Living with Advanced Cancer
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Living with Advanced Cancer
The emotional impact
Being diagnosed with advanced cancer can be overwhelming. You might be in shock or feel completely numb. It can be hard to take in any information at this time.
It’s natural to have a lot of different emotions. If you didn’t know you had cancer, a diagnosis of advanced cancer can sometimes seem like a double blow. If it’s cancer that’s come back, you may be more upset than the first time you were diagnosed. Or you may even feel relieved if you suspected there was something wrong, because now you know why.
Everyone reacts differently – especially when told that the cancer is probably too advanced to cure. Give yourself time to absorb what is happening. There is no right or wrong way to react. You might feel one way at first and a completely different way later. It might help to know that your reactions are natural, and that there is support available to manage a range of emotions. Common feelings include:
Disbelief – It can be hard to accept that there are limited treatment options or that the cancer can’t be cured. While denial can give you time to adjust to reality, if it’s ongoing you may delay getting treatment or help. Discuss your diagnosis with your doctor, no matter how you feel.
Fear or anxiety – It is frightening to hear that the cancer is advanced when you are diagnosed, or that it has come back or spread. You may be anxious after the shock of diagnosis, or fearful of dying. If these emotions become overwhelming, they may lead to panic attacks.
Anger – You may feel angry that you weren’t diagnosed earlier, or because you’ve had to deal with cancer already, or because you feel your life will be cut short. Some people feel angry that, despite leading a healthy lifestyle, they have been diagnosed with cancer. This anger may be directed at family or friends, at doctors, or you may be angry at yourself. Asking “why me?” is completely understandable.
Guilt – It’s common to blame yourself for the cancer. You may look back at possible symptoms you think you missed, or fear that your lifestyle may have somehow contributed to the cancer. Remember that the reason cancer spreads or doesn’t respond to treatment is usually unknown. You may also worry about how your family will cope or feel guilty that they may have to take care of you.
Uncertainty – You may have less control over your life and your emotions, and this may leave you feeling helpless or powerless. It can be hard to adjust to an uncertain future or get used to the feeling of not knowing, especially if you are used to being organised or independent.
Loneliness – Even if you have people around, you may feel lonely at times. Feeling like nobody understands what you’re going through can be isolating. While family and friends are usually supportive, some may have trouble coping with the diagnosis, or misunderstand it. Some people may even distance themselves from you.
Sadness or depression – Feeling sad after a cancer diagnosis is a natural response. And your family and friends are often feeling down too. If you have continued feelings of sadness, have trouble getting up in the morning or have lost motivation to do things that previously gave you pleasure, talk to your doctor as you may have depression. Support is available for depression.
Ways to manage how you’re feeling
There are some simple things that you can try to help you to cope, or feel more in control, after an advanced cancer diagnosis. Which of these strategies works best will be different for everyone, and can change depending on how you are feeling at the time.
Find out more information – Understanding what to expect, and being able to plan for any changes can make you feel more in control. Your oncology team (doctors, nurses and allied health practitioners) can give you information and help you to plan.
Talk about how you’re feeling – If you start to feel overwhelmed, let your general practitioner (GP) know. Counselling or medicine – even for a short time – can be helpful. Your GP may be able to refer you for free or subsidised sessions to talk with a psychologist. Beyond Blue also has information about coping with depression and anxiety.
Share online – Use email, social media or a blog to stay in touch with family and friends. You can also visit the Cancer Council Online Community to connect with others in a similar situation.
Join a support group – There are some face-to-face, online and phone support groups where people with cancer meet regularly to talk about their experiences.
Try complementary therapies – Relaxation, meditation and massage can help you to cope. Complementary therapies can lower your stress levels, ease anxiety, and improve your mood.
Enjoy the little things – Try to focus on the small things that are still possible – like having a coffee with a friend or visiting your favourite places.
Accept help – Even when your friends are genuinely willing to help, it can sometimes be hard to ask. You might want one friend or relative to coordinate offers of help and update people on how you are. Online tools can also help organise volunteers, e.g. Gather My Crew.
Draw on spirituality – Some people find meaning and comfort in their religion, faith or spiritual beliefs. Others may experience spirituality in other ways, such as spending time with close family and friends or being out in nature. A cancer diagnosis can sometimes challenge your beliefs. It might help to talk about your feelings with a spiritual care practitioner (sometimes called a chaplain), religious leader or counsellor.
Coping with advanced cancer
Whether you’ve just been newly diagnosed or are living with advanced cancer, there will probably be new challenges to deal with, and you may want to explore different ways to help you cope.
Managing uncertainty – Having advanced cancer means not knowing what lies ahead. This can be hard to adjust to – especially if you’re someone who is used to being in control. Some people say they avoid thinking about what the future may hold by keeping busy or distracting themselves from their thoughts. For others, it’s about learning to live with not knowing. There is no right or wrong way to manage this uncertainty.
