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UNDERSTANDING CANCER Chemotherapy Hahau A guide for people having chemotherapy Copyright 2011 Cancer Society of New Zealand Inc PO Box 12700 Wellington 6011 Fourth Edition 2011 ISBN 0-908933-91-6 Publications Statement The Cancer Society s aim is to provide easy-to-understand and accurate information on cancer and its treatments and the support available. Our cancer information booklets are reviewed every four years 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 reviewed by consumers to ensure they meet the needs of people with cancer. This edition of Chemotherapy Hahau includes new features in response to suggestions from those who review our booklets and to meet the needs of our readers. Our key messages and important sections have been translated into te Reo Mori. Our translations have been provided by Hohepa MacDougall of Wharetuna Ma ori Consultancy Services and have been peer reviewed by his colleagues. Other titles from the Cancer Society of New Zealand Te Khui Matepukupuku o Aotearoa Booklets Advanced Cancer Matepukupuku Maukaha Bowel Cancer Matepukupuku Puku Hamuti Bowel cancer and bowel function Practical advice 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 Eating Well during Cancer Treatment Kia Pai te Kai i te w Maimoatanga Matepukupuku Emotions and Cancer Got Water He Wai Kanesa o le susu Breast Cancer (Samoan) Lung Cancer Matepukupuku Pkahukahu Melanoma Tonapuku Prostate Cancer Matepukupuku Repeure Radiation Treatment Haumanu Iraruke Secondary Breast Cancer Matepukupuku Tuarua - Sexuality and Cancer Hkakatanga me te Matepukupuku Understanding Grief Te Mate Pmamae 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 Chemotherapy This booklet has been written to provide you with information about chemotherapy and the support and information your doctors nurses and the Cancer Society can offer you. We hope it answers some of the questions you may have before and during treatment. You will be given more information when you have treatment. We can t advise about the best treatment for you personally. You need to discuss this with your doctors. The words in bold in the text are explained in the glossary at the end of the booklet. Hahau Kua whakaputaina tnei pukapuka kia mrama ai koe ki tnei mea te hahau kia mhio ai koe m ng whina me ng prongo ka taea e ng rata ng tapuhi me Te Khui Matepukupuku te hoatu. Ko te tmanako kei konei ng whakautu m ng ptai ka ara ake i a koe e whai maimoatanga e whai whakaoranga ana m t mate. Ka tmata ana ng maimoatanga ka nui ake ng prongo ka whiwhi koe. Ehara m mtou ki te tohutohu i a koe m te maimoatanga pai ake me krero k koe ki u ake rata. Kei te takoto ng whakamrama m ng kupu kua miramirahia kei te pito whakamutunga o tnei pukapuka. 1 Contents What is cancer What is chemotherapy Making decisions What can I expect from chemotherapy Side effects How will I know my treatment is working What happens when the treatment ends Relationships and sexuality Support What can I do to help myself Questions you may wish to ask Suggested reading and websites Glossary Feedback 3 7 19 26 31 48 49 50 53 67 71 73 74 81 2 What is cancer Cancer is a disease of the body s cells. It starts in our genes. Our bodies are constantly making new cells to enable us to grow to replace worn-out cells or to heal damaged cells after an injury. All cancers are caused by damage to some genes. This damage usually happens during our lifetime although a small number of people inherit a damaged gene from a parent when they are born. Normally cells grow and multiply in an orderly way. However damaged genes can cause them to change. They may grow into a lump which is called a tumour. The beginnings of cancer Tumours can be benign (not cancerous) or malignant (cancerous). Benign tumours do not spread to other parts of the body. 3 How cancer spreads A malignant tumour is made up of cancer cells. When it first develops this malignant tumour may be confined to its original site a cancer in situ (or carcinoma in situ). If these cells are not treated they may spread beyond their normal boundaries and into surrounding tissues (invasive cancer). Sometimes cells move away from the original (primary) cancer through the blood or lymphatic systems and invade other organs. When these cells reach a new site they may form another tumour. This is called a secondary cancer or metastasis. For example if breast cancer spreads to the 4 bone it is called a bone secondary (or metastasis). Your cancer doctor will still refer to it as breast cancer even though it has spread to another organ. The sort of treatment you are given for cancer depends on the type of cancer where it began and whether it has spread. Your cancer doctor will also take into account individual factors such as your age and general health. Treatments for cancer include surgery chemotherapy (drug treatment) hormone treatment or radiation treatment. Monoclonal antibodies which are now used to treat a few cancers will become increasingly important in the future. Sometimes only one of these methods of treatment is used for a cancer. Sometimes more than one is used. He aha te matepukupuku He mate tnei ka p ki ng ptau o te tinana. Ka tmata i roto i ttou ira. He kaha ttou tinana ki te mahi ptau i ng w katoa hei whina i t ttou tipuranga hei whakahou i ng ptau kua kore he kaha kua mate rnei i ng wharanga. Kore e kore ka p ng tkino nei i roto i te w o t ttou oranga engari ka whiwhi tahi tngata i taua ira kua tkinotia mai i rtou mtua i te w whnau mai rtou. I te nuinga o te w pai noa iho te tipu me te rauroha haere o ng ptau. Heoi an mn kua tkinotia ttahi tr pea ka hua rerek te whanonga. Tr pea ka tipu hei pukupuku e kia ana he puku. 5 Te tmatatanga o te matepukupuku Ko tahi puku ka kia he mrire (ar he kore matepukupuku) ko tahi atu ka kia he marere (he matepukupuku). Kore ng puku mate mrire e rauroha haere ki tahi atu whanga o te tinana. Phea ai te rauroha o te matepukupuku He ptau matepukupuku ng puku mate marere. Ka tmata ana ka noho te puku marere nei ki te whi ka puta ake ka kia he matepukupuku noho tonu (ko te carcinoma noho tonu rnei). Ki te kore nei ptau e maimoatia tr pea ka rauroha haere ki tua atu o tna paenga noho ki ng kikokiko o te tinana (matepukupuku whakaekenga). I tahi w ka neke ng ptau mai i te whi tmata ai (tuatahi) te matepukupuku ka haere m te pnaha toto m te pnaha tpona waitinana rnei ktahi ka whakaeke i tahi atu whkau. Ka tae ana nei ptau ki whi k o te tinana tr pea ka puta he puku. Kia ai tnei he matepukupuku tuarua he metastasis rnei. 6 What is chemotherapy Chemotherapy is the treatment of cancer using anti-cancer drugs. The aim is to kill cancer cells while doing the least possible damage to normal cells. He aha te hahau He maimoatanga m te matepukupuku te hahau m te whakamahi i ng whakapauau patu-matepukupuku. Ko te whinga ko te patu i ng ptau matepukupuku me te whai kia iti noa iho te tkino i ng ptau pai. How does it work Chemotherapy stops cancer cells from dividing and multiplying. It travels through the bloodstream and kills cancer cells in different parts of the body. It can also affect normal cells. Chemotherapy is more likely to affect the cells in the body that grow quickly which is why some people lose their hair have a sore mouth or have a fall in the number of blood cells. Fortunately most cells in the body are not growing rapidly and so chemotherapy doesn t affect them. Even when normal cells are damaged they grow again. Damaged cancer cells are less likely to grow back. 7 Targeted treatment Recently new drugs have become available that are more specifically directed at cancer cells and the structures essential for their growth and survival than existing chemotherapy drugs. They are now being used in the treatment of a few kinds of cancers and some promising new compounds are being developed. Through better targeting these newer drugs should be more effective against cancers resistant to conventional chemotherapy and cause fewer unpleasant and dangerous side effects on health and normal cells. A test known as microarray analysis can be used to look at the genetic make-up of cancers. It may soon be possible to predict accurately how a cancer will behave and how it will respond to different treatments. How will I be given chemotherapy Sometimes one type of chemotherapy drug is given by itself either as tablets or capsules or in a drip (IV infusion). Cannula A cannula is a small tube. This is put into a vein in your arm or back of your hand. It is put in by the oncology nurse on the day of treatment. The cannula is removed after each treatment cycle. Source Macmillan Cancer Support and Cancer Help UK More often two or more drugs are given together. You ll probably be given your drugs by injection or drip into a vein or via a portable infusion pump. 8 Photographer Louise Goossens Above A woman with a cannula in her hand. 9 Photographer Louise Goossens Above A woman talking about her oral chemotherapy with a nurse in the Chemotherapy Suite. 