the real people behind canada waits


Yes, it’s a slug.

Last November, Globe and Mail health journalist Andre Picard encouraged Canadians to share their wait time stories through the hashtag CanadaWAITS.

I am a woman whose breast cancer diagnosis last year took three months from the time I went to my family physician with a lump in my breast to the day I got diagnosed. I can’t find any Canadian standards online about what the ideal wait time should be before diagnosis, but eleven years ago, a CBC article indicated that the median wait time in my home province of British Columbia was 2.9 weeks in the Fast Track Program or 4.1 weeks for those not in that program, like me.

Fast forward to 2017, I waited a total of 12 weeks in British Columbia from the time I presented to my family physician to when I was diagnosed.

Some smart ass on Twitter tried to debunk the whole Canada Waits concept by tweeting that the reasons for the wait times weren’t known so wait time stories were meaningless. I have news for you pal:  stories are never meaningless because there are real human beings behind these stories.  Patients are not statistics.  We might be a N of 1, but 1 is enough.

I’d bet money if you bothered to actually ask the patients about their wait times, they could give you insight into the reason for the delays.

Here is my story, presented without commentary (save for the occasional descriptive adjective):

  1. Time between my initial family doctor visit and mammogram was over a week. I called the mammogram place to set up an appointment the moment I left my doctor’s office and the first available appointment was nine days later – this was for both a screening mammogram (in my right breast) and a diagnostic mammogram (a more extensive mammogram in my ‘suspicious’ left breast).
  2. I was told at the mammogram (in a public waiting room, no less) that I needed an ultrasound right away and they could do it on the spot. But that the radiologist said my family physician ‘forgot to check the referral box’ for an ultrasound, so I would have to go back to my doctor for another referral.
  3. I dutifully called my family doctor, who was mortified and immediately sent over another referral. The soonest I could get in for the ultrasound was three weeks later, despite the fact I had a ‘concerning’ mammogram.
  4. At the ultrasound I was told (again in a public waiting room) that I needed two biopsies. They could have scheduled these biopsies three days later, but I made the mistake of mentioning that I have a bleeding disorder. The radiologist at the diagnostic imaging centre said they would not do my biopsies and that I needed a referral to the women’s hospital – which my family doctor immediately arranged.  (Note:  I never did meet this mysterious radiologist who held a lot of power over me – all the messages from him/her were relayed through technicians and receptionists).
  5. I received a call ten days later from the women’s hospital, telling me that I would need to see a hematologist before they would do my biopsies, which were scheduled 33 days after my ultrasound because the breast clinic at the women’s hospital was closed over Christmas holidays.
  6. My biopsies then got delayed an additional 16 days because the women’s hospital refused to start an IV on me so I could be infused with a clotting medication before my biopsies. This had to be done at the hematologist’s clinic, at a different hospital, on the same day I had my biopsies. The hematologist’s clinic was full – hence the extra delay. (On the day of my biopsy, I was given IV meds at one hospital and then my husband had to rush me over to another hospital to have the biopsies done).
  7. I received a call with my breast cancer diagnosis one week after my biopsies. Two days later I was meeting with a breast surgeon, and two weeks later I had a partial mastectomy. I began radiation therapy 5 weeks later.

It is interesting to deconstruct these delays. The main reasons for my elongated wait time were:

  1. The radiologist refused to do an ultrasound on the spot because my family doctor did not check the correct box on the referral form = 21 day delay.
  2. The women’s hospital was closed for between Christmas and New Years = 10 day delay.
  3. The women’s hospital would not start an IV for my meds before my biopsy = 16 day delay.
  4. The rest of my delays seem to have to do with old-fashioned wait times at both the diagnostic imaging centre and the women’s hospital. This might have to do with the volume of patients and/or staffing or physical space issues; I don’t know. One delay had to do with me having a bleeding disorder, so I guess that’s my own damn fault. (Note: yes, I did advocate for myself, calling receptionists and politely and persistently asking to get on cancellation lists and pleading my cause – to no avail).

I was speaking to a friend who had breast cancer and was treated in Hong Kong over ten years ago, and she went from mammogram to surgery in FOUR DAYS. I am not sure what best practice is – maybe there is such a thing as being too rushed. But there’s a big difference between 4 days and 84 days.

