talking to a counsellor.

When treatment finishes

There may come a time when your help is not needed as much. It may be because the person with cancer is getting better and trying to return to their normal life. This may make you feel a bit lost or unneeded.

You may think that you can slip back into your day-to-day life as it was before you became a supporter, but this can be challenging. Your life may also have changed. Going back to work or taking on other responsibilities you had put on hold can be overwhelming. Do things at your own pace and give yourself some time to adjust.

Talking about your feelings with someone you trust or a counsellor can help you understand the situation.

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Dealing with grief, loss and change

You may experience grief at changes, at loss of the future or at the prospect of someone dying. Many supporters experience grief all through the illness and before someone is dead. This can be normal. The grief experienced before a death does not make bereavement grief less intense or shorter.

If the person you care for dies

If the person you have been supporting dies, you may feel a range of emotions, including:

• sadness

• numbness and shock

• anger towards the doctors or the hospital, your God or the deceased person for dying

• relief that it's over

• guilt that you are thinking of yourself at this time.

All these reactions are common. Feeling relief or guilt is not a sign that you didn't care. These emotions may come and go and change in intensity over time.

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"Ehara i te tī, e wana ake"

Ka mate ana te tangata i manaakitia e koe, he maha ngā momo kare ā-roto ka puta, pērā:

• ki te pōuri

• ki te kēkerewai, ki te tumeke hoki

• ki te takariri ki ngā rata, ki te hōhipera rānei, ki tō atua, ki te tūpāpaku rānei mō tana matenga

• ki te piki o te wairua i te mea kua oti

• ki te whai hara nā te mea, kua whakaaro kē koe mōu ake.

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What is grief like?

Grief is different for everyone. Reactions vary, but may include:

• physical symptoms such as breathlessness, loss of appetite, crying and sleep problems

• confusion, trouble concentrating or visions of the person who has died

• a sense of disbelief

• relief that it's over.

Organisations such as Skylight (http://skylight.org.nz/), the hospital or palliative care services may have booklets on grief. Ask your healthcare team. Many public libraries have books on grief. Grief affects concentration: so a short booklet may be easier to read than a book.

For more information, read the Cancer Society's booklet Talking About Grief and Loss: A guide for people dealing with the death of someone close. You can get a copy from your local Cancer Society, by phoning the Cancer Information Helpline 0800 CANCER (226 237) or you can read it on our website (www.cancernz.org.nz).

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Te pāpouri?

He rerekē ngā āhuatanga o te pāmamāe ki tēnā, ki tēnā. Ka puta pea:

• he tohumate ā-tinana pērā ki te poto o te whakahā, te kore hiakai, te tangi me te kore moe

• te pōraruraru, te uaua o te mahi hihiwa, kei te kite rānei koe i te kēhua o te tangata i mate

• kāore tonu koe i te whakapono kua mate

• he oranga ngākau nā te mea kua mutu.

Mō te roanga ake o ngā kōrero, pānuihia te pukapuka a te Kāhui Matepukupuku, Talking about grief and loss: A guide for people with the death of someone close. Ka taea he kape mai tō tari Kāhui Matepukupuku ā-rohe, mā te waea atu ki te Cancer Information Helpline 0800 CANCER (226 237), ka taea hoki te pānui i tō mātou paetukutuku (www.cancernz.org.nz).

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Relaxation exercises

There are many different ways to relax. The following is a breathing technique you may find useful. For further information on relaxation, phone the Cancer Information Helpline 0800 CANCER (226 237).

Steps for successful problem solving

To start, make a list of all the challenges you are facing.

Put the problems into order—list those that need to be dealt with straight away first, followed by those that can wait for now.

If a problem feels huge or overwhelming, break it down into smaller problems. For example, coping with treatment may involve:

• sorting out transport

• arranging childcare and meals

• organising time off work

• managing financial worries.

Brainstorm: Take your most urgent problem, and list all the possible options for dealing with it. Make sure you include every idea, no matter how silly it may seem, as these ideas can lead to more flexible and creative thinking.

Weigh up the two or three best options: Consider what might happen if you follow it through—will it help you reach your goal?, who will it affect?, how much time and effort will it take?

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Decide upon the option or strategy (or combination) that seems best and then try it out. If it doesn't work then try your next idea.

Ask and accept offers of help.

Check with your local Cancer Society about whether there are groups or talks you can attend.

You might like to talk to another supporter through the Cancer Society's Cancer Connect Service or Cancer Chat which is a Cancer Society online forum.

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Ngā ara hei whai mō te hīraurau hopanga angitu

Hei tīmatatanga, whakaritea he rārangi o ngā mātātaki katoa kei mua i a koe.

Whakaraupapatia mai ngā hopanga—rārangitia ērā me mahi wawe tonu, kātahi ka rārangi mai i ērā ka taea te waiho mō tēnei wā.

Mehemea he taumaha rawa te hopanga, he āpuru rawa rānei, tēnā wetewetekina kia pakupaku ake ngā hopanga. Hei tauira, ka puta ko ēnei āhuatanga i te wā e whai ana koe i tō maimoa:

• te whakarite waka haere

• te whakarite kaitiaki tamariki, te whakarite kai hoki

• te whakarite wā whakawātea i a koe i tō mahi

• te whakahaere raruraru ā-pūtea.

Ōhia manomano: Huri ki tō hopanga whāwhai rawa, ka whakarārangi mai i ngā whiringa katoa mō te whakatutuki. Whakaurua ō whakaaro katoa, ahakoa te heahea, i te mea, i ētahi wā, ka puta he āhuatanga māmā, auaha hoki.

