When Anya first contacted me, via email, she wasn’t even sure she wanted to tell her story, but she wanted to try. I encouraged her to write it, even if she didn’t want it to be posted. We spent some time, writing back and forth, trying to figure out what the form and purpose of the piece should be. I encouraged her to break it down into three parts: part one telling the story of her husband’s death, part two dealing with the death of her son, and the last part telling her own story. Today we’re posting part three: Anya’s story.
by Anya Humphrey
When Ted was getting his chemo, there was a man in a nearby treatment chair who was in the same situation Fred had been in the year before. We had spoken in the waiting room. He was in the last stages of colon cancer and knew he didn’t have much time left. When his wife went out for coffee, he beckoned me to come over to him, so I did and asked what I could do for him. He looked at me with fear in his eyes and said, “Could you tell me what it’s like at the end?” I now refer to this as my death-changing moment. I was so taken aback and horrified that I couldn’t speak, but I had to find something to say to this frightened man who had no one to ask but me. There is still no one in this cancer centre that treats eight hundred patients a day to whom one can take questions about death. I told him my understanding was that all deaths are different, that he deserved a good answer to his good question, and that perhaps it would be best if he contacted the palliative care team in his area. And hoped there was one. Then I ran out of the chemo suite to the Wellwood office, where they had a storeroom I could sit in for the next hour crying, crying, crying, for him, for Fred, for me, for all of us.
On another day I ran into one of the doctors that had seen Fred on occasion and told him I had been disappointed by some aspects of Fred’s care. He looked at me with great kindness, there in the hallway in the middle of his busy day, and asked, “How do you wish it had been?”
In the face of these two questions, I realized I simply had to speak. So I did. I wrote a letter that led to my becoming a member of the inaugural Patient and Family Advisory Council at Cancer Care Ontario. That has led to many other opportunities to serve at the local, provincial, and national levels, where I continue to push not just for changes to the system, but for ongoing feedback from people who are using it. I have never encountered anyone working in healthcare who was not kind, smart, hard-working, and well-intentioned. But that isn’t enough. If we don’t ask people how it’s going, or how it went, we can imagine that everything is fine when it isn’t. It took me five years before I was ready to speak to the doctor in charge of Fred’s palliative care team, who had no knowledge of what had happened. No one ever heard about it because no one had ever asked. Until recently, no one in Ontario was ever asked in an official way, because people assumed that bereaved families wouldn’t want to be bothered.
That’s the coherent, focused part of me, the part that is determined to make dying a better experience for all of us. But there is another part too, a dark, hidden self that dare not expose itself too much. One death was bad enough, but now that there are two, nobody wants to hear. It’s too much, too hard, who knows what to say? It feels like I have to hide. I feel ashamed. I go a little nutty because it’s too big to contain.
I can’t stand what happened. I can’t understand what happened. I can’t stand not understanding. I don’t have a good understanding (as an elderly lady at church said about a cake that was toppling over). I get labyrithitis and lose my balance. I want to belong to a bewilderment support group where we can skip the facile and patronizing platitudes and admit that we don’t get death.
I give up reading books on grief because not one of them seems honest to me. I switch to trying to learn more about death. I go to Death Café. I watch “Ask a Mortician” on YouTube when I can’t sleep. I want to engage with death in some way so that I might get a grip on it. Or so that it will have less of a grip on me. I want to live a life instead of a death. And meanwhile I live by myself in a family-sized house with the belongings of two dead men that I love, responsible for everything that is left of them. I have traumatic triggers that whack me out of nowhere.
But it helps to tell. And to have someone listen. Something interesting happened a couple of weeks after I finished writing the section about Fred. I have often felt jealous of other widows who feel their husbands present in their lives or in their dreams since that has never happened to me. One night I had an ordinary sort of dream that ended, and then everything changed. I knew I was still asleep, but it felt like I wasn’t dreaming anymore. Fred appeared, and walked up to me with a big smile and we had a wonderful embrace. With my face buried in his neck I could smell him, exactly him, the utterly unique and perfect him. He said something I can’t remember, in the nature of a greeting. I asked him if everything was okay where he is. “Yes,” he said.
As caregiver to both her husband and son through their deaths from cancer, Anya Humphrey witnessed a medical system populated by wonderful people whose good intentions were not enough. So she became a Patient and Family Advisor to the healthcare system. Her focus is on palliative and end of life care, with the goal of providing the patient and family perspective on what matters, how to provide that, and how to determine if it’s happening.