When I was first diagnosed with NSCLC I was terrified; I was 30 and healthy. I never imagined that I would hear the words “you have lung cancer” uttered to me. I came to my ALK-positive diagnosis two years later, when I discovered I had a recurrence. Prior to finding out I was ALK positive, I was trying to get my affairs in order as I thought I was a goner. Everyone I had known with lung cancer had passed. In truth, I wasn’t ready to go at 32; I had so much more that I wanted out of life. Discovering I was ALK positive felt like winning the lottery. It was a lifeline when I was drowning. It has been over 8 years now, and I have been very lucky to make it to 40 and beyond. I consider myself very fortunate to have a mutation that can be treated. Because of it, I’m able to live a reasonably normal, very good life.
Looking back on the past 10 years, my life is pretty unrecognizable. I went from being a workaholic with no social life, a singleton who kept their eyes on the ground, to the complete opposite. After being diagnosed, it was as if everything in my life had been reframed. I suddenly became acutely aware of what was truly important in my life. I discovered how vibrant life was and how beautiful some of the most mundane things are. I took my eyes off the ground and began to absorb all in life. I pursued the things I wanted to that I was too afraid to strive for before. I stopped holding back. A friend of mine who has since passed, once said, “I want more life to days rather than days to life”. I have never forgotten it, and I live by this philosophy. It has never served me wrong.
I look back at what it was like at the beginning, when I was newly diagnosed, and the fear was all-consuming. I chose to fight with all I had rather than run away or deny my reality. The early days were daunting, and I looked for information wherever I could find it. I questioned and researched to satiate my hunger for knowledge about my disease. I needed to be armed with information. It made it less scary than the unknown. When treatment began, I looked at it as if it were my job. I’d wake up, put my big girl pants on and kick lung cancer’s a$$. When I was hooked up to my infusions or lying in a radiation bed, I willed all my good cells to attack the cancerous ones. I visualized and prayed.
To help me cope, I learned to meditate (it helps), I sought help from psychologists and support groups, I reached out to strangers across the worldwide web (who are now like family to me). I reclaimed my body through my many tattoos. I travelled and began to rebuild my life. As time went on, I crossed new challenges. Scanxiety is real, and it became a very big issue. Side effects of prior infusions and trial drugs presented new hurdles. But through everything, I learned to cross each bridge as it came.
Anne Marie passed away in October 2021. Since her diagnosis in 2009, Anne Marie was a dedicated advocate for those living with lung cancer, and for young adults with cancer.
Many have found inspiration in Anne Marie’s story, and her input to the Younity patient support programme has undoubtedly impacted the lives of countless individuals living with lung cancer. We are extremely grateful to Anne Marie for her contributions to this programme and to the lung cancer community more widely.