One Person’s Cancer Treatment during Covid-19
By Kathleen May, March 27
When my friends dropped me off at the Rotary House Lodge in Barrie, where I would be living five days a week for at least five weeks, we hugged goodbye. Both of us are immunocompromised, me with cancer and her with fibromyalgia and another as yet undiagnosed ailment. But in that moment, the comfort of contact overruled the caution of social distance. Maybe she wouldn’t make the same decision today, ten days later. Maybe I wouldn’t. I am so grateful for that hug, though.
I remember sitting on the single bed and leaning back against the inflatable pillow after they left. I thought: the rest of the world is going on without me. I’m stuck here, receiving chemoradiation, my post-surgery lifting restrictions only just ended, and the rest of the world is moving on without me. I thought about all the things I had booked before this: workshops and conferences and gatherings. I was just coming out of my diagnosis haze – I wanted to step, maybe a little too quickly, back into my ‘normal’ life.
But life didn’t go on without me. Nothing did, really. I watched from afar as everything in my home community, my province, and across the planet ground to a chugging halt. For me, normalcy was already out of reach. Now, it wasn’t available for anyone.
The day before I left for Barrie, luggage packed and food purchased, I received an email from Gilda’s Club. As a brand new member, I was so excited about the programming. Something to help me feel connected, feel normal. Allowing me to meet other women who are going through what I have. Or women who’ve come out the other side. I so needed that.
But the email informed me that Gilda’s Club would be closed for the foreseeable future. No yoga, no coffee chats, no art classes. A zoom session has been offered.
All throughout my cancer journey, my partner has come with me to almost every single medical appointment, offering support and a secondary insight. The last time she was allowed in the hospital to accompany me was my very first day of treatment – after that, I’ve been on my own. For a couple days, visitors were allowed at the Lodge, and I’d been eagerly contacting Barrie friends to arrange visits. Then the signs went up – No Visitors Unless Medically Necessary. All plans postponed indefinitely.
The Lodge is in the same lot as Royal Victoria Hospital, and initially I was able to take the ‘tunnel’, an underground connection between the two buildings. I only had to take the elevator down two flights, walk about 100 metres, and then I was in the cancer centre, right at the radiation desk. So convenient after chemo, which made me nauseous and weak.
But on my third day here, the woman at the reception desk yelled after me – the tunnel was now closed to patients and I would now have to enter the main doors and go through screening. All other entrances and exits to the hospital, except emerg, are no longer accessible.
I became very accustomed to the screening questions. I had to answer them once to enter the hospital, once to enter the cancer ward, and again up my return to the Lodge.
No, I haven’t left the country since yesterday.
The screenings have changed almost daily, and so has the set-up. Blockades have been placed to funnel people toward the staff in yellow gowns with masks and plastic eye shields. They squirt sanitizer into my waiting hands and I dutifully wait for them to complete the questions I’ve pretty much memorized.
On Wednesday, I was awaiting an MRI and I listened to a staff member making phone calls to either cancel appointments that had been deemed not medically vital, or confirm ones that were. Often, the person on the other end of the call cancelled even though they had been approved to go ahead with their appointment. I knew why.
A doctor came by and asked about the numbers for cancellations. In a strained voice, the woman said she didn’t know how they would ever be able to make time for all the rescheduled appointments when this is all over.
Then she told the doctor she was tired. Tired and stressed and scared. I couldn’t help but hear – I was planted on a hospital bed not ten feet away.
Sometimes, the staff let you see how much all this is affecting them, but most of the time, you wouldn’t know.
In the waiting rooms, there is yellow caution tape cordoning off every other chair, so you can’t sit next to anyone. In the pharmacy, you stand back from the counter in a little square of painter’s tape and proclaim your name and birthday to pick up your prescriptions. At every desk, there’s a taped line on the floor that you Do Not Cross. The food court’s been shut down since my second day. My social worker has been distanced to the ‘greater hospital area’ and appointments will be even harder to get.
Today, they changed things up with the screening. I got a phone call from the hospital to ask more detailed questions, including about bodily functions.
Anyone who’s had radiation treatment knows about how disrupted some of those bodily functions can be. So I answered honestly.
The woman who’d called had to confer with a physician. She came back and asked me to hold, and he came on the line. I explained in graphic detail to a complete stranger the nature of my diarrhea, and he said he’d call in a prescription for immodium and told me that’s not diarrhea so don’t bother mentioning it while being screened.
When I walked over for radiation, I see there’s now a ‘cancer triage’ line when you first enter the hospital. She asks me the same questions as I’d answered on the phone call, only now I don’t have diarrhea.
I asked her what happens if I have some of the symptoms she’s describing, which are known results of radiation, like fatigue. She told me, “Well, this is about new fatigue.”
“Well, it will be new for me. I just started treatment last week.”
She responded, “That’s a great question.” But she didn’t have a great answer.
I thought, this is why people don’t tell the truth.
When I returned to the Lodge, I joked with the woman at the desk and promised that when I did leave the country, she’d be the first to know.
Back in my room, I look at my little collection of food. Pickles, artichoke hearts, dried seaweed, cashews, turkey jerky. No, I think I’m ready for a hot meal today. I’ve been avoiding the common areas because there’s a resident who coughs into the open air, stands too close, and says he hates talking about the virus and yet speaks of nothing else.
When I venture out, though, the place is deserted. It’s just me as I boil water for tea and miso soup. I stare at the toaster as it does its job on my week-old baguette slices and wonder how many things I’ve touched in the last five minutes. How many handles, how many surfaces. The urge to scratch my nose is unbearable, but I bear it. My normally ragged fingernails are growing for the first time in years because I’ve succeeded, at least, in keeping them out of my mouth.
Social media keeps me connected. I get phone and video calls. I’m entertained – I’m writing, following online yoga, teaching myself ukulele. My cancer is being treated – though I know this isn’t universal during this crisis, I still feel seen, and I’m grateful. Cancer is an inherently isolating experience – even when we can find the words to describe our experiences, which isn’t always. When you add to that a medical health crisis that has become the locus of attention of the entire world, it can feel like our piddly cancer gets sidetracked or overlooked altogether. I know I’m lucky.
So I eat my dinner, alone. The dishes go in the dishwasher; my hands get washed. Back in the room, I pump the sanitizer dispenser that’s fixed to the wall and note it’s getting a little low.
I want a hug.
*since writing this, the protocol has changed again. Cancer patients now have our temperature taken and tracked upon entering the cancer centre.
**Also, since the time of this writing, Kathleen is now recovering at home.
Enliven reached out to Jody MacPherson at MAHC Chemo Clinic and asked some questions around cancer treatments, Covid-19, and what to expect.
1.What can I expect at MAHC when /if I go in for Cancer treatment during the Covid-19 pandemic?
Here is Jody's response:
"We are all in this together. Appointments booked to the clinic will have a screening telephone call the day before their visit and be asked some questions about exposure and travel and if the screen raises alerts, the nurses will be called to the phone and deal with the alert on a case to case basis. Parking as usual and proceed to the front doors. There is a screening station immediately on entry. Staff will be gowned and gloved and masked for their protection at the screening station. The person will be questioned again and then will proceed to the clinic as usual. No visitors or support people allowed unfortunately but escort, if required, for safe transport or to assist with self care allowed. Nurses in the clinic are dressed as normal. At this point in time all chemo treatments are continuing as they are life saving/disease/symptom limiting necessary treatments. Some preventative treatments for bone density and iron treatments are being postponed. Patient safety is of utmost importance as is controlling/curing the disease."k here to edit.