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Adele's "Rolling in the Deep" and Medical Malpractice

9/14/2017

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I am undergoing chemotherapy Cycle Number Three.  All I can do is shudder.

Cycle Two was tough.  Much tougher than the first cycle.  The fatigue was crushing, dizzying, mind-numbing.  The GI disturbance lasted the entire cycle.  The Vectibix rash is so hot and painful that my face bleeds.  Mouth sores have set in, making eating a challenge.   By the last day of the cycle, I am about 75% human.   It can go down to 25% on the bad days.

One more cycle, and then I have a scan to determine if the chemo is working at all.  If it is, perhaps three more cycles.   If not: well, that does not bear thinking about right now.

Often, my mind goes to the doctors whose neglect resulted in my catastrophic outcome.  The first chapter of The Cancer Olympics is free online.  It generates a lot of intense reactions.  Some physicians have responded saying that it is the worst story of medical malpractice they have ever heard.  Ordinary people react with shock, fear, and disgust.  I was particularly gratified by this post on The Cancer Olympics Facebook page: “RAGE!  That is what I feel after Chapter One.  I hope you sued TF out of each one of those four miserable, pathetic, full of themselves, worthless, wretched dumbasses.”  Feel free to Like that comment!

Adele’s “Rolling in the Deep” from her 2011 Album 21 expresses a powerful anger, raw hurt, profound loss, and a cry for revenge.   Apparently, she wrote it only hours after separating from the man who had scorned her.  The song reached number one in 11 countries and the top five in many more regions. It was Adele's first number-one song in the United States, remaining at the top of Billboard for seven weeks. “Rolling in the Deep" received three Grammy Awards for Record of the Year, Song of the Year and Best Short Form Video.   I was astonished at how much everyone responded to it.  It seemed to strike a huge chord with audiences.  To me, its worldwide resonance says something about the number of hurt and betrayed people out there.  Most of us have been badly burned by someone.

So today’s musical selection goes out to Doctor’s One, Two, Three, and Four, whose irresponsibility and indifference caused me to lose my health, my career, my income, and my life:

There's a fire starting in my heart
Reaching a fever pitch, it's bringing me out the dark.
Finally I can see you crystal clear
Go ahead and sell me out and I'll lay your ship bare
See how I leave with every piece of you
Don't underestimate the things that I will do
 
The scars of your love remind me of us
They keep me thinking that we almost had it all
The scars of your love, they leave me breathless
I can't help feeling
We could have had it all
(You're gonna wish you never had met me)
Rolling in the deep
(Tears are gonna fall, rolling in the deep)
You had my heart inside of your hand
(You're gonna wish you never had met me)
And you played it, to the beat
 
Baby, I have no story to be told
But I've heard one on you
And I'm gonna make your head burn
Think of me in the depths of your despair
Make a home down there
As mine sure won't be shared.

You had my heart inside of your hand
But you played it, with a beating
 
Throw your soul through every open door
Count your blessings to find what you look for
Turn my sorrow into treasured gold
You'll pay me back in kind and reap just what you sow

We could have had it all
 
You had my heart inside of your hand
But you played it
You played it
You played it
You played it to the beat.
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Chemotherapy and Etta James' "At Last"

8/12/2017

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Slainte!

The Irish word for health!

I have just returned from Ireland, a pilgrimage I made with my three sisters.  The trip was everything I hoped it would be.  It had astounding views, delightful food, and smooth and nourishing Guinness.  We sisters had lots of laughs together, as well as some deep spiritual moments. We marveled at the Belfast shipyards where my grandfather and great-grandfather worked, we were in awe before the prehistoric Newgrange tomb 1000 years older than Stonehenge, we were astonished by the rugged beauty of the green landscape.  It was truly the adventure of a lifetime.  I was so grateful to go.

