After Diagnosis. Guide for Patients. የኢትዮጵያ ፌደራላዊ ዴሞክራሲያዊ ሪፑብሊክ የጤና ጥበቃ ሚኒስቴር Federal Democratic Republic of Ethiopia Minisry of Health

Transcription

1 After Diagnosis Guide for Patients 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. I read this booklet and it renewed my hope. Cancer Patient 2 Getting the Facts about Cancer

3 After Diagnosis Finding out you have cancer brings many changes for you and your loved ones. You probably have lots of questions. Can it be cured? What are my treatment options? What kind of problems might the treatment cause? How long will treatment take? Will I have to stay in a hospital? Will I be able to keep working? How much will cancer treatment cost? Here, we answer many questions about cancer, cancer treatment, and what to expect during your visit to Tikur Anbessa Referral Hospital. We also talk about the ways that people can cope with having cancer and what kinds of questions to ask your doctor. This booklet also contains quotations from cancer patients who have been treated at the hospital. These are the words of people who know what you are going through. We hope that all of this information will help you and your family as you find ways to cope with cancer. This booklet is not meant to replace the advice of your doctor or nurse. Talking with them is the best way to understand what is going on with your body and how treatment will work. i

4 Content After Diagnosis i Chapter 1: Getting the Facts about Cancer 1 Chapter 2: Coping with the News 8 Chapter 3: Talking about Cancer with People You Love 16 Chapter 4: Learning about Cancer Treatment 23 Chapter 5: Preparing for Your Visit 30 Chapter 6: Staying Healthy during Treatment 36

5 Chapter 1: Getting the Facts about Cancer Learning that you have 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 you may hear from the doctor, this booklet can help you cope with your 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. 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 also can move to other parts of the body and cause more problems there. Cancer cells can start in any part of the body, such as the oesophagus, breast, or liver. I did not know what cancer was...i didn t even know how many types of cancers there are. Cancer Patient Getting the Facts about Cancer 1

6 When cancer cells grow out of control they can move to other parts of the body and cause problems there. 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. NORMAL CELL CANCER DOUBLING CELL 2 Getting the Facts about Cancer MALIGNANT TUMOUR

7 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 socio-economic background. Anyone can get cancer. What causes cancer? We don t yet know why one person gets cancer and the other one doesn t. However, studies show 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 Getting the Facts about Cancer 3

8 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. Is cancer contagious? Many people worry that they will get cancer from being around someone who has it. That cannot happen. Cancer does not spread from one person to another. It is completely safe for family and friends to visit, eat, and live with you. It is safe for them to wash your clothes. You cannot infect others with cancer. 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. 4 Getting the Facts about 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. Cancer Patient Getting the Facts about Cancer 5

10 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: 6 Getting the Facts about Cancer

11 I can only accept what is to come to me with grace. If I get treated and I get better then I get better, and if I don t then I pray that He doesn t make it too painful. Cancer Patient Getting the Facts about Cancer 7

12 Chapter 2: Coping with the News How will I react to the news? Most people need some time to adjust to the fact that they have cancer. 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. You ll likely need some time to absorb and understand what your diagnosis and treatment options mean for you and your loved ones. You will need to give yourself and your loved ones time to work through these feelings. Why me? The first question that most people 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. Some think that if they had done something differently, they could have prevented it. Almost everyone wonders if they did something to cause the cancer. If you re having these thoughts, you re not alone. Most people have these thoughts when something as scary as cancer happens. But cancer isn t a punishment or a curse for things you did or didn t do. Anyone can get cancer no matter how they have lived their life. The reality is that no one not even doctors and scientists knows exactly what has caused your cancer. So don t blame yourself or spend your time and energy trying to figure out something that cannot be known. It will just add unnecessary stress. Instead, focus on what you can do to take good care of yourself. 8 Coping with the News

13 Why did I get this sickness, what have I done? What did I do wrong? Are my sins that different from others, I used to say. I used to fight with God asking if my sins were so different. Cancer Patient Coping with the News 9

