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Many people expect that all their emotions will be happy ones once treatment ends. But the reality can be quite different. Emotions ranging from fear to guilt to anger are quite normal once treatment is over. The transition from being a cancer patient to a cancer survivor can be an emotional roller coaster for both the child and the family. There is no right or wrong way to feel – and some of your feelings might surprise you.
Studies have shown that most childhood cancer survivors and their families deal well with the emotional issues of survivorship. Children who have survived cancer grow up and usually function well in daily life and society. They may have a different perspective than those who have not had cancer. Parents of survivors get back to daily life, often with a different outlook on things and a greater appreciation of the world around them. Both children and parents can come out of their cancer experience with a stronger idea of what is really important to them.
That doesn’t mean every day is easy. Late effects of treatment or new health problems can be discouraging or frightening. Anniversaries of significant dates (such as date of diagnosis, surgery or first day of treatment) can bring up painful memories that set off their own mix of feelings along with physical symptoms (such as nausea).
Some of the emotions you may experience include the following.
Fear of recurrence
It is normal to worry about the cancer coming back and how you would react and cope if it did. Some may worry that every ache or pain means that the cancer has returned. As time goes by, you may find your fears fade and you worry less. Sometimes life events or reminders of past experiences can make you anxious again. These reminders include things like follow-up visits, anniversary dates such as the date of diagnosis, or driving past the treatment centre.
If you are worried and anxious all of the time, or if your anxiety interferes with daily life, get some mental health support. You need to get your worries under control so that you can focus on living well.
Grief and loss
A childhood cancer diagnosis can shake up your entire family and how you see the world. You may grieve the time that was lost while you spent years focused on treatment. Some may grieve the loss of a limb. Survivors of childhood cancer may view losses differently at different ages. For example, a 10-year-old may find it easier to deal with learning problems than a 20-year-old in college trying to make career choices. A teenager may view infertility differently than an adult. You may grieve the fact that you can no longer do something you enjoy or that you have missed out on things with peers. Feelings of grief do not go away on their own. They need to be acknowledged and dealt with.
Now that you have time for it, you may have a lot of anger to work through. You may feel anger over what life has dealt you and what you now have to live with. You may be angry about late effects from treatment. You may be angry about physical differences caused by the cancer. You may be angry at what cancer has cost you, whether that is time, money or experiences.
Recognize when you are angry and express that anger in safe and healthy ways. If anger interferes with your life and affects your relationships, ask for help from a mental health professional, support group or doctor.
You may be anxious over what the future will bring and how you will cope. It is normal to worry about cancer coming back or late effects of treatment. But if anxiety becomes so large that you’re afraid of even knowing things, it can affect your ability to seek healthcare and keep up with follow-up appointments.
You may become embarrassed about your health concerns or worried that your doctors will see you as a complainer and someone who worries too much. Be open and talk to your doctor if you feel this way. Having a good relationship with your doctor can make you more comfortable with asking questions, dealing with any concerns you have and keeping your follow-up appointments.
You may be surprised to find that you feel guilty about surviving cancer. Some survivors will feel this way when they realize that they have survived and are recovering while some of their friends with cancer are not. There are many types of survival guilt. If you have many late effects, you may feel guilty about how that affects loved ones around you. You may feel that there are very high expectations about what you will do with your life – because you survived cancer, you need to do more than the average person. If you are a survivor of a genetic form of cancer and your child also has it, you may feel guilty about passing it on.
Sadness and depression
It is normal to be sad about things you have lost as a result of cancer. Throughout the cancer experience you may feel sad, very tired or overwhelmed, disappointed and lonely. Most people, not just cancer survivors, will be sad at times throughout life. But it is important to know the difference between normal and abnormal levels of sadness. Abnormal levels of sadness may mean you are depressed.
