Seeking support

Monday 25 May, 2009

Reviewed by:
Dr Raymond Snyder, Director Of Oncology,St Vincent's Hospital
Prof David Clarke, School of Psychology, Psychiatry and Psychological Medicine, Monash University

Taken from PDF iconLife with Cancer booklet (594kb)

Life with Cancer bookletOn this page: 

Professional help for individuals and families

Support at the hospital

Support within the community

Financial and legal services

Cancer Council Helpline

Multilingual Cancer Information Line

Talk to someone who has been there

Living with Cancer Education Program

Spiritual support

Cancer is not something anyone forgets. Anxieties may remain long after active treatment ceases. Those whose cancer appears to be cured must wait many years to be sure. Small symptoms may make you panic. As check-ups approach, you may become hopeful or anxious.

You may have moments when you feel as if you live perched on the edge of a cliff. These moments may take you by surprise, or at times when you are feeling low. Each person has to find their own ways of coping with the uncertainty.

In time, many people come to terms with their cancer. After their initial treatment, they are able to continue their normal working and social relationships. As one person put it, they can get up in the morning and make breakfast, laugh at bad jokes, and enjoy a good movie or a game.

At other times, your strength may desert you and you may be overwhelmed by uncertainties. Some people lose interest in favourite hobbies or activities. At times like these you may need assistance from outside.

The impact of a cancer diagnosis on people's lives varies greatly. Some people feel that their cancer has had a positive effect on their lives. Others experience depression or anxiety and need to seek treatment from a doctor or a counsellor.

Research into people's emotions following a cancer diagnosis shows that life after cancer causes new feelings to arise. They feel they need to find a new ‘normal'. Other people may treat them differently, seeing them as:

  • a fortunate survivor (‘you're lucky - a winner')
  • indebted to the people who cared for them while they were ill (‘now it's my turn')
  • transformed (‘get a new life')
  • heroic (‘you conquered death, what's your secret?').

Or they may want the person to go back to being just as they were (‘you're cured, get on with it').

The person who has had cancer may ask questions, such as:

  • why did I live while others die?
  • how do I repay my debt? When, and to whom?
  • who am I now?
  • how do I live my life now?

Some people find that recreating their life after cancer takes a lot of hard work.

It can be hard to ask for and accept outside help, particularly if you have never done so before. There is nothing shameful about seeking professional help, either as an individual or as a family. Health professionals themselves often seek support to help them face feelings of frustration and uncertainty in their work. They recognise the enormous stress that cancer can cause. For many people there may also be practical, financial or legal uncertainties, and help is also available in these areas.

Professional help for individuals and families

Many people with cancer, and their carers, find it helpful to explore their feelings - especially difficult ones such as fear, guilt, resentment and intense anger - with someone who can help them understand these feelings and find ways to channel them constructively. A professional counsellor is a practised listener who can help you to clarify your difficulties, find your own solutions, and discover your strengths.

Family counselling can also be very helpful. Each member is affected when any one member is going through an ordeal like a cancer diagnosis. Professional family therapists work with all members of the family. As discussed earlier (under ‘Coping within the family') cancer may force family members to take on new roles and extra burdens, while the person with cancer may be unable to fulfil their usual roles in the family. Children often don't know what is expected of them, parents lack emotional energy and teenagers may be torn between the need for independence and the need to remain close to a sick parent. Under these circumstances, people may feel angry, frustrated, confused or resentful.

All these things become less difficult if the family can discuss them openly. Some families find that counselling for the family as a unit can make this easier. You can find counsellors, and support groups, either at your treatment hospital or in the local community.

Support at the hospital

Many hospitals routinely include a social worker as a member of the cancer treatment team. Many also offer group support programs.

Some hospitals offer some form of group counselling as part of the standard treatment. Programs are organised in a variety of ways. Many start within days of surgery. Some groups meet only for the length of the hospital stay; others are long-term to enable members to work through problems in the everyday world. Some are made up of people with the same type of cancer (for example, people with breast or bowel cancer); some by type of treatment (in-hospital surgery or outpatient radiation therapy); and some by patient age. Some are just for people with cancer; others include partners, family or close friends.

Support within the community

A growing number of psychologists, social workers and psychiatrists specialise in counselling people and families affected by cancer. Your doctor, nurse and social worker are good sources for referrals to these professionals. Many federal and state government departments include psychological services. Neighbourhood or community health centres may also be able to help.

