The emotional impact of advanced cancer

First reactions

When you are first told, or come to realise, that you have advanced cancer, you could feel a whole range of emotions. If you didn’t know you had a primary cancer, a diagnosis of advanced cancer can sometimes feel like a double blow. And 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 people feel relieved; you may have suspected something was wrong and now you know what it is. These reactions are all natural. Talking about your feelings with others you trust – even painful feelings – may help you cope with the diagnosis.

  • Fear or anxiety – It can be frightening to hear your cancer has come back, has spread or is at an advanced stage to begin with. Fear or anxiety (a feeling of worry or unease) may occur from the shock of diagnosis; feeling concerned about having less control over aspects of your life; or having thoughts about dying.
  • Anger – You may be angry because you’ve had to deal with cancer already or because you weren’t diagnosed earlier. Sometimes it may even be difficult to pinpoint exactly what your anger is about.
  • Guilt – You may 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. Though some people may also feel a sense of hope in the uncertainty.
  • Loneliness – You may feel lonely at times even if you have many people around you. It’s natural to wonder if anybody else 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.
  • Denial – An advanced cancer diagnosis can be hard to accept. Denial can give you time to adjust, but it becomes a problem if it stops you from getting treatment or help.
  • Sadness or depression – People with advanced cancer may sometimes feel sad or depressed. It is okay to feel that you’re not coping all the time. But if the sadness lasts longer than two weeks, you’re having trouble sleeping or not enjoying things you usually like doing, tell your GP. Counselling or medication can help.
  • Search for meaning – A diagnosis of cancer often leads people to question their values and priorities, as well as what life means for them.

Ongoing effects

Having advanced cancer often means living with a degree of uncertainty – from the big questions, like how long you might live, to the smaller but still important questions, such as what the next test will show. Learning to live with uncertainty can be challenging, and everyday is likely to be different. Cancer is a personal experience. There is no right way to deal with cancer, but there are different ways to face it, depending on your outlook.

Grief, loss and change

Grief is a natural reaction to any loss or major change that is painful. What you grieve for can be as varied as how you think and feel. An advanced cancer diagnosis can lead to physical, emotional, social, spiritual and financial changes and losses. You may grieve over the loss of what your hopes and plans were for the future, how living with a chronic disease could affect your life (if it restricts your life or independence), or the uncertainty it creates for what lies ahead.

When and how people grieve varies for each individual. You may experience grief at diagnosis, if you start to feel unwell, or during treatment. Its intensity can vary – there may be times when it feels overwhelming. It is possible to find ways of living with the grief. Some people refer to this as finding a ‘new normal’, a way to live life meaningfully while also experiencing the grief. There could be more than one new normal depending on how the disease changes.

A social worker or counsellor can help you and your family deal with grief and loss you may experience.

Feeling down

Everyone reacts to their diagnosis and adjusts to it in their own way and in their own time. Some people may face more challenges with this than others.

It is common to feel depressed following a cancer diagnosis. You may not be able to think as clearly, you may lose interest in things you used to enjoy, or you may not want to get up in the morning at first. While depression is common among people with cancer, it can be treated. Tackling depression early may mean that you can deal with other problems more easily and quickly. Ways to help manage depression can include:

  • Counselling – Ask your treatment team or call Cancer Council Helpline 13 11 20 for more information. Your GP can help you access the Medicare-funded Better Access initiative, which provides counselling with social workers and psychologists.
  • Medication – This is helpful for some people. Even if you feel you have good reason to be depressed, medication can help stop depression becoming an additional problem.

Being realistic

Some people believe that the attitude of the person with cancer can influence the outcome of the disease. While it can help to be optimistic, this doesn’t mean you are denying the reality that cancer is often frightening and challenging. Trying to put on a brave face all the time and avoiding anything painful is hard work – it can drain your energy and may not be a permanent solution as the realities of living with cancer continue.

Pressure to be positive all the time can 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 you trust about your fears and concerns so that you can better cope with them. Explaining your feelings to those you trust may also help you get the support you need.

Talking to a counsellor or psychologist may also allow you to talk more openly about your concerns and feelings.

Looking for meaning

Everyone has their own beliefs about the meaning of life, and it’s quite common for people diagnosed with advanced cancer to re-examine this meaning. For some people, cancer may lead them to change what they think is most important in their lives.

You may want to look for meaning in your life with someone close to you, a spiritual or religious adviser, or a professional, such as a counsellor. 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 often gives people a chance to look back on their life and reflect on all they have done. Some people like to share some of the stories of their life with loved ones or prepare something to hand down to family and friends as a memory of themselves, like a legacy.

If you’d like to do this, you could consider writing letters, making a recording of special memories, reviewing or arranging photo albums, writing down your family’s history or family tree, making a playlist of favourite songs, gathering favourite recipes into a cookbook or creating artwork.

Memory box Living with Advanced Cancer Dec 2013

The effect on people close to you

Family and friends may need time to come to terms with your diagnosis and how they feel about it. They may experience similar fears and anxieties, and need as much information and advice as you. Sometimes family members can feel more distressed than the person with cancer. This seems to be more common when there is a lack of communication.

Another possible reaction is when family or friends stay away or stop contacting you. They may take time to adjust to the fact that things have changed for you. Cancer is also a reminder that life is fragile. When family and friends first hear about the diagnosis, they may block out or ignore things that are too painful to contemplate. You may find this difficult or even hurtful, but it can be a common experience for people with advanced cancer. Other friends may respond with understanding and openness, and become even closer.

Some people will not know how to respond or what to say. Your friends or family may need to take their lead from you. You can guide them on how much you want to talk about the illness and the different issues you want to think about or plan together.

There are many ways to keep friends and family updated when you don’t have the time or energy to talk with people individually. Use email, blogs or social networking sites, or write one letter and have it copied and sent to loved ones. Ask for replies so you know what others are up to.

Getting help

People might be eager to offer help when they first hear about your diagnosis. But it can be a problem if your friends want to do everything for you rather than help you stay independent.

Even when your friends are genuinely willing to help, it can sometimes be hard to ask for their help. Some people will prefer doing practical things for you, such as cooking a meal, shopping for groceries or driving you to an appointment; others may be good at keeping you company.

People you know from your current or past workplace may help by providing updates about what is going on at work, if you want to know or would like the distraction. However, sometimes it might be more helpful if friends and family stay away for awhile. It may be useful to delegate one friend or relative to coordinate offers of help from other people and to update friends about your progress if you’re not able to contact everyone individually yourself. Home care services may be able to provide assistance with domestic tasks such as cooking and cleaning.

This information was last reviewed in December 2013

This information has been reviewed by: Dr Kathy Pope, Radiation Oncologist, Peter MacCallum Cancer Centre, VIC; Jessica Abbott, Cancer Care Dietitian, Alexandra Hospital, QLD; Frances Bellemore, Clinical Care Nurse, St Vincent’s Hospital, NSW; Gabrielle Gawne-Kelnar, Telephone Support Group Facilitator, Cancer Council NSW; Helpline and Cancer Counselling Service staff, Cancer Council QLD; Di Richardson, Consumer; Dr Mary Brooksbank, Philip Plummer and Claire Maskell Gibson on behalf of Palliative Care Australia.

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