By Biplov Adhikari, MBBS
What is the most important thing to a sick person? What do they miss the most when they get sick? As a third-year resident in internal medicine, I am quite certain that what you miss the most when you get sick is the normality of day-to-day life, as well as the presence of your loved ones. My certainty stems perhaps because I too have been a patient many times and lived with a chronic disease.
Illness makes us appreciate the things that we take for granted. Mundane things like walking, talking, or even chewing become precious and profoundly yearned. In this longing, there is hope; a hope to go back to what once was—a normal life. During their worst, people long even to go back to work. This is a story about how working from a cancer unit could be a good thing for our patients.
It is mid-June in Baltimore as the morning sun, in all its orange summer glory, climbs up and beyond the downtown skyline, starting another day of battle with window shades. The in-patient cancer team enters the dark room of a new patient; the sunrays are no match for the blades on the window blinds’ infantry. They find a middle-aged couple sitting across a table beside the window, their laptops ajar. The blue-red lights emanating from their virtual offices flush their faces. The window blinds are hard at work, preventing the sunlight from diluting the shades of ‘Zoom’-blue. It is just another day at the office for them and they are hard at work. Perhaps, the ‘H’ in ‘WFH’ could stand also for ‘Hospital’. Their intense focus now shifts to the group of people who have rarely worked remotely.
The patient, a woman in her late forties, was found to have a large sarcoma growing in her abdomen and needed urgent chemotherapy. She was admitted directly from the clinic as the tumor had been pressing on her ureters causing her kidneys to swell. She listens intently as the medical team explains her chemotherapy regimen, her one hand caressing the huge blob of cancerous tissue and the other across the table, holding her husband’s hand. There is not a single furrow of sadness in her eyes. The fellow, with the help of pen and paper and repeated glances at the patient’s face to make sure she is understanding the information being provided, explains the treatment in great detail to make sure those un-furrowed eyes are not because of ignorance. The ominous murky aura of cancer is nowhere to be found in the room.
As the team makes for the door, happy clicks of the mouse and funky taps of the keyboard fill the room. Whether the work is distracting or giving a sense of control, the team does not know, but it is doing a great job of preventing the flood of despair. The couple is still in front of their laptops when the first bag of chemotherapy is hooked to the patient’s intravenous access. Another day at the office continues from the hospital.
Day gives into the night and more chemotherapy makes its way into her body. And with it, the prelude to the side effects of the chemotherapy begin to unmask. She is too nauseated to have breakfast on the second morning, but the team still finds the couple working, creating values that can be translated into bread, bed, and the best bib and tucker; the bread on her breakfast tray, however, was uneaten. Her voice is softer but still full of conviction. She tells the team how grateful she is that her husband has been able to work remotely and has not left her side. Her husband nods in corroboration.
“Why are you still working from the hospital?” the resident asks bluntly.
“It gives me a sense of control. The cancer has taken a lot of things from me, but to continue my passion gives the control back to me. It is something I do not want to relent,” she replies.
That day too, they work together into the evening.
On the third morning, the team finds the patient in bed. Her nausea had been excruciating overnight, leading her to have multiple episodes of vomiting and severe retching, leaving her utterly drained. The overnight resident had to administer her intravenous ondansetron twice. Instead of her laptop, a bucket to collect vomitus is by her side. The chemotherapy, by now, is not just disintegrating the tumor but is also abutting hard against her area postrema. With a demure smile, she keeps glancing now and then at her laptop; its lid shut and its stickers ashine in the morning sun—her husband made the window blinds surrender in their battle against the sun. His laptop still ajar, he gets up from his chair and comes to her bedside and takes her hands in his. Her smile strengthens. Someone from the back of the team lets out a soft, “aww.” The husband has been by her side through the whole treatment while continuing to work.
Illnesses are moments that make us yearn for the normality we so easily take for granted. During our most vulnerable, we long even for the mundane. The longing can lead to overwhelming despair, which is debilitating and kills hope. It is especially worse when the circumstances are abrupt and for the first time; like in the case of our patient needing urgent chemotherapy. Cancer patients, at the start of chemotherapy, differ greatly from other patients. Most of them, still able to live normal independent lives, are thrust into hospital beds because some chemotherapeutic regimens are so taxing on the body. Unlike other illnesses requiring hospitalization, where the patients are unable to carry out their normal lives, patients admitted only for chemotherapy still are quite functional. One day they are living a normal life and the next day, they are cut off from it all and confined to hospital rooms, hooked up to elixirs that break down not only the cancer but also their normal state of being. During these moments, anything that keeps them connected to their lives in the world outside gives them hope. It empowers them.
The post-COVID era of working from home (or hospital) has been immensely beneficial for such cancer patients. The ability to continue their normal lives from within the walls of a hospital room is profoundly empowering during such times of despondency. And if they are extremely fortunate, their caregivers might also have the choice to work remotely. They can have someone by their side at all times without having to worry about the perils of missing work. There would also be less guilt for the patients as they are not keeping their loved ones away from their work. I find it to be a beautiful thing; after all, isn’t love about being there when your loved ones are at their worst?
On the day of discharge, the team finds the patient back in her chair, her laptop on the table, her fingers on the keyboard, and her husband happily humming away at work across from her. Her smile has reappeared. She plans to continue working on her laptop until her discharge papers are handed to her. The team moves on to the next room, to a new patient admitted for his third cycle of chemotherapy. They find him standing, his laptop on the food table drawn tall and secured by two chains to prevent it from falling. He is hard at work on his improvised standing desk. His wife is sitting comfortably on the sofa with her laptop in its native place—the lap. The resident at the back lets out a soft chuckle in the air as the fellow explains the chemotherapy.