our sisterhood of pain

IMG_1414It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences. -Audre Lorde

I bring my red Moleskine notebook to every oncologist appointment. In it I’ve carefully recorded the date and the questions I need answered. I haven’t seen my official oncologist in months. I catch a glimpse of her in the staff room and hallway, but she doesn’t see me. Instead, I get the family physician in the clinic or the oncologist resident. I know this is how it works. I’m post-treatment with a boring low-grade cancer – and I don’t want to be an interesting case for an oncologist – but I can’t help but feel unimportant by this rejection.

Regardless of who I see, I try to be organized and look put together for whoever shows up in the treatment room. If I’m feeling stronger and in self-advocating mode, I’m sure to dress up and have make-up on. Is it wrong of me to do this, to lean on my privilege? I’ve learned over the years that I get listened to and taken seriously by clinicians if I look and act like them as much as possible.

I once heard of a mom who was a First Nations woman who had a kid with a disability. Every time she went to the children’s hospital, she dressed up in a (goddamn) business suit to purposely overcompensate for the shocking power inequities between patients/families and health care professionals. This power imbalance was exacerbated by the fact she was Indigenous. Is this okay? No. No it is not okay.

The worst part is that many health professionals don’t even realize they contribute to these imbalances with their obliviousness to their own privilege. I wrote a review of the brilliant book When The Spirit Catches You, which highlights this concept and is a must-read for anyone working in health care.

I don’t need someone to give me a voice. I already have a voice. I need someone to listen. If I have to get dressed up to be heard, I get dressed up. Should I be able to present disheveled in my sweatpants? I should, but then I’ll be judged. This isn’t paranoia; it is my reality.

I’ve been written off as a ‘hysterical mom’ many times when I’ve accompanied my son to the clinic or hospital. I’m careful not to show emotion – to not cry or to raise my voice, even if I’m upset. Recently, I asked a pediatric audiologist to ‘please speak to me more respectfully’ so she would stop her sighing and eye-rolling at my questions. I shouldn’t have to ask to be treated respectfully. My standards are not too high. As a patient or family member, I wish to be treated by health professionals with the same common courtesy that is afforded to a colleague.

(Oh wait, health professionals don’t necessarily treat each other courteously. Scratch that concept). Think of me as someone you love, then, if that helps. As your sister, wife or mom. No matter how well-dressed or well-spoken (or not) I am. This Cleveland Clinic classic video highlights this empathetic approach.

Recently, there was yet another article published in a medical journal written by a physician who became a patient. I appreciate the author’s humbleness and recognition of his own privilege. Here is a male oncologist/patient, asking for the receptionist to smile. I’ve been calling for receptionists smile for years, but who am I? I am just another layperson patient, a middle-aged breast cancer patient, a mom of a kid with Down syndrome. I do not have an oncologist’s platform.  Health care loves to listen to doctors.  To regular people, not so much.  Therein lies the problem.

It is important to note that I am white, well-off economically, generally well-spoken and I have worked in health care administration my entire career – specifically in patient and family experience for the past 13 years. Alas, I am also a woman and a patient, which knocks me down a few rungs on the health care ladder of status. I struggle to be taken seriously.

There is starting to be stories about how much of this power imbalance is due to gender. I applaud these stories. May they continue to be told.

I wrote about my own ‘lady’ experience in March, being brought to the Emergency Room by ambulance in excruciating ovarian pain. Joe Fassler writes about his wife’s similar story here in The Atlantic.  Sarah Frey also recently published this piece on gender-based health care for CBC news, and Jennifer Brea’s important film Unrest is about myalgic encephalomyelitis, a neglected women’s issue. There’s so much more to say about this gender imbalance in our sisterhood of pain.

The great imbalances reach other people too – those in the LGBTQI2-S community, those with disabilities, those from a different race or culture – I mean, I could go on and on. What does it take to be listened to by the health care system? Do we have to be exactly like health professionals to not get diminished or dismissed? Mostly yes, but sometimes no.  Let me share a positive example, my recent little ray of light.

I had my oncology appointment on Thursday. While I approached the day with oncology dread – waking up at 5 am with my head whirling; carefully preparing my questions in my little notebook; driving white-knuckled to the appointment; avoiding parking at the cancer hospital (the parkade there sends me into a medical PTSD tailspin); taking an Ativan to calm the hell down (an Ativan prescribed to me by an oncologist – that I only take when I have a health care appointment #irony); picking up a Starbucks to bring with me to the clinic as a crutch/my armor; walking in like my friend Isabel taught me, like I am The Queen; and asking the medical assistant not to tell me how much I weigh (the very first thing they do there is weigh me, my least favourite activity on earth).