10 Oral chemotherapy Some chemotherapy drugs are given as tablets. It is very important that you take your tablets when and how your cancer doctor says. If you are not sure about what to do ask your cancer doctor or nurse to write down instructions for you. Make sure you understand the side effects and who to contact if you have problems. Even though you re having this treatment at home remember it is no different from intravenous chemotherapy in the way it works and its possible side effects. Types of central lines For repeated or long infusions of chemotherapy or when there is difficulty finding a suitable vein you may require a central venous line. Central lines are put in under a general or local anaesthetic and may be left in for many months. When in place the line is stitched in or a special dressing may be put over it so that it can t come out. It allows chemotherapy to be delivered directly into your blood stream. 11 Photographer Louise Goossens Above A man with a central venous line in his chest. Central venous line A central venous line is a long thin flexible tube that is inserted through the skin of the chest into a vein near the heart. Hickman and Groschong lines are both commonly used types of central venous line. 12 Photographer Louise Goossens Above A man with a PICC line in his arm. PICC line A PICC (Peripherally Inserted Central venous Catheter) is inserted into a vein through the skin in the bend or upper part of the arm and threaded through until the end of the tube lies in a vein near the heart. 13 Photographer Louise Goossens Above A man with a portacath line receiving chemotheraphy. Portacath (an implantable port) The tip of the line sits just above the heart and the port lies under the skin on your upper chest. Once in place you can feel and see the port as a small bump underneath the skin. Nothing shows on the outside of your body. To use the portacath a needle is passed through your skin into a port. The skin over the port can be numbed with an anaesthetic cream first. 14 Possible problems with central lines The two main possible problems with central lines are blockage and infection. If you notice any changes like the ones below it is important to contact the hospital for advice high temperature (T 38 refer to page 34) soreness redness or darkening around the central line fluid leaking from the skin around the central line swelling of your arm chest neck and shoulder pain in your chest arm or neck feeling shivery or unwell after your line has been flushed. Sources Macmillan Cancer Support and CancerHelp UK Chemotherapy drugs don t get into the brain spinal cord or the fluid around the brain and spinal cord very easily so for a few cancers the chemotherapy drugs are injected into the base of the spine through a process called lumbar puncture. How will my doctors decide on the type of chemotherapy The type of treatment your cancer doctor chooses for you depends on what type of cancer you have how far it has spread and your general health. Chemotherapy has been used for many years and new and better treatments are being discovered all the time. Everyone is different treatments are designed for the individual. 15 Your cancer doctor and nurses will keep a close eye on you during your treatment. You may have blood tests X-rays and scans to see how you are doing. If necessary your doctors will change your drugs or how they give them to you. Sometimes they will stop the treatment early or continue it for longer than planned. It all depends on how your body and the cancer respond to the treatment. How long will my treatment last Your treatment could last several weeks or several months. You ll probably get one dose of treatment at a time or over a few days and then you ll be given a rest before having the next treatment. Treatment cycles are usually two to four weeks apart. Spacing out your treatment in this way gives your body a chance to recover from any side effects. Blood tests Before you have each treatment a blood sample will be taken. This test (known as a blood count) measures the different cells in your blood. You need to have blood counts because chemotherapy drugs can lower blood count levels. If any part of your blood count is too low your doctors might give you a longer time between treatments. They may change your drugs or give you additional treatment that boosts blood counts. 16 I got a little scared by tests it was a shock. I don t remember what was said but my husband did. He had all the questions. Debbie Will it cure me Chemotherapy can cure some types of cancer. Sometimes it does this on its own and sometimes when used with surgery or radiation treatment. At other times chemotherapy controls your cancer by stopping it growing or by making it shrink. This treatment can give you a longer life or can help reduce any problems the cancer is giving you. Whether or not chemotherapy cures depends on what sort of cancer you have and its stage. Ask your cancer doctor how chemotherapy will help you. 17 Use of chemotherapy to help other treatment Chemotherapy can be used to assist another treatment such as surgery or radiation treatment this is called adjuvant chemotherapy. Adjuvant chemotherapy can be given either before or after the main treatment. When given before other treatment the drugs can be used to make the cancer smaller so that the main treatment can be more effective. When given after the main treatment chemotherapy is often used to kill any potential cancer cells which have not been found but could cause problems later. 18 Making decisions Sometimes it is difficult to make decisions about what is the right treatment for you. You may feel that everything is happening so fast that you do not have time to think things through. Some people find that waiting for test results and for treatment to begin is very difficult. While some people feel they are overwhelmed with information others may feel they do not have enough. Understanding your illness the possible treatment and side effects will help you to make your own decisions. If you are offered a choice of treatments including no treatment for now you will need to weigh up their advantages and disadvantages. If only one type of treatment is recommended ask your cancer doctor to explain why other treatment choices have not been advised. The risk of not having treatment needs to be weighed against the risk of side effects from treatment. You may want to ask your doctor questions like Can I expect to live longer if I have treatment and If I have treatment is there a risk that my quality of life could worsen because of the side effects Some people with cancer will choose treatment even if it only offers a small chance of cure. Others want to make sure that the benefits of treatment outweigh any side effects. Still others may choose the treatment they consider offers them the best quality of life. Some may choose not to have treatment but to have any symptoms managed as they arise in order to maintain the best possible quality of life. 19 20 Talking to doctors You may want to see your doctor a few times before making a final decision on treatment. It is often difficult to take everything in and you may need to ask the same questions more than once. You always have the right to find out what a suggested treatment means for you and the right to accept or refuse it. Before you see the doctor it may help to write down your questions. There is a list of questions at the end of this booklet that may assist you. Taking notes during the session can also help. You may find it helpful to take a family member or friend with you to take part in the discussion take notes or simply listen. Some people find it is helpful to record the discussion. It may be helpful to ask your cancer doctor what support is available to you for example social workers physiotherapists a dietitian or a cancer nurse. You can contact the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237). Te krero ki ng rata Tr pea ka hiahia koe kia nui krero me t rata i mua i t whakatau i te maimoatanga pai mu. He uaua tonu te hopu i te maha o ng krero ka puta tr pea ka mate koe ki te ptai an i aua ptai. Kei a koe tonu te tikanga ki te whiu ptai m te hua o te maimoatanga ka whiwhi koe me te tikanga ki te whakaae atu ki te whakah rnei. 21 Talking to others Once you have discussed treatment options with your doctor you may want to talk