14 Am I going to die from my cancer? Many people s first thought when they learn they have cancer is about death. They think that having cancer means the end of life. But many cancer types can be cured or slowed with proper medication and treatment. A person s chance for survival is based on what kind of cancer they have and how much it has spread in the body. This is called the stage of cancer. It is important to ask the doctor about the type of cancer you have, what stage it is, and whether there is a treatment that will cure or slow the spread of the cancer. Talk with your doctor about your chances of a cure or how long you might survive your cancer. They know your situation best. Sometimes people have cancer that cannot be treated. They are told that they might not be expected to live very long. Though this is very hard to hear and take in, it is better to know this information than to hide from it. It gives you and your family a chance to make plans who will take care of the children, the farm or business, and other family matters. How will I cope? People cope with cancer just like they cope with many other problems in life each person does it in their own way. With time and practice, we find ways to go on with our work, hobbies, and social relationships. We find new or different ways to live our lives to the fullest. As you look for a way of coping that works for you, try some of these ideas: Learn as much as you can about your cancer and its treatment. Some people find that learning about their cancer and its treatment gives them a sense of control over what s happening. Express your feelings. Many people feel that expressing sadness, fear, or anger is a sign of weakness. In fact, the opposite is often true. When we express 10 Coping with the News

15 I thought I would die, I didn t think I would survive. Cancer Patient Coping with the News 11

16 I have witnessed the depression in myself. I could not accept that it was cancer. But I knew I was sick. When I get sick I usually sleep, and when I get very depressed then I just want to be alone, for a long time, in a dark room, with no lights. Cancer Patient 12 Coping with the News

17 our feelings, we are able to communicate better and to get help from others. It can help to talk with trusted friends and relatives, keep a private journal, or go to a place of worship. Take care of yourself. Take good care of your body and your mind. Eat healthy food and make sure you get plenty of sleep. Spend time with a friend or loved one, meditate, listen to music or your favorite radio or TV show whatever brings you joy. If your doctor gives the OK, get some exercise. It can help you feel better both physically and mentally. members or friends, you may find it helpful to talk with other patients at Tikur Anbessa. Many patients have said it is helpful to share with others who are going through the same thing. There are also support groups for persons living with cancer. See the list in the back of this booklet to learn more. Try to focus on what you can control, not what you can t. Don t spend your time on things you can t control. Focus instead on taking good care of yourself. Reach out to others. There may be times when finding strength is hard and you are overwhelmed. It s very hard for any one person to handle having cancer all alone. In addition to talking with family Coping with the News 13

18 Am I depressed? Many people go through a time of grief and sadness when they first learn that they have cancer. Grieving feeling sadness, fear, anger, or having crying spells is a common reaction to learning you have cancer. This is normal. But if these feelings continue, you may be depressed. It is common for cancer patients to become depressed. Depressed people often have very low energy, decreased drive to do things, and trouble making decisions. They also may feel useless or helpless. Depression can make it much harder to keep up with cancer treatment plans. Some people are embarrassed or afraid to admit that they re depressed. But depression is not a sign of weakness and it s no one s fault. In fact, depression is often the result of physical changes in the body that are caused by cancer. Depression can make it much harder to keep up with cancer treatment plans, so be sure to talk to your doctor or nurse if you are feeling depressed. Depression can be treated with medicines, counseling, or both to help you feel better and regain a sense of control. You may be depressed if your time of grieving: Lasts for weeks and doesn t seem to be getting any better Makes you feel worthless or hopeless Causes problems with your day-to-day activities being too sad to leave the house or get out of bed 14 Coping with the News

19 My daughter used to be very outgoing but 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 Coping with the News 15

20 Chapter 3: Talking about Cancer with People You Love What makes people respond the way they do? Often, it is very hard to tell people we have cancer. We may worry that others will not understand us, or that they will stigmatize us, or hurt our feelings in some way. Because there are very low levels of knowledge about cancer in our society, such things could possibly happen. Sometimes people react in hurtful ways because of their own fear or lack of information. However, we have to keep reminding others and also ourselves that the cancer is not our fault, it s not contagious and it does not necessarily mean we will die soon. Talking with partners In preparing to tell a partner or significant other about cancer, find a convenient place and time. You may find it helps to talk with a friend first to get their advice on how to break the news. As much as possible, you need to respond to their questions truthfully. Try to give your partner a chance to deal with their emotions don t assume they ll back away from your relationship because of the cancer. Whatever happens, there is nothing to lose from telling the truth. Talking with family and friends It s up to you to decide if and when you want to tell adult relatives and friends. In the beginning you may only want to tell your spouse or partner and a few close friends or family members. Over time you may want to share with a larger circle of people. It s usually best to be honest. Keeping cancer a secret can lead to more stress at a time when you need the support of others. Remember, too, that your friends will most likely learn about your cancer at some point. If and when they do, they may feel hurt if you haven t told them. Or they may 16 Talking about Cancer with People You Love

