 As those who have heard my story well know, medical error is rampant. The CBC recently reported that over 70,000 Ontario patients are avoidably harmed during medical care each year. In November I and Patients for Patient Safety Canada met with the Minister of Health and Wellness of Nova Scotia. The meeting was one in a series of roundtables being held in each province. We wanted to propose better post-error policy.
Minister Doherty was very personable, introducing himself to us as "Randy." (He even asked for an autographed copy of The Cancer Olympics!) He listened attentively to our ask: that if a patient is harmed in hospital, and an investigation into the error ensues, the patient/family will be informed of the outcome in writing. Also, we recommended patient presence on committees tasked with investigating an adverse incident. Hopefully, having a patient at the table will help shift the culture from one that protects clinicians and organizations to one that protects patients. But other big things went down last month. When I saw my surgeon a month ago, I was looking forward to telling him that I was planning to return to work in January. I had thought I could postpone my ostomy reversal surgery until my retirement. He surprised me by saying that I should have the correction as soon as possible. Apparently, organs get used to being dysfunctional if they are offline too long, making adjustment worse. I will need many things first: imaging by PET-CT to ensure I am not having another recurrence, endoscopy and balloon treatments to address a stricture, and a pelvic MRI to guide any intervention. It will take months to move through that checklist, provided I am even good to do so. This sudden change of plan is very welcome to me, as I would dearly love to say goodbye to Flipper Number Two. But there is another consequence of the change. I am back to work NOW! I will work, gradually getting to full time, until I must go off for the surgery. I know from experience, having had a reversal before, that I will be very disabled for many months afterwards. So I am back at it until my next big disjuncture. My first full day was last week. Why go back at all, people ask. Why not just retire? There are many reasons for my desire to go back beyond the obvious financial advantages. For many of us, work is an identity. Because cancer strips us of everything, taking back this aspect of personhood seems like a victory of sorts. So even a brief sojourn into the working world is like a reclamation. Socially, it will diversify my restricted existence. Because I am stage IV, I know well that disability and decline await me one day. I want another kick at the “normal life” can before they descend. So what is today’s song? The Indigo Girls’ song “Watershed” from their 1990 album Nomads Indians Saints is about decision in the face of uncertainty. A watershed is an area of land that catches precipitation and drains or seeps into groundwater or another body of water. It is a place of change. The Indigo Girls’ clever harmonies capture the courage and curiosity it takes to tackle life choices. Life is capricious – our plans go awry, our way is confounded, our destiny indeterminate. And yet, we go on because we choose to. We transform, as the rain does. Thought I knew my mind Like the back of my hand The gold and the rainbow But nothing panned out as I planned And they say only milk and honey's Gonna make your soul satisfied Well I better learn how to swim 'Cause the crossing is chilly and wide Twisted guardrails on the highway Broken glass on the cement A ghost of someone's tragedy How recklessly my time has been spent They say that it's never too late But you don't, you don't get any younger Well I better learn how to starve the emptiness And feed the hunger Up on the watershed Standing at the fork in the road You can stand there and agonize 'Til your agony's your heaviest load You'll never fly as the crow flies Get used to a country mile When you're learning to face The path at your pace Every choice is worth your while And there's always retrospect (when you're looking back) To light a clearer path Every five years or so I look back on my life And I have a good laugh You start at the top (start at the top) Go full circle round Catch a breeze Take a spill But ending up where I started again Makes me want to stand still Up on the watershed Standing at the fork in the road You can stand there and agonize 'Til your agony's your heaviest load You'll never fly as the crow flies Get used to a country mile When you're learning to face The path at your pace Every choice is worth your while Stepping on a crack (stepping on a crack) Breaking up and looking back 'Til every tree limb overhead just seems to sit and wait 'Til every step you take becomes a twist of fate (twist of fate) Up on the watershed Standing at the fork in the road You can stand there and agonize 'Til your agony's your heaviest load You'll never fly as the crow flies Get used to a country mile When you're learning to face The path at your pace Every choice is worth your while Up on the watershed Standing at the fork in the road You can stand there and agonize 'Til your agony's your heaviest load You'll never fly as the crow flies Get used to a country mile When you're learning to face The path at your pace Every choice is worth your while And when you're learning to face The path at your pace Every choice is worth your while  After months of travel, I am home again.
