#Stage4Lifer: Enacting Change with Advocacy for Metastatic Disease
Judit Saunders is a 2016 Hear My Voice: Metastatic Breast Cancer Outreach Volunteer. Judit’s post for #Stage4Lifer describes her journey and thoughts on advocacy for stage 4 breast cancer.
After I was diagnosed with metastatic breast cancer (MBC), I knew sitting around wallowing in my own self-pity wouldn't benefit anyone, including myself. So I started to wonder how I could share my story and possibly change the landscape of this disease. In particular, I realized a real need for advocacy, especially for young women diagnosed with MBC.
As I started researching anything and everything I possibly could about my disease, I quickly realized that there had to be a change in shift in pertinence to our mentality about not only this disease but how we treated it. I also became acutely aware as to how my quality of life seemed to intertwine directly with what I was doing to help others...others also afflicted by this disease and this deep yearning to enact change.
MBC Advocacy has become almost like a calling to me at this point. I was a registered nurse working in pediatrics prior to my metastatic diagnosis. In all senses it was my dream career, and my life was as I had envisioned it to be. I was married and simply going through life with plans to start a family when I received the diagnosis. Sadly, all the dreams that I assumed would materialize into reality, such as having children, abruptly came to a halt and I had to accept the very fact that all the sure things in my life would all become a big, fat question mark. I think this self-realization as to who I always knew I would be suddenly garnered a complete change of shift.
I started blogging about my experience, and then I developed a public Facebook page, which then led me to create a public Twitter profile, which helped me to network with others. Suddenly, I felt like I had a purpose again. I was the girl who didn't even have Facebook prior to this diagnosis! Now I was suddenly using FB as a tool to both educate others, while also telling my story in hopes of helping other young women in a similar situation to see that it was still possible to be a productive member of society, and that there was still a life after a metastatic diagnosis.
Advocacy work provided me with opportunities that I never would have gotten to experience had I not dove into this world. I have had the opportunity to become a Living Beyond Breast Cancer Hear My Voice Advocate, which took me to Philadelphia for LBBC’s MBC conference and allowed me to meet other MBC advocates, which further fueled my fire to help.
The thing with this type of advocacy is it empowers patients, but at the same time it rips your heart out with emotion. This is because all the amazingly strong men and women I met with MBC were all essentially dying. Everyone at this conference was living on limited time with this proverbial clock ticking away. We are all driven to help simply because it suddenly becomes so much more than about ourselves. It becomes about all our friends. The very people we know and share our lives with. These are the people that I would desperately love to pluck off this terminal cancer ship, and place on solid ground. Advocacy in the metastatic setting is the only way I can hope for a future. If I don't fight for my life, and the lives for those I care for deeply, then who will?
From Philadelphia, advocacy took me to Toronto, where I got the opportunity to further advocate for medicinal cannabis thanks to a great organization geared towards young women with MBC: Rethink Breast Cancer. This was yet another topic that was never on my radar prior to MBC. I had never even tried cannabis in my life and yet there I was speaking passionately, and publicly, about a topic that I felt had merits for other individuals diagnosed with cancer. That was my driving force. If it had such a positive impact on my life, then I felt it was my duty to inform others of this so that they could legally access cannabis to help them through their cancer experience.
So there I was speaking in front of others, on a live Facebook feed that generated over 20,000 views! Advocating passionately had allowed me to do things that I never would have done before.
Advocating has its moments of elation, especially when you know you've made a positive impact, but it also consumes you. This is deeply personal and I have invested not only my time, the single most valued aspect of my life, but I have done this because we have a deadline. A deadline that looms heavily over all of us. The clock is ticking, and every year over 45,000 men and women die in North America alone from MBC. This is a pandemic that will not change unless we stand up, advocate, and become those persistent, inpatient, and kindly demanding voices.
I do this wholeheartedly because, without a cure, the death rate will continue to climb, and our voices will go from screams to muffled sounds until we are no longer heard. I refuse to sit back and allow our voices to become silenced. We are here, and we demand to be heard.
You’ve heard Judit’s voice. Raise yours. Join #Stage4Lifer and share your MBC experience on Twitter and Instagram.
Judit Saunders was diagnosed with locally advanced breast cancer at the age of 26. In 2014, age the age of 28, she learned she had metastatic breast cancer. She’s now 30 with mets to the bones and brain. Judit is a registered nurse (on disability now, but once a nurse always a nurse), married to the most supportive hubby she could ask for, lover of HOT climates, beaches and travel! She loves painting, pottery, blogging, optimism and focusing on research and everything/anything MBC-related.