Who is a cancer survivor?
"Cancer survivor" means different things to different people, and moving from patient to survivor is different for everyone. Some see themselves as a survivor as soon as they are diagnosed with cancer, others see themselves as a survivor when active treatment stops or when they become free from signs of cancer.
For many people, survivor is a strong and positive term. Others feel guilty for surviving or feel the term implies that they will struggle to cope with cancer in the future. Some people do not like being labelled at all and do not identify as a cancer survivor. Others prefer to look forward to a future that is not focused on their past cancer experience. You may find it difficult to relate to the term survivor. Instead, you may refer to yourself as someone who has had cancer or is living with cancer.
However you feel about the label, you may wonder: what now? Research has shown that getting information about what to expect after treatment can help you prepare for this change.
We use the term survivor to mean anyone who has finished their active cancer treatment. No matter the words you choose to use, we hope this section will be helpful.
Improvements in diagnosing and treating cancer have led to an increase in the number of people surviving and living with cancer. There are about 1 million people living in Australia today who have been diagnosed with cancer at some stage in their life.
Finding a "new normal"
Having cancer is often described as an experience that starts at diagnosis. During treatment, some people feel that their life is on hold or in limbo.
When treatment ends, you may want life to return to normal as soon as possible, but you may not know how. Or you may want or need to make changes to your life. Over time, survivors often find a new way of living. This process is commonly called finding a new normal and it may take months or years.
Adjusting to the new normal
- You may feel both excited and anxious when treatment ends. You may need time to stop and reflect on what has happened before you can think about the future.
- You may feel a sense of loss or abandonment as you engage less with the treatment team, and support from family and friends becomes less intense.
- On the outside, you may look normal and healthy. But on the inside you may still be recovering physically and emotionally.
- You may have thought you would just resume your life exactly where you left off before cancer. This can take longer than you expect.
- Your family and friends may not fully understand what you've been through, or realise that the cancer experience doesn't stop when treatment ends.
- It may help to allow yourself time to adjust to your life after treatment. Ask your friends and family for their support and patience during this period.
A life-changing experience
Most people refer to cancer as a life-changing experience. Many people surprisingly find that there are positive aspects to having had cancer. Some people discover an inner strength they didn't know they had. Others develop new friendships during their treatment or discover new sources of support.
Cancer may prompt you to re-examine your priorities in life. This shift is often gradual; even positive change can take time.
- You may find you now place more value on your relationships
- with family or friends. You may choose to focus on the more meaningful relationships in your life.
- Some people are motivated to travel or start new activities.
- Other people reconsider their career goals and work values, and may decide to seek part-time work or a new role.
- You may want to make changes to your lifestyle, such as reducing stress, starting exercise or quitting smoking.
After treatment, some people want to help improve the cancer experience for others through support groups, volunteer work, advocacy or fundraising. There is no hurry. Focus first on your recovery. It is important to look after yourself if you want to help others. If this interests you, call Cancer Council 13 11 20 when you are ready to find out what options are available in your area.
"I've changed my career path and am studying community services in order to help people through changes in their life. The way you view life is different after cancer." – Pete
Myths about the end of treatment
I should be back to normal
Some people expect life to return to the way it was before the cancer diagnosis. The reality is often more emotionally and physically complex. Some cancer survivors find they can't or don't want to go back to how life was before their treatment. Others need time to recover from the turmoil of cancer.
I should feel positive
Survivors can feel a great deal of pressure from friends and family to think positively all the time. Although this is unrealistic, it can be a source of worry and guilt.
I should feel well
Many cancer survivors have ongoing health concerns because of the cancer or treatment side effects. The after-effects of treatment may make everyday life difficult.
I should not need any more support
Some survivors are surprised to feel that they need more support than ever after treatment ends.
I should feel grateful
Survivors can sometimes feel pressured to be grateful. However, the impact of cancer and its treatment on your life and future may make you feel upset, angry or resentful.
I should be celebrating
Some survivors feel they should be happy and full of wisdom because they survived, and may feel guilty or confused if they're not.
I should be the person I was before cancer
Many survivors say that cancer changes them. Some need time to adjust to physical changes. Others feel different, even though they look the same. Many survivors feel a sense of loss for the person they once were or thought they'd be.
Finding a new way of living
The transition to life after cancer treatment can take time. Take each day as it comes. Accept that you may have both good and bad days.
Assess your life. Ask yourself:
- What fulfils me?
- What is important?
- What gives my life meaning?
Consider keeping a journal. Many people find it helps to write down how they're feeling.
Look after yourself
Take the time you need to adjust to changes in your body or physical appearance. Do things at your own pace and rest between activities. Remember, your body is still healing. If you are worried about going out, ask someone to go with you.
Do something you find relaxing, such as reading, listening to music or taking a bath. Learn some form of relaxation or meditation, such as mindfulness, visualisation, yoga or deep breathing.
Talk about your emotions
Acknowledge your feelings. It may help to share any concerns or worries with family and friends, your doctor, a psychologist or counsellor.
Look at ways you can manage your own wellness and make lifestyle changes to improve your quality of life. This could include changing your diet, being more physically active or stopping smoking. Seeing a psychologist, counsellor or life coach may help you to develop goals and strategies to make any desired changes to your life.
Learning about other people's experiences may help. Join a support group, attend a survivorship program or read stories from other survivors. Connecting with other cancer survivors may help you cope and feel more positive about the future.
Manage side effects
You may have ongoing side effects after treatment. Talk to your health care professionals about your symptoms to see if they can be improved or managed better.
Reviewed by: Dr Haryana Dhillon, Senior Research Fellow, Centre for Medical Psychology & Evidence-based Decision-making, School of Psychology, University of Sydney, NSW; Polly Baldwin, 13 11 20 Consultant, Cancer Council SA; Jessica Barbon, Dietitian, Southern Adelaide Health Network, SA; Dr Anna Burger, Liaison Psychiatrist and Senior Staff Specialist, Psycho-oncology Clinic, Canberra Region Cancer Centre, ACT; Elizabeth Dillon, Social Worker, Peter MacCallum Cancer Centre, VIC; Prof Paul Glare, Chair in Pain Medicine and Director, Pain Management Research Institute, University of Sydney, NSW; Nicole Kinnane, Nurse Coordinator, Gynaecology Services, Peter MacCallum Cancer Centre, VIC; Amanda Piper, Manager, Australian Cancer Survivorship Centre, Peter MacCallum Cancer Centre, VIC; Kyle Smith, Exercise Medicine Research Institute, Edith Cowan University, WA; Aaron Tan, Consumer; Dr Kate Webber, Medical Oncologist and Research Director, National Centre for Cancer Survivorship, NSW.