Did my cancer grow during that time? Sure it did, but I had (have?) a sluggish, slow-growing type of cancer so who knows if this caused me much physical harm. The harm I did experience was of the emotional kind instead.

In 1999, a research study in British Columbia found: These findings confirm that, regardless of its outcome, waiting for definitive diagnosis after an abnormal screening mammogram is an intense and often agonizing experience for the women involved and for their families.

We knew of this ‘agonizing’ time 19 years ago and I don’t think wait times have decreased since then.  As Adriana Barton pointed out in her recent superb article, the emotional harm caused from cancer treatment is well researched, but from my perspective, there are little to no mental health support or services offered to cancer patients.

I’d add harm is caused even before you get a diagnosis – so this includes the excruciating waiting time thrust on the scores of people who have benign results, not just those of us who end up with cancer.

In my experience, the health system does not seem to care one whit about preventing emotional suffering and harm. Patients and families care, most clinicians care, but health care administrators and government bureaucrats who create these punitive policies and processes? Not so much. Wait times are shrugged off as the Canadian Way.

I only hope that the more we share our real human stories behind #CanadaWAITS that somebody with influence and a heart will finally pay attention.  Patients and families, refuse to be silenced, even if they write you off as difficult or hysterical.  This is undue suffering and this is not okay.

my view on world cancer day

The following is a version of an essay I wrote for The Mighty about World Cancer Day.

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I feel conflicted about awareness initiatives like World Cancer Day. I am a person who endured breast cancer treatment last year. My diagnosis was on February 6, 2017, so my oddly termed ‘anniversary’ is two days from now. The scar on my breast and the pain under my arm means that I am very aware of cancer. I have not forgotten it.

I also am uncomfortable with whole concept of Breast Cancer Month. I stand in fear at the grocery store the entire month of October fretting that I will be asked for a donation for breast cancer and I will either burst into tears or explode into a rage. I’d sputter out, “I had cancer. Now you want me to give money too?” in between my sobs to the poor unsuspecting cashier. Awareness days will do that to people who have had cancer.

I hanker a guess that we are all aware of cancer. I’d say the world is too aware of many types of cancer, especially breast cancer. Breast cancer has led to a proliferation of pink merchandise and pink ribbons everywhere. In my experience, that awareness doesn’t help with dispel fear – in fact, it might feed it. Many people were afraid of my cancer. I lost friends and family members who seemed to think that cancer was contagious, or saw me as an unwanted reminder of their own mortality. They were so aware of cancer that they were terrified of it.

When I first was diagnosed with breast cancer I thought to myself, well at least I won’t have to explain it to anybody. That much was true. The response after the initial flurry of flower deliveries at diagnosis was mostly silence. Someone told me, ‘well, it is just your turn to get cancer,’ like it was no big deal.

That did not leave me immune to judgment about how it was my fault that I got cancer. “Maybe you will adopt a healthier lifestyle,” someone chirped at me, implying my supposedly unhealthy lifestyle caused my cancer. The news was full of articles telling me the reason I got cancer was because I was too fat, I didn’t exercise enough and/or I drank too much. I went to a workshop at a ‘supportive’ cancer organization, only to be lectured on all the ways I had caused my own cancer and how I’d better change to a vegan-based diet and start exercising obsessively if I didn’t want a recurrence. Many folks seemed more aware of the specific reasons I got cancer than my oncologists did and didn’t mind telling me about it.

However, awareness of cancer’s mental and emotional after-effects is low. (Edited to add: read Adriana Barton’s excellent story in the Globe + Mail about mental health services for people with cancer).  Even women who had breast cancer told me to just forget about it after treatment and get on with my life. The residual post-traumatic stress I acquired from painful hospital experiences and accompanying identity crisis from facing my own mortality were something nobody wanted to be aware of. Cancer doesn’t need more awareness, but the collateral mental health damage from having a cancer diagnosis certainly does.

Breast cancer suffers from overexposure, except in one area: metastatic breast cancer. This is cancer that has spread from the breast to other organs in the body. In the US, there are 150,000 women living with breast cancer and that number is rising. Treatment and support for these women is sorely lacking.