them over with someone else such as family or friends specialist nurses your family doctor the Cancer Society the hospital social worker or chaplain your own religious or spiritual adviser another person who has had cancer. You may be interested in Cancer Connect NZ which arranges telephone peer support calls for people living with cancer and their caregivers. Phone the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237) for more information. Cancer Chat is an online support and information forum that you can join on www.cancerchatnz.org.nz. Talking it over can help to sort out what course of action is right for you. 22 I m the type of person to ask questions they [the team] were really kind. Not patronising kind . They were very patient explaining to me. Silei A second opinion You may want to ask for a second opinion from another cancer doctor. Your cancer doctor or general practitioner can refer you to another cancer doctor and you can ask for your medical records to be sent to the second doctor. You can ask for a second opinion even if you have already started treatment or still want to continue treatment by your first cancer doctor. However if the second opinion differs from that of the first doctor he or she cannot be expected to give a treatment that he or she does not consider to be the one best for you. Treatment would then have to be given by the second cancer doctor. Sometimes people seek a second opinion overseas. An overseas cancer doctor may recommend a treatment that is not available in New Zealand which may be very expensive and the New Zealand public health system will not pay for. 23 If the recommendation is to participate in a clinical trial (see below) this can only be done through a doctor registered with the clinical trial. The internet You your friends or family whnau may decide to search the internet looking for treatments for cancer. The internet is an excellent source of high-quality information. There is also a lot of opinion presented as fact but supported by little if any evidence. The amount of information and opinion is often overwhelming. Sifting and sorting it may be very difficult. Some suggested websites with information about chemotherapy are given on page 73. Taking part in a clinical trial Research into the causes of cancer and into ways to prevent detect and treat it is continuing. Your cancer doctor may suggest you consider taking part in a clinical trial. Clinical trials are a vital part of the search to find better treatments for cancer. Doctors conduct clinical trials to test new or modified treatments and see if they are better than existing treatments. Many people all over the world have taken part in clinical trials that have resulted in improvements to cancer treatment. However the decision to take part in a clinical trial is always yours. If your doctor asks you to take part in a clinical trial make sure you fully understand the reasons for the trial and what it means for your treatment. Before deciding whether or not to join the trial you may wish to ask your cancer doctor or research nurse 24 What treatments are being tested and why What tests are involved What are the possible risks or side effects How long will the trial last Will I need to go into hospital for treatment What will I do if any problems occur while I am in the trial If you decide to join a randomised clinical trial you will be given either the best existing treatment or a promising new treatment. You will be chosen at random to receive one treatment or the other but either treatment will be appropriate for your condition. If you join a clinical trial you have the right to withdraw at any time. Doing so will not interfere with your treatment for cancer. It is always your decision to take part in a clinical trial. If you do not wish to take part your doctor will discuss the best current treatment for you. 25 What can I expect from chemotherapy When you arrive at the hospital for chemotherapy Often you will have a blood test first and your doctors must wait for the result to check that your blood count is okay before they can give you the treatment. You will be checked by the cancer nurse or doctor to make sure you have no problems and are able to have treatment that day. Does chemotherapy hurt No not usually. If you have a drip (IV infusion) you ll feel a brief sting as the needle goes in but then the pain should stop. However if the pain continues or starts during the infusion let the cancer nurse know immediately. Will I have to stay in hospital Most people have their treatment as an outpatient. Usually you have to spend a few hours at the hospital for each treatment. It s a good idea to bring a book or something to listen to or a friend or relative to talk to. Occasionally some people stay in hospital overnight or longer depending on the treatment. 26 Photographer Louise Goossens Above A man having chemotherapy treatment via a pump. If you live a long way from the hospital you will probably be able to stay free of charge or at low cost at a comfortable hostel or motel. Family members can stay (at a reduced rate) in some hostels. Contact your regional Cancer Centre to find out about accommodation. 27 Me noho au ki te hhipera Ka whai oranga te nuinga o ng tngata hei troro noho kinga. I te nuinga o te w ka noho koe i te hhipera m tahi hora m ia maimoatanga. He pai mn ka hari pukapuka koe hei pnui he mea hei whakarongo rnei he hoa he whanaunga rnei hei hoa krero. I tahi w ka noho tahi tngata m te p ka roa ake rnei e ai ki te maimoatanga. Mehemea he tawhiti t kinga i te hhipera tr pea ka hei koe ki te noho utu kore m te iti o te utu rnei ki ttahi kinga noho mtra rnei. Ka hei hoki tahi o te whnau ki te noho (m te iti ake o te utu) ki tahi kinga noho. Whakap atu ki te Pokap Matepukupuku o t rohe e p ana ki ng whi noho. Can I keep working Most people keep working during their treatment and arrange time off to go to hospital for each treatment. Some people can work part time instead of full time while others take a few days off around each treatment. Others take an extended break for the whole course of the treatment. Talk to your employer family and friends and work out what suits you. Try not to take on too much. You may wish to talk to the hospital social worker for information on benefits (see the section titled Financial assistance on page 64 for more details) or call Work and Income on 0800 559 009. 28 What about other activities Do only what you feel comfortable doing. You may find you can go on with your normal life or that you have to take things much easier. The important thing is to look after yourself during chemotherapy so that your body is strong enough to cope with the drugs. Do not do anything you do not need to do. Put your own needs and wishes first. What about my other medications Before you start chemotherapy be sure to give your cancer doctor a list of all the medications you are taking including occasional Panadol aspirins anti-inflammatories (such as Nurofen) vitamins or treatments from for example herbalists naturopaths or homeopaths (see pages 62-63 on Complementary and alternative therapies ). If you want to take any new medications (including complementary medicines) while having chemotherapy ask your cancer doctor about these before you begin taking them. Some chemotherapy drugs do not mix well with other medicines. Can I drink alcohol It is usually fine to drink a little alcohol during treatment but check with your cancer doctor first--some chemotherapy drugs do not mix well with alcohol. 29 Can I drive You ll probably find it best to get someone to drive you to and from hospital for the first treatment. If you feel okay to drive after your first treatment you ll probably be fine to do so on following appointments. Does chemotherapy cause cancer Some people who have chemotherapy may get another form of cancer much later in life. However this rarely happens and it is much more likely that your treatment will either cure you or control your cancer. If this question concerns you talk it over with your specialist. 