Call the Cancer Council Helpline on 13 11 20 to be linked in with the program which you feel would be best for you.

Financial and legal services

Illness can create a lot of expenses, but financial help is available from a number of sources. Start by making contact with your hospital or community social worker who can assess your situation, advise you and your family about benefits you are eligible for and help you to claim them, and help you deal with any debts that arise.

Centrelink administers pensions and benefits, and will be able to tell you if you are eligible for a sickness or carers allowance or other payments or assistance, such as a health care card. Local offices are listed in the telephone book, or you can call their disability, sickness and carers line on 13 27 17, or visit www.centrelink.gov.au Each office employs a social worker who can help to guide you through the system. You can make an appointment to see the social worker, either by telephone or at the counter.

If you are having difficulty with mortgage payments or if you think that these might become a problem, contact the manager of the branch which arranged the mortgage to explain your situation. You can ask your social worker to write a report to help with this. You may be able to arrange to pay less each month, either by extending the term of the mortgage or by making interest-only payments for a while. Your doctor can complete any forms that you might require and can provide other information (with your permission) if necessary.

Unions and professional organisations may be able to provide financial help or advice. Some professions have funds that help with cash grants and sometimes holidays as well. They may also be able to help with preparing a will.

Financial counsellors can give advice on managing your finances, accessing your superannuation or other benefits early and other aspects of your life. Get a referral to your nearest community centre through the social worker at your treatment centre, or try calling Community Information Victoria on 9672 2000.

Legal information and services are available through Victoria Legal Aid: telephone 9269 0234. There are offices around Victoria or try their website at http://www.legalaid.vic.gov.au/.

Cancer Council Helpline

The Cancer Council Helpline is a confidential service where you can talk about your concerns and needs with cancer nurses for the cost of a local call. They can send you information and put you in touch with other services in your own area. Phone 13 11 20.

Multilingual Cancer Information Line

The Multilingual Cancer Council Helpline is a confidential service of the Cancer Council. You can call and speak to a cancer nurse with the help of an interpreter for the cost of a local call. It is for people with cancer, and people who are close to them. People who speak any language can use the service.

Talk to someone who has been there

Getting in touch with other people who have been through a similar experience can be very beneficial. There are many ways to contact others for mutual support and to share information.
In these support settings, most people feel they can speak openly, share tips with others, and just be themselves. You will probably find that you feel comfortable talking about your diagnosis and treatment, your relationships with friends and family, and your hopes and fears about the future.
Support services available for patients, carers and family members include:

  • Cancer Connect, a telephone peer support program that matches you with a volunteer who has been through a similar cancer experience, and who understands how you're feeling.
  • face-to-face support groups, which are often held in community centres or hospitals
  • telephone support groups for certain situations or types of cancer, which trained counsellors facilitate
  • online discussion forums where people can connect with each other any time - see www.cancerconnections.com.au  

Ask your nurse or social worker to tell you about support groups in your area. Visit www.cancervic.org.au or call the Cancer Council Helpline on 13 11 20 to access the Cancer Services Directory and find out how you can connect with others.

Joining a consumer advocacy group can also be a rewarding experience for people who would like to use their experience to make a difference for others like themselves. Visit www.cancervoicesvic.org.au for more information.

Living with Cancer Education Program

The Cancer Council's Living with Cancer Education Program provides information on cancer and ways of coping with it. The program runs over one day or several weeks. Groups are small, with plenty of time for talking. Courses are held at hospitals and community organisations throughout Victoria. Contact your hospital social worker or the Cancer Council Helpline.

Spiritual support

Religion or spirituality can be a great source of strength for some people. Some find that their faith is strengthened as a result of having cancer, or that faith gives them newfound strength. Others become more aware of and interested in religious or spiritual matters, perhaps for the first time in their lives, when they have cancer.

This may be a time when you wish to explore spiritual ideas, and you may wish to talk to people from different faiths about different beliefs, and see how they meet with your own.

If you want to talk to a chaplain, priest, rabbi, imam or other religious leader or mentor, don't be put off just because you have not attended services regularly, or because you are unsure about what you believe. These people are used to uncertainty. Their concern is to help you sort through your ideas, doubts and beliefs, and find peace of mind.

Leaders from different religious orders have often completed programs to assist them in helping people with cancer and their families, or have considerable professional experience with people who are ill or dying. People offering spiritual support have varying capacities for coping with life-threatening illnesses and the possibility of death.

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Updated: 25 May, 2009