I live in fear of recurrence of the cancer because then my prognosis is likely terminal. Alas, the rest of the breast cancer world mostly ignores metastatic breast cancer. While people abandoned me when I got regular, run-of-the-mill breast cancer, it is 1000 times worse if you have metastatic breast cancer. Even your own breast cancer community shrugs you off, for you represent their greatest fear – a recurrence. On World Cancer Day, let’s turn our awareness to all our sisters and brothers who have metastatic cancers instead.

There are many other ignored cancers – lung cancer, colon cancers, and pancreatic cancer – that don’t receive the research funding that breast cancer does. World Cancer Day is a good day to become aware of these forgotten cancers. Then I think of conditions that aren’t cancer that are dismissed and invisible: Myalgic Encephalopathy (ME/Chronic Fatigue Syndrome), inflammatory infections like Lyme disease and quite frankly, all mental health issues. They could use some of our love too.

How about on World Cancer Day let’s move beyond awareness. Why don’t we take the time to pause to think of people who are suffering in some way, any way. Let’s take today not to become more aware of cancer, but to not turn away from people’s pain and reach out towards them with love instead. In fact, this compassionate approach would be a sound philosophy to adopt every single day, not just on February 4th.

Twenty Days Last May


I took one photo for every day of the twenty days I was in radiation treatment last May.  Here’s what happened when an artist friend generously taught me how to create a collage.  These are images from a time I’d rather forget.  But those twenty days are etched so deeply inside of me that my only way out is to weave that time into my very being.

This is why telling our stories – in whatever form – is so important.  By gathering our experience into a story, we make sense of random or traumatic events.  It is only then that we begin to heal.

there’s not one right way to do cancer

I’ve been carrying Audre Lorde’s Cancer Journals around in my bag for months. There’s so much to admire in her book: her call to women not to be silenced, her refusal to go back to ‘normal’ and wear a prosthetic to please men or make the nurses in the oncologist office more comfortable.  She asks:

What are the tyrannies you swallow day by day, until you attempt to make them your own, until you sicken and die of them, still in silence? 

Then I read Elizabeth Wurtzel’s piece on having advanced breast cancer:

Everyone else can hate cancer. I don’t. Everyone else can be afraid of cancer. I am not. It is part of me. It is my companion. I live with it. It’s inside of me. I have an intimacy with cancer that runs deep.

You may have a strong opinion after reading this. Think about how that strong opinion comes through your own lens about how you think you would handle breast cancer/how you have handled breast cancer.

We all respond to cancer differently.  Our response depends on our own values, how we have responded to crises in the past and our toolbox of resiliency. Cancer is terribly personal, so our response is personal too.  In my exceedingly vulnerable state of being a cancer patient, I only became more myself.  I was not a best case scenario.

This comes to the thesis of this essay: because we are all different, we all do cancer differently.

When I first got diagnosed with breast cancer, I spoke to many women who had a cancer experience. Each of them told me different things: put your head down and get through it, f*ck that sh*t, be strong, endure so you can get back to your life, here’s your chance to go vegan, etc. Each had formed their own cancer philosophy which had evolved over time.

The only thing many of them had in common was the further away the woman was from her cancer experience, the more she wanted me to just put cancer in a box and forget about it, because that’s what she had done.

I lean towards Audre’s outlook instead.  She talks about, (having) survived cancer by scrutinizing its meaning within our lives, and by attempting to integrate this crisis into useful strengths for change. How could I have not changed? I’m not going back to the way I was before I had cancer. I see that as a waste of the cancer. But then that’s just me. Not everybody feels that way and that’s okay too.

My response to having breast cancer was very Sue. I searched for kindness and compassion from my family, friends and health professionals because that’s what I’ve always done, for my own reasons. I’m all about the soft stuff, so naturally I looked for it when I got cancer too. I struggle with fitting in and belonging, so I tried many support groups, outlets and cancer supportive organizations before I found my fit. I grapple with self-worth, so any rejection by family, friends and health professionals devastated me.

I’m a reader, so I read a lot in an attempt to understand how cancer feels.   I’m a writer so I wrote about it for many reasons – to bear witness to myself, to offer constructive feedback, to say thank you, to bitch and moan, to collaborate, to heal myself.

