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Riding the emotional roller coaster:
Riding the emotional roller coaster 1: At diagnosis A diagnosis of cancer can be a devastating experience. Nothing can prepare you for the moment when the doctor says "it's cancer". Common reactions to a cancer diagnosis include, shock, fear, denial, panic, anger, uncertainty and guilt. As distressing as these emotions are, they are normal reactions. Women often describe their experience as a "roller coaster of emotions". You may find there are times when you feel overwhelmed and afraid. You may also swing from feeling sad and tearful one minute, to feeling angry the next. These sudden changes of mood can make it very hard for you to predict how you are going to feel from day to day. They can also be hard for the people who care about you. It may be helpful to talk about how you feel with your family and friends, and suggest that they read this section too, so they can understand a little better.
Shock is a natural response to an overwhelming event. Most women say they feel numb with shock when they are told they have cancer. They often say that after the "cancer" word, they didn't hear anything else the doctor said to them. It is not uncommon to find it hard to take in all the details. You may find that your mind feels blank for a while, and you have trouble remembering things. You may need to ask the same questions over and over again. Worrying about forgetting only makes it worse. Make lists and write down questions you want answered. When you go to doctors' appointments have someone go with you, if possible. Make notes, or get someone else to take notes, so you can go over the information again later.
Once you hear the word cancer spoken, and it's you they are talking about, it is natural to feel fear. Cancer is a frightening word. The first thing women often find themselves thinking is "Am I going to die?" From there your thoughts might go to: "Will I be in pain?" 'What will happen to my family?" "How will I manage?" Your mind will probably also be filled with 'what ifs?' "What if the doctors don't find all the cancer?" "What if the treatment doesn't work?" "What if I lose my hair?" "What if I have to give up work?" The more you let yourself worry about the things for which there is no answer yet, the more you will feel afraid. A wise woman once described fear as a:
Remember, many patients with cancer are cured and others live for many years. And even when the cancer is not curable, things can be done to help with any pain or discomfort, or to slow the cancer down. The secret to controlling your fear is to take one step at a time. It is easy to become overwhelmed by your fears. Break your concerns into 'things to worry about today' and 'things to worry about later'. What can you do something about today? The following four questions may help you decide. Addressing the issues that you can do something about will help you regain control over your situation.
When faced with the shock of a cancer diagnosis you may cope by denying or downplaying the impact of your diagnosis. There are a number of reasons why this way of coping may work for you.
If any of these reasons fit your situation, let people know that, for the time being, you don't want to talk about your cancer. However, as understandable as denial is in the first few days, it is recommended that you talk about your feelings. Take a look at the section on talking about your cancer on this web site if you have difficulty expressing how you feel.
Starting the cancer journey is like sailing into unknown territory. If this is your first diagnosis you probably don't know a lot about medical procedures such as surgery, chemotherapy and radiation. This can be very scary. With cancer your life may feel literally in the hands of your doctors. This loss of control, and your ability to predict what will happen, can lead to feelings of panic - a feeling that having cancer is more than you can bear. As understandable as this feeling is, it will pass. Symptoms of panic include feeling disoriented or light-headed, having heart palpitations, feeling nauseous, and feeling sweaty and clammy or cold and shivery. To help yourself overcome your panic, make a note of what you have already overcome since the day of your diagnosis. Somehow you got through that day, and if you are undergoing treatment, somehow you are managing it. It certainly takes lots of strength, but you have already shown that you have that strength. Remember too, that you don't have to do it alone. Let others help you, whether they are family and friends or health professionals.
It is natural to feel angry at times. Women often feel angry with their bodies for letting them down. They say they feel "betrayed" because they had no idea that their body was developing cancer. It is also quite normal to feel that "its not fair". For example, if you have been taking reasonable care of yourself, trying to eat healthily and taking some exercise, it can feel very unfair that you get cancer when others, who seem to be putting themselves at risk of disease, live to be 100. You may feel angry at the loss of control you feel over how your life will be in the future. It is also common to feel anger with others. You may be feeling angry or frustrated with a family member or friend who you feel is not being as supportive or understanding as you would like. Trying to be super "positive" can also result in you feeling angry, as you try to put others' needs ahead of your own. There may be times when you feel angry with the health professionals involved in your treatment and care. If you don't understand something, ask again. One of the hardest things women face is that the doctors often can not give absolute assurance that once treatment is finished you will be cancer free. We still don't have a guaranteed cure for cancer. As a number of women have observed, "We can put men on the moon, why can't they cure cancer"? If you have a religious faith you may even feel angry with God. "Why me?" is a common thought among people diagnosed with cancer, and it is important that you don't feel guilty about having these thoughts. As you progress through your treatments, you will probably meet other women, young and old, for whom it is also not fair that they have cancer. When you are feeling angry, the support of others who have been through the same situation can be very important. Call the NSW Cancer Helpline (Ph: 131 120) for information about local groups, or speak to your healthcare team. It is also important that you tell those around you why you feel angry. If they are not being helpful, tell them what you need. If you want a cuddle, ask for one. If you don't feel like cooking, then don't. Let them know what you need to help make you feel better.
