Listen with your heart: What we can do to take care of a loved one with cancer

Transcription

1 Listen with your heart: What we can do to take care of a loved one with cancer የኢትዮጵያ ፌደራላዊ ዴሞክራሲያዊ ሪፑብሊክ የጤና ጥበቃ ሚኒስቴር Federal Democratic Republic of Ethiopia Minisry of Health

2 Acknowledgments This booklet was prepared by the Johns Hopkins Center for Communication Programs and Qayana Communication PLC in collaboration with the Federal Ministry of Health in Ethiopia and with support from the American Cancer Society. Representatives from cancer organizations in Ethiopia provided technical guidance and designed the booklet content based on qualitative research among cancer patients and their caregivers. The content in the booklet is an adaptation from materials prepared by the American Cancer Society. Some limited content was adapted from MacMillan Cancer Support, and the U.S. National Cancer Institute. MADO Communication PLC was responsible for graphic design and illustrations. Copyright The American Cancer Society, Inc. 2 What Is Cancer?

3 Preface: When a loved one has cancer Finding out that someone we love has cancer is very difficult. We may feel overwhelmed by our own feelings of shock and fear even as we struggle to find words that will comfort and reassure our family member or friend. This booklet will help you learn how to communicate openly with your loved one about cancer and provide the support that is truly needed. This booklet describes how you, as a caregiver, can cope with the many challenges and demands that cancer has brought into your life. It also provides general information about cancer that you should know. The words of other caregivers who have gone through similar experiences are presented in this booklet to give voice to some of the thoughts and feelings you may have. It is important to know that you are not alone. Being an effective caregiver takes a lot of time, courage, and love. We hope this booklet will help you to Listen With Your Heart while you are on this journey. What Is Cancer? i

4 Content Preface: When a loved one has cancer i Chapter 1: What Is Cancer? 1 Chapter 2: Cancer Treatment 10 Chapter 3: Coping with Cancer 18 Chapter 4: What Can I Do? 27 Chapter 5: Facing the final stage of life 30 A caregiver should be able to give care positively. Caregiver ii What Is Cancer?

5 Chapter 1: What Is Cancer? About cancer Learning that a loved one has cancer can be very upsetting. The word cancer itself can create feelings of fear -- it often makes people think about death. But, in fact, many types of cancer can be treated, and many people do survive cancer. In Ethiopia, more and more people are diagnosed with cancer each year. In 2012, 61,000 new cancer patients were registered in Ethiopia. Many people in Ethiopia have lived for many years after learning they have cancer. So even though finding out about cancer is very upsetting, there is reason to have hope. No matter what news your loved one may hear from the doctor, this booklet can help everyone cope with the situation. What is cancer? In our body there are tiny units of life that are called cells. The cells in our bodies all have their own jobs to do. When healthy cells are worn out or damaged, they die and are replaced with new cells. NORMAL CELL CANCER CELL DOUBLING MALIGNANT TUMOUR What Is Cancer? 1

6 Cancer is a disease caused when cells don t follow this normal process. Cancer cells keep on growing out of control, making new cells that don t die. These cells crowd out normal cells. This causes problems in the part of the body where the cancer started. Cancer cells can start in any part of the body such as the oesophagus, breast, or liver. Cancer cells also can move to other parts of the body and cause more problems there. When cancer cells move to other parts of the body, this is called metastasis. For example, cancer cells can start in the lungs and then travel to the bones and grow there. But when lung cancer cells start to grow in the bones, it s still called lung cancer. Cancers are named for where they start, not where they end up. The rate at which cancer cells grow and divide in our body depends on the type of cancer. Some cancers grow and spread quickly. Others grow more slowly. Most cancers form a lump called a tumour or a growth. But not all tumours are cancer. Doctors can take a small piece of the lump and look at it to find out if it is cancer. This is called a biopsy. Lumps that are not cancer are called benign. Lumps that are cancer are called malignant. There are some cancers, like leukemia (cancer of the blood), that do not form tumours. They grow in the blood cells or other parts of the body. When someone has cancer, the doctor will want to find out what kind of cancer it is. Different types of cancer respond to treatment in different ways. Often two or more kinds of treatments are used to get the best results. Who gets cancer? Cancer can happen at any age. Most cancers are found in older people, but young children can get cancer, too. And just as cancer doesn t have an age limit, it can also occur in all people regardless of their gender, racial, ethnic groups and socioeconomic background. Anyone can get cancer. 2 What Is Cancer?

