The emotional impact

When you are first told, or come to realise, that you have advanced cancer, you may feel a range of emotions.

If you didn’t know you had cancer at all, a diagnosis of advanced cancer can sometimes feel like a double blow. If you’ve already been treated for cancer, you may experience different, possibly stronger reactions than when you heard for the first time that you had cancer. Sometimes you may even feel relieved – you may have suspected there was something wrong and now you know why.

There is no one way to react when you are told that the cancer is too advanced to cure. Everyone is different and will respond in their own way. Give yourself time to take in what is happening and do what is comfortable for you. Whatever you are feeling, it is likely those around you may be experiencing similar emotions.

Feelings you may experience

You may have a range of emotions, including:

Denial – A diagnosis of advanced cancer can be hard to accept. Some people deny the cancer can’t be cured or that treatment options are limited. Denial can give you time to adjust to the news, but if it’s ongoing it can also delay you from getting treatment or help.

Fear or anxiety – It is frightening to hear the cancer has come back, has spread or is at an advanced stage at diagnosis. Fear or anxiety (a feeling of worry or unease) may occur from the shock of diagnosis or having thoughts about dying.

Anger – You may feel angry because you’ve had to deal with cancer already, because you weren’t diagnosed earlier, or because you feel your life has been shortened. Sometimes it may even be hard to work out exactly what your anger is about.

Guilt – It’s common to blame yourself for the cancer, but the reason cancer spreads or doesn’t respond to treatment is usually unknown. You may be worried about the impact cancer could have on your family or feel guilty that they may have to take care of you.

Uncertainty – You may feel you have less control over your life. It can be hard to adjust to an uncertain future, although some people may also feel a sense of hope in the uncertainty.

Loneliness – You may feel lonely at times even if you have people around you. It’s natural to think nobody understands what you’re going through. Your family and friends may have trouble dealing with the diagnosis and some may even distance themselves from you.

Sadness or depression – Feeling sad after a cancer diagnosis is common. 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 – you may be experiencing depression.

There are many simple things you can do to help you cope and feel more in control.

Join a support group – There are face-to-face, internet and telephone support groups where people meet regularly to share their experiences.

Connect online – Use technology such as email, Facebook 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.

Find out what to expect – Information can help you understand what to expect, and plan for changes. This may make you feel more secure.

Accept help – Even when your friends are genuinely willing to help, it can sometimes be hard to ask. It may be useful to have one friend or relative to
coordinate offers of help and to update others on your progress. Online tools, such as Gather My Crew, can help organise volunteers.

Try complementary therapies – Complementary therapies, such as relaxation, meditation and massage, may improve coping, decrease stress and anxiety, and improve your mood.

Get help with how you’re feeling – If at any stage you feel overwhelmed, speak to your doctor, as counselling or medicine – even for a short time – may help. Your GP may also refer you to a psychologist. The organisation Beyond Blue has information about coping with depression and anxiety.

Find hope in other things – Focus on the small things that are still possible, e.g. having a coffee with a friend or watching the garden bloom.

Draw on spirituality – Some people find meaning and comfort in their religion, faith and spiritual beliefs. Others may experience spirituality more generally. A cancer diagnosis can challenge the beliefs of some people. It may help to talk about your feelings with a spiritual care practitioner, religious leader or counsellor.

A diagnosis of advanced cancer often means finding new or different ways to cope with your emotions.

Managing uncertainty – Having advanced cancer often means living with uncertainty about what lies ahead. This can be challenging. Some people say they avoid thinking about what the future may hold by keeping busy or distracting themselves from their thoughts. While distraction can work in the short term, you may need to find your own way to manage difficult thoughts and emotions. Everyone will find their own way at their own pace. There is no right or wrong way.

Loss and grief – A diagnosis of advanced cancer often involves a series of losses, such as the loss of good health, changing relationships, the loss of your hopes and future plans, or a loss of independence. You may need time to grieve for these losses.

Different people grieve in different ways. It is not as simple as going through stages. It is a process, and the intensity can vary. Some people describe different “waves” of grief, from mild to  overwhelming. You may experience grief gradually and at different times – at diagnosis, if you start to feel unwell, or if treatment stops working.

A social worker or counsellor can help you and your family find strategies to manage the grief and loss you may experience. Your palliative care team can also provide grief support or refer you to someone who can help.

Being realistic – A common belief is that people with cancer need to stay positive. While you don’t have to deny the reality that cancer is often  frightening and serious, pressure to be optimistic all the time can drain your energy. It can also make it difficult to discuss any fears or sad feelings, which can make problems seem worse.

Try to be realistic about what is happening and talk to someone about how you’re feeling. This may help you cope better and get the support you need.

You might find that talking to a counsellor or psychologist allows you to discuss your worries more openly. The Better Access initiative allows
GPs to refer people to a psychologist for up to 10 free or subsidised sessions. Ask your GP for a referral to a psychologist or find your own here. Carers can also call the National Carer Counselling Program on 1800 242 636. This offers short-term counselling and is run by your local Carers Association.

Looking for meaning – Everyone has their own beliefs about the meaning of life. For some people, this might be found in spirituality or family; for others, it’s found in nature or art. It’s quite common for people diagnosed with advanced cancer to re-examine 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. While the diagnosis may cause some people to live life at a slower pace, others may feel an urgency to make the most of each day.

You may want to discuss meaning in your life with someone close to you, a spiritual care practitioner, or a professional counsellor or psychologist. If you’d prefer not to talk to someone else, you could write in a journal, meditate or pray.

Celebrating your life – Having advanced cancer is often a chance for people to reflect on their life and all 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, 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.

Finding hope – When you’ve been told you have advanced cancer, you may find it hard to feel hopeful.

What you hope for may change with time. You may look forward to good days with understanding company or the love of family and friends. 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 aspect of their lives.  Others find hope in small projects, such as completing a scrapbook of their life or planning a trip with their family.

While the cancer and its treatment can limit your activities, some people discover new strengths in themselves, and this gives them hope. For some people, faith or spiritual beliefs can help them get through tough times. People who find hope in these beliefs describe feelings of optimism that are hard to explain to others. Cancer can also test people’s beliefs. Either way, you may find it helpful to talk to a spiritual care practitioner, counsellor or psychologist for support.