When something unexpected and frightening happens, such as a cancer diagnosis, we often search for a reason. Knowing why something has happened can help us to feel less vulnerable. In this way, you may find yourself thinking that something you did or didn't do in the past was the "cause" of the cancer, no matter how unlikely that may be. It seems that a number of factors lead to the development of cancer. With gynaecological cancer, some women feel that past sexual activities, or taking the pill, or not taking the pill, or having children, or not having children caused their cancer. In this way it is easy to blame yourself for your cancer. However, many other women did or didn't do the same things as you, and they didn't get cancer. Having cancer does not mean that you are being punished for something. Cancer is a disease, not a judgement. Cancer does not discriminate between good people and bad people.
Many women often feel that if they had been less stressed as they juggled their lives and responsibilities they would not have developed cancer. Again, many people live incredibly stressful lives and don't get cancer. Some women blame others for their cancer. You may be angry with a partner or parent, or angry that your doctors did not find the cancer earlier. It is important to get over this period of guilt and blame as quickly as possible, so you can use your energies to work towards living well. Guilt and blame can also be symptoms of an underlying depression. If you find yourself stuck in a cycle of blame and guilt, seek support from family or friends to help you talk through these feelings. You can also talk through these feelings with the health professionals involved in your care or contact your local community health centre or Women's Health Centre to arrange local professional support, or call the NSW Cancer Helpline (Ph: 131 120) for details of local support.
Living with uncertainty about the future can be distressing and exhausting. Women find themselves going over in their minds all sorts of questions that cannot be answered at the time. Will the chemotherapy work? Will the cancer come back? Is that pain in my back related to the cancer - is it another cancer? You probably had no idea that you had cancer when it first began to develop. This can lead you to feel very vulnerable, and unable to predict what your body will do in the future. You may feel you can't trust your body anymore. Although, for many women, the uncertainty never goes away completely, you will find that, as you get further away from the actual diagnosis, these thoughts become less frequent and less distressing.
Many of the emotional issues experienced by lesbians at diagnosis are the same as those of heterosexual women. However, they live in a world where lesbians are largely "invisible". This is especially true for rural lesbians. Therefore additional issues may impact negatively on your emotional well being at this time. Because of past negative experiences with the health system, you may be reluctant to seek out information and assistance from health professionals. Although this is understandable, by not accessing health services you may be putting your health at additional risk. Research shows that, in general, lesbian women, compared to heterosexual women, experience higher levels of stress and reduced social support from their families of origin. Lesbian women are also known to be at higher risk of some gynaecological cancers and may miss out on screening procedures that can detect cervical cancer at an earlier stage. However, it is also true that lesbian women diagnosed with cancer report greater satisfaction with support from their partner, and higher levels of communication about their fears and difficulties than heterosexual women. Although some lesbian women are estranged from their family of origin, lesbian women with cancer often find support from a "family of friends" within their lesbian community. While research reports make general statements about a large number of women, it is important to recognize the diversity of lesbian women's experience. You may be "out" to everyone, "out" in some contexts but not others, or be very private about your sexual identity. This is a matter of personal choice, and will depend very much on the degree to which you fear other people's responses will be unsupportive or even harmful. While many lesbians struggle with the decision "to tell or not tell" their health care team when diagnosed with cancer, if you want to have your partner or family with you through this journey, it is often best to be perfectly clear with them about who is your partner if you have one, and who make up "your family".
Riding the emotional roller coaster 2: Ongoing distress
While not everyone experiences ongoing distress, research shows that many women do. After the initial shock of your diagnosis, you may find that your feelings change. Earlier feelings of panic and fear may shift to a deeper or more persistent sense of depression, anxiety or loss. These emotions may occur during your treatment, or when treatment has finished. At this time you may also be struggling to come to terms with changes in your body, and in your sense of yourself. It is important to avoid telling yourself: "I should be able to cope". Experiencing distress is not a sign of weakness, or a failure to "be positive". Everyone needs support during difficult times. If you find that you are experiencing difficulty, you may find talking to someone helpful. If your family or friends are unable to provide you with the help you need, consider seeking professional support. Talk to your treatment team. Your well-being is their concern.
