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  • Emotions after cancer

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    Not everyone will have difficulties after their treatment finishes but, for many people, their concerns and fears are ongoing. You may need a lot of support—maybe even more than you did when you were diagnosed.

    Relief

    You might be relieved the treatment has finished and seems to have been successful. You may feel happy to focus on your regular activities.

    Feeling disconnected

    One of the most common feelings people have is a sense of being on their own. Many people feel isolated, abandoned or less secure when regular appointments with the health care team reduce or stop. This can be described as losing a security blanket or safety net. Changes to your relationships and feeling that other people can’t relate to your experiences may also make you feel lonely.

    Many people feel they have to be brave and don’t want to upset their family and friends. If you’re back at work, you may feel isolated from your colleagues. This might be because you don’t feel comfortable talking about your experiences or because people avoid talking to you about it.

    Support can come from family, friends, cancer support groups, church groups, online support groups or counsellors. Talking about it can help you feel less alone. You may think that your family and friends are too busy to chat or worry that you might be a burden to them. But you may find their responses surprising and reassuring.

    Fear of recurrence

    The most common fear is wondering if the cancer will return. It is often difficult to separate normal aches, pain and sickness from what may have previously been symptoms of cancer or side effects of treatment. This fear may never go away completely but most survivors learn to manage it.

    Some survivors say with time their fears lessen. However many people still find that they worry at certain times such as:

    • special occasions (e.g. birthdays or holidays)
    • anniversaries (e.g. the date you were diagnosed, had surgery or finished treatment)
    • before follow-up appointments
    • hearing of others diagnosed with cancer
    • experiencing symptoms similar to those when you were first diagnosed
    • the death of a friend or family member from cancer or another type of illness
    • passing by the hospital where you had treatment or visiting someone in the same hospital
    • hearing media reports about cancer, new treatments and celebrities with cancer
    • seeing related fundraising campaigns or advertisements (e.g. a graphic cigarette warning or melanoma warning).

    Ways to manage the fear of recurrence

    • Talk to your specialist about your risk of recurrence
    • Educate yourself about your cancer
    • Know what is ‘normal’ for you and what symptoms to look for
    • Focus on what you can control e.g. being involved in your follow-up appointments and making changes to your lifestyle
    • Write down any questions and ask your specialists when you go to your appointments
    • Recognise the signs of stress, such as sleeplessness, and try to manage this in a healthy way. For example doing some meditation or light exercise might help
    • Join a support group to discuss your concerns with other cancer survivors
    • Arrange a regular appointment with your GP to talk about any health issues you have and get some reassurance. Your GP should understand this can be  a vulnerable time.
    • If you have a symptom that is worrying you go and see your doctor. Don’t wait until your next routine appointment
    • Remember not every symptom is the cancer coming back. You may still have to deal with the health problems you had prior to your cancer diagnosis e.g. arthritis, diabetes or high blood pressure.
    • Speak to a counsellor if the fear of recurrence is overwhelming or if it is affecting your relationships. The counsellor may be able to help you balance your thinking or have a more positive frame of mind.

    Anger

    When you were diagnosed you may have focused on getting through the treatment and now it’s over you can let go of your emotions. You may feel relieved the active treatment is over but angry the cancer experience isn’t. You may experience feelings of anger about how you were diagnosed or symptoms that you ignored.

    Anger is a normal emotion that everyone experiences now and then. Often anger is experienced when we feel powerless, mistreated, misunderstood, humiliated, embarrassed, fearful or when we feel like things are out of our control.

    Given that cancer frequently makes people feel powerless, it’s no wonder that people affected by it often experience feelings of anger.

    You may be angry about the impact the cancer has had on your life. It may have affected your ability to work, your relationships and family life. Anger can also hide other feelings such as fear or sadness.

    We all express our anger in different ways. Some people might be impatient or raise their voice. Others may get very upset and tearful. You may often direct your anger at the people closest to you. Letting others know your anger is not about them but about your situation, can be helpful.