21 become suspicious and make up reasons to explain why you withheld the information. This can make it harder for them to be supportive in the future. Before you talk to others about your illness, think through your reasons for telling them and what you expect of them. People react differently to upsetting news. Many times people don t know what to say, so they feel awkward and uncomfortable. They also may feel sad or be afraid they ll upset you. Some may become overly polite and careful, and others might ask a lot of personal questions. Sometimes people react in hurtful ways because of their own fear or lack of information. You can help by telling them what you want to talk about and what you want to avoid discussing. You could also let them know that you only need them to listen to you, and that you don t need them to say anything other than that they care and are there for you. Most likely your friends hearts are in the right places. They probably want to help you any way they can, but they aren t sure what to do. Be ready to tell them how they might help. You might ask them to do things like take you to and from the clinic, do some shopping, prepare food for you, or take your children to school. Once people have had time to adjust to the news, you can explain what kind of cancer you have and the treatments you ll need. Give them a clear and honest picture of what your life is like right now. Try to answer their questions. Be direct, and express needs and feelings openly. It s usually more stressful to hide emotions than it is to express them. If possible, a caregiver or family member should accompany you when you meet with the doctor at the health facility. It helps to have someone who can help you remember what the doctor/nurse has said and other important details. Talking about Cancer with People You Love 17

22 Talking with children If there are young children in your family, you may be worried about how they ll respond to cancer. How a child reacts to upsetting news often depends on how the adults are handling it. Many times when adults appear strong and calm, children will respond that way, too. When talking to children about cancer, you should give them truthful information that they can understand. It s best to share small amounts of information over time and keep the answers suitable to their age and level of understanding. Be sure to give children a chance to ask questions and have their questions answered. Adjusting family expectations Cancer affects the whole family, not just the person who has it. It often affects family roles and routines. Your family may need to help you with or even take over things you once handled alone. You might feel like you are becoming a burden to your family. It s important to talk with family members about these changes in roles and responsibilities. Discussing these matters helps everyone feel better. As we tell our caregivers how we feel and how they can help us, it gives them the chance to take better care of us. Dealing with unexpected feelings You may find that you re taking out your anger and frustrations on the people you care about most. And family members sometimes feel resentment toward us when we can t do as much as we used to. When we cannot handle the changes in our life that are caused by the cancer, it may change the way we behave or how we talk with each other. This can happen even in the most loving families. Remember that people react differently to stressful situations. Some family members may 18 Talking about Cancer with People You Love

23 We should discuss that we have cancer with others. When you tell others it helps to solve problems. They might guide us, give us advice and support and entertain us so it is beneficial if you tell others. Cancer Patient Talking about Cancer with People You Love 19

24 I do discuss it freely. I have told my family, I m still updating them about my treatment; I have also told my closer friends. I haven t kept it secret. Cancer Patient 20 Talking about Cancer with People You Love

25 become more absorbed in work or spend more time away from home. They might come home late and go to bed early. Others may stay home but spend all their time watching TV or reading. Still others may try to control everything we do. Though it may be hard to do, talking about differences in our coping styles will help us respect and understand each other and, in the end, help each other. The best thing we can do for each other is to be honest about what we re feeling. Fears about the future and feelings of guilt, frustration, and confusion are often less upsetting when we share them with others in a calm, honest manner. Doing so can help free all of us from the burden of unspoken fears and concerns. Previously we did not talk. They (caregivers) talk, I can feel it, I feel them talking. I can feel it when they confer on how best to treat me. But now after reading this booklet, at a minimum I will start talking with them saying thank you to them, telling them what is happening. Cancer Patient Talking about Cancer with People You Love 21

26 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 22 Talking about Cancer with People You Love

27 Chapter 4: Learning about Cancer Treatment What kind of cancer do I have? Before deciding upon a treatment plan, your doctor may order tests such as a biopsy, x-ray, CT scan or blood tests to find out what kind of cancer you have. These tests also help the doctor find out what stage of cancer you have. What is staging? 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. 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. After reviewing your test results your doctor will tell you what stage your cancer is. Be sure to ask your doctor any questions you may have about the type of cancer you have and what stage it is. How is cancer treated? Your treatment will depend on the type of cancer you have, the stage of the cancer, and your 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. Be sure to ask the doctor what the purpose of your treatment is. Types of treatment The most common treatments for cancer are surgery, chemotherapy and radiotherapy. A person with cancer may have any or all of these treatments. For instance, radiation therapy and chemo can be given independently or before, during or after surgery or in any combination the doctor sees fit to treat your specific cancer. Learning about Cancer Treatment 23

