I had double vision for 16 months, and I had seen many doctors in many different fields before receiving a clival chordoma diagnosis in February 2019. I received my first transsphenoidal gross resection on March 20, 2019. The packing material for the dura slipped after this first surgery, so I received a second surgery on April 4, 2019. This second operation was followed by 37 radiation treatment sessions (74 Gy) in August and September 2019.
I am doing very well now — back to my normal self. I have been doing lots of intercontinental traveling and many exciting physical activities such as hang gliding.
My family and my friends are the best support. My medical team was also very good at taking care of me during my treatment. I have learned that there are many people who lead normal lives for many years after treatment, which made me less fearful of this cancer.
Do not be afraid to ask for help from your medical team and to share anything and everything with your care team in as much detail as possible.