Readers of The Cancer Olympics will remember that my original cancer diagnosis was delayed by two years by medical misconduct.  They will also remember that I fought the province to get the best-practice chemo for my kind of cancer.  Although we were successful in getting FOLFOX chemotherapy added to the formulary in 2011, the approval came too late for me to receive it.

Shockingly, I found myself in the identical situation with my recent cancer recurrence.  A misread CT scan in December missed the recurrence; and yet again, the drug I need is outside the provincial formulary.

The very day before I left for Ireland, I found myself in the centre of a media storm!  CBC radio and new, learning about my plight, immediately provided coverage and advocacy:
A CBC web article: http://bit.ly/2uumVbF
CBC News coverage (at about 8:40 minutes in): http://bit.ly/2vJBsTn
CBC Information Morning radio interview: http://bit.ly/2vBfjqD
 
My own contacts within the government (those who helped me last time) also got involved.  By late that same day, I was called by the Department of Health and Wellness to tell me that I would be granted a special exemption – that I would get Vectibix after all.   It remains “under consideration” for addition to the formulary for all others who need it. 

So I start!  After seven years of striving, I will finally get FOLFOX chemotherapy, with Vectibix as a special agent.  It is such a strange feeling.  So today, my musical selection is the rapturous “At Last” by Etta James.   This song conveys a feeling of deep gratitude and relief for the consummation of a longed-for relationship.  I used to play this song on the last day of school, to capture my feelings of joy at the arrival of summer, but now I play it to express my elation about starting the treatment I deserved years ago.  Those of you who have undergone chemotherapy will laugh at the idea of a love song going out to it.   But, nevertheless, I dedicate this song to FOLFOX:

At last
My love has come along
My lonely days over
And life is like a song

At last
The skies above are blue
My heart was wrapped up in clover
The night I looked at you

I found a dream
That I could speak to
A dream that I can call my own
I found a thrill
To press my cheek to
A thrill that I have never known

You smile
You smile
Oh and then the spell was cast
And here we are in heaven
For you are mine
At last 
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Coldplay's "Clocks" and cancer recurrence

6/30/2017

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Coldplay’s song “Clocks,” with its famous urgent piano intro, is about mortality and running out of time.  It lends itself very well to my current announcement.

I am absorbing the horrible news that my colorectal cancer, six years in remission, has now returned in my pelvis.  My struggle to survive that first cancer is described in my book, The Cancer Olympics.  Hopefully, I will learn if the tumour is operable on Thursday, when I meet with a surgical oncologist. 

The lights go out and I can't be saved
Tides that I tried to swim against
Have brought me down upon my knees
Oh I beg, I beg and plead, singing

I had an emergency stent put in my ureter yesterday.  The tumour was pressing against it, causing kidney to balloon and my blood pressure to rise.  I feel so much better already. 

Come out of the things unsaid
Shoot an apple off my head and a
Trouble that can't be named
A tiger's waiting to be tamed, singing

Still no idea about whether I can travel this summer.  I will not be back to work in September, as I will need many months off to recovery.  Indeed, it is not clear whether I can ever work again.

Confusion that never stops
Closing walls and the ticking clocks gonna
Come back and take you home
I could not stop, that you now know, singing

My “clear” CT scan from December was reviewed due to the positive PET CT I just had.  It has been determined to be a false negative.  The mass was evident on the December scan, but mistaken for my right ovary.  So, sadly, I have lost 6 months against this metastatic disease due to a “Doctor Five.”   Readers of The Cancer Olympics will understand that number.

Come out upon my seas
Cursed missed opportunities am I
A part of the cure
Or am I part of the disease, singing

My final meeting with oncologist Mark Dorreen was touching for both of us.  I was his very last patient on his last day of work before retirement.  I asked him what chemo I was likely to get.  He answered “FOLFOX” - as told in The Cancer Olympics, this was the drug we successfully fought for in Nova Scotia, but too late for me to receive it.  We all laughed at the irony.   But I saw tears standing in his eyes.

