Living with a Terminal Illness

Unfortunately, not all brain tumours are curable. Sometimes you or a loved one will be living with a terminal illness. This section provides some resources to help with navigating some of the confronting challenges that can be associated with advanced cancer, including practical guides for care-giving at home, how to prepare an Advance Care Plan, how to talk to children when someone they love has cancer that has spread, and some financial supports that may be available.

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Providing Effective Care at Home and at the End of Life – a PDF Handbook for Patients with a Terminal Brain Tumour and their Family Caregivers (UCSF).

Providing Effective Care at Home and at the End of Life – a PDF Handbook for Patients with a Terminal Brain Tumour and their Family Caregivers (UCSF).
The goal of this handbook is to provide an overview of what a patient and their family and caregivers may expect when facing a progressive, life-threatening brain tumour. This handbook is specifically focused on providing effective care at home and at the end of life. The handbook is produced by the University of California San Francisco (UCSF) and…
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Link Content Warning: Adult Content / Adult Supervision Recommended, Death / Dying

Talking to Kids about Cancer – When Cancer Wont Go Away (Cancer Council NSW)

Talking to Kids about Cancer – When Cancer Wont Go Away (Cancer Council NSW)
The Cancer Council have produced a guide as a starting point for talking to your children about cancer, in age-appropriate ways, at all stages of cancer. This particular chapter deals specifically with talking to children when someone they love has cancer that has come back or spread, or if you need to prepare them for the death of a parent or loved…
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Podcast: The thing about advanced cancer (Cancer Council NSW)

Podcast: The thing about advanced cancer (Cancer Council NSW)
"The thing about advanced cancer" is an audio podcast series produced by Cancer Council NSW. Each 20-30 minute episode covers a different topic related to advanced cancer - some are more suited for patients, others for carers. Topics include: Treatment options for advanced cancer, the role of hope and purpose in advanced cancer, living…
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Advance Care Planning (Advance Care Planning Australia)

Advance Care Planning (Advance Care Planning Australia)
Advance Care Planning is the process of planning for your future health care in case you were to become seriously ill or injured and are unable to communicate your preferences or make decisions. This can relate to the care you wish to receive at the end of your life. This website explains what Advance Care Planning is, and helps you create and…
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Financial and Legal Support (Cancer Council Victoria)

Financial and Legal Support (Cancer Council Victoria)
Cancer Council Victoria provides information on financial and legal support that may be available to you if you are affected by cancer. This includes information on financial costs of living with cancer, advice on managing finances after a cancer diagnosis, and a free Financial Counselling Program available to Victorians affected by cancer. They…
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Cancer and Work – Information for Patients and Carers (Cancer Council Victoria)

Cancer and Work – Information for Patients and Carers (Cancer Council Victoria)
In many cases, a diagnosis of a brain tumour will affect a person’s work life. Caring responsibilities may also impact the ability of family or friends to work when balancing demands of work and caring. Cancer Council Victoria provide some general information that you may find helpful when making decisions about working during or after cancer…
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Canteen Australia

Canteen Australia
Canteen is an Australian not-for-profit that provides free and tailored support to young people (aged 12-25) who are impacted by cancer. Whether they are dealing with their own diagnosis, a close family member's cancer, or death of a loved one, Canteen can provide: free counselling and individual support, connection to peers in similar…
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Facing End of Life (Cancer Council PDF Guide)

Facing End of Life (Cancer Council PDF Guide)
Cancer Council have a guide for people dying with cancer, their family and friends. The chapters in outline how you might feel knowing you are dying, what might happen physically, and how you can prepare for death. There is also information for carers, family and friends. This may be the first time you have read about end-of-life matters and it may…
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High-Grade Glioma – Guide to Best Cancer Care in Australia (multiple languages)

High-Grade Glioma – Guide to Best Cancer Care in Australia (multiple languages)
This Australian resource can help to guide you and your family through the experience of being diagnosed with high-grade glioma. It includes information on what tests to expect, timeframes for tests and referrals to specialists, diagnosis and treatment options, living with advanced cancer and suggested questions to ask your health care team to help…
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