30 Side effects The side effects that you might experience depend on the drugs you receive. Ask your cancer doctor or nurse what to expect and how to deal with it. Most side effects are only temporary. Side effects usually disappear shortly after the treatment stops. However some side effects are permanent. Ask your specialist if you are likely to get any permanent side effects. This section lists the more common side effects and methods to help you deal with them. You probably won t get all of them but tell your cancer doctor or nurse about any that you do as they need to know how you are coping with the drugs. They may be able to help control the side effects or they may want to change the treatment to try to avoid them. Ng pnga i te taha M te hua o ng whakapauau e kitea ai ng pnga ki a koe na piki na heke. Uiuitia t rata matepukupuku t tapuhi matepukupuku rnei m te hua o ng pnga ka p ki a koe. He rangitahi noa te nuinga o ng pnga ka puta. Ka nunumi ng pnga ka mutu ana ng maimoatanga. Heoi an r ka noho tturu tahi pnga. 31 Changes to bone marrow Bone marrow is the spongy tissue that fills the hollow cavities of many of the flat bones of the body. It produces new blood cells. Chemotherapy reduces the number of blood cells produced by the bone marrow. The effects of chemotherapy on blood cells White cells (are essential for fighting infections). Effects of chemotherapy on white blood cells You will be at increased risk of infection by not having enough white cells to fight bacteria. Key points If your temperature is 38 or more or you feel unwell even with a normal temperature call your cancer doctor or nurse. Other signs of infection include swelling redness or pain. Do not wait to see what happens . Follow the advice of your cancer team. You may need to go to hospital for intravenous antibiotics. 32 Red cells (contain the red iron-rich pigment haemoglobin to carry oxygen around the body). Effects of chemotherapy on red blood cells They may cause you to feel tired low in energy dizzy light-headed and breathless which are all symptoms of anaemia. Key points Let your cancer doctor or nurse know if you have any of these symptoms. Conserve your energy where you can. Talk to your cancer doctor or nurse about ways to manage fatigue. You may need a blood transfusion. Platelets (help the blood to clot and prevent bleeding). Effects of chemotherapy on platelets These can increase the risk of bleeding and you will bruise easily. Key points Contact your cancer doctor or nurse immediately if you have any unexplained bleeding or bruising. You may need a platelet transfusion. 33 Infection and fever A fever can be a sign that your body has an infection. Fevers can also cause other problems such as chills shivering and headaches. It is important therefore to investigate the cause of infection and to treat it appropriately. It is also possible to have an infection but to not have a fever just to feel unwell. In either case contact your cancer doctor immediately. If fever develops (if your temperature is 38 or over) or you feel unwell even with a normal temperature don t wait to see what happens--take action quickly. Contact your cancer doctor or nurse and follow the advice given. Ng mate urut me te mate kirik He tohu te mate kirik kei te pngia koe ki ttahi mate urut. He maha atu ng raruraru ka puta i te kirit pr ki te haukeoeo te korohwini me te ninini o te mhunga. N reira he mea nui te tirotiro ki te take i puta ai te mate urut me te hngai o te whakatika. Ki te puta te kirit (ki te piki t pmahana ki te 38 tkiri neke atu rnei) kei te muiuitia rnei koe ahakoa te pai o te pmahana kaua e tatari--whakarite i a koe. Me kaha koe ki te whakap atu ki t rata matepukupuku t tapuhi matepukupuku rnei ka whai i rtou tohutohu. 34 I found the hospital admitted you very quickly which is great. I did feel like I shouldn t burden the hospital and I would end up waiting forever. This was not the case and I found you ll be seen promptly. Ben Fevers are an indication that something is wrong and should be treated and reported. If they get too high they can lead to dehydration and seizures. When someone is undergoing chemotherapy or radiation treatment fevers often indicate infection which is serious and requires medical attention. High fevers do not destroy bacteria that cause infection. This is why your cancer doctor or health care team will treat both the fever and the possible infection. If your white blood cell count is low your body will not be able to fight off the infection on its own. 35 Feeling tired Fatigue tiredness is a very common side effect of chemotherapy. If you do get tired try to take things easier. Do only as much as you feel comfortable doing. Try to plan rest times in your day. Also try to ensure you are drinking plenty of fluids eating well and having some form of physical activity. This will help you cope better with the treatment. Don t be afraid to ask for some help. Family whnau friends and neighbours may be happy to have the chance to help you--tell them how they can help. If you re not sleeping well tell your cancer doctor or nurse. They may be able to suggest ways to help or prescribe sleeping tablets or a mild relaxant. Feeling sick (nausea) or vomiting Not everyone feels sick after chemotherapy and anti-sickness medication has greatly improved over the past decade. If you do feel sick you ll find that it usually starts several hours after treatment and may last for a few hours. Anti-sickness medication is frequently given to prevent sickness occurring. It is important to take your medication for nausea exactly as prescribed. Check with your cancer doctor or nurse to find out if you can drive whilst on this medication. If nausea or vomiting persist longer than 24 hours contact your oncology nurse or doctor. 36 If you feel sick try some of these ideas Eat lightly before each treatment. Eat smaller amounts more often. Eat slowly and chew well to help you digest your food better. Eat your main meal at the time of the day when you feel best. Try not to eat fatty things. Eat dry toast or crackers--they often help. Drink clear cool and unsweetened drinks like apple juice. Don t do anything too strenuous after a meal but try not to lie down for at least two hours after a meal. Try breathing deeply through your mouth whenever you feel like being sick. If cooking or cooking smells make you feel sick ask others to cook for you or prepare meals between treatments and freeze them. Ask the cancer nurse or hospital social worker where you can learn relaxation or meditation methods. Contact the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237). 37 Kei te pngia koe ki te mate kua hiahia ruaki rnei Ehara i te mea ka pngia katoa ng tngata ki te mate whai muri i ng mahi hahau me te aha kua pai ake ng rongo rai-mate i te tekau tau kua hori. Nui tonu ng w ka hoaturia te rongo rai mate kia kore ai e puta ake te mate ruaki. He mea nui kia tika koe i rongo rai-mate kia rite tonu ki ng tohutohu. Uiuitia t rata t tapuhi rnei mn he pai noa iho koe ki te taraiwa i t motok i a koe e whai ana i ng rongo. Ki te noho te mate hia ruaki m te 24 hora neke atu rnei me whakap atu ki t tapuhi mtai matepukupuku ki t rata rnei. Not wanting to eat You may have no problems with your appetite during treatment or you may not feel like eating at all. Your sense of taste may change. This change can last for the duration of chemotherapy but will then return to normal once chemotherapy stops. Changes to your appetite can be because of your treatment your cancer or just because of the whole experience of having cancer and being treated for it. Whatever your experience do try to eat as well as possible during your treatment to maintain your energy levels and avoid weight loss. If you do not feel like eating try different foods until you find foods you want to eat. Eat smaller amounts more often or try drinking special liquid 38 supplement foods that you can get from your pharmacist. Even when you are unable to eat very much it is important to drink plenty of clear fluids. You might find the Cancer Society s booklet Eating Well during Cancer Treatment Kia Pai te Kai i te w Maimoatanga Matepukupuku helpful. It has many suggestions and recipes and you can get it free from the Cancer Society or you can download it from our website www.cancernz.org.nz. Your hospital may have its own diet information for cancer patients. You can also talk to the hospital or community dietitian for advice about what to eat. Weight gain Some people gain weight during chemotherapy. Talk to a dietitian if this becomes a problem for you. Any weight gained during chemotherapy can be due to medication but usually comes off when treatment stops. Hair loss Some people don t lose their hair while others lose all their head and body hair. Whether this happens to you depends on what drugs you are given. Ask your cancer doctor if you are likely to lose your hair. Your hair may start to fall out two to three weeks after the first treatment or it may not fall out for quite a while. Your scalp may feel hot or itchy just before your hair starts to fall out. The Cancer Society has an Information Sheet titled 39 Above A woman taking part in the Look Good Feel Better programme. 