Symptoms of depression include:
- loss of pleasure and interest in most activities
- withdrawing from relationships
- avoiding social activities
- poor appetite and weight loss
- overeating and weight gain
- crying easily or being unable to cry
- increased irritability
- nervousness or sluggishness
- extreme tiredness and fatigue
- feeling worthless
- not being able to concentrate
- finding it hard to make decisions
- difficulty sleeping or sleeping a lot
- feeling hopeless, including thoughts of death, escape or suicide
Survivors may experience these symptoms at different levels of severity in the months and years following cancer treatment, but they usually lessen with time. If the symptoms don’t go away and start to affect relationships or the ability to go to school or work, talk to a counsellor or healthcare professional. You could also try a support group. Many people find it helpful to talk to someone about their feelings.
If you or a family member has suicidal thoughts, call a suicide or emergency hotline immediately.
During treatment you direct all of your energy toward just getting through it. After treatment you are left to deal with how you feel about this traumatic and unexpected event that has drastically changed your family’s life. This can be very difficult.
After people experience a traumatic event they can have feelings of anxiety that don’t go away. Childhood cancer survivors and their parents may experience symptoms of post-traumatic stress (PTS) such as:
- avoiding people, places and thoughts that remind you of your cancer experience
- strong feelings of guilt, hopelessness or shame
- difficulty falling or staying asleep
- irritability or angry outbursts
- difficulty concentrating
- nightmares or flashbacks about the traumatic event
- loss of interest in activities or relationships that you used to enjoy
- frightening thoughts
- difficulty feeling emotions
Cancer-related PTS can be similar to post-traumatic stress disorder (PTSD) but it is generally not as severe. PTSD is a specific group of symptoms experienced by people who have seen painful, life-changing events, such as natural disasters, violent crimes, bombings or war. PTSD symptoms can be different for each person and can come and go.
If you are experiencing symptoms of PTS or PTSD, it is important to be treated because symptoms can prevent you from getting the follow-up care you need. Talk to your doctor or mental health professional. There is treatment available. It may include counselling, medication or a combination of both. Asking for help is not a sign of weakness. It is a sign that you are taking the first step toward dealing with and gaining control over your feelings.
Many childhood cancer survivors and their families experience personal growth because of their cancer experience. After treatment, looking back on your experience can change the way children and their families think about themselves. Many see positive changes as a result of going through and surviving cancer. You may feel stronger. You may feel you can focus on what really matters in life. You may appreciate life more, have deeper personal relationships with family and friends and a stronger sense of spirituality. You may feel more confidence in handling different situations and more certainty about priorities and have a desire to give back.
Coping with emotions
With strong support from family, friends, other cancer survivors and counsellors, many children who have survived cancer and their families can thrive in spite of the challenges they have had to face.
Some tips for coping with emotions and finding support include:
- Recognize your emotions. Don’t ignore them or they can build up. Talk to friends, family or other cancer survivors. Find healthy ways to help you deal with how you’re feeling such as blogging, journaling, being active, meditating, yoga, dance, music or art.
- Accept your emotions. It’s OK to feel afraid, sad or angry. Focus on how you will manage your emotions.
- Don’t worry alone. Join a survivor support group and exchange information. Participate in an online peer or chat group. You may feel a sense of belonging in that others have the same emotions as you.
- Decrease stress. Take up a hobby. Doing something you enjoy can be relaxing and can take your mind off your thoughts and feelings. Learn relaxation techniques. Try not to do everything at once. Pace yourself and set priorities. Ask for help.
- Be informed. Talk to your follow-up doctor about what to expect and anything to watch for. This may help to lessen your worry or anxiety. Attend a survivor conference or camp. Attend an educational workshop on survivorship.
- Keep up with regular follow-up appointments. Eat well. Exercise regularly. Have good sleep habits. Don’t smoke. Limit alcohol.
- If emotions are getting in the way of your daily life or you feel hopeless, talk to a mental health professional or counsellor.
Focusing on the future
A cancer diagnosis often means that plans for the future get dropped and survival becomes the focus. After treatment ends you may wish to get back to thinking about your pre-cancer goals, such as athletics, education and relationships. You may find it hard to think about the future. Sometimes you have to make changes to your life plans because of cognitive or physical changes from cancer. This can be hard to accept. Joining a support group or talking to a counsellor may help you to focus on your future.