You are, you are
You are, you are
You are, you are

My husband had a tumour removed last week.  Today it was determined to be a benign lipoma.  At last, a mercy.

And nothing else compares
And nothing else compares
And nothing else compares

Time for bed.

You are, you are
Home, home, where I wanted to go
Home, home, where I wanted to go
Home, home, where I wanted to go (You are)
Home, home, where I wanted to go (You are)
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Paint it Black

5/25/2017

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Many of you will remember the song “Paint it Black,” by The Rolling Stones.   Driven by a relentless sitar beat, the singer expresses with anger his desolation over something terrible that happened to a loved one.  In his grief, he wants to see the outside world turned black, to reflect his own darkness.

I see a red door and I want it painted black
No colours anymore, I want them to turn black

I find myself overwhelmed by the same feelings over the past few weeks.   My beloved family doctor “Adam Good,” my rescuer in The Cancer Olympics, has himself been struck down by cancer.   He has had surgery to remove a mass behind his eye and awaits radiation in June.   To show just how caring a doctor he is, he called me at home to strategize over my ever-increasing cancer blood markers – in retrospect, it was the day he  learned his own diagnosis.  I cannot even imagine being able to do such a thing, knowing as I do the horror he must have been feeling.  And the very fact that he - the kindest man alive - could be so afflicted by this bitter disease has left me choked up and infuriated.

No more will my green sea go turn a deeper blue
I could not foresee this thing happening to you.

And my despair is compounded by my own terrible news.   My cancer blood marker (Carcinoembryonic  Antigen)  is now five times higher than it was this time last year.  Seven years to the week of my diagnosis, last week, I was back at the Nova Scotia Cancer Centre.  Oh, how hard to be in that waiting room again.  And guess who was my oncologist there?  None other than my previous saviour, Dr. Mark Dorreen, another hero of The Cancer Olympics.

He is very concerned by the trajectory, and ordered a PET-CT, which I will have in 2-4 weeks.  He said the trajectory is likely to continue, and is predictive of recurrence.  Even if the PET-CT is negative, if the CEA continues to rise, I will continue to need repeated scans.  “Something will declare itself eventually,” he said.  Treatment will depend where my metastasis is, but will likely be chemotherapy for stage IV disease followed by surgery.  My survival chances would diminish to 10%.

He is retiring at the end of June.  How will I function, in a world without him and without Adam Good? 

And once again the misery of having to tell my son, tell my family members, and tell all of you.

Maybe then I'll fade away and not have to face the facts
It's not easy facing up when your whole world is black.

I wish I had answers for where this leaves me, with work, with my patients, with my summer plans, with anything.   

So once again, I suit up for the hurdles.
 
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How to Write a Cancer Memoir

2/16/2017

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Cancer narratives have the power to guide and inspire others.  However, writing a cancer memoir from one’s own life requires a certain kind of balance.  You have to juggle the emotional pain of your lived experience with the exigencies of producing a work of art.

Having written The Cancer Olympics, and having recently worked on production of an audiobook of the same, I understand that challenge.

What advice might I have for an aspiring cancer memoirist?  Here are some ways of managing your own feelings while producing an engaging and informative book:

  1. Work from notes.   A journal, a blog, a diary, photographs – all these can help you stay grounded and accurate as you chronicle your experience.  I used my own private blog and social media communications to guide me. ​
  2. Don’t shy away from describing your emotional experience.  Most readers are very interested in how cancer patients face their anxiety.  I remember defying an editor who urged me to drop what she called “the wobbly bits.”  She thought readers wanted to know more about the scientific details of my cancer treatment than my feelings.  Since, I have heard from many readers that the description of real-time emotion was the most compelling aspect. 
  3. Consider professional therapy to address the trauma of cancer.  Turning traumatic memories into narrative memories can be greatly aided by psychological help.  I am a psychologist in my day job, so I can say that with authority.
  4. Write. Weep.  Walk away.  Come back. If you get overwhelmed emotionally at times while writing, that is understandable.  You may need to step back and come at certain passages another day.  Keep your Kleenex handy.
  5. Ensure technical accuracy.  I had cancer doctors and pharmacy experts review my treatment descriptions, to ensure that all the relevant details (and spellings!) were correct.  We patients can become “jaded” by immersion in medical jargon: share your medical content with novice readers to ensure it is understandable.
  6. Hire a professional editor.  I remember wondering: “are there two t’s in vomiting?”  “Oh, wait, I have two periods after the word “anguish.”  The truly trained and dispassionate eye will catch those minor typos that can beset all writing, but particularly emotional writing.
  7.  ​Stay with it.  Although there are many struggles in writing a cancer memoir, there are also great rewards.  Dozens of people have contacted me to say that reading The Cancer Olympics led them to follow through with needed screenings: many reported being saved from pre-cancerous lesions.  And many, harmed by medical error as I was, respond with gratitude to my illustration of fighting for medical justice.  Just last week, a parent contacted me to tell me, “our daughter was so inspired by your book, she read it cover-to-cover many times…right up to her cancer death, two months ago, at age 30.”  To think my book made a difference in the life of that young woman moves me deeply. 
 
Yes, writing your cancer story takes emotionality as well as emotional restraint.  But the recompense is worth it…for you, for your readers, and for all encouraged by your example.  You are helping others with your story, no matter what their own story may be.
 
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Facing scan-anxiety: small acts of hope and defiance

12/12/2016

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Tomorrow is my five-year CT scan.  Two days later is my five-year scope. 

My rational mind knows that these tests are simply pictures of my reality.  And rationally, I know that whatever they reveal I will somehow cope.

But my subconscious mind has other ideas.  It screams “NO! NO!” and recruits every cell in my body to push back.  It pummels me at night with bad dreams.  It ignites those flight-or-fight neurons, lighting them up like my Christmas tree.

To be a cancer survivor is to live forever in between the world of the sick and the well.  You are not in active treatment – but then again, never again can you live unselfconsciously among the healthy.  For me, this limbo feels like a true abyss, as my mother had a fatal recurrence of her colorectal cancer after 14 years remission.  I never can think of myself as "cured."

The cancer deaths of others grieve and oppress me.  My brother-in-law Gerry Porter died last week of brain cancer, only 54.  Larry Broadfield, my mentor through survivorship and an integral figure to the story behind The Cancer Olympics, died in October. 

So how does one go forward?  I reflect that I am lucky to have made it as far as I have.   In 2010, I was facing a grim prognosis – at one point, estimated to be only a 4% chance of living the next five years.   I tried to defy those bleak odds by small acts of hope.  That Christmas, I put away five tree removal bags in my Christmas boxes.   Yesterday, when decorating said Christmas tree, I found the fifth one.  It made me smile.
​
So how will I cope with scan-anxiety through this week, as I face my upcoming tests?

I plan to go out and buy another five Christmas tree removal bags.     
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Larry Broadfield.  I can't go on.  I'll go on.

10/10/2016

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I have a sad announcement to make.  My dear friend Larry Broadfield died October 4th 2016, of colorectal cancer.  He was 60 years old.
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Larry spoke at the Halifax and Wolfville book launches of The Cancer Olympics.  Six years in remission, he learned between the first launch and the second – only three weeks apart - that his disease had recurred in his lungs.  During his speech, he told us about the lesion, and then announced that nonetheless he was getting married that summer.  The crowd cheered and applauded him.

Larry was the lead pharmacist in the province responsible for cancer drugs.  He devoted (and I mean devoted) his entire life to improving Nova Scotian’s access to best-practice chemotherapies for decades.
But Larry has a story – a shocking one that entwines painfully with the story described in The Cancer Olympics.  During his life, he asked me to keep it under wraps.  When I saw him at his only days before his death, in his living-room-turned-hospital-room, he asked me to share it once he had died.

