Brenda Denzler is a writer and editor living in North Carolina. She received her doctorate from Duke University and worked as an editor at UNC-Chapel Hill before she was diagnosed with inflammatory breast cancer in 2009. Since then, she has devoted a great deal of her time and energy to understanding and writing about cancer, cancer treatment and the impact of pre-existing PTSD on the ability of doctors to give and patients to receive medical treatment.
The relationship that develops between a cancer patient and their oncology team is a most intimate thing.
I’m a big fan of the now-defunct television series “The Big Bang Theory.” The show’s premise involves nerdy scientists eventually finding love. Against all odds, three out of the four (male) main characters managed to find, woo, and marry women.
Only poor Raj, a sweet Indian immigrant, failed to find the woman of his dreams. So, he decided to accept an arranged marriage. After a few weeks of tentative courtship, he and Anu seemed to hit it off, so they set a marriage date and continued to get to know each other.
Then they had their first big fight.
“You’ll just have to trust me!” Anu said angrily, when she found out that Raj had been spying on her with a security surveillance camera he had installed for her.
“How can I trust you?” Raj shouted back, his voice filled with anxiety. “I don’t even know you!”
For some cancer patients, that’s what happens when you’re diagnosed. You’re paired up with a person you don’t even know but whom you must implicitly trust. Most of the time it seems to work out. You get to know each other better, and it’s OK. But sometimes things wind up just like Raj and Anu.
If you’re a patient in a big hospital system, as I was, you’re assigned to an oncologist who specializes in your kind of cancer. You may or may not have much say in choosing your doctor.In my case, I was outright denied that opportunity when I asked for it. I was told other doctors in the clinic weren’t taking on new patients. There would be no changing who I had been assigned to.
I accepted this situation, though not with complete pleasure. It was, if you will, an arranged “medical marriage” between this newly hired doctor who needed to fill his patient roster and a newly diagnosed and terrified patient. I felt disrespected by the hospital and coerced by the cancer — forced by the exigencies of my situation to take whatever (or whoever) I could find and be happy to have treatment.
As the weeks wore on, my doctor, his nurses, and I had our misunderstandings — several of them. Despite my obvious need, I went into cancer treatment just about as terrified of them and what they were proposing to do to me in the name of medicine as I was terrified of the cancer itself. They couldn’t understand this. Their reaction was invariably something like Anu’s: “You’re going to have to trust us.” My reaction to that was invariably something like Raj’s: “Trust you? I don’t even know you!” I also couldn’t help but think, “And you sure don’t know me. You just know my diagnosis!”
If, like me, you’ve had a traumatic childhood medical history that has left you with medical PTSD — viscerally terrified and morbidly distrustful of doctors and hospitals — you’ll understand. If, like me, you had a lifelong intention to reject conventional treatment and use only all-natural, holistic cures if you ever got cancer, you’ll understand. Just my walking into the hospital and agreeing to conventional treatment was an amazingly huge act of trust, whether my doctors knew it or not. And basically, they didn’t. They thought they did … but they didn’t. Not really. I could tell by the way they acted and the things they said.
There are a few relationships in life that are extremely intimate, where you open yourself up to being exceptionally vulnerable. Marriage is a biggie. So is asking someone to save your life when you are sure to die otherwise. Especially when the request entails asking that person into your life in a way that aggressively violates your lifelong sense of who you are and what you believe. My relationship with my oncologist and nurses was more intimate, to me, than sex. In letting — indeed, needing — them to practice their medicine upon me, I was forcibly opening myself up to them in physical, psychological, and even spiritual ways that I could never have imagined before my diagnosis. “Difficult” doesn’t begin to describe how hard this was.
My team never understood the identity-destroying depth of this self-violation I was allowing. For them, it was just a simple — and relatively superficial — matter of “trust” between us. But it was so much more than that. Thus, like Raj and Anu, who broke off their engagement, after months of mutual discontent I asked for (and by that time could get) a new oncologist. The arranged marriage hadn’t worked out. But it might have been saved, if only …
Medical school prepares a person to take care of bodies in all sorts of states of disrepair due to illness or injury. Where it does a poor job, however, is in preparing people to take care of any part of the patient that exists outside of that. The one medical sub-discipline that does focus on the non-physical, psychiatry, is in my opinion too often treated as if it were a babysitter: tasked with dealing with the sometimes thorny bits of the patient’s present and past reality so as to keep those untidy, unruly things out of the oncology wards.
But cancer is a gnarly beast. It messes with your head. If you harbor a traumatic history, a cancer diagnosis can really mess you up. And if you harbor, in particular, a traumatic history involving medical treatment, the situation can quickly get complicated. Rather than passing off such patients to the psychiatrist and wiping their hands of that part of patient care as if it were more or less beside the point of their own work, oncologists need to be joined at the hip to psychiatry, seeing it as a Sherpa that can help them form a truly healing relationship with their patients. Because the past is present, always and in all places. Even in oncology wards.
Cancer is a journey into the peaks and valleys of life that is worthy of a skilled guide. Oncologists, as a part of their profession, have chosen to make this sacred journey through the highs and lows of having cancer every day. Their patients are forced to make it. For at least a time. In one way or another —however they can. The medical marriage within which that journey unfolds is a most intimate thing. Small wonder that a guide can be needed to help it work out well to support and preserve the tenuous bonds of trust between a terrified patient and a busy oncologist.
Trust is a medicine with powers to heal. The best answer to the patient’s, “Trust you? I don’t even know you!” and its corollary, “You don’t know me, either!” is increasing the knowing. For some patients, that’s going to have to be on a deeper level than an oncologist might ever have had to go. It will take time they don’t have, emotional energy they probably can’t spare, and lead them into landscapes of sickness and health they’ve probably never even imagined. But it is vital to the medical care that they’re trying to provide, and the patient is trying hard to accept. It is vital to the creation of trust, which is, at its heart, a most intimate thing.