It is not unusual to feel sad after your diagnosis, during your treatment, or after your treatment. Some women, however, find that their low mood becomes hard to shake off. If your mood has been low most of the time for a few weeks, you may be experiencing depression.
One in four women, even without a cancer diagnosis, are affected by depression at some time in their lives. In the past, you may have experienced bouts of depression yourself, or have been diagnosed with cancer whilst you were already depressed. For some women, depression may occur for the first time after their diagnosis. Depression is different from sadness. Depression feels impossible to shake off, and your enjoyment of things becomes seriously diminished. It feels very hard to be hopeful. Here are some common symptoms of depression. These symptoms can range from mild to severe. MOOD SYMPTOMS (Feelings)
MIND SYMPTOMS (Thinking)
Note: If you are feeling suicidal, seek help straight away from your GP or call Lifeline on 131 114. PHYSICAL SYMPTOMS
Note: Some of these symptoms may be the result of your treatment (talk to your treating team or GP). LEADING TO
Factors that are thought to contribute to depression include:
If you find yourself struggling with depression, remember that it is treatable. Try not to bottle things up. Talk to people who let you say how you really feel. Being depressed will not affect your cancer, but it will affect your quality of life. Seek help from your treatment team. Your GP might also be able to make recommendations. Being depressed is never a sign of weakness, and you are not being silly if you raise these issues with the professionals involved in your care. While it is important that you find support to help you through depression, there are some things that you can do for yourself. When people become depressed, they often have no energy or motivation. As a result, they find themselves becoming less active. The less they do the worse they feel. Therefore, it is important to increase your activity level by planning simple daily activities. Discuss with your doctor what exercise would be most suitable for you. The following suggestions may also be helpful.
Fear and anxiety are normal reactions to stressful situations. When you have been diagnosed with cancer, it is natural to worry about what will happen to you and your family. Sometimes the worry can be very intense and difficult to cope with. You may find that you can't concentrate, you are irritable and easily distracted, you sleep badly and get tired easily. These are often symptoms of anxiety. Other symptoms include:
Finding a balance between understandable worry, given your diagnosis of gynaecological cancer, and a level of anxiety that seriously undermines your quality of life, may need the help of a health professional. Friends and family can also help by allowing you to express your anxieties. Not talking about these tends to turn them into "monsters". As you progress through treatment and beyond, you will probably notice certain times when your level of anxiety is high. Many women are surprised to find that they feel very anxious as treatment finishes. Even though you may have been looking forward to its end, not having the intense medical monitoring that occurs during treatment can be scary. It is also natural to feel anxious around the time of your check ups.
A further ongoing anxiety for some women occurs when they experience odd aches and pains. It is natural to think first that the pain might indicate a return, or worsening, of the cancer. Often women find, when they think back, there is a less worrying explanation, such as over-doing the gardening, or carrying the shopping awkwardly.
Remember
There are various ways of dealing with anxiety. Some of the suggestions in the section on depression may be helpful. Relaxation and meditation can also be helpful. It is also important, if anxiety is an ongoing problem for you, that you mention your symtoms to your treatment team. They can work with you to develop stress-management techniques and helpful coping strategies.
Body image refers to our beliefs and feelings about how we look in comparison to how we would like to look, not only to ourselves, but also to others. This image is a mental picture. It may not be drawn from what your body actually looks like, or how others see you, but rather how you think you look. Before your cancer diagnosis you may have been very comfortable with how you looked. Often though, women wish they had a little less weight, or a little more weight, were taller, or shorter. The media, and common conceptions about what it is to be beautiful, influence how we feel about our bodies. Our moods can also play a major role in how comfortable we feel about ourselves. Body image issues are common in all people who have been diagnosed with cancer. Often the loss of hair during chemotherapy, or scars following surgery, can make a person feel self-conscious. Hair loss can be particularly challenging as you are so used to seeing a different image of yourself in the mirror. Some women find they are shocked at how different they look, and this can take time to adjust to. You may feel awkward letting anyone see your scar, or not want to look at it yourself. You don't have to adjust to these changes in your body immediately. In time though, most women find that once they decide not to hide these changes, they can begin the process of letting go of hurt, anger and regret. In addition to the body image issues associated with cancer and its treatment in general, gynaecological cancer may involve the removal and alteration of some of a woman's most sensitive organs. They are associated with reproduction and sexuality, and historically have defined "woman". For many women, these parts of the body are intimately tied to their sense of being a woman. A woman's vagina, cervix, uterus, ovaries, vulva and labia are also hidden and private. They are rarely talked about, unlike breast cancer, which through tremendous advocacy on behalf of those who have the disease, is talked about quite publicly. It is not as easy to talk to others when your disease has affected the vulva or labia. The pain of actual loss, or loss of function of these body parts, can have a huge impact on how you feel about yourself. Often, when body image becomes an issue for women with cancer, there is an underlying fear that the changes will make them less lovable or acceptable to others. If this is a fear of yours, talk to them about your fear, rather than letting the fear grow bigger and bigger. If this doesn't help, talk to a health professional. The following tips may also help:
We usually associate grief and loss with the death of someone we love. However, death is not the only event people experience as loss.
