Photo by Tertia van Rensburg on Unsplash
“I have good news for you today. The MRI results are clear. The mass is benign.”
The phone call should have brought enormous relief. I waited to feel something, but the fugue state still held me in its grip. I was so enormously tired, I couldn’t drum up anything other than a flat “That’s great.” My lack of enthusiasm was startling even to myself.
Puzzled, the surgeon repeated himself, not sure that I had understood him. “You are in remission. This should make you very happy.” Something stirred beneath the fog inside me. Why was this guy telling me what to feel?
“Yes, I get that. This is good news, yes.” I paused, trying to make sense of my own feelings and thoughts. “I guess I just don’t understand how this process got to be so messy and drawn out in the first place,” I pushed back a bit against his disappointment in my lack of wonder.
“You’re still upset? Most people who get news like this are extremely happy, not angry,” he chided me. He launched into a defence of his colleagues and the hospital, telling me it was wildly unfair to blame the radiologist for failing to do a biopsy when she was unable to find anything to biopsy.
The fog cleared. A wave of renewed anger washed over me. She couldn’t find anything? That’s what she told him? “You see, the biopsy isn’t necessary, because the tissue moves, see,” I could still hear her voice both describing what she’d found, and then blithely explaining away her decision to disregard that same discovery.
“I’m sorry,” I interrupted. “Weren’t you the guy who only moments before told me that my family history hangs like a cloud over these results? Were you not the very same person who told me that a BIOPSY is the best way to be sure?” Beneath my anger lay a feeling of betrayal. Why was my doctor putting his loyalty to his colleague above his duty to me his patient?
“Now you’re making me angry,” he said. “I can’t spend another moment arguing with you about this, as I have patients awaiting me who need my help.” He hung up, and I tried to make sense of my reaction. What was going on? Why wasn’t I elated?
I was relieved, to be sure. But not ecstatic. More exhausted and still upset at the same time. It was like I was stuck somewhere, unable to move past the experiences of the last 6 weeks, and just settle into gleeful gratitude. I wanted to. But I was simply too numb.
It would take a good many months for me to understand fully the impact of this conflict upon both my physical and my mental health. In essence, I had been re-traumatized all over again: a pandora’s box had been opened by both the wonky test results, and the ensuing indifference of my doctors to how the sloppy response affected me. The culprit was central sensitization – my already fragile nervous system was pushed to the breaking point by this long, drawn out process. This was not uncommon, as every cancer patient dealing with unclear test results faces similar fears. What I failed to grasp at the time was how, as a chronic pain patient, my brain interpreted these experiences more intensely. Pain and stress had lit the emotion centres in my brain to such a degree, for so long now, that I was unable to shift gears quickly. Intellectually, I knew that the news was amazing. But the rest of my being struggled to overcome the residue of the amplified anger and exhaustion. This was Pandora’s box: the wonderful news was tainted by my central nervous system’s struggle with these injuries and my doctors’ obliviousness to this reality.
My strange response was unacceptable to my doctors. This became clear to me when I met with my oncologist the next day for a follow up appointment.
She wasted no time as she entered the exam room. “Did the surgeon’s office call you?” I nodded. The good doctor seemed puzzled by my lack of outward enthusiasm. She pushed, digging to discover why I wasn’t doing kart wheels. “Oh, I get it,” she said. “You’re angry about the neuropathy and being disabled. What happened to you was unfair and not an even trade. I get it. That’s what this is about. ”
“No,” I countered. “I’m not angry about that. Chemotherapy saved my life. I don’t blame you for this,” I gestured to my body, which was beginning to ache, as if in protest against the turn in the conversation.
“Then what is this about, exactly?” I tried, clumsily, to help her connect the dots. I needed to leave here totally convinced that I was in remission, because the CIPN would flare again. While I was part of the cancer outpatient program, each time it had, the hospital had rushed me through a series of tests to ensure the cancer had not returned. It was hard to tell the difference between severe CIPN symptoms and relapse symptoms. When I faced the next inevitable flare, I simply did not need to deal with the added fear that maybe this test was wrong, and the cancer was back, because that would only make the pain worse –
“Stop talking in circles,” she barked. “What is it that you need? A biopsy? I can schedule one for you if you really insist that a THIRD radiologist looks at this mass. Do you want to do more follow up? Tell me, what will it take to convince you that you are in remission?” Her words, tinged with frustration, hung in the air between us. I said nothing, and then she rushed to fill in the silence:
“Do you need me to put you in touch with the social worker?” one eyebrow was arched. There. Obviously, in her opinion, my incoherence and inexplicable anger had to do with my mental health. It had nothing to do whatsoever with either the clumsiness of the botched test, or the doctors’ obvious disinterest in the increased pain they’d unintentionally inflicted upon me. There were clear roles, here: the doctors, whose laser-like foci on curing cancer was their only job. As a patient, my role was to be compliant, cheery at all times, and especially jubilant at good test results. I was off script, evidently, and needed help getting back on track. That was not the medical doctors’ job; chronic pain was a mystery to them, outside their purview, something someone else – like a mere social worker – should address.
At the time, I did not have the words to either help her understand the physiological role that central sensitization was playing in my perceptions and behaviour. Eventually, I would pen a very long letter to her, as I exited the outpatient program at long lost.
But not before a disastrous experience with the patient relations department, where my attempts to address my concerns revealed the extent to which I, as a mere patient, was expected to just be quiet, get over it, and then go away – but not before thanking each one of them for the fine job they’d done.