I bristled against certain cancer words to describe myself (survivor, warrior) before settling on the neutral breast cancer haver. Now I am a woman who had breast cancer which is apparently gone now but has a 10% chance of coming back. That’s a mouthful but one word doesn’t sum me up. Mostly you can just call me Sue.

And finally, my paid work has been in patient experience, so this lens is particularly strong. I was tuned into every aspect of my experience with health care – from how appointments are booked (archaically) to bedside manner (a mix) to the waiting room environments (mostly crappy).

I’ve included my favourite GIF at the top of this post. This is where we lift each other up – even if we don’t look or behave exactly alike or have the same diagnosis. Let’s give each other permission to be sick – and live life – exactly as we want to, without fear of punishment. When a friend or family member or patient gets cancer, it is not about you. It is about them.  Let them live own their story without your judgment.

Unrest, the Film

As I lay in my own bed watching the film Unrest, it struck me as incredibly unfair that scores of patients (85% of patients are women), who have Myalgic Encephalomyelitis (ME) have to fight for understanding from the world every day. I am a woman healing from breast cancer, a kind of cancer that’s suffered from the exact opposite problem than ME – a pink onslaught of awareness that is teetering on overexposure.

I never had anybody question my symptoms. When I presented to my family physician with a lump in my left breast, the slow cogs of the health care machine began to move to put me on the treadmill to diagnosis. Once diagnosed, I was sitting at a surgeon’s office one week later and under the knife two weeks after that. Radiation came two months later and that was that (except for my struggle with my mental health collateral damage).

As Jennifer Brea so brilliantly illustrates in her film, ME has no such diagnostic machine. Early in the film, her husband Omar Wasow wisely advises Jennifer as they are on their way to the Emergency Department:

If you say too little, they can’t help you.
If you say too much, they think you are a mental patient.

What he says is true. Presenting at the hospital is tricky business. I’d add, there should be nothing wrong with being a mental patient, but of course there is. There’s plenty of stigma and disbelief that comes with mental or emotional symptoms. That should not be so, but it is. ME is not ‘just in your head’ but what if something else was? Care and compassion should not be dismissed simply because there’s been no found biological cause.

But of course I’m being naïve. Patients, and dare I say, women, are dismissed all the time. Even in breast cancer, common as it may be, women are, encouraged to deny the realities of their own body, as the great Audre Lorde says. Our side effects are scoffed at and dismissed, we are told we are lucky that we aren’t dead and to be quiet and be positive. There’s great pressure on those who have had cancer to ‘get back to normal’ and even worse, to be ‘better than ever!’ Nothing ever goes back to normal after a glimpse into death. But many in our families and in health care are uncomfortable with any narrative other than the ‘I’m cured!’ heroic story. This is not our reality.

There are many remarkable elements in Jennifer Brea’s Unrest film. Jennifer made the film from her bed. This makes me pause and wonder what able-bodied me has accomplished lately. She tells not only her story, but the story of other people around the world with ME too. This is not a story of redemption – there is no happy ever after. This is real life. She’s not afraid to be vulnerable and for that I applaud loudly. It is tough to put yourself out there, but it is absolutely necessary too. You witness her pain, her struggle and ultimately, the love of her husband too. Like Rana Awdish’s In Shock book, Unrest is a love story too. It is a story about caregiving administered with deep affection.  At one point her husband Omar tells Jennifer, you bring joy to my life every day.  This is a tender insight into what most people don’t understand about caregiving, as I say about caring for my son with Down syndrome – it is done for love.

My friend and former colleague Kathy Reid works in a pain clinic. She told me the first thing that she tells new patients is I believe you. So many times their pain has been scoffed at or minimized.

If people arrive at your doorstep in pain – any kind of pain – emotional, physical, mental, spiritual – do not dismiss them. Do not turn away. It is the job of the healer first to listen and then to believe.

To find out more about ME, check out the Tools section on the Unrest website. Us patients need to stick together – breast cancer, metastatic breast cancer, other cancers, ME, other chronic diseases. It doesn’t matter. The only way change is going to happen is if we pause in the fierce war to compete for resources to lift each other up.

