I’m Not Cancer but Cancer is a Part of Me

Elaine you are a very courageous woman and I can only say I am full of admiration.   Just reading your response and subsequent blog is amazing and congratulate you on the way you are handling your life and obviously living it to the full.  No doubt you will leave a legacy.   I too share your concerns that MBC dosen't get much awareness and I do believe that there is an element of "Pink Fatigue" out there.  Not sure if you are considering or have received an invitation to apply but  I am putting my application in today for the BCNA National Summit in 2017 taking place Thursday 16 and Friday 17 March.  If the stars align, perhaps we will have an opportunity to say hi.

I agree we need to get a conversation going about living with MBC to debunk myths about what we as people can do and get powers that be to start listening and make changes.    There are many challenges because our society is not keeping pace with medical technology.    

Medical

Quick access to drugs.  PBS system needs an overhaul.  Currently drugs that demonstrate a clear patient benefit before overall survival data can be made available is not considered. Treatment outcomes such as significantly improved quality of life, or the measurement of improved symptom control should be considered.

Work

Workplace has Workcover for workplace injury, why not integrate people living with chronic illness.   I have been forced to go onto a Disability Pension as I have exhausted my income streams.   This has happened prematurely.    With a growing older population who are being encouraged to work, attitudes and considerations/adjustments for an older workforce need to be addressed.

I would like to see a flexible workforce for people who are living well with cancer who can work  are encouraged to stay working in some capacity rather than eat away at their life savings and ultimately find themselves prematurely on a pension.  

 Pension

I am on a Disability Pension but I have cancer not an impairment that is obvious, therefore Centrelink and Disability Support Pension Employment agencies do not know how to handle someone in my situation who is skilled and not overtly impaired.

I know these are big issues, way beyond my sphere of influence which is why I have aligned myself with BCNA.   I am getting stronger again so intend to start lobbying again in political circles to try and at least start conversations.   I am aware that changes have begun in regard to gaining access to drugs as they have been approved by the Therapeutic Goods Adminstration but they are still not affordable.

Thanks for responding and take care.

Karen C