When Larry was diagnosed with stage IIIC rectal cancer in 2007, he was a member of the then-in-place provincial committee that determined which cancer drugs were funded.   Larry recused himself from the voting about FOLFOX when it first came up for consideration, given his condition.  He was personally and professionally staggered when the committee voted not to allow it for curable rectal cancer cases in NS.

As an expert in chemotherapy, Larry knew that FOLFOX was his best chance at cure.  So he began his own letter campaign, begging the government and various officials to allow him to have it.  He was writing to people that he had worked closely with for years – people he met at the workplace water cooler.  But they refused him.  Repeatedly.

Desperate, he evoked a little-known clause in the Canada Health Act.  He could get FOLFOX if he could find a doctor in another province who would treat him with it – if that province allowed the drug for its citizens.  Using his contacts, he found an oncologist in Moncton New Brunswick who would give it to him for the many brutal cycles he required.

It was winter.  Driven by his son, every few weeks Larry drove across the frozen Tantamar marshes to be infused with FOLFOX for hours, and then to drive back home.  Seven hours of driving each time.   He said that they used to pull over to allow him to vomit in the snow.  His son lost his year at university, so intense were Larry’s care needs.

When Larry was able to go back to work at Cancer Care Nova Scotia, he returned to his hard work striving to provide Nova Scotians with safe chemotherapies.  But in his heart he struggled with the anguish and irony that he himself could not access the therapy he deserved in Nova Scotia – and that he and his family suffered tremendously.

And then the events of The Cancer Olympics took place.   Many, many letters advocating for FOLFOX came to the Minister of Health.  Officials approached Larry at Cancer Care Nova Scotia to help craft the government response.  Larry again recused himself – he straightforwardly told the questioning officials that he could not be impartial, and could not weigh in on our request.  But when his office door was closed, he was overwhelmed with emotion.

And then the day came when, due to our lobbying, that the relevant committee had to vote on  extending the formulary to cover FOLFOX.   Larry recused himself and sat out in the hallway, his head in his hands.  When the door burst open at the end and a colleague crowed to him, “Guess what Larry?  We just approved FOLFOX for Nova Scotia!”  He looked up with a rush of emotion – relief for the public, followed by a wave of bitterness.

I met Larry for the first time when I was doing research for The Cancer Olympics.  He was to teach me the pathways for cancer drug funding.  But knowing I was the woman behind the FOLFOX lobbying, when he met me, he looked both ways down the hall before closing the door to his office.  He poured out his story to me as I poured out mine to him.  I remember saying to him, tearfully, that the FOLFOX triumph was truly his accomplishment.  He was its first crusader and champion, and the first to put a personal face to it for his colleagues.  He replied that he failed in his appeal because he was only one voice.  The Cancer Olympics community succeeded because we were many voices.

Larry believed that getting FOLFOX allowed him six quality years of life.  But I cannot help wondering if the terrible stress of having to travel for his chemotherapy undermined the cure he could have had.  Perhaps he would be alive today if he could have accessed it more easily.   I pray that, thanks to our advocacy in making this drug available in Nova Scotia, many other Larrys were spared such hardship - and perhaps saved thereby.

Larry worked hard for Nova Scotia until the very end.  Even though he has been bedridden for months, it was only three nights before his death that he thought it was time to formally step down from his role... and he added that he would be happy to remain in an advisory capacity!  Larry was my mentor and hero.  He taught me how to face cancer and death; he was remarkably open about both.  True pharmacists, he joked, can talk about anything.

Larry’s death has taken the stuffing out of me.  It has made me feel weak and winded.  And lost.  Every cancer death is devastating in a unique way to survivors, but this one brought me to my knees.  Larry is the only person I ever met diagnosed at the same late stage as myself.  His survival was my beacon of hope for many years.  Today, I mourn a great man, a great fighter, a great colleague, and a fast friend.  