7 Common Cancer Types in Ethiopia In Men Colorectal Leukemia Prostate Skin In Women Breast Cervical Ovarian Colorectal STOMACH CANCER OESOPHAGUS CANCER COLORECTAL CANCER CANCER BREAST CANCER CANCER OESOPHAGUS CANCER OESOPHAGUS MUSCLE ADIPOSE TISSUE (FAT) COLON APPENDIX RECTUM STOMACH STOMACH CANCER DUCTS LOBULES PROSTATE CANCER KAPOSI SARCOMA CANCER CERVIX CANCER URETER BLADDER PROSTATE URETHRA CANCER MULTIPLE LESIONS AND NODULES ON AND UNDER THE SKIN CANCER UTERUS CERVIX VAGINA What Is Cancer? 3

8 What causes cancer? The first question that your loved one may ask is, What did I do wrong? or Why me? Some people believe they re being punished for something they did or didn t do in the past. Most people wonder if they did something to cause the cancer. Thinking like this is very common when something as hard as cancer happens. Many people in the community may think this way, too. But cancer isn t a punishment for a past sin. It s not something we bring upon ourselves. The fact is no one not even doctors and scientists knows exactly what has caused cancer in your loved one. Help the person with cancer understand that they should not use their time and energy trying to understand how they got cancer. It s better for them to focus on taking good care of themselves. However, studies show that there are risk factors that can increase your chances of getting cancer. Some risk factors include age, smoking, infections, obesity, excessive alcohol use and too much sunlight. 4 What Is Cancer?

9 It can happen to anyone - kids or older people. It is possible for anyone to get cancer. It doesn't select only a certain type of person. Patient What Is Cancer? 5

10 Having one or more of these risk factors can increase a person s chances of getting cancer, but there are people who get cancer who do not have any of these risk factors. And there are people with risk factors who never get cancer. Is cancer contagious? Many people worry that they will get cancer from being around someone who has it. But cancer is not contagious. Cancer does not spread from one person to another. It is completely safe for you and your family to live with a person who has cancer. It is safe for your neighbors and friends to visit and eat with them. It is safe to wash their clothes. Is cancer inherited? Some cancers can run in families, but cancer isn t passed on from parent to child the same way that height is. Cancer also cannot be passed from mother to child in the same way as HIV. Helpful Tips As a caregiver, you ll need to speak up on behalf of your loved one to make sure that they are treated well by family members, relatives, and friends. Many people in Ethiopia do not have the correct information about cancer. You can help by remembering these points: Cancer is not a punishment for a sin or anything that the patient has done. It is not the patient s fault that they have cancer. Cancer can happen to anyone. It is nearly impossible to know the exact cause of cancer in your loved one. Doctors and scientists do not know so how could anyone else? Cancer is not a death sentence. There are treatments that help many patients live long lives. Sometimes, patients can be cured of cancer. Cancer is not contagious. It is safe to eat, visit, and live with people who have cancer. No one will catch cancer from them. 6 What Is Cancer?

11 When I first found out that my mother had cancer our neighbors said Why are you going through all this trouble, why spend all the money you have. It is when we came to Tikur Anbessa, when we saw others, when we read this booklet that we understood. Caregiver What Is Cancer? 7

12 You don t see people who have cancer being shunned in the community. But they think it is linked with your sins, some wrong you have done or a curse. Caregiver 8 What Is Cancer?

