THANK YOU, BREAST CANCER NETWORK AUSTRALIA NETWORK

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Karen_C
Karen_C Member Posts: 93

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.

Comments

  • wendy55
    wendy55 Member Posts: 774
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    An amazing tribute, well written as always Karen,thank you for being so passionate about what you do,I feel very grateful 
    that I have you in my corner of the metastatic breast cancer world, will be thinking of everyone on August the 12th.
    wendy55
  • jennyss
    jennyss Member Posts: 1,980
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    Dear @Karen_C , thank you for sharing your experience of, and involvement with BCNA. Great work on the Kadcyla! Thank you for your commitment which helps us all. Best wishes from jennyss in Western NSW
  • kmakm
    kmakm Member Posts: 7,974
    edited April 2018
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    A magnificent tribute from a clearly magnificent woman. Thank you.
  • MoiraC
    MoiraC Member Posts: 173
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    Dear @Karen_C - great to hear your story. Thanks so much for all your advocacy and hard work for those on the journey and those who are just getting going on this journey
  • arpie
    arpie Member Posts: 7,742
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    Yep - what an amazing organisation BCNA is - especially for the support for all of us who have or are undergoing cancer treatment - no matter how large or small - to be able to connect with people who 'know' what you are going thru, is just invaluable!

    BCNA holds a lot of 'sway' - and can help influence decisions made at the highest levels by State & Federal Govs ...... just awesome!!

    Well done, BCNA