I’ll end with quoting the entirety of Audre Lorde’s famous words from The Cancer Journals, dedicated to Jennifer Brea:

I was going to die, if not sooner then later, whether or not I had ever spoken myself. My silences had not protected me. Your silence will not protect you. But for every real word spoken, for every attempt I had ever made to speak those truths for which I am still seeking, I have made contact with other women while we examined the words to fit in a world in which we all believed, bridging our differences.

All the Feels: The Breast Biopsy

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Since I started writing about breast cancer on my blog, I’ve had the good fortune to hear from some lovely women who are in the midst of their own cancer scare or cancer experience, which of course starts with diagnostics.

On any given day, there many women (and some men too) are waiting for a breast biopsy appointment. While I was handed a mountain of patient education pamphlets over this past year, nobody told me how a procedure or test actually feels. Here’s my take on my own breast biopsies, with the important caveat that everybody’s experience is different – because of differing personalities, way to cope with stress, type of biopsy, health care environment and health care professionals.  This is a personal insight into the way I felt last year this time.

1. Waiting Sucks

The waiting really is the hardest part. When the day of your biopsy comes, you put your head down and get it done. But waiting beforehand can be excruciating. Acknowledge that it is hard. Be kind to yourself. Use whatever distraction and comfort methods work for you. For me, it was long walks, movies, Netflix, baths and sleeping. A beautiful healing book I read during this time was Birds Art Life by Kyo McLear.  Looking back, I realize that it was torture to wait but somehow you just do it, one day at a time.

2.  Nuts + Bolts of a Breast Biopsy

I’d recommend getting a ride there and back.  I was anxious during the drive there and afterwards I was sore and bandaged up. Make sure you ask the staff how long you are scheduled for so your support person can go for a walk during your biopsy and not be stuck in the waiting room.

There is no shame in taking your doctor beforehand about anxiety medication. There was no sedation with my biopsies (I had two done at once). Ask your GP about a prescription. For me, it was Ativan.  All it does for me is take the edge off my anxiety and makes me feel ‘ok’.  I don’t like taking pills, but I’ve also learned the hard lesson this year that I don’t have to be strong all the time.

Here’s what I wrote about the mammogram tech at my biopsy:  “The tech there is matter of fact but kind.  She rubs my arm when I get the freezing – I think her kindness is what made me cry.  When I was distorted under that mammogram machine, she brushed my hair out of my eyes.  I think she must be somebody’s mom.”   May you have a kind mammogram technologist and radiologist assigned to you. You can ask them to explain what they are doing during the procedure to help with your anxiety.

The whole procedure is weird.  I had core needle biopsies.  One biopsy involved being positioned in the mammogram machine and being squished and the other one was guided with an ultrasound.  Ask what kind of biopsy you are having.  They give you a needle for freezing before they take the biopsy.  That pinches.  Then there’s this strange ‘box’ that has the core needle in it and they press it down on your like an old-fashioned hole puncher and it extracts the biopsy.  It makes an awful noise.

I looked down during the biopsy extraction and wish I hadn’t because I was bleeding a bit and this made me woozy.

I thankfully kept my eyes closed most of the time, did some breathing like I was meditating and pretended I was on a beach in Hawai’i.  Breathing and visualization has helped me a lot through this whole damn thing.

I walked out with bandages on each biopsy site – which were basically little ‘pokes’, not scars.  My arm was sore for a couple of days from having been in one position for so long.

They likely won’t tell you any results at the biopsy, but you may get hints from the radiologist.  Ask them how long before the results will come in and who will call you. For me, my pathology results came back in 7 days and I got a call about my diagnosis from my family doctor, who had to give me the bad news that I had breast cancer. I hope you are in the 80% of women who have benign results! Again, waiting for results is a horrible time too. My most important tip continues to be: BE KIND TO YOURSELF.  This is a very stressful time even if it isn’t cancer – don’t minimize that.

It is a strange thing to wait for a breast biopsy (or any diagnostics) and then the results.   You don’t belong anywhere – like to a patient community – but you are suspended in an awful purgatory.  I didn’t want to talk to friends who had breast cancer about it because I was worried if my results had come back benign, that might have upset them. I realize now that I’ve had breast cancer, I’m happy to talk to anybody during this awful waiting, whether they end up with breast cancer or not. It does help to connect with folks who have been through similar experiences.