My most recent adventure was a bucket-list trip to Italy. For the first two weeks, I rented a villa in Tuscany along with five of my six siblings, a cousin, and all respective spouses – 12 of us in total. The final week Andrew and I spent in Sorrento on the Amalfi Coast. The art, the landscapes, and the food were superlative. It was joyous, restful, fun, and most importantly – delicious! How did I afford this? I used the money from the medical malpractice settlement I received after the heinous events described in The Cancer Olympics. It felt good to see some joy come out of experiences that were so tortuous. Nothing can restore my lost life chances. However, a fragment of quality of life can be discovered, like a jewel on a beach after a storm and shipwreck. Now home, I must face the music. I must pursue the medical appointments, blood tests, scans, and all other tests that establish the status of my cancer right now. I had put all that off while travelling. And now that I am home, I once again begin my patient advocacy adventures. Several await me. This month, I will give a talk on my experiences to the medical reception course at my local college. I am working on two presentations on medical error and appropriate apology practice. And most important of all, I am scheduled to meet with the Minister of Health of Nova Scotia, along with others, to discuss patient safety. What issues would you like raised? Before I hit that reset button, I want to relish the memories of my enjoyable family time. To that end, today’s song is “C’mon get happy” by David Cassidy – the theme from the 70’s hit series The Partridge Family. My agemates will remember how the Partridge’s travelled together singing their songs. In Italy, my family did not sing together (apart from “Happy Birthday”) but the celebration of togetherness and travel in this song makes me smile. Hello, world, here's a song that we're singin' C'mon get happy A whole lotta lovin' is what we'll be bringin' We'll make you happy We had a dream we'd go trav'lin' together We'd spread a little lovin then we'd keep movin' on Somethin' always happens whenever we're together We get a happy feelin' when we're singin' a song Trav'lin' along there's a song that we're singin' C'mon get happy A whole lotta lovin' is what we'll be bringin' We'll make you happy We'll make you happy We'll make you happy  The bucket list travel continues on! We are on our way home, back to Nova Scotia, travelling back across Canada. Initially, we crossed to Vancouver, then sailed on a cruise to Alaska. The latter had a land part of the journey that took us across the state to Dawson City, Yukon. Afterwards, we flew back to Vancouver, drove the jawdropping Sea-to-Sky highway of BC, and continued from thence over the Rockies. Now, we are on the glorious prairie.
The geography I have seen has been staggering: stupendous mountains and expansive vistas, voluminous rushing rivers, weird and enigmatic badlands. The enormity of the landscapes is matched only by the ancientness of their histories. I am surrounded by story. In each place, stories are told of the land, and the peoples of it. Mostly, these are stories of backbreaking work to build railways and farms and homesteads, or to endure the same. How small are our little lives in the great scope of things? In Alberta, I held in my hands the bones of a dinosaur dead 75 million years. Such an experience puts one’s own story and one’s own mortality in perspective. I will pass away as we all will - and even the land will eventually alter into unimaginable forms. It has always been so. My left leg remains numb and dysfunctional due to that post-surgical femoral nerve damage. I can walk on it now. It seems such a small price for being able to eat, travel, sleep, and relate like a person. After two years of brutal treatments for cancer and its complications, it often seemed that anything even approaching normality was forever out of reach. Cancer is a glacier that carves each time it retreats. I continue, however, to see this second remission as an oasis. This inner space is finite and precious. Mindfulness enhances my repose. Each day is a sanctuary to rest within. If only I could stay here forever! Today’s song is Nancy Sinatra’s 1967 version of “You only live twice” from the Bond film of the same name. I remember it fondly as the radio background when I a little girl. I choose it for how it echoes my travel experiences – the sweeping violins speak of seeing from great heights and descending to breathtaking vistas. But I choose it also for the “carpe diem” resonance of its mystic lyrics, hinting at mortality and second chances. You only live twice or so it seems One life for yourself, and one for your dreams You drift through the years and life seems tame till one dream appears and love is its name And love is a stranger who'll beckon you on Don't think of the danger or the stranger is gone This dream is for you so pay the price Make one dream come true you only live twice And love is a stranger who'll beckon you on Don't think of the danger or the stranger is gone This dream is for you so pay the price Make one dream come true you only live twice  We continue to adventure our way through Canada, Andrew and I and our cute little 18-foot trailer. We have crossed out of rugged Manitoba and into the vastness of the Prairies, the majesty of the Rockies, and the splendour of BC’s Okanagan valley. We have made it to the Pacific coast! We are now preparing for our trip to Alaska and Yukon, which leaves from Vancouver in just a few days.
