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 Support Group (FF): JOHN CANCER WELLNESS & RESEARCH This support group is open to anyone living CENTRE (ONJ CENTRE) – HEIDELBERG with brain cancer, their friends and families. The group meets monthly (Last Thursday) Brain Space: Brain Space is a group for at Cabrini Malvern. You do not need to be a younger people affected by brain cancer Cabrini patient to join this group. The group (aged 18-39). The group meets four times is facilitated by health professionals. Living a year. with Cancer Education program – Brain For more information and to attend email Cancer, is hosted annually. [email protected] or call 9496 3315. More information: 03 9508 1514 or Brain Tumour Support Group (FF): The [email protected] Brain Tumour Support Group is open to all people diagnosed with a brain tumour, as well as their family, friends and carers. The group meets at the ONJ Wellness Centre and shares lunch together in a safe and relaxed environment. Activities include peer discussion, education sessions and therapeutic activities delivered by health professionals. The group meets on the second Wednesday of every month.

For more information and to attend email [email protected] or call 9496 3315.

FF = Open to family and friends 124

CANCER COUNCIL AUSTRALIA Cancer Connect: Cancer Connect is – NATIONAL a telephone peer support service that connects someone who has cancer with Telephone Support Groups: The Cancer a specially trained volunteer who has had Council hosts Brain Tumour Telephone a similar cancer experience. A Connect Support Groups for people diagnosed with volunteer can provide practical information, a malignant brain tumour. They are held emotional support and hope. on the first and third Monday of the month throughout the year (1.30 – 2.30pm AEST). For more information call the Cancer Council Each group has three to seven members on 13 11 20 or submit your details online at and two qualified facilitators. www.cancervic.org.au/get-support/connect- and-learn/cancer_connect. For more information or to join call the Cancer Council 13 11 20 or email Family Connect (FF): Family Connect [email protected]. is a telephone peer support service that connects family and friends of someone Telephone Support Groups (FF): The with a cancer diagnosis with a specially Cancer Council hosts Telephone Support trained volunteer who has had a similar Groups for people who are providing care cancer experience. A Connect volunteer can for a family member, friend or loved one listen with understanding and share their with a cancer diagnosis. They are held on experiences and ways of coping. the second and fourth Monday of the month (1.30 – 2.30pm AEST). Each group has For more information call the Cancer Council three to seven members and two qualified on 13 11 20 or submit your details online at facilitators. The Cancer Council will connect www.cancervic.org.au/get-support/connect- you to an appropriate group. and-learn/cancer_connect.

For more information or to join call the Online Community (FF): The Cancer Cancer Council 13 11 20 or email Council Online Community offers people [email protected]. currently living with cancer, cancer survivors, families, friends, carers and the wider cancer community the opportunity to connect, share experiences and find information and support in a safe forum.

The following link will connect you to the Online Community – www.cancercouncil. com.au/OC.

FF = Open to family and friends SECTION 6: References & Resources 125

BRAIN TUMOUR SUPPORT GROUP PEACE OF MIND FOUNDATION AUSTRALIA – NATIONAL (FF) – GEELONG AND SURF COAST

Brain Tumour Support Group Australia is a The Peace of Mind Foundation runs a closed Facebook group. It is moderated by monthly Brain Cancer Support Group in people with the direct experience of living Geelong that features a variety of guest with a brain tumour or brain cancer. It’s speakers (including dietitians, psychologists searchable on Facebook via ‘Brain Tumour and researchers). The group welcomes Support Group Australia’ or link: patients, carers, friends and family members www.facebook.com/ living in the Geelong/Surf Coast region, and groups/198016110233965/ offers social activities as well as a safe place to discuss feelings and share stories. The GREY MATTERS FOR YOU group also provides a children’s program in (FF) – CARLTON NORTH conjunction with the support group so adults can attend sessions while their children are The Grey Matters Cancer Support Group being looked after in the room next door. meets on the third Monday of the month throughout the year at the Carlton North For more information visit Library. This group welcomes people with www.peaceofmindfoundation.org.au. benign brain tumours or low-grade brain To register as a member phone the group cancers and their family members and facilitator Bec Picone on 0411 382 457 or friends. Activities center on peer discussion email her at bec@peaceofmindfoundation. and social activities but also include org.au. relaxation activities and a variety of other events. A gold coin donation is requested, BRICC – BALLARAT REGIONAL but not compulsory, to attend. INTEGRATED CANCER CENTRE (FF) – BALLARAT For more information call the Cancer Council on 13 11 20, email The Wellness Centre at BRICC has a Brain [email protected] Cancer Support Group open to brain cancer or visit www.greymatters.org.au/calendar patients, carers, friends and family members. The group meets the first Tuesday of the month throughout the year, at the BRICC Wellness Centre, Ballarat Base Hospital.

To book, contact the Wellness Centre Coordinator, Simone Noelker, on 5320 8614 or [email protected].

FF = Open to family and friends 126

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Phone 03 9496 3315 Email [email protected] 145 Studley Road, Heidelberg VIC 3084 www.buildingthebridge.com.au www.onjcancercentre.org www.austin.org.au