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References & Resources SECTION 6. References & resources 6 & resources References SECTION 6: References & Resources 117 References GENERAL BRAIN CANCER INFORMATION 6. Cancer Council Victoria: Sexuality, Intimacy and Cancer: A guide for 1. The Brain Tumour Charity: Cognition people with cancer and their partners, and brain tumours, 2016 2018 www.thebraintumourcharity.org/underst https://www.cancervic.org.au/living- anding-brain-tumours/living-with-a-brain- with-cancer/sexuality-and-intimacy/ tumour/side-effects/cognition-and-brain- tumours/ 7. State Trustees: Making a will www.statetrustees.com.au/wills/ 2. Caring for a Person with a Brain Tumour or Metastatic Brain Cancer, making-a-will/ American Society of Clinical Oncology, 8. Ovarian Cancer Australia: 2018 Family and Friends www.cancer.net/coping-with-cancer/ https://ovariancancer.net.au/ caring-loved-one/caring-person-with- brain-tumor-or-metastatic-brain-cancer 3. Cancer Council Victoria: Caring for someone who has a brain tumour fact sheet, 2012 (discontinued publication) 4. Cancer Council Queensland: Caring for yourself when caring for someone with a brain tumour, 2016 https://cancerqld.org.au/news/brain- tumour-support-service-newsletter/ 5. The Brain Tumour Charity: Carers – looking after yourself, 2018 https://www.thebraintumourcharity.org/ living-with-a-brain-tumour/relationships/ being-a-carer/ 118 Recommended resources GENERAL BRAIN CANCER INFORMATION FATIGUE Cancer Council The Brain Tumour Charity: Fatigue and The Cancer Council website is a reliable brain tumours source of information on brain cancer. This can be viewed as a web page or printed www.cancer.org.au/about-cancer/types-of- fact sheet. It provides information on brain cancer/brain-cancer.html cancer-related fatigue and strategies for The booklet Understanding Brain Tumours coping with this fatigue. – A guide for people with brain or spinal https://www.thebraintumourcharity.org/ cord tumours, their families and friends, is living-with-a-brain-tumour/side-effects/ available online or you can call 13 11 20 fatigue-and-brain-tumours/ to order a free printed copy. National Brain Tumour Society: Brain https://cancer.org.au/about-cancer/types-of- Tumours and Fatigue cancer/brain-cancer.html This two page fact sheet discusses the Brain Tumour Alliance Australia (BTAA) causes of fatigue in people with brain cancer BTAA is a national brain tumour patient and and strategies that can help manage fatigue. caregiver organisation in Australia. Their https://braintumor.org/brain-tumor- website has resources and links to useful information/ websites, fact sheets and booklets. Brainstrust: My Fatigue Book www.btaa.org.au/ This 60-page downloadable book helps The Brain Tumour Charity patients and carers to understand what is This is a UK-based charity dedicated to meant by fatigue and to self-manage brain providing support and information for people cancer-related fatigue. https://brainstrust.org.uk/brain-tumour- with a brain tumour, their families and friends. support/quality-of-life/living-well-with-a- www.thebraintumourcharity.org/ brain-tumour/fatigue/ Cure Brain Cancer Foundation This foundation is dedicated to improving brain cancer research, advocacy and awareness in Australia. www.curebraincancer.org.au/ SECTION 6: References & Resources 119 DEPRESSION AND ANXIETY EXERCISE Beyond Blue: Brain tumours, Brainstrust: Exercise and Rest anxiety and depression This fact sheet has information about https://www.beyondblue.org.au/ exercise when living with brain cancer. The Brain Tumour Charity: https://brainstrust.org.uk/brain-tumour- Depression and brain tumours support/quality-of-life/living-well-with-a- https://www.thebraintumourcharity.org/ brain-tumour/exercise/ living-with-a-brain-tumour/side-effects/ COMMUNICATION depression-and-brain-tumours/ The Brain Tumour Charity: NUTRITION Communication difficulties Cancer Council: This fact sheet has information about brain Nutrition and Cancer Guide tumours and communication. This includes www.cancervic.org.au/living-with-cancer/ information about communication difficulties nutrition and tips to improve communication. https:// www.thebraintumourcharity.org/living-with- The Brain Tumour Charity: a-brain-tumour/side-effects/ Diet and Brain Tumours communication-difficulties/ www.thebraintumourcharity.org/living-with- a-brain-tumour/health-fitness/diet/ FINANCIAL SUPPORT BC Cancer Agency: Nutrition, BrainLink: Legal and Financial Matters Radiation Therapy and Brain Cancer This fact sheet explains a number of legal www.bccancer.bc.ca/health- and financial matters including making professionals/clinical-resources/nutrition/ wills, powers of attorney and guardianship, nutrition-handouts managing finances and financial assistance. http://www.brainlink.org.au/page/109/ living-with-abi-fact-sheets 120 NDIS INFORMATION RETURN TO WORK NDIS: Flinders University: Work after Cancer Accessing the NDIS This website has information to support www.youtube.com/watch?v=EM03PSz3Ar8 work during and after a cancer diagnosis. Reasonable and necessary supports It provides advice to people diagnosed with cancer, their loved ones, clinicians and www.youtube.com/watch?v=TAMD1S-gorM employers about their options, rights and BrainLink responsibilities. http://workaftercancer.com.au This resource covers some of the ins and outs about the National Disability Insurance Cancer Council: Cancer, Work & You Scheme; the FAQ section is particularly This information can be viewed online, PDF helpful. download or as a free hard copy booklet. www.brainlink.org.au/page/95/national- https://www.cancervic.org.au/get-support/ disability-insurance-scheme-landing work/working-after-treatment-ends Every Australian Counts Brainstrust: Your Brain Tumour and Work This website has useful information and This page has information on working after resources to help navigate the NDIS treatment, patients’ rights, access to work www.everyaustraliancounts.com.au/ what- and information for employers. is-the-ndis/ https://brainstrust.org.uk/%20brain- tumour-support/quality-of-life/practical- help/access-to-work/ The Brain Tumour Charity: Employment and brain tumours This page provides useful resources to help you stay in, return to, or look for work. https://www.thebraintumourcharity.org/ living-with-a-brain-tumour/maintaining- your-independence/employment-and-brain- tumours/ SECTION 6: References & Resources 121 DRIVING SEXUALITY AND INTIMACY BrainLink: Driving Cancer Council: Sexuality, Intimacy and This fact sheet discusses specific problems Cancer: A guide for people with cancer and their partners that can affect driving, how to get a driving assessment and how to support a family This guide is a very useful resource. member who is no longer safe to drive. https://www.cancervic.org.au/living-with- http://www.brainlink.org.au/page/109/ cancer/sexuality-and-intimacy/sexuality- living-with-abi-fact-sheets and-intimacy-overview VicRoads Better Health: Brain injury and sexual Fact sheets: issues www.vicroads.vic.gov.au/licences/health- This fact sheet discusses causes of sexual and-driving/medical-forms-and-fact-sheets problems and resuming sex after brain injury Fitness to Drive: www.betterhealth.vic.gov.au/health/ www.vicroads.vic.gov.au/licences/health- ConditionsAndTreatments/brain-injury-and- and-driving/medical-conditions- sexual-issues and-driving/fitness-to-drive-faqs Assessing Fitness to Drive: https://austroads.com.au/publications/ assessing-fitness-to-drive/ap-g56/ neurological-conditions 122 CHANGES IN COGNITION, INFORMATION FOR CARERS, FAMI LY THINKING AND BEHAVIOUR AND FRIENDS The Brain Tumour Charity Carers Victoria is an organisation that https://www.thebraintumourcharity.org/ focuses on the needs of people in a caring living-with-a-brain-tumour/side-effects/ role. The Carer Advisory Line can provide cognition-and-brain-tumours/ some short-term counselling options, referral information and support. You can The Brain Cancer Group. contact them on 1800 242 636 and find This website has information about general more information online at brain cancer research and links to a set of www.carersvictoria.org.au/ factsheets about changes to thinking and behaviour. The Brain Cancer Group is a group of health professionals based in New South https://braincancergroup.com.au/ Wales who have compiled some useful resources-research/patient-carer-info/ information around cognitive changes, Cancer Council: Understanding coping with emotional changes and fatigue. changes in thinking and memory You’ll find online information at www.cancervic.org.au/ https://braincancergroup.com.au/ living-with-cancer/common-side-effects/ resources-research/patient-carer-info/ changes-in-thinking The Brain Tumour Charity: Supporting a loved one with brain cancer PRACTICAL SUPPORT This page offers useful information and Queensland University of Technology: fact sheets for people who support a family It’s okay to ask member or friend with brain cancer. This booklet includes questions to ask your https://www.thebraintumourcharity.org/ healthcare team about your brain cancer. living-with-a-brain-tumour/relationships/ It was written in collaboration with brain being-a-carer/ cancer survivors, family members and health Peace of Mind Foundation run a series professionals and is available in 10 languages. of weekend retreats and opportunities www.btaa.org.au for patients and families to get additional support. For further information visit: www.peaceofmindfoundation.org.au SECTION 6: References & Resources 123 Support groups AUSTIN HOSPITAL / OLIVIA NEWTON- Cabrini Brain Tumour
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