40 I am pleased to say my first round of chemo I handled very well. I was very tired but I didn t have the bad nausea. They kept saying You re doing so well and I kept thinking I m doing what I have to do. Stephanie Managing Hair Loss that you can view on the Society s website www.cancernz.org.nz by contacting your local Cancer Society for a copy or by ringing the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237). Your hair will grow back again when your treatment stops. It takes between 4 and 12 months to grow back a full head of hair. It is possible your new hair may be a different texture or colour. Your scalp may be quite itchy as your hair grows back. Frequent shampooing can help. Many people find losing their head hair very upsetting. Try to remember that it will grow back. Until it does you might want to wear a wig. It s a good idea to get a wig fitted before you start losing your hair so that it matches as closely as possible your style and colour. You may want to get your hair cut shorter so that it fits better under a wig. Spend some time choosing one that suits you. 41 The Government helps pay for the cost of a wig. You must get a certificate from your cancer doctor that states you are entitled to a wig. Some people don t bother with a wig. They stay bald or cover up with a scarf or hat. What you do is up to you. There is no medical reason why you have to cover up your head. However your scalp will be more sensitive to the sun than normal so you should wear a hat or a highprotection sunscreen (SPF 30 ) on your scalp when you re in the sun. In the winter your head may feel much colder than it normally would. Te kore makawe Kore e ngaro ng makawe o tahi tngata engari an tahi atu ngaro katoa ana ng makawe me ng huruhuru o te tinana. Mehemea ka p tnei huatanga ki a koe tr pea n ng whakapauau i hoatuna ki a koe. Uiuitia t mtanga ki te ptai mn ka ngaro makawe. Tr pea ka ngahorohoro haere o makawe e rua ki te toru wiki whai muri i te maimoatanga tuatahi tr pea ka roa ake. Ka wera t kiri angaanga ka meneene rnei i mua i te ngahorohanga o makawe. He Whrangi Prongo t te Khui Matepukupuku e kia ana ko Managing Hair Loss ka taea te titiro i runga i te paetukutuku a te Khui Matepukupuku www.cancernz.org.nz m te whakap atu rnei ki te Khui Matepukupuku i t rohe m ttahi kape m te waea atu rnei ki ng tapuhi matepukupuku i runga i te the Cancer Information Helpline 0800 CANCER (226 237). Ka tupu ano makawe ka mutu ana ng maimoatanga. E wh ki te tekau m rua marama te roa e tipu ana. 42 I d always been proud of having really long hair and I think I coped well. I got it cut shorter and shorter as I came up to treatment. June Sore or dry mouth or throat Chemotherapy drugs can give you a sore mouth or mouth ulcers. The cells that make up the lining of your mouth replace themselves very frequently and so the drugs start acting on them quickly. If your mouth is very sore or you get ulcers or thrush (a white coating in the mouth) see your cancer doctor or nurse straight away for advice on treatment. It is important to keep your teeth gums and mouth very clean during your treatment to help stop infections. The nurses can show you how to do this. Use a very soft toothbrush or a cotton bud for your teeth and gums and avoid vigorous or rough brushing. Use a mouthwash regularly. Don t use a bought one because they can be too drying and make your mouth more painful. 43 Ask your cancer doctor or nurse for advice or you can make one yourself by mixing 1 teaspoon of salt and 1 teaspoon of baking soda (sodium bicarbonate) in 4 cups of warm water. Use it four times a day after meals or as often as you need to. Your cancer doctor may give you a special liquid mouthwash. Eat soft foods and have lots to drink. Don t have anything with a high acid level such as grapefruit tomatoes or oranges and avoid spicy foods and spirits. Use a lip salve or ointment on your lips if they are dry. If your mouth or throat is dry and you have trouble swallowing try some of these ideas Suck on ice blocks. Drink lots of liquids. Moisten foods with butter. Dunk dry biscuits in tea. Blend foods and eat soups and ice creams. Ask your dentist doctor or nurse about artificial saliva. Don t smoke. 44 Kua mamae kua maroke rnei t waha me t korokoro Ka puta he mamae ki t waha ka puta rnei he hangina waha n runga i te mahi hahau. Ka kaha te whakakapi a ng ptau pairi ana i te waha i a rtou an n reira ka tere mahi ng rongo. Mehemea kei te tino mamae t waha ka pngia koe ki te mate mariao te mate thrush rnei (ar ka m katoa o roto o t waha) me haere ttika ki te kite i t rata t tapuhi rnei m tahi tohutohu ki te whakatika. He mea nui kia noho tino m niho pniho me t waha hoki i te w o t maimoatanga hei whina ki te rai i ng mate urut. M ng tapuhi koe e whakaatu me phea te mahi. Me whakamahi ttahi paraihe niho tino ngwari he rkau miro rnei m niho me pniho. Kaua e kaha rawa te paraihe. Numbness and tingling (peripheral neuropathy) Some drugs cause tingling and loss of feeling in fingers or toes or both muscle weakness (particularly in the legs) or a change in hearing or ringing in the ears. If this happens let your cancer doctor or nurse know before your next treatment. A slight change in your treatment may be needed. 45 Itchy skin and other skin problems Your skin may redden peel or become dry and itchy. You might get drying and cracking of the fingers around the nails. Your nails may become discoloured brittle and ridged. You may get some acne. Tell your cancer doctor about any skin problems. Use a lotion or cream to stop the dryness. Ask your cancer doctor for something to help if these suggestions don t work. Your skin may go red or thicken where the injection or the drip goes in. If this happens tell your cancer doctor or nurse immediately. It s especially important to cover up your skin and use a high-protection sunscreen (SPF 30 ) in the sun when having chemotherapy. Bowel problems Some chemotherapy drugs are known to cause diarrhoea. You may be prescribed medication to control this. Make sure you take these medicines as prescribed. If diarrhoea persists seek medical attention and advice. You will find some helpful suggestions in the Cancer Society booklet Eating Well during Cancer Treatment Kia Pai te Kai i te w Maimoatanga Matepukupuku. This is available from the Cancer Society by ringing the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237) or you can download this booklet from our website www.cancernz.org.nz. If problems persist tell your cancer doctor. 46 If you get diarrhoea Drink between meals to replace lost fluids. Eat small frequent meals. Avoid seeds pips and skins in fruit vegetables and grains. Avoid cow s milk. Lactose (milk sugar) in milk can cause cramping pains and diarrhoea. Mild cheese and yoghurt are low in lactose and can be eaten. If you are constipated Drink at least six to eight cups of fluid (1500ml) each day. Eat regular meals don t miss breakfast. Add extra fibre to your food. For example add wheatbran flakes to your breakfast cereal or use them in cooking. Forgetfulness and concentration problems (sometimes called chemo brain) After chemotherapy many people say they find it hard to concentrate focus and remember. This is often called chemo brain. It can be very frustrating. It may help to know it can happen to anyone who has chemotherapy. Researchers are trying to discover what causes these concentration problems. It is not clear if these problems are caused by chemotherapy alone. The problem usually gets better with time. 47 How will I know my treatment is working You may be able to tell if your treatment is working by improvement in your symptoms. Sometimes only your cancer doctors can tell you whether the chemotherapy is working. They do this by talking to you examining you and carrying out blood tests and scans. Sometimes it is necessary to have many tests during treatment to see how the treatment is working. The effectiveness of the treatment has nothing to do with how many side-effects you get. 48 What happens when the treatment ends Most of your side effects should go within a few weeks. Sometimes they might last for months and some side effects might last forever. Ask your cancer doctor which ones will go away which ones will stay and what you can do about them. Some people feel worried or depressed when their treatment finally ends. Once the treatment ends you no longer see the hospital doctors as often so it can seem like no-one is looking after you. But remember that you will continue to see your family doctor or go to the hospital for check-ups. Make sure you attend follow-up appointments. Blood tests X-rays and scans may be taken at these appointments. The cancer doctor will want to know if there are any problems now treatment is over. Do report any symptoms that are worrying you. You