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Whiriwhirihia kia rua, kia toru rānei ngā whiringa pai: Whakaaroarohia ngā putanga mēnā ki te whāia e koe—ka tutuki o whāinga, ka whai pānga ki a wai, ka pēhea rawa te roa me te uaua o te mahi?

Me whakatau ko tēhea whiringa, rautaki rānei te mea pai rawa atu, katahi ka whakamātauria. Mēnā kāre i pai, whāia ko tētahi ake whakaaro!

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Top 10 tips other supporters have found helpful

1. Sometimes being a supporter changes and you end up doing more than expected. Work out what you are able to do and revisit this every now and then. If things are becoming too hard, you may want to say you cannot carry on.

2. Make sure you are supported in your role, by talking to friends and family/whānau and letting your workmates and employer know what's going on for you.

3. Take time out to do something other than talking or thinking about cancer.

4. Be prepared to compromise—let others help—let some jobs go undone.

5. Find out how others manage in this situation—talk to other supporters, contact Carers New Zealand, Cancer Connect or Cancer Chat (see our website www.cancernz.org.nz for details). Look for publications written by or about supporters.

6. Try to get a good understanding of the community health services in your area. Each District Health Board and hospice across New Zealand offer different services. Your GP, practice nurse or local Cancer Society can help guide you.

7. Check what extra services are available in your area, such as help with driving, online shopping (which is delivered), gardening or childcare.

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8. When others offer to help, try to find things suitable for them to do. Some people keep a "to do" list, such as lawn mowing, shopping and cleaning.

9. Suggest things that friends can do to give you a break, such as a coffee date, seeing a movie, going for a walk or, simply, spending time together.

10. Recognise grief is a mixture of emotional and physical changes. It is a normal response to change and loss.

Page 109

Tono me te whakaae ki ngā āwhina

Uiuitia tō Kāhui Matepukupuku ā-rohe mehemea he rōpū anō hei whakauru atu māu, he hui rānei e e koe te whai.

Ka hiahia pea koe ki te kōrero ki tētahi atu kaimanaaki mā te Cancer Society's Cancer Connect Service, ki te Cancer Chat rānei, he wānanga ā-ipurangi na te Kāhui Matepukupuku.

Ngā tīwhiri matua pai rawa ki ngā kaimanaaki

1. I ētahi wā, ka rerekē tō āhua hei kaimanaaki, ā, i te mutunga, kua nui rawa ake āu mahi. Whakaritea ngā mea ka taea e koe, ka hoki atu anō ia wā, ia wā. Ki te uaua rawa ngā mahi, me kī kē pea, kua rahi tēnā.

2. Āta whakarite kei te tautokongia koe i roto i to kawenga, mā te kōrero ki ō hoa, ki te whānau, me te whakamōhio atu i ō hoa mahi me tō kaiwhakawhiwhi mahi, e aha ana koe.

3. Whakaritea he wā ki te mahi i tētahi mahi, atu i te kōrero me te whakaaro mō te matepukupuku.

4. Kia ngāwari tonu tō āhua—tukuna ētahi atu tangata ki te āwhina—waiho noa ētahi mahi.

5. Rangahautia, i pēhea ētahi atu tāngata—kōrero ki ētahi atu kaimanaaki, whakapā atu ki a Carers New Zealand, ki a Cancer Connect, ki a Cancer Chat (tirohia tō mātou paetukutuku cancernz.org.nz mō ngā kōrero). Rapua ngā putanga kua tuhia e tētahi kaimanaaki.

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6. Me whai kia tino mārama koe ki ngā ratonga hauora ā-hapori kei tō rohe. He rerekē ngā ratonga a ia District Health Board me ia hospice, huri noa i Aotearoa. Mā tō GP, tō tapuhi mahi, tō Kāhui Matepukupuku ā-rohe e āwhina ki te ārahi i a koe.

7. Tirohia he aha ngā ratonga tāpiri e wātea ana i roto i tō rohe, pērā ki ngā āwhina kaihautū waka, mahihokohoko mā te ipurangi (whakaratoa ai e rātou), mahi māra, te tiaki tamariki rānei.

8. I ngā wā whiwhi āwhina ai koe, whakaritea he mahi e hāngai ana mā rātou hei mahi. Pupuri "rārangi mahi" ai ētahi tāngata, pērā ki te tapahi i te papa karaehe, ki te haere ki te toa, ki te whakamā i te whare.

9. Kōrerotia ngā mahi e pai ana mā ō hoa e mahi, kia pai ai tō whakatā, pērā ki te tūtaki i tētahi mō te inu kawhe, ki te haere mātakitaki kiriata, ki te haere hīkoikoi haere, te mahi whakawhanaunga noa iho rānei.

10. Me mōhio koe, he whenumi te pāmamae o ngā rerekētanga ā-kare ā-roto, ā-tinana hoki. He urupare hāngai tēnei ki ngā panoni me te ngaronga ā-mate.

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National Office

PO Box 12700, Wellington 6144

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, Taupō, Thames and Waikato

Central Districts Division

PO Box 5096, Palmerston North 4441

Telephone: (06) 356-5355

Covering: Taranaki, Wanganui, Manawatū, Hawkes Bay and Gisborne/East Coast

Wellington Division

52-62 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

Covering: Urban and rural Otago and Southland

Cancer Information Helpline

0800 CANCER (226 237)

www.cancernz.org.nz

End of Supporting someone with cancer