We have kept up a decent photojournal of our travels, with many of the most remarkable of our pictures going to Facebook. But no photos can do this geography justice. Canada is so vast, so varied, so storied, so astonishing. Each day I treasure the privilege of living here. I embrace our common Canadian values as I travel, even as I marvel at my country’s magnificence. In my last post I described the relaxed and spaced-out feeling I had once my treatments had ended. Perhaps I am less floaty as time goes on. Instead, I am mindfully relishing the passing minutes. Some moments seem suddenly like jewels, faceted through the pleasures of nature, the lusciousness of food, and the warmth of my daily companionship with Andrew. I particularly love the freedom from heavy concerns. I know it is an illusion given my terminal status, but I allow myself to drift away from serious worries, as if I were on the current of the waterways flowing through the everlasting landscapes around me. So today’s song choice is “Summertime” written by George Gershwin in 1934 for the musical Porgy and Bess. My favourite cover is the magical 1958 duet by Ella Fitzgerald and Louis Armstrong. This song has been awarded a special Grammy for its longevity and historical significance. When I was working, I would play this version for myself on the last day of school each year. But today, I choose it for its dreamy sizzle so suggestive of a summer haze, and for the comfort and hope within its loving lullaby. Summertime And the living is easy Fish are jumping And the cotton is high Your Daddy’s rich And your Ma is good-looking So hush little baby Don’t you cry One of these mornings You gonna rise up singing. Yes you’ll spread your wings And you’ll take to the sky But till that morning There’s nothing can harm you with Daddy and Mammy standing by. Summertime And the living is easy Fish are jumping And the cotton is high Oh your Daddy’s rich And your Ma is good-looking So hush little baby Baby Don’t you cry Oh don’t you cry. Don’t you cry. Don’t you cry.  When I was finally home after all those months of surgery and treatment in Toronto, I felt strange. I had a floating, depersonalized, relaxed feeling. Was it the medications I was on? Was it the CBD oil? Or was it the euphoric feeling of freedom that comes with a sudden cessation of prolonged effort? It felt like coasting downhill on a smooth path after a hard climb. The newness of it allowed me to push the re-set button on everything – my relationships, my future plans, my enjoyments.
We launched our big trip. We are camping through Canada’s National and Provincial Parks with our 18-foot trailer. Throughout, I remained in that state of fuzzy-headed mindfulness. I really tasted food, I really listened to birds, I really grooved to some 70s music. The beauty and diversity of Canada’s coasts and lake and mountains dazzles my senses. I continue to have numbness and pain in my leg due to that post-surgical femoral nerve damage, and it limits my function, but in my tranquil state I let that go. My joy in being fully repaired from my defect fills me anew each day. Perhaps my “in-the-present” mental state is also the result of being in remission from my inevitably fatal cancer. This remission will not last. Who knows how long I have before I go downhill again? I know one thing – I will enjoy this break as much as I can, floating on the knowledge of my hard-won temporary safety. I have swum to this island, and I will lie down upon it and bask in the sun. The song I have selected for this time is a famous one. Van Morrison sang “Caravan” in 1970, on his celebrated album Moondance. It was a longstanding concert hit of his. I choose it for its expression of delight in the pleasing joys of a camping life, and for its unabashed revelling in life’s simple pleasures. And the caravan is on its way I can hear the merry gypsies play Mama Mama, look at Emma Rose She’s a-playin with the radio La la la la… And the caravan has all my friends It will stay with me until the end Gypsy Robin and sweet Emma Rose Tell me everything I need to know La la la la… Turn up your radio and let me hear the song Switch on your electric light Then we can get down to what is really wrong I long to hold you tight so I can feel you Sweet lady of the night I shall reveal you Turn it up, turn it up, little bit higher, radio Turn it up, turn it up, so you know, radio La la la la… And the caravan is painted red and white That means ev’rybodys staying overnight Barefoot gypsy player round the campfire sing and play And a woman tells us of her ways La la la la… Turn up your radio and let me hear the song Switch on your electric light Then we can get down to what is really wrong I long to hold you tight so I can feel you Sweet lady of the night I shall reveal you Turn it up, turn it up, little bit higher, radio Turn it up, that’s enough, so you know it’s got soul Radio, radio, turn it up, mmm La la la la…  Home! Home! Home!
