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.

TBCG hopes to achieve their aims and objectives by provision of information about the effects of a brain tumour and suggestions for coping and adjusting to changes 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 TBCG: info@braincancergroup.com.au

[ Download the TBCG brochure]

Acknowledgements

The Brain Cancer 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 a tumour affects 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, professionals 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

– Cancer Institute Brain Cancer Factsheets Overview “Factsheets Overview
– Cancer Institute Brain Cancer Fact Sheet # 1 “Can’t seem to get yourself going? Don’t seem to care about anything?
– Cancer Institute Brain Cancer Fact Sheet # 2 “Anger and trouble with your temper
– Cancer Institute Brain Cancer Fact Sheet # 3 “Are you feeling tense, nervous and overwhelmed?
– Cancer Institute Brain Cancer Fact Sheet # 4 “Do you feel exhausted or tired a lot of the time?
– Cancer Institute Brain Cancer Fact Sheet # 5 “Can’t seem to think straight?
– Cancer Institute Brain Cancer Fact Sheet # 6 “Can’t seem to say or do the right thing at the right time?
– Cancer Institute Brain Cancer Fact Sheet # 7 “Do you feel that you are on an emotional roller coaster?
– Cancer Institute Brain Cancer Fact Sheet # 8 “Do you keep forgetting things?
– Cancer Institute Brain Cancer Fact Sheet # 9 “Are you having difficulty staying on task?
– Cancer Institute Brain Cancer Fact Sheet # 10 “Can’t find the right word or talk too much?
– Cancer Institute Brain Cancer Fact Sheet # 11 “Feeling lost, not knowing where you are?
– Cancer Institute Brain Cancer Fact Sheet # 12 “Do you repeat yourself or get stuck like a broken record?
– Cancer Institute Brain Cancer Fact Sheet # 13 “Do you only think about yourself and find it hard to see other people’s point of view?
– Cancer Institute Brain Cancer Fact Sheet # 14 “Do you sometimes act without thinking?
– Cancer Institute Brain Cancer Fact Sheet # 15 “When how you look no longer seems to be important
– Cancer Institute Brain Cancer Fact Sheet # 16 “Do you feel sad, tearful, can’t seem to enjoy yourself?

Carer Fact Sheets

– Carer Information Kit – available NSW Cancer Council or TBCG 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

 

Resource Sheets

– Cancer Institute Brain Cancer Resource Sheet – Anger Management
– Cancer Institute Brain Cancer Resource Sheet – Stress Management and Relaxation Techniques
– Cancer Institute Brain Cancer Resource Sheet – Stress Management
– Cancer Institute Brain Cancer Resource Sheet – Activity Scheduling
– Cancer Institute Brain Cancer Resource Sheet – How to Cope with Depression
– Cancer Institute Brain Cancer Resource Sheet – Mindfulness Exercise
– Cancer Institute Brain Cancer Resource Sheet – Goal Setting
– Cancer Institute Brain Cancer Resource Sheet – Memory Tips
– Cancer Institute Brain Cancer Resource Sheet – Timetable
– Cancer Institute Brain Cancer Resource Sheet – Checklist for Getting Ready
– Cancer Institute Brain Cancer Resource Sheet – Problem Solving