13 Signs and Symptoms Sometimes, it is possible to find cancer early through screening before having symptoms. The Ministry of Health recommends regular check-ups and certain tests for cervical and breast cancer for women even though they have no symptoms. Different people experience different signs and symptoms, and these often depend on the Unexplained weight loss: type and stage of cancer. Below are some common signs and symptoms of cancer. No symptom should be ignored or overlooked, especially if it has lasted a long time or is getting worse. Although experiencing these signs and symptoms does not mean you have cancer, it is always better to visit the health facility if you have any concerns about your health. Unusual bleeding: Unexplained pain: Lump or swelling: Skin changes: What Is Cancer? 9

14 Chapter 2: Cancer Treatment What kind of cancer is it? Before deciding upon a treatment plan, the doctor may order tests such as a biopsy, x-ray, CT scan or blood tests to find out what type of cancer your loved one has and what stage it is. Staging is the process of finding out how much cancer there is and how far it has spread in the body. For most cancers, there are four stages. Stage 1 or 2 means that the cancer has not spread to other parts of the body, and can more easily be treated. Stage 3 means it has begun spreading, and will be more difficult to treat. How is cancer treated? The treatment plan will depend on the type of cancer your loved one has, the stage of their cancer, and their age and overall health. Cancer treatment usually has one of three goals. The first treatment goal could be to cure the cancer entirely. If a cure is not possible, the second treatment goal might be to control the growth and spread of the cancer. The third treatment goal might be to treat the symptoms of the cancer to reduce pain and improve the quality of life. Encourage your loved one to ask the doctor questions about what the purpose of the treatment is. Stage 4 is the highest stage. It means that the cancer has spread to other parts of the body and will be more difficult to cure. 10 Cancer Treatment

15 We get upset by the fact that patients don t start treatment and get medication immediately. But it takes time for the doctors to figure out exactly what the sickness is. Caregiver Cancer Treatment 11

16 Types of treatment The most common treatments for cancer are surgery, chemotherapy and radiotherapy. These treatments may be given alone or used in combination. For example, radiation and chemotherapy can be given before or after surgery. Surgery can be used to remove the cancer. Many people with cancer have surgery. Surgery is most successful when the tumour has not spread to other areas. Sometimes it s hard to tell how much surgery is needed until the surgeon sees the extent of the cancer during the operation. 12 Cancer Treatment

17 Surgery offers the greatest chance of a cure for many types of cancer. It may also be used to treat problems caused by cancer, such as taking out a tumour that s blocking the intestine. The doctor might also take out some or all of the body part that has cancer. Surgery is not used for all types of cancer. For example, blood cancers like leukemia are best treated with drugs. Chemo (short for chemotherapy) is used to kill cancer cells or slow their growth. There are many different kinds of chemo. The chemo each patient gets is based on the type of cancer he/she has and its stage. Some chemo is given by drip (into a blood vein through a needle), and some are pills to swallow. Chemo is given in cycles, each followed by a rest period. A cycle might be one dose followed by days or weeks without treatment. The rest period gives the body s normal cells time to recover. Because chemo travels to nearly all parts of the body, it is useful for cancer that has spread. Chemo can be used to: Cure the cancer. Keep cancer from spreading. Kill cancer cells that may have already spread. Slow the tumour s growth. Relieve symptoms caused by cancer. Shrink a tumour before surgery is done to remove it. Lower the risk of cancer coming back after surgery. Patients can register twice a week for a chemo bed at Tikur Anbessa Hospital. People who already have started their chemo cycles are prioritized before new clients. Once current patients are admitted, new patients receive beds based on the order of their registration. Patients often have to wait some time for beds, so it is important to plan for shelter, transportation, food, and medical expenses. Cancer Treatment 13