I get to return home this Saturday! After being in Toronto for surgery and treatments for three months, I can finally return to Nova Scotia. Recovery is slow but progressing. I can walk well with my cane. The results of the femoral nerve MRI proved unhelpful to the neurologist – however, he said that the fact I am improving suggests that the nerve was compressed and will recover in several months. All my tubes are gone at last. My urologist surgeon is pleased with how I am doing and will continue to follow me as I go forward. I am back in NS for only two weeks before my next big adventure. Andrew and I will be taking 12 weeks to drive across Canada, camping with our beloved little trailer. When we get to Vancouver, we will leave on an Alaska/Yukon cruise-tour. Afterwards, we drive all the way back. I so long for a break from all my strivings, during which I can breathe in the beauty of my glorious country. And just plain recover. For the first time in nine years, I will not be at the Canadian Cancer Society’s Relay for Life. I have been a top fundraiser in my area for several years. Ironically, this is the year in which I have required the CCS’s resources the most. Staying at the Halifax and Toronto cancer Lodges for extended periods has truly opened my eyes to the needs met by Relay funds. Please, everyone, donate to Relay – you can never know when you or your loved ones will need CCS help. Where will I be instead? I will be at the National Healthcare Leader’s Conference in…guess where?...Toronto! Yes, I come all the way back, to serve as a patient advocate as part of my duties on the NHLC planning committee. I spoke at this conference last year. I shocked and devastated those healthcare leaders with my story of medical wrongdoing, as per The Cancer Olympics and all the wrong since then. I expect that some in that audience will be surprised to see me alive. Slowly, slowly, my strength and energy returns. I begin to glimpse a future, and I am touched by gladness even as I am staggered by all I have been through. My song choice is therefore “Your Love’s Return,” from 1970, by the euphonious Gordon Lightfoot. The song’s lyrics are the voice of an errant lover, coaxing the woman he left behind to take him back. But I choose to hear in the touching lyrics and gorgeous melody the voice of health returning to a ravaged body, enjoining that body to trust in recovery, and to allow in feelings of celebration. Readers should know that if you click on a song title in my blog, you will be directed to a YouTube which will play that song. I encourage you to listen to this song, and to let the sheer beauty of his voice and his message wash over you. Come to the door my pretty one Put on your rings and precious things Hide all your tears as best you can Try to recall what used to be Roses are waiting for dewdrops to fall Climbing your windows and walls Bells in steeple are ringing, singing Listen to them talk about your love's return Let me come in my pretty one And try to undo what I have done For I must be forgiven now I will not lose what I have won Roses are waiting for dewdrops to fall Climbing your windows and walls Leaves in the garden are falling, calling Listen to them talk about your love's return Open the door my pretty one Wake from your sleep and take me home Open your eyes and look my way I cannot leave your love alone Roses are waiting for dewdrops to fall Climbing your windows and walls Bells in steeple are ringing, singing Listen to them talk about your love's return Your love’s return  Some of you will have seen the two-page spread about me in the Halifax Chronicle Herald. The interview details my astonishing past, and the online version has two videos about my medical error story, one short and one long. I was pleased with the piece, because it brings readers of The Cancer Olympics up to date with my ongoing struggles, and because it brings attention to the shortcomings in our healthcare system.
