In the cancer community, there are many people keen to talk about finding a cure, or about the experience of living with and/or surviving cancer. We try so hard to stay positive that we end up avoiding any discussion of death and loss…leaving those with metastatic and advanced cancer feeling deserted and isolated. At CKN we are looking to start publishing more on death, dying and “living while you’re dying”. We want to create a platform where people are free to explore the mysteries, fears and hopes surrounding death with the same enthusiasm and curiosity that we bring to all other aspects of life.
We celebrate the birthing process from conception to delivery with open doors, bright lights and cheering as if we have done something “right”. Yet, as soon as someone begins the dying process we close doors, lower the lights and speak in whispers as if they have done something “wrong”. I remember my daughter Sara feeling hurt and frustrated that the media so often spoke of someone’s death from cancer as having “lost the battle”, as if they had somehow failed. To die is to complete the cycle of life. It’s a fundamental and universal part of the human experience.
As the mother of a daughter who died of cancer at age 26, I want to celebrate ALL of her too-short life. I find it increasingly impossible to do that without acknowledging her life’s end and the impact it had on her family and friends. I feel that staying silent casts an unwanted, uncalled-for cloak of darkness over the last days before she passed from this earth; as though how she and all of us who were close to her handled this part of her life is being judged as unworthy of recognition and respect. I want to change that. I want to give us all permission to explore dying with the same spirit and passion that Sara brought to her short life.
Through this new CKN series, we invite cancer patients, caregivers, friends and family, and medical staff to share their stories about living while dying, their fears, hopes and their dreams. Let’s honour those who have gone before us by talking openly about their experiences and our own. Let’s talk about advance directives, bucket lists, living with metastatic cancer, and dying with dignity. Our goal is to enable our readers who are in this situation to educate themselves with the intention of gaining some control over their death and dying. Through shared stories, experiences and trust we will breathe life into the story of dying – bringing us out of the shadows of unease into the light of ease.
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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 the CKN Caregiver Section 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.”