THANK YOU, BREAST CANCER NETWORK AUSTRALIA NETWORK

T

My name is Karen Cowley and I have been living with Advanced Breast Cancer for 12 years.  I am also a very proud BCNA Consumer Representative.  On Thursday 5th April, 2018 I was privileged to be invited to a very auspicious occasion at Victorian Government House hosted by The Honourable Linda Dessau AC to mark the 20th Anniversary of Breast Cancer Network Australia. 

I came away from this function just wanting to write down what Breast Cancer Australia Network means to me.

Today I see a very modern organisation that has become the envy of many health organisations as it’s been the trail blazer not only for breast cancer survivors in Australia but by example, is the benchmark on what can be achieved by charity organisations whose existence is to give a voice through advocacy and community liaison for our most vulnerable people suffering from chronic or terminal disease.  BCNA is truly the peak organisation for Australians affected by breast cancer by providing  the very best support, information, treatment and care.

Personally, I found out about BCNA by receiving “My Journey Kit” following my surgery in 2006.  This was an invaluable practical and informative tool.  I thought “wow” a lot of research and thought has gone into this resource.   From then on, I was hooked, BCNA has not only provided me with support and information, but what is impressive, is that the “heart” of the organisation is its members who are encouraged to play a role.  For me this has allowed me to express my challenges and triumphs without judgement or pity; pivotal in my mental health.  Today, a fantastic BCNA initiative is the Online Community which allows members to connect and help and support each other and is also a portal for the BCNA organisation to keep up with member issues.    From time to time I have become quite the blogger for this forum especially in the Metastatic Cancer category. Everyone is gracious and always respectful of everyone’s opinions. 

My personal involvement with BCNA started in 2012.   What got me started with BCNA was an Information Forum in 2012 which covered a range of topics, but for me I was passionate about new technologies.  Living with advanced breast cancer you are always aware of your mortality.   Prof. Fran Boyle talked about T-DM1 (Kadcyla) technology.   I thought it would be treatment for me so took this information back to discuss with my Oncologist.   

I was running out of options,  so I became very active in supporting BCNA as a Consumer Representative to get Kadcyla approved by the TGA and then onto the PBS.  This process took 4 years, but we got there.   It was a privilege to have the opportunity availed to me by BCNA as their Consumer Representative to have the opportunity to address a Senate Committee looking into “Availability of New, Innovative and Specialist Cancer Drugs in Australia” in March 2015.  Today BCNA are advocating again to get CDK Inhibitors Ribociclib and Palbocicib on the PBS.

BCNA have valued my skills and have given me much needed self-esteem, and in turn BCNA have and continue to involve me in many of their initiatives. 

BCNA is a dynamic organisation constantly identifying ways they can affect improving outcomes for people diagnosed with breast cancer.   

You never know what curve balls life is going to throw at you, and it's how you deal with them that defines who you are. For now, I am living with cancer. It is my hope that we obliterate it, but I am not wasting time worrying about it.  Anyone that has cancer knows that life goes on and it’s up to you to go with it.  I find it very comforting to know that I am not alone and know that I can rely on BCNA to support me.  Thank you.

As part of the 20th Anniversary BCNA “Field of Women” Stand with Me at the “G” on 12th August.  My family and I will be there.    What a wonderful way to celebrate this fantastic milestone for BCNA, an organisation that has my interests and needs at heart.