I have not had COVID19, but it still has harmed me considerably.
In July I started a three-month chemotherapy break. Because of COVID19-related resource deficits, that turned into six months. My surgeon explained that OR nurses had been seconded to COVID response, delaying all surgeries in the province. In October, I learned I needed a very minor 15-minute surgical procedure requiring only a few superficial sutures. I was only able to get that done in December just before Christmas, and thus was only able to access chemotherapy in January. Scans revealed that my tumour doubled in size during that undue wait.
I am now in the thick of chemo treatments, the same recipe I had before (Irinotecan, 5FU, Panitumumab). The associated stigmata vary each cycle, with the skin rashes and fatigue the most prominent issues. As harsh as it is, it is a better situation than not being in treatment with a progressing cancer. At this time, my pain is reasonably controlled by the medications I am on (CBD oil, nortriptyline). So far, no opiates – I won’t move to them until I absolutely must. I will not know whether the treatment is working to shrink the tumour until the end of May.
Omicron risk has us living a lockdown lifestyle. We see virtually no one. I don’t go shopping. Andrew, ever the trooper, is our forager. Apart from medical appointments, I stay home. This is not as grim as it sounds, as I try to prioritize fitness every day. Although many scorn us for being so careful, I consider it my duty to protect myself and my fellow chemotherapy patients and the staff that care for them. Even if I had mild symptoms, a COVID19 infection would jeopardize my treatment. But worse, unknowing transmission would jeopardize the treatment and indeed the lives of those getting treatment near me. The lady in the chemo chair next to me is over 80 years old.
I continue to be active in advocacy efforts. My treatment delay experiences have covered in a recent story in Chatelaine magazine, an Amgen video, and a Cancer U Thrivers podcast. My fundraising was profiled by Canadian Cancer Society, and my book The Cancer Olympics was the subject of an Ask the Author Cancer U interview on YouTube. I remain active with Patients for Patient Safety Canada, particularly in a recent initiative to make the post-medical-harm process more humane for both harmed patients and providers. As well, I am a new member to the regulatory board for my profession of Psychology. In the later role, I am heading up a committee aimed at making doctoral-level training the entry-to-practice standard for Nova Scotia, as it is in all other provinces. These projects are time-consuming but also somewhat thrilling. COVID19 has changed the landscape, making the time ripe for change in healthcare.
Today’s song is “Both Sides Now” by the iconic Joni Mitchell from her 1969 album Clouds. She has been in the news lately, both for her 2021 Lifetime Achievement Award, as well as her brave choice to withdraw her canon from Spotify to protest Joe Rogan’s COVID19 disinformation. She had polio as a child, and therefore is committed to vaccines. Joni is considered one of the 100 greatest musical artists of all time by Rolling Stone magazine, and her perfectly-crafted “Both Sides Now” is considered among the best 500 songs of all time. A phenomenal songwriter, Joni was also gifted singer with a 5-octave vocal range. Her preternatural maturity is shown by the fact that she wrote this poignant cynicism-to-hope song when she was only 20 years old. I choose it today because it reflects the world-weariness that many of us feel in this time of upheaval in global health and politics, as well as its whisper of wise acceptance “in living every day.”
Rows and floes of angel hair
And ice cream castles in the air
And feather canyons everywhere
I’ve looked at clouds that way
But now they only block the sun
They rain and snow on everyone
So many things I would have done
But clouds got in my way
I’ve looked at clouds from both sides now
From up and down, and still somehow
It’s cloud illusions I recall
I really don’t know clouds at all
Moons and Junes and Ferris wheels
The dizzy dancing way you feel
As every fairy tale comes real
I’ve looked at love that way
But now it’s just another show
You leave ’em laughing when you go
And if you care, don’t let them know
Don’t give yourself away
I’ve looked at love from both sides now
From give and take, and still somehow
It’s love’s illusions I recall
I really don’t know love at all
Tears and fears and feeling proud
To say “I love you” right out loud
Dreams and schemes and circus crowds
I’ve looked at life that way
But now old friends are acting strange
They shake their heads, they say I’ve changed
Well something’s lost, but something’s gained
In living every day
I’ve looked at life from both sides now
From win and lose, and still somehow
It’s life’s illusions I recall
I really don’t know life at all
I’ve looked at life from both sides now
From up and down, and still somehow
It’s life’s illusions I recall
I really don’t know life at all
This post originally appeared on The Cancer Olympics. It is republished with permission.
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