What is that line from Samuel Beckett?  “I can’t go on.  I’ll go on.”  
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Larry would like that.
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Author of #TheCancerOlympics decorated by the Governor-General of Canada

8/7/2016

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On 13 July, 2016, I was decorated by the Governor-General of Canada with the Sovereign's Medal for Volunteers.  Why?  Because of the events described in The Cancer Olympics.  The text in the official programme described bringing FOLFOX chemotherapy to Nova Scotia, a feat brought about by the advocacy of my supportive community.  

The ceremony took place at Pier 21 in Halifax.  About 70 Atlantic Canadians were receiving Honours that day.  It was beautiful and moving and patriotic. I found it hard not to tear up hearing the stories of the other recipients: a man who saved a woman from a burning car just before it was engulfed in flames, a woman who ran 7 marathons in 7 days for breast cancer awareness, a crew who subdued a derelict diesel-filled vessel during a storm and averted an environmental disaster.  And others with more quiet but equally noble dedication.  For example, the woman sitting next to me had offered free income tax services for the disadvantaged out of the Halifax Library for over 20 years.

As I awaited my turn, I marvelled.  How did I get here, among the honourable? It seemed only yesterday that I was too sick to even walk.  

We were lead in procession to bagpipes and seated on a stage bedecked with a brave Canadian flag.   When they announce your name, you must step forward to the front of the stage.  You face the audience as they read your achievement.  Then they say your name a second time, and you cross the stage to a waiting Governor-General.  As he placed the medal on a magnetic hook on my chest, he said, "Thank you for your service to our country."  I was too overwhelmed to speak, thinking, "OMG I am only inches away from David Johnson!"  At the end, we sang the National Anthem, and were led out past the cheering and applauding crowd.  I saw my 21-year old son there, clapping enthusiastically, wearing his very first suit.  A gracious reception followed.  It was a magnificent and moving occasion for me.

But it invited sober reflection as well.  The Cancer Olympics relates the story of serious medical error as well as herculean patient advocacy.  There is still so much to do, to improve the safety and quality of healthcare.  I am still striving, as the advocacy editor for Cancer Knowledge Network, as well as on patient safety and engagement initiatives, to do my part in that struggle.

The medal was also given in part due to my volunteer work as a peer mentor with the Canadian Cancer Society, providing guidance for those newly-diagnosed and undergoing treatment.  The Cancer Olympics is my story, but for many their cancer story is just beginning.   I aim to help them to tell it, and be heard.

Is receiving this medal the Hollywood ending to my own story?  Not a bit: fighting cancer is a story that never ends.   
 
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The Cancer Olympics wins Pinnacle Book Achievement Award

5/1/2016

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I have finally made it.

I am a survivor at last.

According to various international guidelines, one is not a cancer survivor until five years from the last day of one’s last treatment.   For me, that was 3 April 2016.

Passing that milestone matters.  I notice in the way I think, the way I breathe, that something has shifted.  To commemorate my day, I replaced the Buddhist prayer flags on my back fence.  Readers of The Cancer Olympics will recognize those flags as the evocative, numinous symbols of a longed-for outcome.  They were tattered and spent.  When I replaced them with fresh colourful flags, I did in the name of my brother-in-law who was recently diagnosed with brain cancer; now, the prayers flow out to him, and to all who continue to live and to fight.

And another very different achievement has come my way.  The Cancer Olympics is the Winner of the Pinnacle Book Achievement Award in the Inspiration Category!  The award is from the National Association of Book Entrepreneurs.  And yes, fitting to the book’s title, it is a gold medal. 