    If you’re finding your feelings of anger are starting to affect your life in a negative way, you may find it helpful to discuss this with your GP, or get a referral to a counsellor or psychologist. You can ring Cancer Council 13 11 20 for information and support.

    Worry

    You may have questions about how long side effects will last, how they can be managed and if they will affect your work, social life, relationships, finances and hobbies. Many survivors are also concerned about worrying their family or being a burden to them.

    After treatment has finished it’s normal to feel worried and uncertain. For some people it can take years before they are confident the cancer is cured. Feeling worried or uncertain doesn’t mean you’re not coping with life after cancer. But if you feel like you’re not coping talk to your GP and ask for help.

    Focusing on what you can control right now is one way of managing your worries. It can help you to stop dwelling on future ‘what ifs’. Rather than worrying about things that may never happen concentrate on what you can influence and do now. This can include:

    • talking about your feelings
    • getting support
    • becoming more involved in your own care
    • following advice from your cancer team
    • focusing on your well-being
    • knowing when you need help with overwhelming feelings and where to get it.

    Frustration

    Some people feel frustrated because they think their family and friends have unreasonable expectations. You may still feel unwell and need extra support.

    Be open and honest with people about how you feel. Although you might find this difficult to do it’s better to do it calmly in the early stages rather than letting your frustration build up and angrily confronting the person at a later stage.

    Anxiety

    The uncertainty about the types of tests you will need, which health professionals you will see and how often you will need check-ups can make you feel anxious.

    Sleeping problems, poor appetite, mood swings and feeling more aches and pains are common in the lead-up to the appointment.

    You may feel anxious before check-ups because:

    • you fear you’ll be told the cancer has come back
    • going back to hospital brings back bad memories
    • it makes you feel vulnerable and fearful just when you were feeling more in control
    • other people (friends or family) make comments that upset you.

    Finding ways to cope with your worries before check-ups may help.

    • Try to see your check-ups as a preventive measure. Regular check-ups may increase the chance of any problems being picked up early when they may be easier to treat.
    • Use it as an opportunity to have any new questions answered
    • Book the first appointment of the day so you don’t have time to dwell on the appointment.
    • Once you have had a few check-ups and all is okay you may feel less anxious.

    Uncertainty

    Many survivors find planning for the future difficult because they feel uncertain about their health. They may feel stuck because they want to do things but are afraid to start something new.

    Some people find it helps to find out as much as possible about their illness and what is likely to happen. This can help reduce feelings of stress and by talking through your fears; you may find the situation is better than you first thought.

    Will the cancer come back?

    You may wonder how likely it is the cancer will come back or how long people with your type of cancer live. You need to discuss your case with your specialist who can give you an idea of what may happen to you.

    The risk of recurrence is different for each person. It depends on many factors including the type of cancer, stage at diagnosis, treatment and time since treatment. Generally the more time that goes by, the less likely it is that the cancer will come back.

    If you notice anything unusual or have any concerns see your doctor as soon as possible.

    Fear of getting a different cancer

    Some survivors worry about developing a different type of cancer. While this is not common approximately ten per cent of cancer survivors will develop a second primary (new) cancer.

    You need to discuss the long-term risk with your specialist. Your risk may be higher if:

    • you were born with genes that increase your tendency to develop cancer—this accounts for five to ten per cent of all cancers
    • your cancer treatment has increased your risk. For example some forms of radiotherapy can increase the risk of getting a different cancer later in life particularly if you were treated as a child.

    To help detect cancer early you can participate in national screening programs for breast, cervical and bowel cancer. For more information visit www.cancerscreening.gov.au.

    Lack of confidence

    You may feel differently about your body and health. Many people say they feel vulnerable and less confident. They also don’t trust their body because they feel it has let them down. You may wonder how you will cope with the changes.

    Cancer and its treatments can change a person’s role in their family or at work. Many people feel these roles are an important part of their identity and if they change it can affect their confidence.

    You may not have the physical energy to do the normal, everyday tasks that you did before. It can take time for your strength to return.  You’ll probably build up your strength and confidence gradually. Setting manageable goals can help. As you achieve these your confidence will grow.