28 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. 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 affected by 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 24 Learning about Cancer Treatment

29 time to recover. Some drugs work best when they re given a few days in a row, or every other day, followed by a time of rest. 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. Talk with your doctor or the nurses to find out the purpose of your chemo. Be sure to tell your doctor or nurse about any other drugs you take. Radiotherapy is used to kill or slow the growth of cancer cells. It can also help alleviate pain and make you more comfortable. Radiation is used to treat cancer that is localized as well as cancer that has spread to bones, brain, liver, spinal cord, and tumours that block the airway of the lungs. Learning about Cancer Treatment 25

30 Radiation focuses on one place where the tumour started and attacks it there. Chemo goes throughout the body looking for all the cancer cells and kills them or stops them. Cancer Patient 26 Learning about Cancer Treatment

31 Radiation destroys cancer cells or damages them so they can t grow. It is given in two ways: high-energy rays are aimed from a machine (external radiation) or implants are put into the body near the tumour. External radiation: External radiation is painless and quick, much like having an x-ray taken. The patient does not need to stay overnight in the hospital. Treatment is most often given 5 days a week for 5 to 8 weeks, depending on the size, location, and type of cancer being treated. Radiation implants: Radiation may be given through implants placed inside the body. Small containers of radiation are placed in or near the tumour. Implants target a smaller area in a shorter amount of time than with external radiation. Implants can be placed in a person under general anesthesia (medicine that causes a deep sleep) or local anesthesia to numb the area. Implants can be permanent or temporary. Radiation can also affect normal cells near to 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. Learning about Cancer Treatment 27

32 Hormonal Therapy is the use of medicine to block the effects of hormones. This method does not work for all types of cancer. Hormonal therapy is helpful for people with cancers that are hormone sensitive or hormone dependent such as breast, prostate and thyroid cancers. 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 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 your doctor about any problems you may have during and after treatment. You can learn ways to manage common side effects on pages Does treatment sometimes cure cancer? 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. Complete remission means that all the signs and symptoms go away and cancer cells can t be found in any tests. 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 need a different type of treatment than what you had the first time. Don t be afraid to ask questions you might have at any point in time. It s your right to know what treatments are most likely to help and what their side effects may be. 28 Learning about Cancer Treatment

33 They said we would be treated with chemo, radiation and surgery but I did not know what they were until I came here. Cancer Patient Learning about Cancer Treatment 29

34 Chapter 5: Preparing for Your Visit Where is cancer treatment offered? In Ethiopia, comprehensive cancer treatment is currently available only at Tikur Anbessa Referral Hospital. This hospital has doctors and nurses who specialize in cancer treatment and care. However, because it is the only treatment facility in the country, there are very long waiting periods. It is important to be patient and resilient when you are referred to Tikur Anbessa for treatment. The government is planning to expand treatment services to five additional regional referral hospitals as soon as possible. Once that expansion has been completed, cancer patients will be able to get treatment at a hospital nearer to where they live. What should I do first? You should first go to the information desk at the cancer treatment centre and make an appointment. Be sure to come with the referral letter from your health facility and the results of any tests such as a biopsy, X-ray, MRI or CT scan. Unless it is an emergency, you likely will be given an appointment from a week to a month away. When you come back on your appointment day, you will be seen by the doctor based on your place in the queue. What happens when I see the doctor? The doctor will give you a check up and review any tests that you have already had. The doctor may order new tests if your old tests were done a long time ago or not done in the way that the doctor needs them to be. Sometimes the doctor will consult with other service providers to get additional input on your treatment plan. Based on the test results, your doctor will come up with a treatment plan that is best for you. 30 Preparing for Your Visit

35 After months of waiting we finally got a bed yesterday, we held each other and cried. We were so happy; we called all our relatives and told them we got a bed. Cancer Patient Preparing for Your Visit 31