This make the fifth literary award for The Cancer Olympics, my true story of a fight for survival, medical justice, and fair government drug policy in my province of Nova Scotia.    As the book grows in recognition, I grow too.  I have spoken at public events, on radio shows, on podcasts, in lectures, and conferences, and in patient safety forums.  Each time is a big challenge and each time is a small victory to share my story of “the perfect storm of medical mismanagement.”   By posting the first chapter online, I hope to make the world a little safer from serious medical error.
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Because I am still alive to tell it, five years later.
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Guest blog: Pat McDonald on surviving stage IV ovarian cancer 

2/6/2016

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Readers of The Cancer Olympics will remember the scene in which I sat down in the chemotherapy waiting room next to a woman who told me she was a survivor of stage IV ovarian cancer.   I was gobsmacked.   Years later, I met her again by chance.   I learned her name: Pat McDonald.   Since then we have been friends and fellows fighters in the world of patient education and advocacy.   Here is her inspiring, astonishing, and heroic story.
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​Pat McDonald:  My Story
 
I was diagnosed Oct. 20 2002 with stage IV ovarian cancer, metastasised to my lungs. Diagnosis Day, or D-Day, as I sometimes refer to it.
 
I will back up from that historic (or hysteric) day to three months in July 2002 when I started having a flare up of my arthritis.  I was a daily walker for an hour, a sometimes tennis player and bicycle rider, and now all my activities came to an abrupt halt.   After a few visits to my family doctor for medication changes and cortisone injections, I briefly improved.   I was referred to my rheumatologist after a re-occurrence and, after examination and blood work, was started on methotrexate, a drug also used as chemotherapy for cancer patients.  I jokingly said, "Well, I guess I won't get cancer."
 
As a Registered Nurse, I knew the importance of taking care of my own health, so I always kept a log of my own health issues and doctor appointments, and yearly checkups.  My yearly kitchen calendars, which I keep, also served as a reference, and I can see that I was at my family doctor and rheumatologist for complaints of leg pain, constipation, discomfort on eating, and gas, some of this attributed to the side effects of methotrexate, but also signs of ovarian cancer.

At one point, I had decided to walk through the leg pain, so I tried to begin exercising, and complained to my doctor of not having my normal stamina, which we concurred, was a result of no activity for three  months.  I know my lungs were then checked and no abnormalities were found.  I distinctly remember that because two medical residents were also at the office that day, and I joked that they were getting practice using a stethoscope.  No way do I blame any of the Doctors or myself, now knowing that ovarian cancer is called "The Whispering Disease" for a reason. There is NO test to detect it.

That was two  weeks prior to D-Day, and on a Sunday morning I awoke to bloating and difficulty breathing, so immediately went to the ER.
 
Within two hours I was given an X-ray, EKG, blood work, ultrasound, and internal examinations, but never did I think of cancer.  It was the resident gynecologist who, after reviewing tests and doing an examination, said, with her back to me, "step down from the table Mrs. McDonald, you have stage IV metastasised ovarian cancer.”  I can still hear those words.  Stunned is the only word that comes to mind as I stumbled out to the waiting room to get my husband, John, and, with me  in a johnny shirt and bare feet, I am crying that I have cancer.  Upon returning together to the exam room, I was told that I would then have my abdomen and lungs immediately drained.  It was extremely scary to see so many bottles filled with bodily fluids containing cancer.  Together, after somehow returning home, through the tears, the disbelief, the many breakdowns, we somehow found the strength to tell our three sons, other family and friends by numerous phone calls, and emails.  I think we operated on autopilot for awhile.
 
Then I had three chemos, a complete hysterectomy, then three more chemos.  Post surgery was complicated by an infection which resulted in a longer hospital stay.  Losing my hair was one of the most traumatic experiences.  I reached the magic number of below 21 on the Ca 125, a tumour marker, after five chemos, so I was reassured that chemo was working.
 
