For me, an AYA (adolescent and young adult) cancer advocate for the past 20 years, World Cancer Day conjures up feelings of passion, patience, persistence and perseverance.
Passion for all those AYA cancer awareness organizations and individual advocates around the world who have campaigned to have the voices of the AYA cancer community recognized, heard, acknowledged and sustained – from prevention education, through diagnosis, treatment, short and long term effects, metastic/advanced stages, palliative care, end-of-life and beyond.
Patience as we wait for the science to catch up with patient needs.
Persistence in continuing to improve communication between medical professionals and the AYA cancer patient/caregiver community.
Perseverance in seeking out inventive ways to keep the spotlight on the needs of AYAs with cancer in every country around the world.
I became a young adult cancer advocate in 1997 when my daughter, Sara, was diagnosed with a desmoplastic, small round, blue cell, intra-abdominal tumour. Before her death in 2000, she asked me to distribute her film, Chasing Rainbows – Young Adults Living With Cancer, “across Canada, the USA…and, Mom, if you have time, Europe.” Her request took me to regional and global conferences, session presentations, plenary session screenings, lunch-and-learns and film festivals in all three of those places. From there the international attendees took Sara’s film home with them to screen in countries throughout the world.
I am grateful for the opportunities I have had over these past 20 years. Helping to keep the voice of AYA cancer awareness alive has given me both professional and personal satisfaction.
So, on Saturday, February 4th, I will stand united with those who continue to work daily to understand cancer, to possibly prevent it, and above all to improve the lives of people living with, and dying from it around the world.
Pat Taylor is a producer, writer, director, performer and educator whose credits include documentary films, television specials, plays, musicals, short stories, music videos and major tourist attractions. She is also a mother and parent advocate for young adult cancer patients, and the founder of Chasing Rainbows Young Adult Cancer Advocacy, an initiative dedicated to discovering and distributing multi-media support materials for young adults with cancer, and facilitating young adult voices in the cancer community. Pat has produced two documentary films, Sara’s Story and Chasing Rainbows: Young Adults Living With Cancer (both of which feature young adults ages 19 to 29 “living life while fighting for it!”), and has researched and helped to promote many other film resources produced by and for young adults with cancer. Pat has been a guest speaker, session presenter and young adult cancer resource advocate at conferences across Canada, USA and Europe. (IPOS, APOS, TCT, CAPO, CCS, BCCA, NCONN, Stupid Cancer OMG, Critical Mass, ICCCPO). Pat cared for her own daughter Sara from first diagnosis at age 23 (1997) through recurrence (1999) and end-of-life at age 26 (2000). “Whether you are a family member, friend or health care provider, it is often difficult to know which way to turn, what to say or how or when to say it…when to offer help and when to step back. As a CKN Editor, it is my intent that we share our individual stories, confusions, insights and hindsights so we might help one another not only navigate the complexities of a “road trip” of this nature, but also celebrate with one another the precious moments filled with love and joy that give us the strength to travel along with our loved ones on the journey from beginning to end.”