A diagnosis of cancer can represent multiple losses. You probably imagined how things would be years from now, waiting for the day when the house was paid off, you had children, or your children grew up. Waiting till you could give up work or till your life was less stressful. Now you are faced with uncertainty about the future. Treatment may also have left you unable to have children. This can be devastating. Your sense of being in control of your life may be shaky right now, leaving you feeling vulnerable and sad. The grief triggered by such losses can be made worse by well-meaning friends and family. People may say, " You're alive, that's all that counts". They may trivialize your feelings, or try to cajole you into minimizing the effects of your losses. They usually think that this will help you not to dwell on your losses. Unfortunately, this can make you feel you have to keep your thoughts private, or that there is something wrong with you because at times you cannot see "how lucky you are". If we lived in a lucky world, no one would get cancer. Women who have been through what you are going through often say "I wouldn't wish this on my worst enemy". Your sense of loss is real. With support, and with time, the losses will become less painful. Tell family and friends that it is helpful for you to talk about your sense of loss, if it is. If this is impossible, talking to others who have been through a similar experience can help. Ask your treatment team if they can put you in touch with a support group, or someone who has also been through gynaecological cancer. Seek the help of your treatment team or contact a local counsellor or psychologist if these feelings become too hard to bear.
If you now have a stoma, this can make acceptance of your changed body even harder. You may have lost, to some degree, the freedom you had before surgery. Most people find that going out takes a certain amount of organization and planning, and it not as easy to pop round to friends or go out for the day with a stoma. In time this will probably become more manageable, but it still represents a loss in your life. You also have to deal with other people's reactions to it. This is particularly difficult and upsetting if your partner is finding it hard to accept. Like vulvas, generally, people don't talk about faecal matter. We know that everyone's body makes it from the day we are born, but is not visible from the outside. Most women find that once they have sorted out the best appliance that suits them, and are able to manage them, life becomes more "normal". Remember that if you are hiding it from everyone, you are living in fear of discovery. Try to discuss your difficulties with those who are close to you. Seek advice from the Stomal Therapy Nurse attached to your treatment hospital, or ask for a referral from your GP. The Australian Council of Stoma Associations publishes the national journal "Ostomy Australia" (available three times a year). http://www.australianstoma.org.au You can also contact Colostomy Association of NSW
Riding the emotional roller coaster 3: Advanced cancer When remission or cure is no longer possible There are times when cancers do not respond to treatment and either come back (recur), or spread to other parts of the body (metastasis). For many women with gynaecological cancer, the disease is already at an advanced stage when it is diagnosed. Dealing with advanced or recurrent cancer can be very distressing, but there is hope. There is hope that you can live as long as possible. There is hope that you will continue to do the things that give your life meaning. There is hope that you will achieve quality of life in the face of an unknown quantity of life. You may be surprised to know that some women live for many years with advanced cancer. Unfortunately, for others, the time from diagnosis to death from their disease is short. Few can predict with any certainty how long they will live, and this uncertainty can be very hard to accept. In time, many women find that living in the moment - concentrating on the 'here and now' - is the best way to live well.
Not surprisingly, most women diagnosed with advanced cancer feel afraid about the future. They fear being in pain. They fear the cancer will progress to a stage when they will be unable to do everyday things. They fear they will become a burden on others. They fear for the loved ones they will leave behind. If possible, discuss these fears with your loved ones. Sometimes this can be difficult. It is not uncommon for family and friends to try to avoid talking about such painful issues. Let them know that it is important for you to voice your fears. This does not mean that you have 'given up'; it means that you are facing the challenge. It is also important that you share your concerns with your health care team and seek their support. They can also help you manage your physical symptoms to enable you to have the best possible quality of life. At a time when so much may feel out of your control, dealing with practical issues can help you face the prospect of death. Some things that can help you ensure you will be in control in the final phases of your illness include:
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