Although the doctors had so gently and kindly explained my chances, when I anxiously pressed for some statistics it sure was difficult to accept that I was looking at an unimpressive 20% chance to survive to five years. You can imagine the jolt when you hear this for the first time.  However, after chemo #5, a doctor. said "when, not if, you come for your 5-year discharge" and this positive outlook from the medical profession went a long way in my mind.
 
Six years later, I was diagnosed from my yearly mammogram as having breast cancer, so this resulted in more surgery, radiation, chemo, hair loss, and 75 various appointments within a year.  I always knew I was more at risk for breast cancer after the ovarian cancer diagnosis, and this was also confirmed by genetic testing.
 
In May 2014, again from an annual mammogram, then a follow-up CT scan, I was given the ugly diagnosis of metastatic cancer in my lungs, the other breast and a rib.  Immediately, I had a procedure done on my lungs to remove the fluid and prevent more from accumulating by doing a pleuredisis, where talc is inserted into the pleural space.  It was six painful days in the hospital, with a complication of an overdose on pain meds, resulting in an antidote at 3 am, and waking to see the crash cart and many staff around me. I will be closely monitored every three months, take an estrogen blocker, and continue to live as if I am living with a chronic disease.
 
As I reflect on what has worked for ME, I know it was many things.  As I struggled to go from the caretaker role to being on the receiving end, I came (at first reluctantly), to accept all the wonderful help that was given.  After my hysterectomy, a nurse gave me "hugs and drugs" in the middle of the night in the hospital, there were many phone calls, cards, visits, emails, requested jokes, tons of food when I got home, prayers from many, the visits from my church, my caring family, and much more.  The best support came from my husband who immediately retired and took care of me.
 
I read every book I could find about stories of other cancer survivors, looking for their reason of success: used visualization of Pac-man gobbling those cancer cells; thought of the coming summer, running up that final hill to the summer cottage, then riding my beloved lawn tractor; listening to a song in my head, renaming “Hit the Road Jack,” to “Hit the Road Cancer,” then planning a trip to Las Vegas for sunshine and shows with my husband as soon as chemo was over.
 
In 2002 I soon got involved with Ovarian Cancer Canada to co-chair the Walk of Hope in Halifax, did that for 6 years, served on the Board of Directors, teach well women the warning signs, and tell my story to many medical professionals so they can learn too.  I have felt very blessed to have met so many courageous women with ovarian cancer, sharing a common bond through our journey.  I have realized that  this been the best therapy for me during the past 12 years, and now know that scientific proof of helping others improves your health.  It is called “the helpers high.”  Sadly, I have lost too many friends to this disease, but it makes me more determined to carry on, so I continue to do whatever I can to spread the word.   I now refer to my involvement with Ovarian Cancer Canada as my "accidental passion," and it will continue as long as I live.
 
Just to add to my drama, in 2014, at age 69, I accidentally discovered that I was adopted.  I found my “new” family  with the help of a good friend.   This revelation, although emotionally exhausting, proved the importance of knowing one’s genetic background, since I could have possibly escaped a late diagnosis of ovarian cancer.   My biological family is filled with relatives who carry the genes, BRCA 1 and 2, and many cases of breast, ovarian and prostate cancer.  So the previous adoptive family information at Genetics in Halifax had to be discarded.   I thought about being a part of a study at Sunnybrook hospital, Toronto, but I felt too overwhelmed to get involved in another project.  In October, my husband accompanied me to Ontario to meet two half siblings and many other “new” relatives who welcomed me into the family.  My friend found the ultimate gift – a visit to the actual house where Florence had lived with another husband, and it is comforting to know that she spent 8 years is a happy environment without the poverty that she had endured.  She died at 59 of heart failure.
 
This is now the beginning of 2016, and I have recently been told that the current chemo is no longer working, and I possibly have only months to live.  That would fill a book, but I am extremely grateful to all the friends, family and newcomers who put the puzzle together, giving me peace.
 
Thanks to all of you for reading my story, and good health to all…
 
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    Robin McGee: psychologist, author,
    and survivor.

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