June 30, 2023
I was recently given a list of “get to know you” questions at a staff event. As I read through them responding to whether I was a cat or dog person or how I take my coffee nothing could have prepared me for my reaction to this one.
If you could go back in time ten years, what would you say to yourself?
My eyes filled up with tears and the voice in my head said…
I’d say get on the plane so she won’t be alone.
I remember the conversations we had leading up to Adrienne going in to hear the results of the biopsy done on the suspicious lump she had found in her left breast. She was SO sure, because all the professionals she dealt with along the way were SO confident that it was something benign, that there may have been a little, “hmmmm” niggling in the back of her mind but not enough to actually make her afraid. We are very connected emotionally and if fear had been there I would have picked up on that in our many voice and video chats and I would have acted on it. Had fear been there I would have been able to prepare my own support system for the possibility so that when I heard the news I would had a place to go to process. Had fear been there I would have been sitting in the chair beside her, holding her hand as we heard the words together, instead of carrying for the rest of my life the knowledge that the first thought she had was, “How am I going to tell my Mom?”
I don’t blame the medical system for not preparing her better. For many of the nurses, doctors and technicians who worked on her case, it was the first time they had experienced someone so young with no family history of breast cancer ending up with the diagnosis. I think not casting doubt when there may be some can be both a manifestation of “first do no harm” and a self-protective mechanism because, honestly, who wants to think anyone like my daughter will have to face what she faced. I can’t imagine what it’s like to give heartbreaking, life-changing news and watch the shock and despair on the faces of the unlucky ones whose cells have chosen the dark side, so I understand the waiting-until-the-results-come-in mentality.
When people are diagnosed with cancer they are put on a tilt-a-whirl that spins them through multiple appointments with various people who will be involved in their treatment and all of them require decisions. Important decisions. Timely decisions. Potentially life and death decisions. And while they are in the fury of this storm, they are trying to share with their loved ones and prepare workplaces and figure out how the bills are going to get paid. They are usually diving down the online rabbit hole of survival statistics and side effects and patient experience stories. They are deer in the headlights, standing in the middle of the road wondering what is actually happening right now.
And my girl did too much of that alone.
Cancer testing is like walking up a staircase, and the higher up you go the more likely it is that the beast will be upon you. I think that when suspicion gets to the biopsy stage the system needs to open the “What if?” door. Not to drag people through it who aren’t ready, but to allow those who are to ask some of the questions whose answers may allow them to prepare what they can in advance. Being able to ask questions and discuss concerns can allow research to be done before the hammer falls and in a supportive way without spiralling. While Alexa and Siri may have a lot of answers, “Does my company’s short-term disability insurance cover cancer treatment?” probably isn’t one of them.
There is a lot of talk about respecting patients’ rights. Let’s start respecting their self-awareness too and let them decide how and when they want to start exploring the possibility that a few words will change their lives forever. If you’re sitting on the other side of the desk it might make you uncomfortable, but your discomfort will be nothing like what she felt as she was driving away from the office in complete shock because they had all told her she was much too young and they were all very wrong.
Get on the plane so she won’t be alone. If only…
Mother…Grandmother…Librarian…Military Spouse…Caregiver…Family Life Educator…take your pick! Debbie Legault was born in British Columbia, Canada to a former RCAF airman father and a Scottish War Bride mother and has lived in other Canadian provinces, Germany and California. She has been married for 36 years to a Canadian Air Force Veteran and credits him with filling her life with adventure. When Debbie Legault’s children look at family photos they often comment on how many different hairstyles she has had and that pretty much is her story, that her life has taken as many turns and led her down as many paths as her hair has changed! Her latest role is as the author of Mom…It’s Cancer, the story of supporting her 27-year-old daughter, Adrienne, as they experienced breast cancer diagnosis and treatment.