18 Radiotherapy is also used to kill or slow the growth of cancer cells. It can be used to treat cancer or to alleviate the pain and symptoms of cancer. Like surgery, radiation therapy is used mostly to treat localized cancers those contained in one area. Radiation is given two ways: either high-energy rays are aimed from a machine (external radiation) or implants are put into the body near the tumour. Radiation can also affect normal cells near the cancer cells. But, normal cells can repair themselves, and cancer cells cannot. Radiation can be used alone or with surgery or chemo. More than half of all people with cancer get radiation at some point. If the doctor orders radiation therapy, the patient will register for the queue with the radiation therapy department. The queue can take from six months to a year or more. The department will call the patient s phone number when it is his or her turn for treatment. Hormonal Therapy is the use of medicines to block the effects of hormones. This method does not work for all types of cancer. Hormonal therapy is used for people with cancer that are hormone sensitive or hormone dependent such as breast, prostate and thyroid cancers. This is one of the treatment options available at Tikur Anbessa and is typically given on an outpatient basis. Palliative Care is a service that is given to alleviate the pain and suffering of cancer patients. Patients who require palliative care are seen on a weekly basis at Tikur Anbessa. What are side effects of treatment? All cancer treatments can have side effects. The most common side effects are fatigue, nausea and vomiting, short-term hair loss, skin change and loss of appetite. Sometimes treatment can cause side effects in a specific location of your body. For example, radiation directed at the breast can cause 14 Cancer Treatment

19 skin changes like redness and thickening. Side effects depend on the type of drugs, the amount taken, and the length of the treatment. Most side effects will clear up through time. But some might be around for a long time. Some side effects might not be seen until years after treatment. Most side effects of cancer treatment can be treated. Talk to the doctor about any problems your loved one may have during and after treatment. You can learn ways to manage common side effects on pages When Cancer Responds to Treatment (Remission)? Remission is a period of time when the cancer is responding to treatment or is under control. Cancer can go into either complete remission or partial remission. Cancer Treatment 15

20 Temporary Hair Loss Mouth Sores Skin Irritation Complete remission means that all the signs and symptoms go away and cancer cells can t be found with any of the tests used for that cancer. Partial remission is when the cancer shrinks, but still causes symptoms or can be detected on tests. Remissions can last anywhere from many weeks to many years. Some people think that remission means the cancer has been cured, but that s not always the case. Sometimes the cancer can come back. A cancer that has come back may require a different kind of treatment than what was given the first time. How will we pay for all of this? Cancer treatment can take a lot of time and money. The cost of treatment depends on the type of cancer, the type of treatment, how long the treatment lasts, and the type and amount of medicine prescribed. It is important to budget for both treatment as well as for transportation, room, and board if you and the patient are traveling from other regions. You may want to help the person with cancer register for a poverty certificate from his or her kebele in order to access free treatment. Organisations who can provide support are listed at the end of this booklet. 16 Cancer Treatment

21 Helpful Tips Many caregivers find that it is helpful to understand as much about cancer, testing, and treatment options as possible. It may also be important for you to help your loved one organize his or her questions for the doctor, such as: What type of cancer do I have? What treatment do you recommend? What is the purpose of the treatment? Is it to cure the disease, make the cancer stop growing, or to relieve symptoms? What are the possible side effects of treatment? What stage of cancer do I have? It may help to write down or ask the doctor to write down key information about the type of cancer, the treatment to be given, and any medications to take. There may not be enough time for the doctor to answer all the questions. Remember to ask the most important questions first. Save others for the next visit or ask a nurse or other health professional for help. I have learned that any patient can ask about the stage their disease is at. Also, if they are not feeling well (having side effects), they should ask about the medication they are on. Cancer Patient Cancer Treatment 17

22 Chapter 3: Coping with Cancer Waiting for an answer Chances are, your loved one has been waiting a long time to learn the cause of their pain and symptoms. Many people in Ethiopia wait for a year or longer before being referred to Tikur Anbessa Referral Hospital. Once at the hospital, there are long waits for appointments, test results, and treatment beds. This is often a very scary time for patients. Having someone who will stand by them and share their worries is very important. If your loved one confides in you, they probably just need you to listen and offer hope. Waiting is always difficult, but having someone to wait with eases the burden. Finding out it s cancer If cancer is found, the doctor usually is the one who tells the patient. At first, most patients and their caregivers need some time to adjust to the news. Feelings such as disbelief, shock, fear, and anger are all normal. These feelings use up a lot of mental energy. This can make it even harder to take in and understand all the medical information shared by the doctors. Sometimes when the doctor talks with the patient and a family member or friend is there, it gives the patient a feeling of support they know they re not facing cancer alone. But some people prefer to keep their talks with the doctor private. Ask the patient whether they want you or someone else - to go along with them when they go to get their test result. If you go with the patient to get test results If you go with your loved one to the doctor s visit, it is important to be prepared to hear difficult news. You may hear good news instead, of course, but it is best to try to prepare yourself. If the tests show that it is cancer, do your best to stay calm. Try to pay close attention to what the doctor says next. You may even want to take notes on what the doctor says so that you can remember important information later. People react to the news in different ways. Some people want to talk about what the doctor has said in detail, while others want to wait to talk about it. Let your loved one know that you are ready to talk about the illness whenever he or she is ready. When you do talk about the visit, do not go into all the details if your loved one seems overwhelmed. Slow 18 Coping with Cancer

