Imagining what goes through a patient’s mind after surgery

“I will never forget that day.”

She smiled broadly.

“It was about a week after my cancer surgery and I had finally worked up the courage to look in the mirror. I knew you had rearranged things a bit, okay. Moved stuff around. Taken things apart and jammed them all back together, right?”

I probably would not have said it quite like that, but she was correct that her surgery had involved removing part of her tongue, a ridge of bone from the jaw, and some of the lymph nodes in her neck. She had been a bit swollen after the procedure but no more than expected, as I recalled. Things had gone well.

“So, I am standing in the bathroom and look up at myself in the mirror. Well, the face peering back WAS NOT ME! It just wasn’t me! I just kept staring. I wanted to know what had happened! Finally, I found something that looked familiar.”

“What was that?” I wanted to know.

“Finally, I recognized my left eye. I knew that face in the mirror was mine because it had my left eye! But that was the only thing I recognized! Only my left eye.”

Of course, at the time, I knew nothing of what she had discovered in the bathroom mirror. My daily rounds probably consisted of telling her she was recovering nicely and the cancer was gone. We would have talked about nutrition and what she would need to do once she was discharged from the hospital. I would have reminded her that her swelling would disappear gradually over a few weeks. I might have shared that the scars would fade steadily and would be almost invisible someday. I have had hundreds of similar discussions over the years.

She, on the other hand, must have been wondering, What the heck did this surgeon do to me?

I pressed her to go on. “So, what happened?” I asked.

“Well, gradually, I recognized more and more of my own face. After a while, I realized the unrecognizable person in the mirror had my nose, for instance. Then, over the course of a few days, I found my other eye, then my forehead, then my mouth. Finally, I recognized myself entirely. It was really weird, though! Now I know what it must be like to lose your memory or forget your childhood.”

“That must have been a scary experience,” I said.

She laughed. “I guess so. It all turned out fine. I’m doing great now.”

I tried to imagine what else had run through her head at the time. Will I get better? Does this happen to everyone? Why didn’t the doctor warn me about this? What if it gets worse?

Now, several years of cancer-free existence later, she still tells the story with great enthusiasm. Those days when her memory did not work remain very fresh in her mind.

Bruce Campbell is an otolaryngologist who blogs at Reflections in a Head Mirror.

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  • http://www.healthcaretoolbox.org/ Kim A.

    Thank you for writing such a poignant blog. Taking a step back from the usual routine to really listen to patients is so important, both for the doctor and patient. Listening can better patient-doctor interactions, improve health outcomes, and reduce healthcare costs by avoiding unnecessary medical procedures.

    I work at CHOP’s Center for Pediatric Traumatic Stress where we’ve devoted years of research to studying traumatic stress in sick or injured kids and their families, especially ways physicians and specialists can notice patient reactions and counsel kids and parents on the emotional and psychological impact of medical issues. In fact, one of our ED physicians just wrote about his experience in taking time to listen to his patient, and how this not only eased the process for child and family but also promoted better care.

    Thanks for your thoughtful article and blog.

    http://www.research.chop.edu/programs/hct/wordpress/?p=439

  • houriganterry

    Dear Bruce,

    I’m grateful for your reminder. I have about 20 yrs of
    guessing what my patients are experiencing. I thought
    of myself as pretty empathetic but it’s futile: knowing
    how they feel is thinking I know what it felt like to be
    Neil Armstrong on the moon: “One small step for man…”

    “The Doctor” comes as close to experiencing this
    domain as anything I have seen. If you haven’t
    seen it, it is a must for anyone in your world or mine.
    It could help to move your future forward. Take the time.
    (William Hurt, 1992)

    I’ve been straining to somehow see through their eyes.
    I’ve started conversations with “How are you sleeping?
    How’s the pain?”. And when I ask for it, I’ve gotten a
    lot of feedback (like Ed Koch) ” How’m I doing?”.

    One of the things (my) sick people resent is hearing
    questions like those from friends, doctors, or anyone.
    And it’s not the questions: it’s the order they arrive in.
    The first thing out of her friends’ mouths: “How’s the
    fatigue? How’s that chemo? Still nauseous?”
    Many people feel their noses rubbed in it constantly.
    You’re labeled now.

    Imagine your day if every call or encounter pressed
    that label back onto your screen. Fielding those
    calls can be overwhelming when they
    exceed your threshold for isolation: it seems that
    emotional isolation is a frequent price paid for the label.
    One of my most prized “rainy day” notes was from her
    daughter: “My mom always looked forward to you coming.
    You were the only one who treated her like a regular Joe
    and you got her to laugh every day till that day before
    she died. She was free of the stress and the pressure
    for those hours.”

    I believe I can now sympathize, not just empathize
    with them, because now I have my own free ticket into
    their world (a colon ca dx last fall.)
    Along with whatever you might imagine about the fear,
    the second guessing, and the life reviews, comes a
    plethora of unexpected refreshed & life changing events.

    With my patients, “Law and Order” came to mind:
    Jerry Orbach saying “No one released that detail to
    the public, my friend. Only the killer could know that.”

    When I’m with most sick people now, I can cross over
    to their side of the river, stand with them and
    take in that view, and know some important elements
    of what they are seeing and going through. Spent my
    life wondering what life was like on that side (no
    bridge). Now this ticket gets me there (and back)
    whenever I need to go.

    It also changed my family commitments, friends
    and stress levels. (“Does this matter? Is this a
    necessary stress?”). When the answer comes back no,
    it’s kicked off my screen and out the door. This
    immune system can be employed in better causes
    than dealing with BS stresses.

    I wish there were a way (virtual reality, with temporary
    pain and drug effects) for every one of us in service to
    take on a serious illness for two or three days. Twice a
    year. Through your eyes, your veins. Go through
    the works: the beds, the pain, the phlebotomists, the
    s.o.b., the loneliness you experience because almost
    no one understands and proves it over and over through
    awkward words and “music”: (gestures, glances & all
    the unspoken stuff).

    If we could cross over and experience the cost, without
    having to pay the life long price. On day three, leave
    the cva or thrush or ostomy at the door. You get to
    walk away.

    Outta there with your “Get out of Jail Free” card…

    Thank you. Your story brought me new string to
    help tie up some old packages.

    My mentor babysitter, Mae Jenkins, at the age
    of 80 used to repeat to me at bed every night:
    “I move forward to produce new conditions,
    always in advance of any that have gone before.”
    – Thomas Troward, 1909

    Terry

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