Still, despite my many strategies to stay strong, I sat in the windowless, joyless clinic room, waiting for a knock on the door, feeling small, hunched over and nervously picking at my fingers until my hangnails bled.

In the end, the person who knocked at the door was a senior oncology resident, a pleasant man who forgot to introduce himself, but who was otherwise lovely. We had an actual conversation about my four questions in my notebook – a back and forth – where I asked and he shared information and options. I listened and then we discussed resolutions. I felt as if we did tackled all my questions together, in a most collaborative way.

I left this follow-up appointment feeling greatly relieved. If this doctor thought I was hysterical or difficult, he didn’t show it. If he was rushed or having a bad day, I didn’t know. I appreciated his careful listening and consideration. It was a good experience. Yet it was extraordinary in the fact that a positive patient experience is exceedingly rare. I felt treated with courtesy, compassion, validated, understood and listened to. This is how it should be, no matter one’s gender, gender identity, ethnicity, citizenship, religion, race, disability, orientation, dress, eloquence or otherwise. (My apologies if I’ve missed anybody or used the wrong terms – I’m still learning too).

It is humanity we all so crave from the health care system – no matter – or maybe because of – our different expressions of human identity. We are all people first. I’ll keep on squawking about health care and I hope you will too. Use your voice. I’ll end with another quote by the glorious Audre Lorde, who always says it best:

When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it is better to speak.

invincible summer

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I wrote this essay after attending the Callanish Retreat at Brew Creek Centre in late April.  A version of this piece will also be published in the Callanish newsletter.  

My breast tumour was treated well by health professionals over the course of my cancer diagnosis and treatment last year. My mass was identified, removed and destroyed. The remaining parts of my breast were radiated for good measure. Eventually, my physical scars began to heal, my hematoma shrunk and my burned skin faded.

The rest of me – the bits that were attached to my cancerous breast and housed my mental, emotional and spiritual health – were largely ignored by clinicians. I craved kindness in every health care interaction, even trying to make eye contact with the parkade attendants to no avail. I rarely found the loving kindness I so desired in the hospital. To them, I was just another middle-aged breast cancer patient. It was as if I was an unwanted breast mass and nothing more.

I endured my treatment deep in a state of emotional suffering. I had trauma from the hospital experience and was rattled by catching a glimpse of my own mortality. Even worse, cancer had triggered all the unresolved issues in my life. It was as if all my sorrow that I had carefully packed away the past 50 years was on full display on my kitchen table. I had no choice but to look at all this ugly pain that stemmed from my family of origin. I had no tools and little support beyond my dear husband and beloved children, who were also healing from my cancer in their own way.

I was discharged from counseling sessions at the hospital after four short sessions. “Where do I go now?” I sobbed at my last appointment. “Google therapists,” I was told.

Thankfully, Callanish Society showed up in my search results. I embarked on counseling appointments with Susie Merz, trekking across the city for regular sessions as the rest of me slowly began to heal.

I embraced everything about the Callanish house – the streaming light in the building, the warm greeting when I walked in the door, the peaceful hushed atmosphere, the tea offered to me at the start of each session. It was everything I was missing in my patient experience at the hospital.

I signed up for the Callanish retreat, but was terrified of the idea of being part of a group. I’m an introvert – fine in one-on-one situations, but I struggle in larger settings.

The retreat date crept closer. But because of my work in therapy with Susie, where she gently guided me through my pain, I was feeling stronger and more resilient. I didn’t know what to expect, but I felt ready to be with other people who had cancer too.

To prepare me for the retreat, Susie sagely recommended: “You will have to allow people to be nice to you.” As a caregiver, mom to a kid with a disability and classic nurturer and pleaser – as silly as it sounds – allowing people to be nice to me was a challenge.

Driving up to the gravel parking lot at the retreat location at Brew Creek Centre, there was a group of lovely women standing there, smiling and waving, awaiting my arrival. My room was beautifully appointed and tucked away on the second floor of a wooden cottage. There was a massive vase of gorgeous flowers to welcome me. This was my first glimpse into what was to come in the next five days.

We began each day meditating, learning qigong and slowly waking up to the sounds of beautiful crystal singing bowls. There was hard personal group work in the mornings, carefully facilitated by professionals, focused on loss and death. The afternoons were for rest and relaxation – with therapeutic touch, music and counseling. The day was studded with joyful meals, prepared with love by the volunteers in the kitchen. There was camaraderie, laughter and tears. Each day ended with an evening council, where everybody – staff, volunteers and participants – gathered in the great room around the crackling fire.