36 The doctor will then discuss the treatment plan with you along with its advantages and disadvantages. If there is something you do not understand, you need to ask the doctor for more information. The doctor will then refer you to the unit that provides that kind of treatment. The following outlines what happens at each unit: Surgery: If surgery is part of your treatment plan, you can have your surgery done at any public or private clinic or hospital in the country, including Tikur Anbessa. Surgery can be scheduled at your convenience. Usually there is not a long waiting period for surgery. Radiation Therapy: If your doctor orders radiation therapy for you, you will be asked to give your phone number to the radiation therapy department. They will call you when they reach your turn on the queue. Often the queue can take from six months to a year or more. You have to be hopeful and wait your turn with patience. People who have continuous bleeding or back problems are prioritized for radiation therapy to treat that specific symptom. However, they too have to wait in queue to receive the full treatment. Chemotherapy: If your doctor orders chemotherapy, you will need to register twice a week for a bed. There is a shortage of beds at Tikur Anbessa. 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 during your stay in Addis. The hospital has different arrangements for emergencies and follow-up appointments. There are also different arrangements for paying patients. You can get guidance about what 32 Preparing for Your Visit

37 to do for your specific situation from the information desk. Hormonal Therapy: Hormonal therapy is usually given in the form of pills and is very simple to take. It is usually provided on an outpatient basis. Palliative Care: Palliative care helps alleviate the pain and suffering of cancer patients. Patients who require palliative care are seen on a weekly basis at Tikur Anbessa. What should I ask my doctor? Your relationship with your doctor, nurses, and other healthcare professionals is a key part of your care. It s important to let them know what you need and to ask questions if you need more information. The nurses are there to help you with your treatment or any side effects you may have. In many cases, they can answer your questions, too. These are examples of questions you may want to ask: What kind of cancer do I have? What stage is it? What treatment do you recommend? What is the purpose of the treatment? What are the possible side effects of treatment? Will I be able to have children after treatment? Are there other treatments I should consider? How long will treatment last? What type of changes should I make in my work, family and sex life? What are the drugs I will be taking? How will we know if the treatment is working? What symptoms or problems should I report right away? How much will treatment cost? Preparing for Your Visit 33

38 It is very important to follow the plan your doctor prescribes for you, so make sure that all your questions and concerns have been answered. The doctor may not have time to answer all your questions in one visit, so ask the most important questions first and save the others for another time. How will I pay for all of this? How much will it cost? Cancer treatment can take a lot of time and money. The cost of treatment depends on the type of cancer you have, the type of treatment, how long the treatment lasts, and the type and amount of medicine prescribed. Because of this you should plan and budget for your treatment from the beginning. You should also budget for transportation, and room and board, if you are traveling from another region. If you are not able to cover your costs, you should try to get poverty certification from your kebele so you can access free treatment. Organisations who can provide support are listed at the end of this booklet. What other resources do I have? Some people worry that asking for support is a sign of weakness. They may feel that they need to be strong and handle things on their own. You don t have to be alone in order to be strong. Emotional and financial support is needed at every stage of the cancer journey, and it can come from many places. Your close family and friends could be the primary option for this support. However, you may find that over time some friends and family you thought were close are becoming more distant, perhaps due to personal problems of their own. This does not mean that they don t care for you or are not thinking about you. You should ask them for support when you need it, but you should also realize that they may not be able to help as much as you d wish. In those instances, it may be better to ask them what they can do to help. 34 Preparing for Your Visit

39 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 Preparing for Your Visit 35

40 Chapter 6: Staying Healthy during Treatment What should I eat? Unless the doctor tells you to specifically avoid certain foods, you can eat any food you want. Just be sure that it is prepared in a clean and hygienic manner. If possible, eat 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, and papaya at least twice a day if possible. Try to eat a variety of food instead of the same thing every day. Make sure you are getting enough protein. It may be better to have several small meals a day instead of three heavy meals. Avoid drinking alcohol, taking Khat, and smoking cigarettes. Try to drink at least 8 glasses of water every day. If you experience significant loss of appetite, let the doctor or nurse know. They may be able to prescribe medications that can help increase your appetite. Protein Fresh Fruits and Vegetables Carbohydrates Fats and Oils Water 36 Staying Healthy during Treatment

