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.
Hello Friends of Enliven,
On what would have been the last Friday of March Break, we are settling in for an extended time of social distancing. In contrast, one of the main aims of Enliven is to reduce social isolation.
So how do we reconcile our current duty to global and community health and the Enliven goal of helping people staying connected? We know that many in treatment right now are susceptible to all forms of viruses and so the added stress of this pandemic will be challenging. Please consider the following ways to stay connected, hopeful and well.
Novel virus, novel feelings. Stress and anxiety are even more normal now; and having cancer may add to this response. Additional distressed feelings are going to visit. Remind yourself that this is normal. Our job, as we practice self care, is to find a way to release these feelings - from our minds, from our bodies, and from our hearts. We are facing a new virus, and new feelings can be expected. Use these feelings to motivate actions of wellness.
Just the facts. Learn about the pandemic and what it means for you as a patient, caregiver, or health professional. Shut down fearmongering -- credible sources are key: social media, and always consider the reliability of information you see on Facebook, Instagram and Twitter.
Problems. When problems come up during our time of social isolation break them down with a problem-solving plan. What's really a problem? What can be deferred? Talk to someone about your problem. How do they see it? What are some possible solutions and how can Enliven help?
Be kind. It's always important, but these days it's critical. Be kind to yourself and to those you give care. And if the current situation overwhelms us - that's ok. We're human. The world is overwhelming now. Take a moment to breathe and reset.
Daily wellness plan. Set your day up so that wellness can be the star of the show. Eat healthfully, rest, drink water, move your body through space. Think about your wellness non-negotiables first thing in the morning. Set out the water pitcher. Put the walking shoes at the door. Cut up some celery and carrots. Easy, planned wellness gestures for every day will help now.
In cancer we hear 'one day at a time' often. These days, one day at a time, one hour at a time is the new reality. Let us be part of your wellness plan now. We are here for our members, friends and supporters during this pandemic. If you have cancer and are looking for help during this time of social isolation, reach out. We'll do all we can to ensure you have what you need.
Take good care,
Jackie Riley, E.D. Enliven Cancer Care: A Centre for Well-being in Cancer
Hello Dear Friends of Enliven,
Recent snowstorms aside, I’m feeling spring-y!
March 2020 promises to be a time of renewal, growth, and a few surprises. It’s only a matter of days to our next Enliven Dance it Out - Dance Party! There are so many great plans for March at Enliven. (Read more)
On March 5th, we’ll gather again at 59 Main St. East (1st floor this time!) and listen to the music that beckons our bodies to boogie, befriend, and bask. The boogie-ing will be self evident - no skills necessary, just the interest in celebrating a body that can move through space. And befriending is what Enliven and Dance it Out is all about. Befriending our own bodies and their capacity to find joy in movement and music, befriending other participants who will each have their own connection to Enliven and to cancer, befriending music that is the memories of our lives and new tunes that leave us curious. And we’ll bask in the passing of time. Dance parties are always held at the end of each quarter of the year. Can you believe that we are in the last month of the first quarter of 2020?! So join us, move, and remember all the joy that connection, music, and the wonderland of movement can bring. (Put the next 2 Dance Parties in your calendar: March 5, and June 3.)
Sometime this month we’ll have the good fortune to hear from Carrie Oakley in a workshop to Medical Expenses and Taxes Workshop that was postponed due to the snowstorm of Feb. 27 - watch social media and our website for a rescheduled date and time!
And what did I say about spring and growth?
March seemed like the perfect time to expand our offerings into the next neighbouring town in Muskoka. On Thursday, March 26 at 7 pm, Enliven will host it’s first BRACEBRIDGE Cancer Coffee Talk. This is an opportunity for patients, caregivers, and health providers to come together. Make connections and know that Enliven is there to help facilitate connection and end the isolation that can come with a cancer diagnosis.
And what about the surprise of March?
Well, for me, March is the official first month of my second year with Enliven. It’s the month I turn 51 and if you missed the inaugural Soup for the Soul in February, come and enjoy the sensational soup of March on March 31 at 12:30 pm (many thanks to our volunteers interested in making homemade healthy soups to share with our friends of Enliven.) I’m not announcing the next soup recipe, but I know that it’s delicious! Have a favourite soup you’d like us to serve in April? Contact us and let us know.
Enjoy the month of Spring, my friends and contact Enliven to find out more about how we can assist you or someone you love make a connection through cancer this spring.