23 The message I got from this booklet is that it is the disease that sometimes makes her angry and lose hope. So I have to be understanding and learn to be patient when such things happen. Caregiver Coping with Cancer 19

24 down and focus on answering their specific questions. If you re not comfortable talking about cancer, you may not be the best person to talk with at this time. You may need time to work through your own feelings. Let your loved one know that you are not the best person for them to talk with right now and suggest that they speak with a different friend or family member who is able to offer more support. Dealing with emotions Venting anger and frustration A person with cancer may feel upset and hopeless because of cancer, but he or she may have difficulty expressing these feelings properly. Instead of expressing sadness or fear they maybe become angry toward family members and friends. It helps to remember that people often vent their feelings to people who make them feel safe those people who will be there for them no matter what they say or do. Try not to take the outbursts personally, but be patient and take things lightly if and when such outbursts occur. Acting passive Sometimes a person with cancer seems to become childlike and passive, looking to others for direction. It can be very hard for an adult to see their parent or spouse act this way. Try to understand that this is one way of expressing how helpless and weak they feel. These are normal feelings to have when a person has cancer. Though the disease may limit their ability to do some things, it s usually best for the person with cancer to keep living as normally as possible. Continuing to be a responsible adult can give them a sense of meaning, confidence, and control. Giving into feelings of dependence will make the person with cancer feel even more helpless and out of control. Fear and anxiety Cancer causes a lot of anxiety and fear for most patients. There s fear about the future, relationships, finances, and the many physical and emotional changes that come with cancer. Because they have so much anxiety in their lives, a person with cancer may seem upset or frightened about things that have nothing to do with cancer. Sometimes their anxiety may cause them to sound harsh or mean. You may find that you are having fights even when you are only trying to help. These are times when we have to just be patient and let go. Depression Many people go through a time of grief, fear, anger, and sadness when they first learn that they have cancer. This is normal. But if these feelings 20 Coping with Cancer

25 continue and are severe, then the person with cancer may have depression. If your loved one feels worthless or helpless, or is too sad to leave the house or get out of bed, be sure to talk with a doctor. Depression can be treated with medicines, counseling, or both. Being with your loved one When someone is sick and looks very different, it can be shocking and upsetting. Sometimes just seeing a lot of medical equipment around someone you care about can be disturbing. Remember that this is the same person you ve always known. Try to relate to them in the same way you have in the past. Don t be afraid to show your feelings, but make sure your loved one does not need to comfort you. That s often too much for a patient to manage. When words seem too little, a look or touch can say a lot. If you cannot stop yourself from crying, it s all right. Explain how much you care and how upset you are that they re going through such a hard time. If you re not sure what to say, start by asking, What are you feeling? Be ready to listen to whatever may come up. Your loved one may be thinking a lot about death or be worried about what the future holds for their family. Maybe the person will tell you they re afraid they won t live to see their children grow up. You don t have to reply, but you must be ready to hear the pain or unpleasant thoughts that the question might bring up. Your loved one may want your opinion about their illness, treatment, and treatment outlook. Be open and honest, but if you don t know the answer to a question, just say so. The person with cancer will sense your honesty and appreciate it. Talking to others about cancer Your loved one might find it difficult to tell people that they have cancer. Some patients might not want to even say the word cancer. They may worry that others will shun them or say something to hurt their feelings. Since there are very low levels of knowledge about cancer in our society, such things could possibly happen. As caregivers, we can offer our support in helping the patient accept the news and find the strength to tell others about their illness. Just being by their side when they tell others can be a big source of support. Be sure to correct any misperceptions or help answer questions that may arise when you are telling family members or friends about the illness. Coping with Cancer 21

