- The Myeloma Beacon - https://myelomabeacon.org -
Letters From Cancerland: The Electronic Invasion
By: April Nelson; Published: September 26, 2019 @ 7:52 pm | Comments Disabled
Back at the end of 2018, my oncologist Tim and his partners joined a large national cancer group. Tim and company had operated a busy and highly respected private cancer clinic in the Columbus, Ohio metro area for a number of years. The name remains the same on the building and when the receptionist answers the phone, but Big Corporate is here to stay.
The changes with the transition were, at times, startling, ill-conceived, or both. Some changes, however, were undone within the first four months of 2019 because of the loud, strident demands of long-time patients.
Confession: I was one of those patients. When a stressed staff member said, in response to my listing of things that had changed for the worse, “Would you mind doing one of the surveys and telling them that? They are not listening to us when we tell them about our patients,” I gladly took the sheet, a standard 8½ by 11-inch sheet, and filled both sides in great detail.
The latest change came in August. My husband Warren and I were ushered into an examining room, told that Tim would be in shortly, and left alone.
“Look at that.”
Warren pointed to a flat screen, perhaps 18 inches by 36 inches (45 by 90 cm) in size and mounted vertically on the wall where a bulletin board, which contained a three-months-at-a-glance calendar, had previously hung. The screen was dark, but as we gawked at it, it turned on.
“Patient Portal,” the title read. It then proceeded to scroll slowly, left to right, through full screen photos with headings referring to various cancers, interspersed with pharmaceutical company advertisements.
I was not amused. I took some notes, complained to Tim, predicted darkly that this would be my next Myeloma Beacon column, then flew out three days later to Portland, Oregon to see my family, and left my notes to languish.
When we went back recently for my September infusion, the flat screen was still there. Soon after we entered the room, it came to life, causing Warren and me to speculate whether it had a motion sensor. (It doesn’t; it is set on a timer and I have early morning appointments.) This time while waiting for Tim to come in, I watched the portal more closely and made several observations about "Cancer TVLand," as I came to call the show. Each cancer type had its own colorful photo of a person, presumably someone with that cancer, and the viewer could touch the screen to open up that cancer. Here are some key points I learned:
Cancer is for older people. Guessing at the ages of the individuals in the various photos, I would say they ranged from late 40s into their 70s. They had facial wrinkles, laugh lines, gray hair, white hair. The only young adult was a concerned looking oncologist, and the only children were grandchildren being hugged by Grandpa (never Grandma). Cancer is clearly not a young person’s disease.
When you get cancer, you become very athletic. My goodness, I had no idea. Among the bucolic scenes presented were individuals (sometimes pairs) cycling, kayaking, rock climbing (up a rock face, not some namby-pamby climbing wall), on the verge of tossing a football, and just finishing a round of one-on-one basketball with a similarly aged friend. I felt like a slug in comparison.
Cancer is very diverse, but not totally diverse. Models were men and women, sprinkled fairly equally. African-Americans, Asian-Americans, and Caucasians get cancer. Apparently Latinxs and Native Americans do not get cancer, at least not those with darker features. No persons who appear to come from India, Pakistan, or the Middle East get cancer ever either.
Cancer is fun! I bet that one surprises you. With one exception, everyone was smiling, many of them broadly. If "Cancer TVLand" had had audio, there would have been a laugh track. “Hey, look, I have Stage III non-small cell lung cancer, but I’m happy!” The sole exception was the shot for chemotherapy: in it, both the doctor (a young woman, the only young adult shown) and a couple looked concerned.
Standard precautions are not necessary. The portal shot for Stage 4 melanoma (hint: there are only four stages) was a serene looking older woman in a small one-person kayak in a bay on a sunny day. No hat, her wetsuit was sleeveless (I used to whitewater raft; you can get wetsuits with sleeves), bright sun reflected back off the water onto her face. Unless she had slathered herself in sunscreen with an SPF of, oh, 500, I wanted to yell, “What are you thinking? Get out of the boat and get a hat on!”
Money issues may be disconcerting but not that big a deal. There was a portal shot titled “Support and Savings Programs.” An older woman was smiling as she handed over a credit card (or maybe she was receiving her receipt for services). Really? Really? Why not show her looking at the “For Sale” sign in her front yard because she can’t afford her mortgage? Or how about leaving a food bank with some groceries because her paycheck (if she is even able to work) can only stretch so far?
Cancer prognoses are very optimistic. Out of perverse curiosity, I tapped the multiple myeloma screen and then tapped on “Questions To Ask Your Doctor.” Question Number 1? “What symptoms should I look for if the cancer comes back?” (emphasis added). I have yet to see any discussion of myeloma that out of the gate assumed the cancer would leave after treatment and might come back. If? If?
There is no way, incidentally, to turn the portal off. We may drape paper towels over it next time. I would also note that the previously banished three-months-at-a-glance calendar was mounted on the wall once again, right next to the portal.
The late, great Ray Bradbury wrote often about our fascination with electronic amusements and the darker side of such things. Ray died in 2012, late enough into the 21st century to see some of his concerns come to fruition, but much of his darkest writing was done a half century or more ago. In one gem of a story, “The Veldt,” written in 1950, his characters lived in a "Happylife Home," with a large interactive screen that eventually turns on the adults. (You can find this story online and read it yourself.) He recognized the invasiveness, even with the best of intentions, of computers and videos and such long before they came into existence, let alone became mainstream in this country.
Bradbury comes to mind because once I leave the examining room and head to the infusion floor, I take a seat with a large bank of windows that overlook a grassy strip just past the staff parking area. Despite the strip being right off a major interstate bypass, with heavy local traffic, and despite being in the flight path of jets landing and taking off from a major airport, the grassy strip supports wildlife including wild turkeys and deer. This time, there were some half-grown feral cats tumbling and playing.
I brace myself against the day I walk in and the bank of windows has been replaced with screens showing me the happy life I should be leading per "Cancer TVLand."
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here [1].
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Article printed from The Myeloma Beacon: https://myelomabeacon.org
URL to article: https://myelomabeacon.org/headline/2019/09/26/letters-from-cancerland-the-electronic-invasion/
URLs in this post:
[1] here: https://myelomabeacon.org/author/april-nelson/
Click here to print.
Copyright © The Beacon Foundation for Health. All rights reserved.