Two weeks ago I sat with my hematology team to talk about two new problems: trouble swallowing and weight gain I could not explain. The hematologist ordered chest and abdominal CT scans and a referral to a gastroenterologist, who would in turn order an endoscopy.

This week I returned for a different reason. A rash had spread across my upper torso, the same angry patches I remembered from when graft-versus-host disease first arrived, and I recognized it the way you recognize an unwelcome guest at the door.

The blood work drawn that morning showed elevated eosinophils. Taken together with the rash, the numbers pointed toward a GVHD explanation for my swallowing problems. I wanted to feel relieved. I could not, because the symptoms of esophageal GVHD are identical to the symptoms of esophageal cancer, and the only way to tell them apart is an endoscopy.

The hematologist on duty, a different physician from my visit two weeks earlier, pulled up the status of my GI referral. The estimated wait was at least sixty days. She frowned at the screen, said sixty days was too long, and promised to do what she could to expedite the consult.

I was grateful. I remain grateful. A physician looked at a queue, made a judgment, and acted on my behalf. Gratitude, however, is not the emotion I carried out of the building. She could see the queue. I could not. My own care was being tracked, thoroughly and in real time, by everyone except me.

My career in technology has taken many forms, but one thread runs through it: I helped bring the Internet to Canada, the same Internet that lets anyone with a phone follow a parcel from a warehouse in Vancouver to a doorstep in Ottawa, hour by hour, scan by scan. Courier companies decided decades ago that the people waiting for a package deserved to see its progress. My referral, the one that determines whether I have cancer, sits in a system no one decided I should see.

Nobody hid the information from me. No policy names patients as excluded parties. The referral system was simply designed around the people who process referrals, and I am not one of them. The design never asked what the waiting feels like from my side of the wall.

Consider the two weeks between appointments. Somewhere in Ottawa my referral was moving, or waiting, or sitting unread in an inbox. Received, triaged, scheduled: the referral would pass through each stage in its own time, and every stage was equally invisible to me. My imagination supplied the missing answers, and imagination is a poor companion when one of the possibilities is cancer.

The uncertainty changes how a patient lives. Do I call the GI office to ask, and risk being the difficult patient? Do I call my hematology team, who sent the referral and moved on to the next of their hundreds of patients? Do I wait quietly and trust the process I cannot see? I chose waiting, mostly because the alternatives felt like intrusions into a workflow that was never built to answer me.

Every conversation about my referral happened between other people. The hematologist wrote it. A clerk transmitted it. A triage nurse somewhere will score its urgency. A scheduler will assign it a date. Each of them can see the whole chain. The person whose body is the subject of the chain sees none of it. The design treats my exclusion as normal, because a referral is understood as a task performed on my behalf rather than a process I am part of.

The distinction matters. A process done to me requires only my consent at the start and my attendance at the end. A process done with me would keep me informed in between, because I am the one carrying the question the process exists to answer.

I keep returning to the moment the hematologist turned her screen toward the queue. Her glance took perhaps ten seconds. Those ten seconds gave me more information about my own care than the previous two weeks combined. She did me a kindness, and I will not forget it. A kindness, though, is something granted at the discretion of the giver. The parcel on my doorstep required no kindness at all.

Thanks for reading,

Mike