might want to join a support group to help you through the months after the treatment ends or you may want to continue to see a counsellor or social worker. Ask your cancer doctor nurse or the hospital social worker if you want to do any of these things. As during your treatment only do what you feel comfortable doing. You may be able to return to your normal life immediately or build up to it a bit at a time or you may be going on to another form of treatment and so need to take it easier for a bit longer. Continue to ask for help if you need it. It is always better to ask than to do too much. 49 Ka mutu ana ng maimoatanga ka aha Pr ki te w o t maimoatanga me mahi koe i ng mahi e pai ana kia koe hei mahi. Tr pea ka taea an te hoki ki t hua oranga pr ki ng w ki muri ka huri rnei koe ki te whakarite kia hoki koe ki tr hua a tna w. Tr pea kei te huri koe ki ttahi atu momo maimoatanga n reira me ta haere noa iho m te w. Kaua e whakam ki te tuku ptai whina mehemea e hiahia ana koe. He pai ake te ptai ki te whakaprearea i a koe i te mahi. Relationships and sexuality For some people having cancer and treatment for it has no effect on their sexuality and sex lives. For others it can have a profound impact affecting how they feel about themselves their attractiveness and their sexual desire. This can be the case whether they have a partner or are not in a relationship. Dealing with any changes is an ongoing process of adjustment. 50 Ng hononga me te hkakatanga Ko ttahi o ng pnga o te mahi hahau ko te kore prangi ai n te mea ki whakaaro he anuanu koe he hiamoe rawa koe kua hiaruaki kei te mamae rnei koe. He mea hira tonu kia kaha koe ki te krerorero me t hoa kia kaha krua ki te whitiwhiti krero m krua mataku me krua hiahia. The side effects of chemotherapy may mean that you do not feel like having sex because you feel unattractive too tired and nauseous or are in pain. It is important to keep communication open with your partner for both of you to share your fears and needs. Sexual intercourse is only one of the ways you can express affection for each other. Communicating and sharing your feelings can result in greater openness sensitivity and physical closeness between you. Gestures of affection gentle touches cuddling and fondling can also reassure you of your need for one another. The Cancer Society has a booklet you may find useful titled Sexuality and Cancer Hokakatanga me te Matepukupuku A guide for people with cancer and their partners that you can view on the Society s website www.cancernz.org.nz or receive by contacting your local Cancer Society for a copy or by ringing the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237). 51 Women Your periods may become less regular or stop altogether. You may get hot flushes or other symptoms of menopause. Your vagina may itch or burn or feel dry. You may get vaginal infections such as thrush. Ask your cancer doctor or nurse for something to help if you have any of these problems. Men During treatment some men may have difficulties achieving or maintaining an erection though others will be fine. For most men their usual sex drive and fertility return sometime after treatment is over. Fertility You may become infertile either temporarily or permanently during treatment. But this does not always happen. Talk to your cancer doctor about this before you start treatment. If you want to have a child or more children talk to your cancer doctor about your options. Contraception is important during treatment due to the slight risk of birth defects or miscarriage. It is usually recommended that contraception is used for at least 12 months after chemotherapy is completed. If you are pregnant now talk to your cancer doctor about it straight away. Talk to someone you trust if you are experiencing ongoing problems with sexual relationships. Friends nurses or your GP may be able to help. Your Cancer Society can also provide information about counsellors who specialise in this area. 52 Through the chemo I lost all my sexual drive and the doctors got me on to pills and things have come right but that was one side of treatment that was a downer. Paul Support Emotional support People react in different ways when they learn they have cancer. Feelings can be muddled and change quickly. This is quite normal and there s no right or wrong way to feel. It may be helpful to talk about your feelings with your partner family members friends or with a counsellor social worker psychologist or your religious spiritual adviser. Talking to other people with cancer may also help. 53 I have five things that I hope for--things to make me happy during the day (could be flowers or a great cup of coffee) five things to give thanks for ( thank you for being my friend ). I make them happen. Once you do that you can start a new life. June Tautoko Tautoko -ngkau Tr pea he pai mn ka krero koe m u ake kre -roto me t hoa moe t whnau ng hoa ake me ttahi kaitohutohu tauwhiro kaimtai hinengaro ttahi pou hhi ranei. Tr pea m te krero ki ng tangata e pngia ana ki te Matepukupuku koe e whina. 54 It is usually best to tell your family and your closest friends about your cancer sooner rather than later. Some people worry that older people in the family or children will not cope with the news. But if you do not tell your family they will probably know that something is wrong and then think things are much worse than they are. Sometimes you may find your friends and family do not know what to say to you they may have difficulty with their feelings as well. Some people may feel so uncomfortable they avoid you. They may expect you to lead the way and tell them what you need. You may feel able to approach your friends directly and tell them what you need or you may prefer to ask a close family member or friend to talk to other people for you. Anyone you tell needs time to take it in and to come back with his or her questions and fears just like you. You can help them to adjust just as they can help you. But remember that while you are having treatment your needs should come first. If you do not feel like talking say so. If there are practical things they can do to help say so. If you cannot cope with any more visitors say so. Some friends are better at doing something practical to help (for example making meals or picking up children from school) than they are at sitting and talking. Some find it so difficult that they may stop visiting for a while. Everyone is different. 55 When someone is diagnosed with cancer routines and family roles may change. The person who was the major source of income might now be unable to work and may be dependent on others. A partner who was sharing chores may now have to take on extra tasks or get a job. Maintaining your usual social life and hobbies and interests may be difficult or impossible for a while. Cancer is not a normal event so it is important to acknowledge this and to not try to carry on with everything as before. There are a number of ways that may help you manage. For example Prepare simpler meals. Be more relaxed about housekeeping standards. Ask children to help more around the house. Talking to children How much you tell children will depend on how old they are. Young children need to know that it is not their fault. They also need to know that you may have to go into hospital. Slightly older children can probably understand a simple explanation of what is wrong. Adolescent children can understand much more. All children need to know what will happen to them while you are in hospital who will look after them and how their daily life will be affected. 56 Having friends that allow me to talk I don t have to actually protect them all the time. I don t have to protect my husband. I hand over things that I always took control of I was the one to ferry the kids around organise the meals but they can do it. Colleen Sometimes children rebel or become quiet. Keep an eye on them or get someone else to and get help if you need it for example from the school counsellor or a hospital social worker. The Cancer Society has a booklet titled Cancer in the Family Talking to your family that you may find useful. Phone your local Cancer Society office for a copy of this booklet call the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237) or download it from our website www.cancernz.org.nz. 57 Te krero ki ng tamariki M te pakeke o ng tamariki e tohu i a koe ki te hua o ng krero ka hoatuna e koe. Me mhio ng tamariki nohinohi ehara n rtou te h. Me mhio rtou kore e kore ka haere koe ki te hhipera. Pai noa iho ng tamariki hua pakeke ake ki te mhio ki tahi pitopito krero m t mate. Ka taiohi ana me nui ake ng krero ki a rtou he nui ake hoki rtou mramatanga. Me mhio katoa ng tamariki ka ahatia rtou i te w kei te hhipera koe ar m wai rtou e tiaki ng rerektanga ki ng mahi o ia r ia r. Cancer Society information and support services Your local Cancer Society provides confidential information and support. Local centres offer a range of services for people with cancer and their families whnau. These may include volunteer drivers providing transport to treatment accommodation support and education groups. The range of services offered differs in each region so contact your local Cancer Society and speak to support services staff to find out what is available or phone the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237). 