The emotional impact

Thursday 1 December, 2016

Download PDF Order FREE booklet

On this page:  First reactionsCoping with advanced cancerThe effect on people close to you


Being diagnosed with advanced cancer or finding out the cancer has returned or spread can feel overwhelming. It is often difficult to take in the news immediately.

First reactions

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. 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. A diagnosis of cancer can also lead people to question their values and priorities, as well as the meaning of their life. There is no right or wrong way to react when you are told your cancer is too advanced to cure. Everyone responds in their own way. Give yourself time to take in what is happening.

"When I heard the word cancer, my mind went completely blank. I was crying so hard I didn’t hear a word the doctor said after that. After a few days I started to think more clearly again." – Roberta
Feelings you may experience
Denial

An advanced cancer diagnosis can be hard to accept. Denial can give you time to adjust, but 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 to begin with. 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 or because you weren’t diagnosed earlier. Sometimes it may even be difficult to pinpoint 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 feel continually sad or down for two or more weeks and are not enjoying or interested in your usual activities, or are unmotivated, talk to your doctor – you may be experiencing depression.

Coping with advanced cancer

Having advanced cancer often means living with uncertainty. This can be challenging, and you may cycle through various emotions.

After the initial shock of the diagnosis, some people say they avoid thinking about what the future may hold by keeping busy or distracting themselves from their thoughts. Some people say distraction works during the day, but find it more difficult to silence worrying thoughts during the middle of the night.

Grief, loss and change

Grief is the natural response to any loss or major change. An advanced cancer diagnosis can lead to physical, emotional, social, spiritual and financial changes. You may grieve for the loss of your hopes and plans for the future, how living with the illness could affect your life or independence, or the uncertainty it creates for what lies ahead.

Different people grieve in different ways. It can affect you physically and emotionally. Grief 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 during treatment.

It is possible to find ways of accepting the loss. Some people refer to this as finding a ‘new normal’, a way to live life meaningfully while also experiencing grief. There could be more than one ‘new normal’, depending on how the disease progresses.

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.

Feeling down

Everyone reacts and adjusts to the diagnosis of advanced cancer in their own way and in their own time.

Feeling low or depressed following a cancer diagnosis is common. You may have continued feelings of sadness, or hopelessness, or you may have lost motivation to do things that previously gave you pleasure. Getting help with depression can allow you to deal with other problems more easily and quickly, and improve the quality of your life.

Talk to your GP, as counselling or medicine – even for a short time – may help. If necessary, they can prepare a GP Mental Health Treatment Plan and you can access the Medicare-funded Better Access initiative, which provides counselling with psychologists

or social workers. Your local Cancer Council may also run a counselling program, or you may like to speak to somebody who has the same type of cancer as you through a peer support program.

The organisation beyondblue has information about coping with depression and anxiety. Go to beyondblue.org.au or call 1300 22 4636 to order a fact sheet.

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 positive, 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 and can drain your energy.

Pressure to be optimistic 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 around you may also help you get the support you need.

You might find that talking to a counsellor, social worker or psychologist allows you to discuss your worries more openly.

"I often think I will scream if one more well-meaning person says ‘Be positive!’" – Carolyn
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 prioritise what they think is most important in their life.

The prospect of a shortened life span does not always stop people from trying to achieve long-held goals, but it may mean they adjust some of their goals. While the diagnosis may cause some to live life at a slower pace, others may feel an urgency to make the most of each day.

You may want to look for meaning in your life with someone close to you, or to talk to a spiritual or religious adviser, or to 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 an opportunity for people to reflect on their life and all they have done, and to think about their legacy.

Some people like to prepare something to hand down to family and friends as a memory of themselves. If you’d like to do this, you could consider writing letters or stories of your life, making a recording of special memories, reviewing or arranging photo albums, documenting your family’s history or family tree, making a playlist of favourite songs, gathering treasured recipes into a cookbook, or creating artwork.

Make a memory box to share elements of your life with family and friends. You can include items that reflect your life, shared experiences and personality, e.g. postcards, photos or a list of happy memories.

The effect on people close to you

You may find that how your family and friends react to your diagnosis varies, and they may not react in the way you expect them to. They may need time to adjust to your diagnosis, and may experience similar fears and anxieties, and need as much information and advice as you. Sometimes family members may feel more distressed than the person with cancer. This seems to be more common when there is a lack of communication between the person diagnosed with cancer and the people close to them.

Cancer is often a reminder that life is fragile, and family and friends may behave in ways you find difficult or hurtful. Some may stay away or stop contacting you because they don’t know how to respond or are afraid of losing you. Others may block out or ignore things that are too painful to contemplate. However, you may find that your friends respond with understanding and openness, and become even closer.

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 text messages, email, blogs or social networking sites, or write one letter and have copies sent to loved ones. Ask for replies so you know what others are up to.

"It is really important to ask for help when you need it – whether it be for practical, financial or spiritual needs. Volunteers, in particular, can offer lots of practical support, as well as friendship." – Leon
Getting help

People might be eager to offer help when they first hear about your diagnosis.

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 workplaces may help by providing updates about what is happening at work, if you want to know or would like the distraction.

Even when your friends are genuinely willing to help, it can sometimes be hard to ask. It may be useful to delegate one friend or relative to coordinate offers of help and to update others of your progress if you’re not able to contact everyone individually yourself. There are also online tools to help you organise volunteers, e.g. Lovlist or Meal Train. If you’re keen to stay independent, it can be challenging if your friends want to do everything for you.

Home care services or Cancer Council may be able to provide assistance with domestic tasks such as cooking and cleaning. For more information, see our support and information section.


Reviewed by: Dr Maria Ftanou, Lead Clinical Psychologist, Peter MacCallum Cancer Centre and Research Fellow, Melbourne School of Population and Global Health, University of Melbourne, VIC; Dr Kathryn Dwan, Senior Policy Officer, Palliative Care Australia; Alison Hocking, President-Elect, Oncology Social Work Australia, VIC; Philippa Kirkpatrick, National Policy Manager, Palliative Care Australia; Prof Liz Lobb, Professor of Palliative Care (Allied Health), Calvary Health Care, Kogarah, NSW; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Hamish Park, Consumer.
Updated: 01 Dec, 2016