PATIENT & CARER KIT

Fact Sheets & Downloads
Aims & Objectives

By increasing your knowledge of tumours, you will be better able to talk with the various health professionals and discuss the treatment of, and the outlook for the diagnosed person and family.

S.N.O.G hopes to achieve their aims and objectives by provision of information about the effects of a brain tumour and suggestions for coping and adjusting tohanges that may occur. This package was prepared to increase understanding about the social and emotional impact of a brain tumour and to address some of the support needs for all concerned.

  • Fact Sheets (see Fact Sheet Summary List)
  • Patient’s Guide to Understanding Brain Tumours (Schering-Plough Pty Ltd)
  • Pamphlet about Grade III and IV Astrocytomas
  • Community support
  • NSW Carer resource centre information
  • carer support groups
  • Accommodation in Sydney
  • Brain support group information
  • Phone link information; Telegroup Counselling for Adults with Cancer
  • Internet safety guide
  • Brain tumour publications and resources
  • Coping With Your Loved One’s Brain Tumour, National Brain Tumour Foundation
  • Order form ‘Patient Education Publications’, American Brain Tumour Association
  • Equipment hire information
  • NSW Cancer Council information and help line telephone

We hope that the information contained in this Kit is of assistance and should further information be required then please contact the S.N.O.G. Co-Ordinator: on e-mail: snog@snog.org.au

[ Download the SNOG brochure]

Acknowledgements

The Sydney Neuro-Oncology Group would like give a very special thank you to Mrs Laraine Cross BA Dip Ed BSW for letting us use her booklet “Coping with a Brain Tumour”. Without her knowledge and research this “Patient Information & Resource Kit” would not be completed.

Thanks must be given to a group of people who provided critical editing and ideas about the Resource Kit. Also to the people who inspired me on my journey as a professional carer.

  • Staff, Patients and Carers of NSP and RNSH
  • Jeanne Barr
  • Elizabeth Hannan
  • Mandie O’Reilly
  • Rochelle Firth
  • Beryl Osman
  • Tony Bookes
  • Michelle Lorschy
  • Colleen Bromwich
  • Helen Wheeler
  • Raymond Cook
  • Michael Biggs
  • Phillip Yuile
  • Geoff Herkes

Acknowledgment is made to resource material produced by:

  • American Brain Tumour Association
  • National Brain Tumour Foundation
  • United Kingdom Brain Tumour Society
  • The Australian Brain Tumour Network
  • Carers NSW
  • Commonwealth Carelink Centres
  • The Cancer Council NSW
  • The Queensland Cancer Fund
  • Anti-Cancer Council of Victoria
  • The Australian Brain Tumour Discussion Group (Dennis Argall)
  • Braintumour Publications & Resources (Denis Strangman)

We hope the information is of benefit to you. All effort is made to make sure the information is accurate. However, if you find a mistake please let us know.

Introduction to the Fact Sheets

The brain controls everything we do.

It coordinates all movements such as walking, sitting, eating and sleeping. Functions such as talking, thinking, laughing, crying are also coordinated by the brain. Doing these things at appropriate times is one of the major responsibilities of the brain. All senses experienced by a human being; seeing, hearing, touching, tasting, smelling and feeling are tasks managed by the brain.

Therefore, when with a tumour affect such an important part of the body, it is natural that change may occur.

Depending on where the tumour is situated, the diagnosed person may lack insight into changes that have occurred or are occurring. Sometimes these changes are noticed by family and friends but unnoticed by the person with the diagnosis. This can make it difficult for families & carers to cope. This lack of awareness on the part of the diagnosed person can make the experience of daily living difficult, especially for the support network of family and friends. Problems with memory, behaviour, moods and cognitive function all impact on relationships and lives.

Recognising the importance of these issues, professional have put the following Fact Sheets together to use as a guide to help patients and their carers cope better with some of these changes.

Disbelief & Shock

When a diagnosis of a brain tumour is received, both the person with the diagnosis and family, friends, work colleagues and people close to them experience disbelief and shock.

The diagnosis/prognosis and treatment can have profound impact on an individual’s life for a considerable period.

Understandably, this is an emotional period. Changes in daily routines and responsibilities may be necessary, and these changes will be easier if the situation is understood and options are explained.

Fact Sheets

– Fact Sheet # 1 “Questions to ask your Doctor
– Fact Sheet # 2 “Telling Family & Friends
– Fact Sheet # 3 “Helpful Suggestions
– Fact Sheet # 4 “Tips for Surfing the Internet
– Fact Sheet # 5 “What is a Seizure and How Do They Occur
– Fact Sheet # 6 “Drug Therapy for Seizures” (not attached)
– Fact Sheet # 7 “Medication
– Fact Sheet # 8 “The Brain
– Fact Sheet # 9 ” Brain Tumours
– Fact Sheet # 10 “Memory
– Fact Sheet # 11 “Many People Have Questions About Sex
– Fact Sheet # 12 “Factors Contributing to Behaviour & Personality Changes
– Fact Sheet # 13 “Driving
– Fact Sheet # 14 “Why Me? – Reaction to the Diagnosis
– Fact Sheet # 15 “How to Decide When to Return to work

Carer Fact Sheets

– Carer Information Kit – available NSW Cancer Council or SNOG office
– Carers Telephone Support Groups  – Cancer Council NSW  Tel 131120
– Carers NSW – www.carersnsw.org.au
– Carer Support – www.carersupport.org.au
– Carers Australia – www.carersaustralia.com.au
– Health Insite – http://www.healthinsite.gov.au/article/caring-someone-cancer