I was treated with unconditional kindness. I did allow people to be nice to me because I never once felt judged. Just being me seemed enough. It gave me comfort to know that every person working at the retreat was there to share her gifts with us. There was a clear belief in the concept of benevolent service – an approach that is sadly missing in today’s health care world. Us retreat participants were not a burden – instead we felt like a joy. I had a sense that every touch at the retreat was carefully planned and tweaked based on years of wisdom. I wasn’t scared because I was safe.

Here are the fragments of what remains after the Callanish retreat: I have access to a new serenity inside of me. I don’t wake up feeling panicked anymore. When worry crosses my mind (and negative thoughts do still come) I now have tools to pull up to let them wash over me. I can close my eyes and breathe, listen to music, walk in nature, or simply remember my time at the retreat. If I start ruminating in the past or fretting about the future, I pause and centre in the moment. I look up in the sky and think, “It’s a beautiful day.”

My husband says that I smile easier now. For anxious, tormented me – these newfound skills are the ultimate gift for me and my family. Despite cancer (or maybe because of it?), I have finally found a sliver of peace in my heart. A deep, heartfelt thank you to all the kind souls dedicated to the Callanish retreat for guiding me towards my own invincible summer.

Edited to add:  I so wish we had more Callanish in health care.  More care, more service, more kindness, better food, more acknowledgment of the trauma patients and families have been through, more love.  xo.

 

as we all carry on

Podcast-V2

I’ve managed to wrench myself from social media (although I cannot escape the clutches of Instagram) and this has freed up mental time during my daily walks.  If I’m in a beautiful setting, I walk listening to nothing – only the rustle of the leaves and the chirping of the spring birds.  If I’m relegated to strolling along an ugly urban area, podcasts keep me company.

White Coat, Black Art on CBC with Dr. Brian Goldman is in my podcast feed.  I was thrilled last week to hear my friend and colleague Isabel Jordan interviewed for an episode about PTSD in hospital settings.  She was clear and eloquent about the PTSD that has haunted her since her son’s PICU admission years ago.  This episode covers a lot of important ground: the painful procedures inflicted on patients; the lack of pain management techniques used by hospital staff; the need for mental health support for all family members who bear witness to traumatic hospital situations; and the associated lack of public mental health services in Canada. Isabel is especially poignant in her description of how her rare disease community has helped to heal her.

 Life isn’t just about being patched up.  It’s carrying on afterwards.
                                                                                                         – Isabel Jordan

I truly believe some of the trauma that happens in the hospital could be avoided with a more empathetic attitude.  I, too, have held down my young son with a disability while he was getting blood drawn. I wince at this memory, which surely has been etched deeply in his head.  It does not have to be this way.  Discovering EMLA, a numbing cream that I apply before his blood draw, was revolutionary to his experience.  Another mom told me about numbing creams  – not one health professional has mentioned it to me – ever – in the past 15 years.  (Check out the fabulous It Doesn’t Have to Hurt website for tips on pain management for children).  Clinicians, ask yourself:  Does it always have to hurt?

Us adults experience pain and trauma in the hospital too.  I have written about my experiences with health care on this blog and in a recent guest editorial with the Journal of Family Nursing.  The Affronts to My Human Body essay outlines my accumulations of scars throughout the years and during my recent treatment for breast cancer.

I know many hospital procedures are painful and this is sometimes unavoidable.  But I wonder how much pain is avoidable with a more compassionate approach.  The podcast Everything Happens’ last episode called Can You Hear Me Now talks about empathy in health care.  It offers a brilliant interview with Alan Alda and Kate Bowler.  There’s too much good stuff here to quote.  Just listen to the episode, especially if you work in health care.

Alan talks about connection, plain language and the curse of knowledge in medicine.  If I didn’t have a crush on him when I was a teenager watching Hawkeye Pierce in M*A*S*H episodes, I certainly do now.

At the end of the podcast, Alan turns the table and interviews Kate.  He asks her why she wrote her book and why she does this podcast.  She answers:

What is it like to live after you give up on some of your most deeply cherished lies, like everything is going to work out.  Are there still true and beautiful things that we can still learn in the dark?

To me, this echoes Isabel’s sentiment about carrying on after the trauma and through the pain.  Cheers to those who give voice to the stories that happen in the dark – through being brave enough to be interviewed, or by hosting podcasts or writing or just simply by being a listening presence and not turning away from the pain.  I think both sharing and listening to stories helps us all, as Ram Dass says, to keep walking each other home.  xo.

make space for the suffering

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The older I get, the more conflicted I feel about everything.  I hope feeling conflicted is in fact related to my growing sense of humility as I open up to other points of view.  The more I know, the more I know I don’t know.