26 What she was doing, what she was saying I read about these things in this booklet! I said, 'Aha, it's the nature of the illness that gets you to this stage.' I accepted that, and I understood that even if she brings up worse ideas I should treat her well and protect her emotions. Caregiver 22 Coping with Cancer

27 We know that she has cancer; it was confirmed through the tests she took. But she doesn t want to accept that she has cancer, or that she is a cancer patient. Caregiver Living with cancer Cancer affects the whole family, not just the person who has it. It often changes roles and routines within the family. Family members may need to help the patient or even take over things they once handled. However, as much as possible, encourage the patient to take care of themselves. You may feel the need to overprotect them, but in the long run that probably isn t helpful. It will only create feelings of dependency. Try to keep life as normal as possible by doing the same activities you used to do together. Use your judgment about your loved one s energy level. Ask them if they need to take rest breaks. Try not to take the effects of the illness too lightly, but don t be overprotective. As much as possible, try to help the person with cancer have as normal a life as their illness allows. Asking for support Caring for a person with cancer can be a big burden. Many caregivers develop their own physical and emotional problems as a result of the stress and financial hardship. That s why it s so important to seek support from family members or friends when we start to feel burned out. We need time to ourselves -- for other duties, rest, and relaxation. As time goes by, those whom we thought would support us may start to focus on other things. But this doesn t mean that they don t care about us. So, when we seek support, we need to be clear about what close friends and family can to do help us. We also need to understand that people cannot always do what we ask. Instead of being upset, ask them what they can do to help. When you have a lot to think about and feel stressed, consider talking with religious leaders or counselors. Talking openly with those we trust might provide relief and help us identify solutions to our problems. If your loved one decides to stop getting treatment There are people who choose not to get any cancer treatment at all, or they choose to stop the treatment after Coping with Cancer 23

28 I think it is good if they drop this behavior of hiding, but you can t force them. You can tell them the possibilities that it is helpful if you disclose, that you won't be as stressed or worried once it is known. I have read this in the booklet, and it is good if we teach them about this. Plus anyone can get cancer. Health Worker 24 Coping with Cancer

29 We caregivers feel like people don t think of us and ask ourselves Why are they not thinking of me? The more we suffer and nobody responds, the more we feel like that. When there is nobody to support us it breaks us emotionally If you ask people for their assistance and they are not able to help you, you might get even more hurt. So there are times when I hold myself back from asking. Inside I know I need their help yet I don t speak up. Even when I get the courage to ask I don t push it far. Caregiver they ve started. Patients may decide that treatment aimed at fighting the cancer is no longer worth the physical and emotional cost they want to let the disease run its course. This can be very hard for family and friends who may not agree with this choice. But for the most part, people who are able to make decisions for themselves have the right to refuse any and all treatment. It s OK to ask your loved one about their reasons for refusing or discontinuing cancer treatment. Even though the answer may be hard to hear, the choice to refuse treatment is the patient s no one else s. Often, the reasons make sense and give you a better idea of what s going on. It s also OK to tell the patient what you think. Even after a person refuses cancer treatment, it s important to make sure they fully understand their options. You may want to ask your loved one to talk with a doctor about the decision and whether any treatments might help. Some patients will agree to talk with a doctor, and others won t. But don t be surprised if, after talking with a doctor, the person still refuses treatment. Again, they have the right to make their own choices, just as you have the right to feel the way you do. Try to see it from the point of view of the person with cancer, and continue to offer your support and friendship. Sometimes people who say no to treatments might be okay with palliative care. Palliative care helps keep people with cancer from having severe pain, nausea, or other symptoms. It s care that aims to treat symptoms, not cancer. It helps the person feel as good as possible for as long as possible. Coping with Cancer 25

30 My daughter used to be very outgoing. Now that she is very sick, she is usually quiet. But I know all that she needs and I make sure she gets it. Caregiver 26 Coping with Cancer

