When you are referred to palliative care or while you are having palliative care, you may have a range of mixed emotions. Many people feel shocked, fearful, sad or angry. Others may feel relief or have a sense of inner peace. On some days they may feel hopeful, and on other days, they may feel anxious. Some people may also have ongoing depression. If this happens to you, it is important to tell your doctor, as counselling or medication can help.
You may find that while some people you know are supportive, others may not even know what to say to you. This can be difficult, and you may feel lonely or upset. If you need to leave work due to the cancer, this may cause further sadness or stress.It will probably help to talk about the different feelings you have.
Your partner, family members and close friends can be a good source of support, or you might prefer to talk to:
- members of your treatment team
- a counsellor, social worker or psychologist
- your religious leader or spiritual adviser
- a support group – see next page
- Cancer Council Helpline 13 11 20.
If you have children, the idea of telling them about the cancer can be unsettling. Cancer Council’s Talking to Kids About Cancer book may be helpful to you. There are also other free resources that may help you deal with the emotions that cancer can bring up. If your family or friends have questions that you cannot answer, suggest they call the 13 11 20 for more information.
Talk to someone who’s been there
Coming into contact with other people who have had similar experiences to you can be beneficial. You may feel supported and relieved to know that others understand what you are going through and that you are not alone. There are many ways for you and your family members to connect with others for mutual support and to share information.
In these support settings, people often feel they can speak openly and share tips with others. You may find that you are comfortable talking about your diagnosis and treatment, your relationships with friends and family, and your hopes and fears for the future.
Ask your nurse, social worker or Cancer Council Helpline about suitable support groups and peer support programs in your area.
Types of support services*
- Face-to-face support groups – often held in community centres or hospitals
- Online discussion forums – where people can connect with each other at any time – see www.cancerconnections.com.au
- Telephone support groups – for certain situations or types of cancer, which trained health professionals facilitate
- Peer support programs – match you with a trained volunteer who has had a similar cancer experience, e.g. Cancer Connect.
Useful organisations and resources
Commonwealth Carer Respite and Carelink Centres
This is a one-stop shop for accessing free, confidential, comprehensive information about services that can help with your care and assist you to live independently for as long as possible. Advisers can talk to you about equipment hire, nursing care, allied health services and programs such as Home and Community Care (HACC), which provides eligible people with short-term subsidised domestic help. Call 1800 052 222 or go to www.commcarelink.health.gov.au.
Palliative Care Australia and its state/territory member organisations
Peak organisations that promote palliative care information and standards. They have many useful resources, such as fact sheets, a specialist palliative care services directory, and detailed information on living with a life-limiting illness. Visit www.palliativecare.org.au.
Cancer Council services
Cancer Connections is an online discussion forum for people affected by cancer – see the website at www.cancerconnections.com.au. You may also be able to join a telephone support group for people with advanced cancer or their carers. This is a free and confidential program.
Pets Of Older Persons (POOPs)
A program for people receiving palliative care who don’t have friends or relatives who can help look after their pets. In NSW, this program is run through the RSPCA. There is also an organisation in WA. Visit www.rspcansw.org.au or www.poopswa.org.au.
For many people, an illness in the family can be a financial strain. This may be caused by extra out-of-pocket costs or from loss of income. For example, if you have to stay at home round-the-clock, household bills will increase and you and your family may eat more pre-packaged meals to save time and energy. You may need to pay for child care, transport, medication and equipment.
These extra costs can cause you and your family a lot of stress. Ask your social worker about any financial or practical assistance available to you and your carer, and apply for it as soon as possible. You may be eligible for assistance from the government, volunteer bodies, church groups or your local council.
The Department of Human Services (also known as Centrelink) offers financial support for people with a long-term illness and for primary carers. For Disability, Sickness and Carer enquiries, ring the Department on 13 27 17, or visit its website at www.humanservices.gov.au.
- The Sickness Allowance is for people who are temporarily unable to work due to illness. The Disability Support Pension is for people who are unable to work for two years or more because of their condition. Both are income and assets tested.
- The Carer Payment is for carers who provide constant care in the home of the person they are caring for. This payment is income and assets tested.
- The Carer Allowance is for carers who provide a significant amount of assistance, either in their own home or in the home of the person with cancer. The allowance is not means tested – you may be eligible for it if you are working or receiving another type of pension.
Cancer Council assistance programs
Your local Cancer Council may run programs to help people with cancer who need assistance with financial or legal matters.
For example, Cancer Council may be able to organise free or subsidised legal advice on issues such as advance care directives, enduring powers of guardianship, will preparation and early access to your superannuation fund.
Talk to your social worker or contact Cancer Council 13 11 20 to talk about what is available in your state or territory.