58 The Helpline was great. I rang and said Help I can t do this on my own. Arthette Cancer Connect NZ If you d like to talk to someone who has been through a similar experience the Cancer Society can help. It doesn t matter where you live in New Zealand--all you need is access to a phone. Cancer Connect NZ arranges telephone peer support calls for people living with cancer and their caregivers. Every Cancer Connect NZ peer supporter has had cancer or cared for a loved one living with cancer. Cancer Connect NZ is a free support service which provides information and the opportunity to talk to someone whose life has been affected by cancer. Cancer Chat is an online support and information forum (www.cancerchatnz.org.nz). 59 You re in a secret club but a really compassionate club. They know how you re feeling and I touch people more now. June Ng prongo me ng ratonga tautoko a te Khui Matepukupuku o Aotearoa Ka whakarato tautoko me te prongo nohotapu ng Khui Matepukupuku -Rohe. He whnui ng momo ratonga a ng pokap matepukupuku -rohe m ng tngata matepukupuku me rtou whnau. Anei tahi taraiwa tao m ng waka kawe tangata whai maimoatanga whi noho rp tautoko rp mtauranga. He rerek ng momo ratonga a tn rohe a tn rohe n reira me whakap atu ki t khui Matepukupuku -rohe ka krero ki ng kaimahi ratonga tautoko me waea atu rnei ki ng tapuhi matepukupuku i runga i te Waea-whina Prongo Matepukupuku 0800 CANCER (226 237). 60 I needed to know that I had an action plan for focusing with. I knew there would be an action plan for me there at the Cancer Society. Sue Cancer support groups Cancer support groups offer mutual support and information to people with cancer and often to their families whnau. It can help to talk with others who have gone through the same experience. Support groups can also offer many practical suggestions and ways of coping. Ask your hospital or local Cancer Society for information on cancer support groups in your area. Home care Nursing care is available at home through district nursing or your local hospital or hospice your cancer doctor or hospital can arrange this. You may be entitled to assistance with household tasks during your illness. For information on the availability of this assistance contact your hospital social worker or Community Health Service. 61 Palliative care services Palliative care services have particular expertise in dealing with pain and other symptoms. They can offer emotional support to you and your family whnau at all stages of your illness. These services may be offered by your local hospital or hospice. Complementary and alternative therapies Complementary therapy is a term used to describe any treatment or therapy that is not part of the conventional treatment of a disease. Examples include acupuncture Mori remedies positive imagery spiritual healing art relaxation therapy meditation yoga aromatherapy massage. Alternative therapy is a term used to describe any treatment or therapy that may be used as an alternative to conventional treatments. 62 Art feeds my soul. I follow my passion. It sustains me and feeds me. It s all connected with Whakapapa and Mori spirituality. Mihi Examples include homeopathy naturopathy Chinese herbs. It is important to let your cancer doctor know if you are taking any complementary or alternative therapies because some treatments may be harmful if they are taken at the same time as conventional treatments. Some people find improvements to their quality of life and sense of wellbeing from complementary and alternative therapies. However at present there is no evidence that such therapies can cure cancer or extend the life of people who have cancer. 63 Financial assistance Help may be available for transport and accommodation costs if you are required to travel some distance to your medical and treatment appointments. Your treatment centre or local Cancer Society can advise you about what sort of help is available. Financial help may be available through your local Work and Income office. Work and Income (0800 559 009) has pamphlets and information about financial assistance for people who are unable to work. Short-term financial help is available through the Sickness Benefit and longer-term help is provided through the Invalids Benefit. Extra help may be available for example through accommodation supplements and assistance with medical bills. Interpreting services New Zealand s Health and Disability Code states that everyone has the right to have an interpreter present during a medical consultation. Family or friends may assist if you and your cancer doctor do not speak the same language but you can also ask your cancer doctor to provide an interpreter if using family members is inappropriate or not possible. 64 Ratonga whakamori -waha E takoto ana te krero i te New Zealand Health and Disability Code e hei ana te tangata ki te whai kaiwhakamori i te w o ng hui hauora. Pai noa iho mn ka whina ttahi o te whnau ttahi hoa rnei mehemea he rerek t reo ki t te rata. He pai noa iho hoki te tono kaiwhakamori m t rata mehemea kore i te tika kore rnei e taea e ttahi o te whnau. 65 66 What can I do to help myself Many people feel there is nothing they can do when they are told they have cancer. They feel out of control and helpless for a while. However there are practical ways you can help yourself. Diet and food safety A balanced nutritious diet will help to keep you as well as possible and cope with any side effects of treatment. The Cancer Society s booklet called Eating Well during Cancer Treatment Kia Pai te Kai i te w Maimoatanga Matepukupuku gives useful advice and recipes. Phone your local Cancer Society office for a copy of this booklet call the cancer nurses on the Cancer Information Helpline 0800 CANCER (226 237) or download it from our website www.cancernz.org.nz. The hospital will also have a dietitian who can help. Te kai tika me te haumaru kai M te kai tika me te kai pai hei whina i a koe ki te noho ora me te rai i ng pnga kino ka whai i ng maimoatanga. Kei roto i te pukapuka Eating Well during Cancer Treatment Kia Pai te Kai i te w Maimotanga Matepukupuku a Te Khui Matepukupuku o Aotearoa tahi tohutohu whai kiko m te kai me tahi tohutaka. Waea atu ki t Khui Matepukupuku -Rohe m ttahi kape o te pukapuka nei me waea atu rnei ki ng tapuhi matepukupuku i runga i te Waea-whina 67 Prongo Matepukupuku 0800 CANCER (226 237) m ttahi kape me tikiake rnei i t mtou paetukutuku www.cancernz.org.nz. Kei te hhipera ttahi tohunga m te kai pai hei whina an. Food safety is of special concern to cancer patients especially during treatment which may suppress immune function. To make food as safe as possible it is recommended that patients follow the guidelines below Wash hands thoroughly before eating. Keep all aspects of food preparation clean including washing hands before preparing food and washing fruit and vegetables. Handle raw meat fish poultry and eggs with care and clean thoroughly any surfaces that have been in contact with these foods. Keep raw meats separate from cooked food. Cook meat poultry and fish thoroughly and use pasteurised milk and juices. Cover and refrigerate food promptly to minimise bacterial growth. When eating in restaurants avoid foods that may have bacterial contamination such as salads sushi and raw or undercooked meats fish poultry and eggs. If there is any concern about the purity of your water (for example if you have well water) have it checked for bacterial content. 68 69 Exercise Many people find regular exercise helps. Research has shown that people who do regular exercise cope better with their treatment. Discuss with your cancer doctor what is best for you. Relaxation techniques Some people find relaxation or meditation helps them to feel better. The hospital social worker cancer nurse or local Cancer Society will know whether the hospital runs any relaxation programmes or may be able to advise you on local community programmes. You may find yoga tai chi or meditation help you to relax. Seeking advice from health professionals If you feel uncomfortable or unsure about your treatment it is important that you discuss any concerns with those involved in your care including your GP. Ng ptai tr pea e hiahia ana koe ki te ptai Kia kaha tonu te ptai i ng ptai. I tahi w ka wareware i a koe ng ptai e hiahia ana koe ki te whiu in kite koe i t mtanga i t tapuhi rnei n reira me tuhi i te w ka whakaarohia e koe ka hari i t rrangi ptai i t haerenga ki t hui hauora. 