Support

When did you reach out for support? *

When I was first diagnosed 9
Just before surgery 2
Just after surgery 0
During my stay in hospital 0
Soon after I left hospital 0
Weeks after leaving hospital 1
Months after leaving hospital 0
I didn’t reach out for support 3
I don’t know 1
Not answered 9

What support services (if any) did health care professionals inform you of?

Brain Tumour Alliance Australia 2
Cure Brain Cancer Foundation 1
Local Rehabilitation Hospital 2
Local Counselling Service 0
None 6
Other * 1

Which Financial Support Services are needed.

Assistance in dealing with Financial Institutions 4
Assistance in dealing with Utility Providers 3
Information about Hardship Grants 8
Information about Emergency Relief Services 5
Information about where to get financial help 8
Assistance with accessing Superannuation 5
Assistance with Child Care Subsidies or Grants 2

What sort of support services do you feel could be made more available in your ongoing brain tumour journey?

Better counselling services 9
More accessible support groups 7
Better information from government agencies 9
Availability of a Care Coordinator 10
Better information about obtaining financial support 8
Disability Parking Information 2
Home Help Information 1
Not Applicable 0
Other * 0

Areas of Family Support Important to You

Being able, if required, to advocate on my behalf 5
Understanding personality changes that may occur 4
Being able to assist me with various tasks 6
Being prepared to take up slack at home 6
Being able to communicate honestly with family and friends 11
Other * 1

INITIAL FAMILY/FRIENDS SUPPORT

My partner or spouse accompanied me to all of my appointments 7
I was on my own 5
A friend accompanied me to most or some of my appointments 2
My late husband attended the initial consultation and then after his passing my two sons accompanied me 1
A friend accompanied me to all of my appointments 1
My partner or spouse accompanied me to most or some of my appointments 0
A parent or guardian accompanied me to all of my appointments 2
Not answered 5

Overall Effect on Family *

It has brought us closer together 7
It has adversely affected our family 2
It hasn’t affected us at all 2
I don’t know 2
Not answered 11

Do you feel isolated from your support? *

NO, I don’t feel isolated 4
YES, I do feel isolated 6
I’m not sure 5
Not answered 10

Has your Employer/Workplace been supportive of you?

Yes, they have been supportive 9
No, they haven’t been supportive 6
Not Applicable 8
Not answered 2

Main responses from Family and Friends

Making allowances for changes in behaviour 3
Making allowances for diminished ability to contribute to household 3
Assisting with tasks that otherwise I would complete 3
Being able to communicate honestly with family and friends 5
Recognising that I am not completely recovered 6
Providing financial support 3
I have been alienated from my family 1
Some family members think that I am over-reacting and malingering 5
Some friends think that I am over-reacting and malingering 4
Other * 0

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Kia Ora. Sorry for the interruption but if you type your name and email address in the fields provided you'll receive my latest brain tumour scribblings as soon as they roll off the press. What could be better, other than good coffee in the morning, comfortable non-slip gumboots, peace in the Middle East, politicians who don't govern out of self-interest and a cure for all types of diseases, including, but by no means limited to, brain cancer.

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Subscribe to new Brain Tumour Posts

Kia Ora. Sorry for the interruption but if you type your name and email address in the fields provided you'll receive my latest brain tumour scribblings as soon as they roll off the press, so to speak. What could be better, other than good coffee in the morning, comfortable non-slip gumboots, peace in the Middle East, having politicians who don't govern out of self-interest and a cure for all types of diseases, including, but by no means limited to, brain cancer.

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