Of course, I am following the story of Marilyn Inez Rudderham, whose tearful FB post regarding a similar diagnostic delay has triggered a firestorm of support, and yielded her national attention and a meeting with the premier. How powerful social media is! If only I had it back in the day! I hope to meet her one day. Me? I continue. Each day, I go to Toronto General Hospital to the HBOT clinic. Two hours are spent watching CNN on the monotube TV screen. Each day, I either sleep in the chamber or watch agog as America melts down. Some days, sleeping makes no difference – things are just as crazed when I wake up as when I went to sleep. I try to catch the shuttle home, and then eat the hospital food (literally driven over from PMH hospital) dinner they give me. Sometimes I have errands that drag me through Toronto’s subways. Periodically, I have patient advocacy phone calls to make. By evening, the pain of my leg is often so bad all I can do is lie down and not move. Netflix and Crave have become beloved companions. But today holds promise for progress! Today, I hope to lose my one remaining catheter. O joy! My surgeon is pleased with my healing overall and thinks I shall be ready to fly. We will see how my inner apparatus works, after being offline for 15 months! But I digress – many hours ago, I had an MRI (at 4:30 in the morning) to determine the site of my femoral nerve damage. So very slowly, medical answers will be garnered, and hopefully progress made. I get by on CBD oil and Lyrica (a nerve medication), but those sometimes are not enough. I use extra-strength Advil to help with those crushing breakthroughs. I am helped significantly by weekend visits with family and friends. It is so therapeutic to be in a home setting instead of an institution. Often, homesickness creeps in. I imagine the beautiful spring in the verdant Annapolis Valley, while see the grey skyscrapers and listen to the shrieking sirens of downtown Toronto. Only about three more weeks to go. Today’s song is a one for someone like me, who has been on many hard pathways, and one who longs for home. Bruce Cockburn wrote “One day I Walk,” for his album High Winds White Sky from 1971. It has been covered by many, but his version captures an irony, whimsy, and plaintiveness behind the journey, as well as nascent stirrings of hope for a final refuge. Oh I have been a beggar And shall be one again And few the ones with help to lend Within the world of men One day I walk in flowers One day I walk on stones Today I walk in hours One day I shall be home I have sat on the street corner And watched the bootheels shine And cried out glad and cried out sad With every voice but mine One day I walk in flowers One day I walk on stones Today I walk in hours One day I shall be home One day I shall be home  It is now one month from my 13-hour surgery. I am now living in the Princess Margaret Cancer Centre Lodge. Andrew is with me until next week – but I will stay on until mid-May, to finish my hyperbaric oxygen treatments.
I have recovered in many ways, but in one way I have not. Using nerve conductance tests, Sunnybrook neurology has confirmed that I have damage to my left femoral nerve. This condition is screamingly painful and inhibits my ability to walk. They said the nerve is not totally dead – there was evidence of conductance in it still – which means that I may recover one day. They are planning an MRI to locate the exact place of the damage, to determine if the nerve is frayed, compressed, or entrapped. All doctors tell me that it will be a long, long road. Some days, all the pain and work described in The Cancer Olympics seems forlornly distant. So now I get along with the aid of a rolling walker. One day I will graduate to a cane. Today a physio taught me some exercises I can do to strengthen the thigh muscles, which can waste with this condition. I have been started on Lyrica, a medication for severe neuropathy, although I am told that I should not experience pain relief on it for another 6 weeks, as one must build slowly to a therapeutic dose. They offered me fentanyl (!) to help with pain in the meantime – I refused adamantly. They also prescribed CBD oil for the pain. In Ontario, this must be ordered from Shoppers Drug Mart online once the doctor’s prescription is sent to them. The rules state that the drug must be mailed. If one lives far away, and is staying at a residential facility, one can only receive it by mail if the manager of the residence you are in agrees to its arrival by signing a form. The Lodge manager refused! They do not want patient medications to arrive by mail – not even insulin. The other option is it can be sent to a Health Care Provider. Toronto General has a policy that no patient medications can be mailed to them either! Shoppers will not allow it to be picked up from a store either! A crazy loophole here in Ontario, all the crazier since Ontario citizens can now buy cannabis products over the counter at brick-and-mortar stores. The solution? Shoppers agreed to mail it to the Lodge anyway – and when they refuse it, it will be sent to the local post office General Delivery, where I can pick it up. How ridiculous is that? Meanwhile I still have two catheters with which I must contend. Hopefully one of them will be discontinued in three weeks. Other would healing appears to be going well, thanks to HBOT. Today’s song was made famous by The Searchers in 1964, “Needles and Pins.” I chose it because it somewhat captures the nature of the sensation in my thigh…if needles and pins were an Iron Maiden, that is. This song went to Number One in the UK, Ireland, and South Africa. It has been covered by many others, including Tom Petty, but this version gives me the better tingles. I saw her today, I saw her face, it was a face I loved, and I knew I had to run away, and get down on my knees and pray that they'd go away But still they'd begin, needles and pins Because of all my pride, the tears I gotta hide Hey I thought I was smart, I'd won her heart Didn't think I'd do, but now I see She's worse to him than me, let her go ahead Take his love instead, and one day she will see Just how to say please, and get down on her knees Hey that's how it begins, she'll feel those needles and pins A-hurtin' her, a-hurtin' her Why can't I stop and tell myself I'm wrong, I'm wrong, so wrong Why can't I stand up and tell myself I'm strong Because I saw her today, I saw her face, it was a face I loved, and I knew I had to run away, and get down on my knees and pray that they'd go away But still they'd begin, needles and pins Because of all my pride, the tears I gotta hide Oh needles and pins, needles and pins, needles and pins  I did it. I endured a massive surgery to repair the horrible complications arising from my cancer surgery last year.