70 Questions you may wish to ask Ask as many questions as you want to. It s easy to forget the questions you want to ask when you see your cancer doctor or nurse so you may like to write them down as you think of them and take your list with you to your appointment. There is a list of questions below you may find useful. The Cancer Society also has a booklet of useful questions titled Questions You May Wish To Ask that you can receive by phoning the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237) by picking up a copy from your local Cancer Society or by viewing and downloading it from our website www.cancernz.org.nz questions. 1. 2. 3. 4. 5. 6. 7. 8. 9. What are the advantages and disadvantages of chemotherapy for me Are there any other treatments I can have instead Will chemotherapy cure me or simply control the cancer Am I having chemotherapy to lessen the chance of the cancer coming back What difference would it make if I waited What will happen to me if I don t have chemotherapy Can I have a second opinion How long will my treatment last and how often will I have to have it Will chemotherapy be given to me as tablets or injections or a drip 71 10. Will I have to stay in hospital 11. How long will each treatment take 12. Will I be able to carry on with my normal life when I m not at the hospital 13. If I can have the treatment privately how much does it cost 14. What side effects can I expect 15. How long after my treatment ends will it take for the side effects to go 16. Will there be any permanent damage 17. Will I still be able to have children in future 18. Can I keep on taking my usual medicines 19. Are there any special foods or drinks I should or shouldn t have 20. Is there anything I need to be particularly careful about during my treatment and or after my treatment ends If there are answers you do not understand feel comfortable to say Would you please explain that again I am not sure what you mean. Would you please draw a diagram or write it down 72 Suggested reading and websites Reading Phil Kerslake. Life Happiness & Cancer Survive with action and attitude. Steele Roberts Publishers Wellington New Zealand 2006. Websites Macmillan Cancer Support (UK) www.macmillan.org.uk Cancer Council Victoria (Australia) www.cancervic.org.au National Cancer Institute (USA) www.cancer.gov cancerinfo The suggested websites other than our own are not maintained by the Cancer Society of New Zealand. We only suggest sites we believe offer credible and responsible information but we cannot guarantee that the information on these websites is correct up-to-date or evidence-based medical information. We suggest you discuss any information you find with your cancer care health professionals. This booklet Chemotherapy Hahau is part of a series titled Understanding Cancer which is published by the Cancer Society. These booklets and booklets from the Living with Cancer series can be viewed and downloaded from our website www.cancernz.org.nz. 73 Glossary (What does that word mean ) adjuvant chemotherapy treatment of cancer with drugs to aid or assist another treatment. benign a tumour that is not malignant not cancerous and won t spread to another part of your body. carcinoma in situ a malignant tumour that is confined to its original site. cells the building blocks of the body. A human is made of millions of cells which are adapted for different functions. Cells are able to reproduce themselves exactly unless they are abnormal or damaged as are cancer cells. genes the tiny factors that govern the way the body s cells grow and behave. Each person has a set of many thousands of genes inherited from both parents. Genes are found in every cell of the body. infusion pump some chemotherapy drugs can be given via an infusion pump which is a small portable device allowing the patient to have their chemotherapy at home. There are several types of pumps available all designed to deliver a measured dose of medication continuously. lumbar puncture insertion of a hollow needle into the lower spinal canal to withdraw fluid for diagnosis or to give drugs. 74 malignant a tumour that is cancerous and likely to spread if it is not treated. metastasis (plural metastases) a cancer that has grown in a different part of the body because of the spread of cancer cells from the original site. For example someone with breast cancer may have metastases in their bones also called secondary cancer. palliative controlling the symptoms of a disease rather than curing it. primary a malignant tumour starts in one site of the body where it is known as the primary tumour. tumour a swelling or lump. Tumours can be benign (not cancerous) or malignant (cancerous). 75 Notes You may wish to use this space to write down any questions you want to ask your cancer doctors nurses or health providers at your next appointment. Whakamahia tnei whi wtea hei tuhi ptai e hiahia ana koe ki te ptai i t rata ng tapuhi ng kaiwhakarato hauora rnei m te w e hoki atu ai koe. 76 77 Notes 78 79 Notes 80 Cancer Society of New Zealand Inc Te Khui Matepukupuku o Aotearoa National Office PO Box 12700 Wellington 6011 Telephone (04) 494-7270 Auckland Division PO Box 1724 Auckland 1023 Telephone (09) 308-0160 Covering Northland Waikato Bay of Plenty Division PO Box 134 Hamilton 3216 Telephone (07) 838-2027 Covering Tauranga Rotorua Taupo Thames and Waikato Central Districts Division PO Box 5096 Palmerston North 4410 Telephone (06) 364-8989 Covering Taranaki Wanganui Manawatu Hawke s Bay and Gisborne East Coast 81 Wellington Division 52-62 Riddiford Street Wellington 6021 Telephone (04) 389-8421 Covering Marlborough Nelson Wairarapa and Wellington Canterbury West Coast Division PO Box 13450 Christchurch 8011 Telephone (03) 379-5835 Covering South Canterbury West Coast Ashburton Otago Southland Division PO Box 6258 Dunedin 9016 Telephone (03) 477-7447 Cancer Information Helpline 0800 CANCER (226 237) www.cancernz.org.nz 82 Feedback Chemotherapy Hahau 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 Information Manager at the address at the bottom of the following page. 1. Did you find this booklet helpful Yes No Please give reason(s) for your answer. 2. Did you find the booklet easy to understand Yes No Please give reason(s) for your answer. 3. Did you have any questions not answered in the booklet Yes No If yes what were they 83 4. What did you like the most about the booklet 5. What did you like the least about the booklet 6. Any other comments Personal information (optional) Are you a person with cancer or a friend relative whnau member Gender Female Male Age Ethnicity (please specify) 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 Information Manager Cancer Society of New Zealand PO Box 12700 Wellington 6011. 84 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. Acknowledgements The Cancer Society would like to thank for their reviews advice and contributions Dr Richard Isaacs Medical Oncologist Palmerston North Hospital Associate Professor Chris Atkinson Oncologist St George Hospital Christchurch and the Cancer Society of New Zealand s Medical Director Cathie Teague Clinical Nurse Specialist - Medical Oncology Wellington Blood and Cancer Centre Wellington Cath Christmas Oncology Nurse Nelson Marlborough District Health Board Meg Biggs Julie Holt and Michelle Gundersen-Reid Cancer Society Information Nurses Sarah Stacy-Baynes Information Manager We also thank the people who have had chemotherapy and reviewed this edition 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. Photography The Cancer Society would like to thank Louise Goossens for her photography. Cancer affects New Zealanders from all walks of life and all regions of our beautiful country. Cover photo 27106OB30 Small boat pulled up on golden sands of Big Kuri Bay beach. South east Stewart Island. Coastal Flax Stewart Island Stewart Island District New Zealand Cancer Society of New Zealand Inc. (2011) All rights reserved. No part of this publication may be reproduced stored in a retrieval system or transmitted in any form or by any means electronic mechanical photocopying recording or otherwise without the prior permission of the publisher. www.cancernz.org.nz ANY QUESTION ANY CANCER 0800 CANCER (226 237) Cancer Information Helpline PI 110