41 Will I be able to work during treatment? It depends on the type of cancer you have, the treatment you get, how you feel during treatment, and the kind of work you do. Some people are able to go to work and do normal everyday activities while getting treatment. Others find that they need more rest than usual and can t do as much. Your doctor can help you decide whether it is OK to go back to work. How can I cope with side effects? Fatigue: The fatigue that comes with cancer is different from the fatigue of daily life. It can leave you feeling weak, exhausted, slow, and with no energy. Fatigue can make it difficult to focus, make your arms and legs feel heavy, and leave you with little drive to do anything. You may feel irritable and unable to sleep or sleeping too much. Here are some ways to reduce extreme fatigue: Try to save your energy and do only the basics. Set up and follow a structured daily routine. Do things slowly and ask for help. Unless you are told otherwise, eat a balanced diet and drink about 8 to 10 glasses of water a day. Begin an exercise routine if your doctor says it is OK. Try walking, sitting in a peaceful setting, deep breathing, meditation, or prayer. Talk to your doctor about how to manage any pain, nausea, or depression you may have. It s important to get good sleep. Here s what you can do to improve your sleeping habits: Use your bed only for sleep and sex. Do not read or watch TV in bed. Limit your daytime naps to early in the day not near bedtime. Think and talk about worries and fears early in the day. Don t drink alcohol, coffee and other caffeinated drinks near bedtime, instead take warm milk with honey. Go to bed when you feel sleepy and always go to bed at the same time. Staying Healthy during Treatment 37

42 Temporary Hair Loss Mouth Sores Skin Irritation Have someone rub your back or massage your feet before bedtime. Make sure your sleeping area is quiet and dark. Diarrhea: Diarrhea is common during cancer and has many causes - chemotherapy, radiation therapy, infection or the tumour itself. To relieve diarrhea try these tips: Eat salty foods, such as broths and soups; potatoes with the skin; and bananas, fruit juices, cooked carrots, white rice, and yoghurt. Avoid milk products and foods that are sweet, hot or spicy. Also avoid alcohol or coffee, acidic drinks such as tomato juice and citrus juices. Drink at least one cup of liquid after each loose bowel movement. Clean your bottom with a mild soap after each bowel movement, rinse well with warm water, and pat dry. Apply a water-repellent ointment or 38 Staying Healthy during Treatment

43 petroleum jelly to your bottom and wash your hands with soap each time you use the toilet and before preparing or eating food. Talk to your doctor if: You have diarrhea or stomach pain for more than a day You are dizzy or feel like you may pass out Your stools have an unusual odor or color You have blood in or around your rectum or in your stool You lose 5 or more pounds after the diarrhea starts You do not pass urine for 12 or more hours You cannot drink liquids for 2 or more days You have a fever of 38 C or higher, taken by mouth You have been constipated and then start to have small amounts of diarrhea or oozing of liquid stool. (This may mean you have an impaction or severe constipation.) Nausea and vomiting: Nausea and vomiting are common side effects. To minimize these effects be sure to: Eat foods that are easy to digest on days when you are getting treatment Wear loose-fitting clothes Limit sounds, sights, and smells that cause nausea and vomiting Eat small meals or snacks throughout the day rather than 3 large meals Keep your mouth clean; brush your teeth and rinse your mouth out every time you vomit. Most of the time doctors prescribe anti-nausea/vomiting medicines. Inform your doctor if the medicine is not working. Sore mouth: You can help relieve this symptom by: Brushing your tongue, gums, top of your mouth, and teeth with a soft toothbrush within 30 minutes after eating and at bedtime. Staying Healthy during Treatment 39

44 Brushing your teeth with a soft brush every morning and night. Eating a well-balanced diet. Staying away from spicy foods, very hot or very cold foods, and hard or crunchy foods. If your mouth bleeds, put pressure on the site with a cloth dipped in ice water or rinse your mouth with ice water, if available. Temporary hair loss: Some chemo medicines and radiation can cause hair loss. You might lose the hair on your head, face, arms, legs, underarms, or the pubic area between your legs overnight or gradually. Usually, hair will grow back after the treatment is completed. Until then, you can cover your head with a scarf, cap or wig. Change in sexual desire: Some medicines cause hormonal changes in women that cause hot flashes and vaginal dryness. Both men and women often lose their desire for sex during treatment. It is important to talk with your marital partner or lover about this issue. You still can find pleasure in physical intimacy during your treatment by hugging, touching, holding, and cuddling without sex. It is a good idea to talk with your doctor about when it is safe to have sex during treatment and what precautions you should take. 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. Women may find that their periods become irregular or stop while getting treatment. However, it may still be possible to become pregnant, so family planning is still needed. It's normal to worry about how treatment will affect your fertility. Talk to your doctor before treatment starts about any questions or concerns you have about fertility and cancer treatment. 40 Getting the Facts about Cancer

45 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 Getting the Facts about Cancer 41

46 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 Getting the Facts about Cancer

47 I can only accept what is to come to me with grace. If I get treated and I get better then I get better, and if I don t then I pray that He doesn t make it too painful. Cancer Patient

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