31 Chapter 4: What Can I Do? Being a caregiver means helping the patient in their day-to-day activities. This can include going to the hospital together, feeding, bathing or dressing the patient, taking them to where they want to go; ensuring they are taking their medicine appropriately; and finding as much information as you can about how to cope with the situation. It also means listening with your heart and supporting your loved one emotionally. Here are some important reminders about communication: Let them take the lead. If they want to talk, be a good listener. Maintain eye contact. Listen to what is said and how it s said. Try to be OK with silence. It may help people with cancer to focus their thoughts. Talking because you are nervous can be irritating. Touching, smiling, and warm looks can get past the barriers of the illness to the person you know and love. Try not to give advice. Giving good advice is hard when you are not in the person s shoes. It s safer to ask questions or listen. People with cancer don t always want to think or talk about their disease. Laughing and talking about other things are often welcome distractions. Don t try to do it all yourself! Remember that professional help is there for you, too. Ask the doctors or nurses for help when you need it. Most of all, be yourself. Try not to worry about whether you are doing things the right way. Let your words and your actions come from your heart. Your compassion and genuine caring are the most important things you can express right now. Diet and nutrition Cancer patients can eat any food they want as long it is prepared with good hygiene. If possible, make sure the person with cancer eats a balanced diet of protein (such as meat, eggs, chicken, fish, milk, lentils, beans, chickpeas) and carbohydrates (such as injera, bread, potatoes, corn, oats, wheat, and barley). It is very important to eat fresh fruits and vegetables such as tomatoes, kale, spinach, salads, oranges, bananas, What Can I Do? 27

32 and papaya at least twice a day if possible. The patient should try to eat a variety of food every day. It may be better to have several small meals a day instead of three heavy meals. He or she should avoid drinking alcohol, taking Khat, and smoking cigarettes. It is important to try to drink at least 8 glasses of water every day. If the patient has little appetite, let the doctor or nurse know. They may be able to prescribe medications that can help increase appetite. What you can do about side effects Cancer treatment can have side effects. Here is a list of common side effects and ways you can help the person with cancer be more comfortable during treatment: Fatigue: The fatigue that comes with cancer is very different from the fatigue of daily life. It can leave patients feeling weak, exhausted, irritable, and slow. They may sleep too much or too little. You can help by encouraging the patient to eat a balanced diet, drink plenty of water, and begin an exercise Protein Fresh Fruits and Vegetables Carbohydrates Fats and Oils Water 28 What Can I Do?

33 routine (with the doctor s OK). Contact the doctor to learn how to manage any pain, nausea, or depression. Most of all, offer your sympathy for the patient who is likely very frustrated at having to rest so much. You may need to take on some of their responsibilities so that the patient can rest. Diarrhea: Diarrhea is common during cancer and has many causes - chemotherapy, radiation therapy, infection or the tumour itself. It can help to serve the patient salty foods, such as broths and soups; potatoes with the skin; and bananas, fruit juices, cooked carrots, white rice, and yoghurt. Be sure that the patient drinks plenty of water and avoid milk, alcohol, coffee, citrus juices, and hot or spicy foods. Warning signs: Be sure to contact the doctor if your loved one is in pain, has a high fever, experiences dizziness, is not urinating or drinking fluids, or has blood in the stools. If he or she has been constipated and then starts to have small amounts of diarrhea or oozing of liquid stool, it is important to contact the doctor immediately. Nausea and vomiting: Nausea and vomiting are common side effects. Most of the time doctors prescribe anti-nausea/vomiting medicines. Inform the doctor if the medicine is not working. Temporary hair loss: Some chemo medicines and radiation can cause hair to fall out. Usually, hair will grow back after the treatment is completed. Until then, patients often use a scarf, cap or wig to cover their heads. Change in sexual desire: Both men and women often lose their desire for sex during treatment. If you are caring for a spouse or partner with cancer, let them know that you will follow their lead on whether or not to have sex during treatment. You still can find pleasure in physical intimacy during your treatment by hugging, touching, holding, and cuddling without sex. Fertility problems: Some types of treatment can cause problems with fertility. Cancer treatment can also cause birth defects. Doctors recommend that both men and women use a family planning method during treatment and for some time after treatment ends. It is best when both partners talk together about this decision. What Can I Do? 29