Loss and grief – A diagnosis of advanced cancer often involves a series of losses – from the loss of good health and changing relationships, to the change of your future plans or a loss of independence. You will probably need time to grieve for these and any other losses.
Different people deal with loss in different ways. It’s not as simple as going through stages or just having a good cry. It is a process, and the intensity of your feelings can vary. Some people describe different “waves” of grief, from mild to overwhelming. You may experience grief gradually and also at different times – maybe at diagnosis, if you start to feel unwell, or if treatment stops working.
A social worker or counsellor can give you strategies to manage grief and loss. The palliative care team can also provide grief support or refer you to someone who can help. For some people an advanced cancer diagnosis can raise spiritual questions. If this is the case for you, it might help to talk to your religious or spiritual care practitioner.
Being realistic – People with cancer are often told to “stay positive”. And while having hope is important, the reality is that cancer is often frightening and serious. Pressure to “put on a brave face” or be optimistic all the time can drain your energy and stop you saying how you really feel.
Not feeling positive can be a very normal part of having cancer, so try to be realistic about what is happening to you. It can help to talk to someone about how you’re coping and any fears or sadness you have. Being honest with others can help you get support or help if needed.
Sometimes you can tell a counsellor or psychologist worries or thoughts that you might not want to share with family or friends. A GP can usually refer you to a psychologist for a number of free or subsidised sessions. Ask your GP for a referral to a psychologist or find your own at the Australian Psychological Society. You can also call Cancer Council on 13 11 20 for help finding someone to talk to. You may be able to access counselling through your cancer treatment centre. Carers can call the Carer Gateway Counselling Service on 1800 422 737 for sessions through their local Carers Association.
Looking for meaning – Everyone has different ideas of what gives life meaning. For some people, it might be found in religion or family; for others, it could be found in nature or art. It’s common for people diagnosed with advanced cancer to re-evaluate what life means for them.
A diagnosis of advanced cancer does not always stop people from trying to achieve long-held goals, but they may start to focus on what is most important to them. Some people want to live life at a slower pace, others may feel an urgency to make the most of every day.
You may want to discuss meaning in your life with someone close to you, whether that’s a spiritual care practitioner, or a professional counsellor or psychologist. If you’d prefer not to talk to anyone, you could write in a journal, meditate or pray.
Staying hopeful – It can be hard to feel hopeful when you’ve been told you have advanced cancer. What you hope for may also change with time. You may look forward to good days with understanding people or the love of family and friends. Or you may find yourself hoping you will maintain your sense of independence or stay symptom-free.
Some people try activities they’ve never tried before and find hope in this new side of their life. Others find hope in small projects, such as completing a scrapbook or planning a trip with their family.
While the cancer and its treatment can limit activities, some people discover new strength in themselves, and this gives them hope. You may find that connecting with other people in a similar situation may also be helpful.
Faith or spiritual beliefs can provide comfort to some people in tough times. Those who find hope in these beliefs describe feelings of optimism that are hard to explain to others. Cancer can also test people’s beliefs. You may find it helpful to talk to a spiritual care practitioner, counsellor or psychologist about spiritual support.
Celebrating life – Having advanced cancer is often a chance for people to reflect on their life and all that they have done, and to think about their legacy. You could talk with family and friends about the special times you have shared together.
You might like to share some of your belongings with family and friends as a permanent reminder. You could also write letters or stories of your life, record special memories, make a short film or video featuring you with your friends, review or arrange photo albums, document your family’s history or family tree, make a playlist of favourite songs, gather treasured recipes into a cookbook, or create artwork or music.
This information is reviewed by
This information was last reviewed December 2022 by the following expert content reviewers: Dr Lucy Gately, Medical Oncologist, Alfred Health and Walter and Eliza Institute for Medical Research, VIC; Dr Katherine Allsopp, Supportive and Palliative Care Specialist, Westmead Hospital, NSW; A/Prof Megan Best, The University of Notre Dame Australia and The University of Sydney, NSW; Dr Keiron Bradley, Palliative Care Consultant, Medical Director Palliative Care Program, Bethesda Health Care, WA; Craig Brewer, Consumer; Emeritus Professor Phyllis Butow, Psychologist, The University of Sydney and Chris O’Brien Lifehouse, NSW; Louise Durham, Palliative Care Nurse Practitioner Outpatients, Princess Alexandra Hospital, Metro South Palliative Care, QLD; Dr Roya Merie, Radiation Oncologist, ICON Cancer Centre, Concord, NSW; Penny Neller, Project Coordinator, National Palliative Care Projects, Australian Centre for Health Law Research, Queensland University of Technology, QLD; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Xanthe Sansome, Program Director, Advance Care Planning Australia, VIC; Sparke Helmore Lawyers; Peter Spolc, Consumer.