I’ll write more about All the Feels in future blogs…

In Shock, the book

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I read Rana Awdish’s book In Shock quickly and greedily over the span of three days. In books I tend to mark up pages with passages I want to revisit.  Poor In Shock is completely dog-eared – pages turned inward every second or third page.  This is the sign of a good story.  In the grand tradition of physician writers Oliver Sacks and Paul Kalanithi, Rana Awdish has a rare talent for both science and writing.

It would be easy to describe this book as a medical memoir, but it is much more than that – it is a book of loss and grief over the death of a child. It champions quality improvement and compassionate care. In Shock is a love story too.

Dr. Awdish vividly recounts her time spent as a patient in the ICU with a sudden critical illness and contrasts it with her experience in the same ICU as a critical care physician.  This unfortunate coincidence allows for insights from both sides of the bed as both a patient and doctor.

I’m all about the feelings all the time, so I appreciated Dr. Awdish’s skill at recounting how it feels to be a patient.  She doesn’t white-wash the horrors inflicted in the hospital. She also offers practical advice to health professionals about using thoughtful communication techniques to avoid emotional harm.  She emphasizes how as a patient, she was much more than ‘abdominal pain and fetal demise.’   She reminds clinicians how much patients can hear from their beds, even in critical care.  I wince at her recollection of overhearing a doctor say in the ICU that ‘she’s trying to die on us.

The author serves up great insight into the makings of a physician and training programs that train compassion out of the most earnest of students.  I believe the hope for change lies in medical education (and all health professional education), but alas, the workings of that education mirrors the dysfunction of the health system.  The two are intertwined.  I can only hope that sharing patient stories from both health professionals and lay-patients will help.

This book reminded me why I was a failed student nurse – I could not figure out how to detach myself from patients.  Training to mold students into a ‘cooly distant authority’ happens in all health faculties, including nursing.  Dr. Awdish describes her experience as a medical student in the pediatric ICU:

“I found it utterly impossible to be detached or reserved in that unit.”  

Later, she was chastised by a supervising physician for expressing sadness for the death of a child, harshly learning, “…if we felt our feelings, we would kill the people we were supposed to help protect.”

My shock from In Shock was at the effort physicians make suppress to emotion, often at their own personal cost.  My best experiences with physicians have been those when doctors dared show they were human – not in a check-box way – but in an authentic, vulnerable way.  There are those rebels out there, but they are hard to find.  The training and health systems seem determined to squash them down.  I admire these kind champions even more now for swimming against the tide.

All is not lost and Rana does give us hope. She reminds us that there is “reciprocity in empathy.”  She shares positive experiences, too, including one with a Nurse Practitioner who demonstrates compassion for the death of her baby girl.  She explains how health professionals can “humbly witness suffering and offer support.”

Embedded in her harrowing story of experiencing a life-threatening event there is also an important love story about Rana’s relationship with her husband Randy.

“My bruised and discolored body was proof to him of what I had endured to stay with him,” she recounts.  I thought of my own husband and how both the author and I are graced with partners who granted us unconditional love during our health crises.  This deep, unwavering support can be healing too.

Dr. Rana Awdish’s In Shock covers a great amount of ground: shock at suddenly becoming gravely ill, losing her beloved baby girl and grieving for her previously healthy body.  There’s shock at how it feels to be a patient, shock at the resistance to her attempts to change the rigid medical culture to be more patient centred.

It is a dramatic and engaging read. I was spell bound until the very last page.  I might be predisposed to like this book as the mother of a son with a disability and now as a cancer patient. But this is a book for anybody who is a health professional or who has ever been – or might be – a patient (and that’s all of us).

I am heartened to have connected with Rana on Twitter and to discover she has a platform to preach for improved health communication as a speaker, writer and the Medical Director of Care Experience.  While it frustrates me that us simple layperson patients struggle to be heard, it does give me hope that doctors-as-patients are able to use their own stories to influence positive change.  Thank you Rana for gifting us your story.  I know it will make a difference in the world.