Jackie Riley, Executive Director, Enliven Cancer Care: A Centre for Well-being in Cancer
DEAR FRIENDS AND SUPPORTERS OF ENLIVEN,
As I’m writing today, I’m thinking about the incredible February that lies ahead for Enliven and I’m brimming with appreciation.
For months now the Enliven Board, and the fundraising committee especially, has been busily preparing for our 2 Big February World Cancer Day events.
With the Jo-Athlon at Tawingo on Sunday, Feb 2 and the World Cancer Day Gala and Art Auction on Tuesday, February 4th (World Cancer Day IS February 4) we have been moved by the support of Muskoka as we create a community of self-care and connection for those with a cancer experience in our region.
From company sponsors to individuals who gave whatever they could; from the artists that shared their creations to those who travelled miles to participate, these events remind me that we are indeed all in this together. The this is Cancer.
And together we are stronger, healthier, happier, and better.
Wellness happens when we come together and make the most of the day that lies ahead.
I think it’s this notion of making the most of each day that is behind this month’s very first Soup for the Soul afternoon. This is an opportunity for anyone touched by cancer: patient, survivor/thriver, caregiver/family, health provider to join us over a lunchtime soup and get to know one another.
As I’ve said many times, and as many of our members remind me, there is something about a cancer experience that can - if left unchecked and unconnected - leave people feeling very alone and isolated. And it’s that loneliness and isolation that zap our healing energy and leave us emotionally tapped out. That’s where Soup for the Soul comes in. Soup for the Soul - is a new offering at Enliven. Hot soup and warm conversation is offered on the last Tuesday of each month. Please note: We’d love to see caregivers and our amazing volunteers also join us for Soup for the Soul. I hope to see all of you this Tuesday, Feb. 25 - as we come together and eat a little, laugh a little, and truly connect in the spirit of finding something to smile about each and every day. (learn more at www.enlivenmuskoka.ca)
And so, we are grateful. To all who will participate in this month’s winterific offerings we have (yoga, walking club, writing/journaling classes, Gala, Jo-Athlon, and more), to all of our wonderful volunteers who make our programming possible, and to our individual and company sponsors and supporters who financially ‘enliven’ everything that we do - thank you.
Thank you from everyone in Muskoka touched by this disease. We are, indeed, all in this together.
Jackie Riley, E.D. Enliven Centre for Well-Being in Cancer
DEAR FRIENDS AND SUPPORTERS OF ENLIVEN,
Today I drove through the snow into Huntsville to witness many folks readying themselves for the New Year: the stores were busy, parking was limited, and there was a general sense of preparing now for what lies ahead. That preparatory energy is with me while I share what’s in store for Enliven in the month and year (even the new decade) that is about to begin.
I do my best goal setting after I’ve thought about where I’ve been. Our future accomplishments rest on all that has come before and in this, my goals for Enliven in 2020 are the same. For an organization that was a wonderful idea in the winter of 2016 to one that has captured regional interest, Enliven is on a solid trajectory for increased impact in 2020. I’m proud of Enliven’s capacity to meet people where they are at, to grow via the new ideas and opportunities presented by its community and to respond to needs as they arise. We are a nimble organization and that’s the joy of being a part of something new.
Last month I wrote about connection. Connection is the positive anchor to everything we do at Enliven. Facing Cancer is difficult, facing it alone is more so and no matter how many people we have in our circle we have times when we feel alone in it. Enliven aims to sand the edges from this feeling by letting everyone in Muskoka know that there are places for connection during cancer. My hope for this year is that Enliven will be even stronger in sharing this message and that participants, volunteers, and supporters will get to know us even better. With this in mind, I have 3 areas of focus for this year.
The first is engagement. Cancer is the one common theme for people engaging with Enliven, but there are an infinite number of challenges to participation in events, programs and offerings. Connection comes about through engagement. And so, in 2020, I hope to listen more, to take action on methods to remove barriers to participation and to create non-traditional ways for our community to become even more involved.
The second area of focus for me is appreciation. There is a quiet army of supporters, volunteers, board members, and friends who make Enliven’s work possible. My goal is to celebrate them more, to seek their input more, and to ensure that they are fully acknowledged for the gifts they share and how those gifts help grow our organization.
My last (and certainly not least) priority for Enliven in 2020 is sustainability. Like many not-for-profit organizations in Muskoka, our operations depend on grants and donations. In 2020, we will be focusing on sustainable means to ensure Enliven’s foothold of connection during cancer is secure for the future.
We look forward to connecting, celebrating, and growing with you in the year ahead.
Jackie Riley, E.D. Enliven Centre for Well-Being in Cancer