Cancer Diary: Implicit in Their Actions
When Carl was diagnosed with cancer of unknown primary (CUP), we didn't know yet what that meant. We had never heard of it before. Even after we learned more, we still clung to hope—because that’s what the doctors appeared to be offering.
But their actions told a different story.
CUP is brutal. It's rare and aggressive, and statistically, not many people survive it. The median survival rate hovers around 6 to 12 months. Fewer than 20% of patients live longer than a year. And Carl didn’t have just one form of cancer—he had five types present. They still couldn’t tell where the cancer began. Now, looking back, I understand what the oncologist must have seen in those test results. I also understand why they still tried to sound hopeful.
The treatment plans were delivered with upbeat tones: targeted therapies, potential clinical trials, aggressive chemo. But there were moments—small, seemingly innocuous moments—when the mask of optimism slipped.
One doctor handed Carl an advance directive form with barely a word of explanation, as if it were a routine part of the intake paperwork. But you don’t hand that out on the first visit unless you’re preparing for the end.
Another doctor hesitated—visibly—when Carl had checked the box requesting revival, not DNR. She didn’t challenge it outright, but she asked more than once if he was sure. Her tone suggested she already knew the odds of "revival" ever being possible, and that she doubted there’d be anything to come back to.
The cardiologist was more subtle still. Carl asked when to schedule his next follow-up. “Let’s just wait and see how things go,” the doctor said gently. We didn’t realize that six months was further than he thought Carl would make it. As it turned out, he was right.
In the moment, none of these things set off alarm bells. They were fragments, puzzle pieces we only recognized for what they were when we had the benefit of hindsight.
The doctors were trying to be kind. They could see Carl’s deep need to believe he would be the exception—that he would beat the odds. They didn’t want to destroy that. But what they didn’t realize was that the half-truths were ultimately a disservice. The implicit messages—delivered in subtle actions, hesitations, and omissions—never registered strongly enough to push us toward a different course. We didn’t consider hospice when we might have. We didn’t have certain conversations when we still had time.
I wish we’d been told the truth directly.
I believe now that compassion isn’t the same as comfort. Being kind isn’t the same as being soft. We could have handled the truth, even if Carl didn’t want to accept it. And it might have allowed us to make different choices—ones more in line with how little time he had left.
If you are a provider, please know this: your patients and their families are listening beyond your words. If you can’t say it plainly, your actions will say it anyway. Just make sure they’re saying what you mean.
Because when time is short, ambiguity steals more than it protects.
For other Cancer Diary posts, click HERE.
Blog editor's note: As a memorial to Carl Leaver, MSI Press graphic arts director and designer, who died of Cancer of Unknown Primary August 16, 2021, and simply because it is truly needed, MSI Press is now hosting a web page, Carl's Cancer Compendium, as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The web page is in its infancy but expected to expand into robustness. To that end, it is expanded and updated weekly. As part of this effort, each week, on Monday, this blog carries an informative, cancer-related story -- and is open to guest posts: Cancer Diary.
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