34 Chapter 5: Facing the final stage of life Some people have cancer that cannot be treated. They must face the fact that they will soon die. This is scary for the person who is sick and for those around them. The person with cancer may be in pain, may be bedridden, or confused. It s hard to watch someone you love go through this process of decline. Being there Sometimes when people are nearing death they begin to distance themselves from others. This is a natural process and one of the ways we disengage from life. The only thing you can do at this point is to follow the cue of your loved one and be present. Try not to take it personally or feel hurt this has nothing to do with you. No matter how hard it may be, it s important to be there for your loved one. Just by staying close and listening with a smile or gentle touch, you show how much you care. Talking about death and dying Many people worry about what to say when a person talks about dying. The patient may ask, Why is this happening to me? It s very hard to hear this question because there is no answer. And it s heart wrenching to feel the pain that lies within questions like this. In most cases, the simple answer is I don t know. Many people avoid the subject of dying and won t allow themselves the possibility of sharing this pain. Others may need to talk about some of the things they did in their life that they re not proud of or that they regret. They may want to apologize, or give you advice about the lessons they learned or instructions about what to do in the future. Respectfully listening and, of course, offering forgiveness and a loving attitude are often all that s necessary. There are no magic words for the dying person, but often your presence is all that s needed, and having an open heart is priceless. 30 What Can I Do?

35 Concern for the family and caregivers Being a caregiver for a cancer patient by itself might be tiresome, worrying and something that makes us feel lonely. Just as people with cancer should not spend all their time thinking about their illness, neither should family members and friends spend every spare minute thinking about or being with their loved one. Caregivers need relief and rest to stay emotionally and physically fit and be able to help the person with cancer. If you are a caregiver, plan time for yourself. Ask friends or other family members for help. Tell them exactly what they can do to help. If you re not the main caregiver of the person with cancer, it helps to think about the main caregiver, too. With all the attention being given to the person with cancer, the caregivers can easily be forgotten. Caregivers often focus most of their energy and time on the person with cancer and may not have time to take care of themselves. You may be able to offer help so that they can have a much-needed break. Just a couple of hours may be a big deal for someone whose loved one is very ill. Even if you re not able to do this, the caregiver might be glad to have someone ask how they are doing. At that time her mind was stressed and she became difficult to handle. She refused to take her medicine. Caregiver What Can I Do? 31

36 They (caregivers) talk, I can feel it, I feel them talking. I can feel it when they confer on how best to treat me... Cancer Patient 32 What Can I Do?

37 Resources Organisation Type of service Address and Phone Number Chemotherapy services Woreda 08 Health Center Landmark General Hospital Vision Internal Diagnosis Clinic Chemotherapy Around Amistegna police station Chemotherapy Chemotherapy Bête-zata Hospital Chemotherapy Laboratories Bête-zata Hospital Laboratory Family Guidance Association of Ethiopia Marie Stopes International Ethio-Vision Higher Clinic Laboratory Laboratory Laboratory and Biopsy Mexico behind Tobacco Monopole Pharmacies Abyssinia Pharmacy Cancer Medication Chechela Pharmacy Cancer Medication Tirat Pharmacy Cancer Medication Zemene Yohannes Cancer Medication Pharmacy Gishen pharmacy Cancer Medication Head Office Bole Stadium Hayahulet CMC What Can I Do? 33

38 Organisation Type of service Address and Phone Number Organisations which provide shelter, food and transport Mathiwos Wondu YeEthiopia Cancer Society YeEthiopia Cancer Association Cancer Care Ethiopia Shelter, food, transportation and support Shelter, food, transportation and support Shelter, food, transportation and support What Can I Do?

39 I wanted help a lot. I wanted help from family members. When there is only one caregiver he will get tired, and when he does the same thing over and over again he will get fed-up. This compromises the care and support that he can provide for the patient. This can be resolved if family members assign a person to help the caregiver. That s what is happening to me and what I am feeling. Caregiver

40 36 What Is Cancer?