Last Wednesday the butterflies of nerves were beginning to take up residence in my stomach. I was vaguely calm on the outside but inside there was a magical sanctuary of colour being made all on it’s own.
I had been invited to speak at the Melanoma Patients Australia Report Launch on Advanced Melanoma – The Real Cost of Australia’s National Cancer at the Australian Parliament House in Canberra by my amazing oncologist. First off two things scared me… one; Parliament House the building of POWER where all decisions are made for our fair country Australia… and two; speaking to such an esteemed audience of politicians, medical specialists, drug representatives and awareness advocates.
Speaking has always been a hurdle in my life! I’m the first to admit that my mind runs a million miles an hour and my voice can’t keep up resulting in a lot of tongue ties, stutters and funny outbursts that keep me entertained and laughing at myself but may leave some very confused! I remember the days when I was at high school and we had the joy of presenting oral assignments. Now I am not going to lie… I was really good at school, but damn when it came to oral assignments that A/B result usually took me right down to a C [enter doom doom music]. There came a time in my English class of Grades 11 and 12 where I began raising my vocal bar; I stood into a Prefect role and as with all good things courage and confidence followed suit (small scale Nakeds… don’t start thinking I joined the Debate team, this is not America haha). Then as I got older the public speaking thing waned… there was the occasional social speech, usually accompanied by my old dear friend Moet; and then as I began to take on more responsibility at work the requirement to teach, deliver and lead meetings saw that shaky introverted voice of mine get a tiny ounce amplification. When my Naked Event came around in April of this year, it put me in a position where I had to undertake my first ‘real’ public speaking opportunity. Those 120 friendly faces went easy on me and allowed me to share my very real story with eyes of encouragement and smiles of support! The majority of them were my friends, my colleagues and my loved ones! Now on this second attempt of public speaking my audience were complete strangers (except old Blonde Ned Kelly aka Ant my supportive fiancé!) and my speaking fear became quite real; I think I put a level of pressure on myself because I knew it was for others that I spoke as well.
Straight off the bat, the lovely Deborah O’Neill, Senator for New South Wales invited me to speak first to a room of about 50 guests. “Oh crap” ran through my mind instantly and then I was up there, staring back at a familiar site of faces. Faces though I may have not known but they too had eyes of encouragement and smiles of support. I asked them politely to close their eyes, to take a deep breath and then another breath; and in that moment I connected with them by asking them to reflect and appreciate the importance of breath to a cancer patient like myself, and how this simple yet beautiful act is a precious gift as well as our biggest ally on the journey through stress management when facing melanoma. As they opened their eyes I knew that I was supported.
I told them my story, the history of my diagnosis and where I am at presently with my treatment of MSD’s drug, Keytruda. I stumbled a couple of times; when a voiceover ran through the loud speaker and I completely lost my train of thought and then when Clive Palmer walked in and took a seat; a face known to all and I thought at that moment… “hold it together Kath!”.
I shared the very real hurdles that one faces when diagnosed with Advanced Melanoma, not only the impacts financially and emotionally for the patient but the very real impacts that this disease has on family, friends and yes, even the government.
One of my statements that I know made a big impact on the audience was the fact that I announced that I am okay with dying, BUT being aware that your own death is looming is just not cool because the resulting impacts of guilt and emotions are felt while you are still alive. Grieving for your own death is taken to a level that is sometimes out of your mental control.
I knew my time was well past its allowance; and as all my friends know when I start I can’t shut up, hahahaha! The audience needed to understand the steps that I had taken to get where I am today, including my positive mind-shifts and healthy lifestyle and to really understand that had I been diagnosed at an advanced stage when I was initially treated for my primary over 8 years ago in London… the very true reality is… that I may not have had the honour to stand in front of them and share my story. My melanoma, like many Stage IV patients, was progressing at a very rapid pace, it wasn’t until I was granted the timely opportunity of accessing compassionate grounds immunotherapy treatment that I have begun to see some promising tumor reduction results. For me, I wanted the audience to be aware that these treatments have only really been given mainstream exposure within the last three years and where Advanced Melanoma was (and very much still is) a black hole for treatment options; we are now beginning to see some huge developments within clinical trials that make the possibility of life extension for patients like myself a very real reality with minor side affects.
When I finished my speech relief flooded over me. I did however take the opportunity to soak in the faces of the audience and in that moment I felt very ALIVE and very PROUD.
Professor McArthur; Chair, Melanoma and Skin Service and Co-Head, Cancer Therapeutics Program at the Peter Mac Centre followed providing a passionate and real insight into the affects this disease has on mortality in Australia while leaving us with hope on the new developments being made through emerging treatments and research; and Tilly Ryan, CEO of Melanoma Patients Australia brought home the very real need for understanding and support to make these treatment options more readily available to melanoma patients within Australia.
Please take a moment and read the report here. You may not be affected by melanoma yourself but there is a very real chance that in your lifetime someone very dear to you may be. It is for that time that you need to understand the impacts, the implications and the very real cost that this disease has. Melanoma through sun exposure can be preventable at an early stage. Please be aware and read this report.
For me, I walked away from my time at Parliament House on a high. I had just met some of the most amazing figures in melanoma advocacy from Melanoma Patients Australia and Melanoma Institute Australia; I met the amazing drug representatives from MSD that have made the very real possibility of life extension for me a hope on the horizon; I met the specialists who dedicate their lives to researching and helping melanoma patients across Australia, who give up much of their own time with family and loved ones because they are so driven and emotionally invested to finding hopeful results for this disease; and I met amazing politicians that heard my story, heard Professor McArthur’s story and Tilly Ryan’s story and have it in their power to make the changes necessary for treatment access.
Last Wednesday I found my VOICE!
A voice amongst many who fight this battle day-in and day-out, a voice for the many people who have unfortunately lost their battle with this terrible disease, a voice for the family and friends affected by this disease, a voice for unfortunately the inevitable realism of patients to come… AND a voice to be heard by the decision makers of our country!!! So even though it was my story I was sharing… it was for US that I was speaking!!!
No matter how little or loud your voice is, make sure that the authenticity of your voice is one that is truly heard because you will be surprised… there are people who are listening!
With love, light and finding a voice xx