My surgeon was the world-famous pelvic reconstruction urologist Dr. Sender Herschorn of Sunnybrook Hospital in Toronto. Essentially, he was confronted with a mass of pelvic organs fused together by radiated scar tissue. He patiently spent 13 hours methodically separating the bladder from the vagina and the bowel. Once they were apart, he was easily able to repair the defects. He used other tissue (omentum) to fashion an interposition graft between the organs so they will remain safe and independent. He accidentally perforated the bowel at one point but stitched that up. Remarkably, I remained strong and stable throughout this very long procedure, and had virtually no blood loss. But the bowel was grumpy after all that handling,and began to swell after a few days. Remember from my book The Cancer Olympics, “Efficiently Vomiting Robin”? She made another appearance. I spent days with a nasal gastric tube that siphons off the buildup of bile. An NG tubes makes a person more comfortable, as the fluid pressure creates terrible pain and nausea - but they are bleak contrivances. You can eat or drink nothing. The tube makes you gag relentlessly. The suction sound howls all night and day, making sleep impossible. Simultaneously, an IV misplacement led to me becoming “continuously interstitial” - meaning that my first my arm and then the rest of my body became inflated by misplaced fluid. They could not access a vein to replace the botched IV, so swollen was I. Within hours I looked like the stay-puffed marshmallow man from Ghostbusters. So the day after a huge surgery, I had no proper pain control, no proper hydration, and many futile punctures. I insisted that they use my chemotherapy portacath. They pushed back, saying it was “against policy” because they did not think it was well situated and they had not implanted it. The arguing went on all day while I worsened and suffered. Finally, a no-nonsense IV nurse just pushed everyone aside and accessed the port. It worked immediately. As if that was not enough, the epidural they attempted also went awry, resulting in nerve damage that has resulted in a totally numb, painful, and dysfunctional left leg. It is unclear if it will resolve with time. But despite all of that - every broken and agonized and miserable moment - it has all been worth it. If I can obtain my humanity again, leave behind my freakish defects, become a proper spouse once more, every second of this is worth it. The prospect of normalcy, even a modest one, is overjoying to me. So today’s song is “Bargin” by The Who, from their banner 1971 album Who’s Next. That album has so many awards I cannot even start to describe them. In this song, the emotional soaring voice of Roger Daltrey projects a powerful drive and longing for a craved outcome. Some say it is about connecting with love, others with God. I choose it today as it so well expresses my determination to take back my life and my health. I’d gladly lose me to find you I’d gladly give up all I had To find you I’d suffer anything and be glad I’d pay any price just to get you I’d work all my life and I will To win you I’d stand naked, stoned and stabbed I’d call that a bargin The best I ever had The best I ever had I’d gladly lose me to find you I’d gladly give up all that I got To catch you I’m gonna run and never stop I’d pay any price just to win you Surrender my good life for bad To find you I’m gonna drown an unsung man I’d call that a bargin The best I ever had The best I ever had I sit looking ‘round I look at my face in the mirror I know I’m worth nothing without you And like one and one don’t make two One and one make one And I’m looking for that free ride to me I’m looking for you I’d gladly lose me to find you I’d gladly give up all I got To catch you I’m gonna run and never stop I’d pay any price just to win you Surrender my good life for bad To find you I’m gonna drown an unsung man I’d call that a bargin The best I ever had The best I ever had |
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February 2020
CategoriesAuthorRobin McGee: psychologist, author, |
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