    Feeling down or depressed

    Feeling down or depressed after treatment finishes is common. Some people may feel fine at first and then start to feel sad or down a few weeks, months or even years later.

    Knowing why you feel low can help you to work your way through your feelings. Some people feel sad or depressed because of the changes cancer has caused. Others become very down because they are frightened about the future. They may wonder if the cancer will come back, if they will be able to work again and how their family will cope.

    Support from family and friends or health professionals may help you cope better during these periods.

    Depression is more than feeling down for a few days. It may mean you feel in a low mood most of the time or your sadness lasts two weeks or more.

    If you have one or more of these symptoms for a few weeks or longer, you should see your GP:

    • feeling very sad and low most of the time
    • loss of interest and pleasure in normal activities
    • having negative thoughts about yourself a lot of the time
    • eating more or less than usual
    • weight gain or loss
    • feeling very tired most of the time
    • having trouble concentrating
    • loss of interest in sex (low libido)
    • changes in your sleep habits e.g. not being able to fall asleep, waking in the early hours of the morning or sleeping much more than usual
    • feeling restless, agitated, worthless, guilty, anxious or upset
    • having very little or reduced motivation
    • being extremely irritable or angry
    • thinking that you are a burden to others
    • thinking about hurting yourself or killing yourself.

    These are not only the symptoms of depression some can be caused by other medical conditions. Talk to your doctor about how you are feeling.

    Getting help with depression

    It is important to remember that depression is common but it won’t go away by itself—it needs specific treatment.

    There are many effective treatments for depression and they don’t necessarily include medication.

    Treatment for depression may include therapy provided by a GP, trained psychologist, psychiatrist or counsellor.

    Tackling depression early may mean you can deal with problems quickly and avoid symptoms becoming worse.

    In addition to getting professional help to treat depression the tips in the following section may help you.

    • Take care of yourself. Eat a well-balanced diet with lots of fresh fruit and vegetables and drink plenty of water.
    • Set small and achievable goals. Remember to not expect too much from yourself.
    • Get regular exercise. Studies have shown being active helps lift a person’s mood and improves fatigue.
    • Share your feelings with someone close to you. Just having them know exactly how you feel may help you feel less alone.
    • Go out and do something you enjoy. A change of scenery can make you feel better. Spend time outside in the fresh air. Schedule a pleasant activity.
    • Try not to judge yourself too harshly. Self-criticism can lead to more feelings of hopelessness.
    • List activities you used to enjoy and plan to do one of these activities regularly.
    • Write down how you’re feeling or express yourself in painting, drawing, music or singing.
    • Get up at the same time each morning, regardless of how you feel. Make an effort to have a shower and get dressed.
    • Try a complementary therapy such as massage, yoga, hypnosis, acupuncture and reflexology.
    • Keep a record of how you are feeling so you can check your progress.

    Last last reviewed March 2012 by: Dr Kate Webber, Cancer Survivorship Research Fellow and Medical Oncologist, NSW Cancer Survivors Centre; Kathy Chapman, Director, Health Strategies, Cancer Council NSW; Janine Deevy, Adolescent and Young Adult Cancer Care Coordinator, Royal Brisbane and Women’s Hospital, QLD; Dr Louisa Gianacas, Clinical Psychologist, Psycho-oncology Service, Calvary Mater Newcastle, NSW; Tina Gibson, Education and Support Officer, Cancer Council SA; A/Prof Michael Jefford, Senior Clinical Consultant at Cancer Council VIC, Consultant Medical Oncologist, Peter MacCallum Cancer Centre and Clinical Director, Australian Cancer Survivorship Centre, VIC; Annie Miller, Project Coordinator, Community Education Programs, Cancer Council NSW; Micah Peters, Project Officer, Education and Information, Cancer Council SA; Janine Porter-Steele, Clinical Nurse Manager, Kim Walters Choices, The Wesley Hospital, QLD; Ann Tocker, Cancer Voices; and A/Prof Jane Turner, Department of Psychiatry, University of Queensland.
     

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