I first met Drew at Stupid Cancer’s 2014 OMG Summit in Vegas and then again at various conferences over the following four years. I was struck by his intense curiosity and willingness to learn everything he possibly could about the AYA cancer community, in which he included not only survivors, but caregivers too. Over the years we have often chatted about the ever-evolving language surrounding the experience of cancer, and the joys and challenges of communicating within it. As a pithy way of sharing those conversations with a wider readership, I have asked Drew to create a Top 10 List: What Not to Say To Someone Living With Cancer. Have at it, Drew!
– Pat Taylor, CKN Editor
by Drew Bolognini, Caregiver/Advocate/Videographer/Editor
To begin with, let’s get one thing straight: I’ve been as guilty as the next guy of saying the wrong thing at the wrong time. I still make mistakes. We all do, but I believe we mean well, really. I hope this list will make us all smarter. Well, the rest of you readers anyway. I’m not sure anything can be done about me.
Have you ever thought about how it would feel to have your life suddenly turned upside down? Everything is going along as planned – maybe not perfect, but fairly “normal” – when suddenly your world crashes around you as your doctor tells you your child has cancer. Parenting a child with cancer is not an easy thing to talk or write about, but Lou Greenzweig generously allows us a peek into his world of parenting his son Matthew, at the time a young adult, through his cancer diagnosis and treatment. Through Lou’s detailed account of a year in his life as a caregiver, we can hear the love and dedication he felt for his son come through loud and clear. Thank you, Lou, for sharing a few of the things you learned along the way with us.
Our Caregiver Section Editor, Pat Taylor, met Lou Greenzweig at the OMG Cancer Summit in Las Vegas earlier this year. Pat was delighted when Lou agreed to write about his experiences with his son, Matthew Zachary, founder of Stupid Cancer.org, for the CKN Caregiver Section. ~Karen Irwin
Matthew Zachary, Founder Stupid Cancer, Pat Taylor, CKN Editor, Jonny Imerman, Founder Imerman Angels at the Stupid Cancer Summit 2013
I had just arrived home from six days at the OMG2013 Cancer Summit for Young Adults in Las Vegas, when I received a frantic call from my daughter Jenny.
“Mom, Luka needs to go to the ER for stitches, can you come to stay with the boys?”
45 looong minutes later I had collected Luka’s brothers from the neighbours and was preparing them for bed. Kai, the youngest, aged 3, his brow creased with concern, told me what had happened in vivid detail. Luka had landed wrong on the jungle gym, hitting both legs against the metal steps and slicing open his shins. Red blood and white stuff oozed out of the cuts. It was scary.