“Incurable and Difficult to Manage”

And here am I, budding

among the ruins,

with only sorrow to bite on, 

as if weeping were a seed and I,

the earth’s only furrow.”

– Pablo Neruda, “Lightless Suburb”

I wasn’t sure I was hearing her correctly. My oncologist reviewed my file, tut-tutting at the ER visit and the refusal to provide any pain relief on the spot. (She, at least, did not seem concerned about the use of cannabis). It seemed to me that, of all the doctors managing my treatment, this one really understood how terribly challenging the daily pain had become.

I’d learned that not all doctors are created equally when it came to listening to my concerns, or responding even mildly appropriately to my chronic pain and ensuing complaints. There was, for example, the radiation oncologist who was completely unsympathetic to me. I’d just completed chemotherapy, and was nearly finished with the radiation therapy. But the CIPN was newly raging in my system. Standing up caused such pain in my heels that it took my breath away. Walking was torture, and I moved like an aged wench, gripping the hallway railings as if my life depended upon it. Yet none of the staff at the hospital seemed concerned. When she asked a rudimentary question about the pain I was in, words failed me. I broke down in tears.

Her response was a sharp reprimand: “My God! It’s like you are an entirely different person today. Pull yourself together!” I did, wiping my nose on my sleeve like an chastened child in the face of open disdain. A few minutes later, she discovered I was a secondary school vice principal. Her interest piqued, she asked for my help in locating a tutor for her wayward son, whose math marks were not high enough to get him into the university program she desired. Inwardly, I chafed at her demand that I give her assistance in this personal issue, when only moments before she flatly refused to help me with a pressing medical concern. But I smiled at her, providing her with names and contact numbers within the school board. Over time, I became very practiced at hiding my pain in the face of detached and cold medical staff as an act of self-preservation.

sydney-sims-519706-unsplash.jpg

Photo by Sydney Sims on Unsplash

At least the current oncologist was slightly more empathetic. Throughout the years of follow up, she listened, nodded her head, and then repeated the same advice: Be patient. Your nerves will heal themselves with time. Very few women develop permanent nerve damage.

But today marked a shift in direction: after tracking me for 2.5 years, my oncologist declared the condition of CIPN as “likely permanent.” She advised me that the cancer centre had nothing to offer me except to monitor for relapse. “If you were dying,” she explained, “I could provide you with access to a new class of medications that would better control the pain you are experiencing.” But I wasn’t dying. I had survived cancer, albeit at a steep cost to my body. Now, despite years of reassurances to the contrary, I was that rare patient who had developed the “long term side effect” of CIPN, which was “permanent, incurable, and difficult to manage.”

I blinked at her as she advised me to find a way to live with my body that did not aggravate it. “See you in six months!” she chirped as she left the examination room, cheerfully waving goodbye.

In a daze, I wandered out into the sunshine and limped to my car. An enormous new chasm had opened up inside me. My body had rejected the only pain management tools available as a treatment option.  I wasn’t sure yet if the CBD oil would be enough to tamp down the pain over the coming years. And now my oncologist had just dismissed any hope of recovery.

Who, I wondered, was going to help me find my way back to my life?

2 thoughts on ““Incurable and Difficult to Manage”

  1. Funny. I read the title and wondered if that was you rather than the CIPN. I don’t mean that as a slight on who you are. It is so appropriate looking at the way some in the medical profession look at you You can see the difference in the people who got into the field to actually care for people compared to those who did it for money or prestige or are just so jaded they no longer care.

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    1. You can ask my hubby about the many days on this journey where I have been “difficult to manage” LOL! My theory is that most doctors are compassionate human beings who care, but are overworked, in a hurry, and they see far far too much. There are few incentives for taking time to really listen, to tinker, to problem solve. Some I think become cold as an act of self-preservation, especially when the patient before them is in enormous pain and there is no real resolution. Our system tends to acute injuries and illnesses very very well. It’s the chronic pain patients that don’t fit into our current model. So it’s hard for doctors and patients, I think.

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