I used to despise the word suffering, as it is misused all the time in reference to people with disabilities.  The horrific term ‘burden and suffering’ is often widely applied to human beings with differences, both before and after they are born.  I still call bullshit on this stereotyping of other human beings in order to categorize them as less human.

So I dismissed the word suffering outright until I was diagnosed with cancer last year.  It was then I felt the true meaning of suffering, as the past few months have been fraught with unresolved physical and emotional pain which was triggered by my cancer.  I continue to heal from that experience.

I encountered Carlyn Zwarenstein’s writing about pain a few months ago.  She invited me to look at the notion of suffering in her important book called Opium Eater, The New Confessions.   Opium Eater is a small but mighty book that examines the use of legal opioids to manage chronic pain, looking at the historical, economical and emotional aspects of alleviating pain. Carlyn deftly draws upon the literary world for understanding. Andrew Sullivan’s recent New York article The Poison We Pick also tackles the concept of pain.  He identifies pain as simmering underneath the terrible mounting opioid overdose deaths.  As he explains about opioids: It is a story of pain and the search for an end to it.

A year ago, I wouldn’t have comprehended the depths of such pain.  But today I have a glimmer of understanding.  While I am privileged enough to keep pain at bay with the occasional Ativan and regular therapy sessions, cancer has humbled me enough for me to glimpse at the great suffering in this messed up, beautiful world.

Part of my own healing has been writing.  A few months ago, I was asked by Dr. Janice Bell to write a guest editorial for the Journal of Family Nursing about my perspective on suffering.  It was published yesterday and is called Make Space for the Suffering.

I’m pleased that health care academic journals are starting to make space for the patient voice on their prestigious pages.  I believe the inclusion of the patient voice makes their pages even more prestigious (and legit).  This most recent editorial is a plea for health professionals not to turn away from patients’ and families’ pain.

I will continue to say over and over again – I’m a broken record – as I dare you, health professionals, families and friends, to draw upon compassion and not turn away from our pain:

Healers turn toward patients and families during their pain. A warm gesture, kind word, or gentle touch reminds us that we are not alone and makes space for our suffering. While health care can (sometimes) cure, it is love that will heal us in the end.

Twenty Days Last May, part II

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(A prompt from my writing class:  describe a moment you are at peace)

For twenty days in between appointments, I walked. I walked in concentric circles around the hospital – down to False Creek, up the Cambie hill, west to the fancy shops and east to the hipsters with their big beards.

For twenty days, I looked for a picture. In the hospital, all my photos were taken in black and white. But outside out on my stroll, I searched for colour.

I snapped a tabby cat sunning on a step, the city view peeking through the condos and a bicycle parked against a tree, its basket filled with flowers. Once a crow flew at me on 10th street, angered I had passed too close to its babies. I continued on. There was a coffee shop filled with books, a burgundy mosaic pattern on a store floor and the blossoms slowly filling the tree canopies with early spring.

On my last day of those long 20 days of treatment, I spotted some graffiti on an alley wall. It was a perfect pink circle with stencilled words that simply said – you are here.  And that is enough.  xo.

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advocate me

sue patient

This post is a follow up from my interview with Donna Thomson for The Caregivers’ Living Room and was written for + originally published on the Cancer Knowledge Network.

I never wanted to be an advocate. I’m a conflict-adverse introvert by nature. When my youngest son was born with Down syndrome, the title of Advocate was foisted upon me. I was also suddenly a Special Needs Mom. These were clubs I never signed up for.

Thrown neck-deep into the health system with a baby with medical issues, I quickly learned to speak up at specialists’ offices to get my questions answered. I figured out that most advocacy work is relationship-based, which means if you have a relationship with the person you are directing your advocacy efforts towards, things will go much better.

To paraphrase Guy Kawasaki, a magnificent cause can overcome a prickly personality, but why make things harder? I got to know my son’s clinicians and recognized the value of chitchat, being nice, giving thank you cards and remembering people’s birthdays.

I’ve been to protests and marches to call for fair government funding for people with disabilities. I’ve spoken to the media about policies that segregate my kid. I lobbied a children’s hospital to start up a medical Down syndrome clinic and then fought hard when an administrator tried to shut it down a few years later. I have a fierce reputation as a strong advocate and I would take a bullet for any of my children.

Last year my advocacy efforts came to a screeching halt when I was diagnosed with breast cancer. Many people said watch out cancer world, strong advocate Sue Robins is here – but all that bravado did not come to pass. I’ve often failed miserably at advocating for myself as a cancer patient. Newly diagnosed, I was meek, prickly and vulnerable. Intellectually, I knew what to do to speak up for myself in stark oncology clinics, but emotionally I sat as still as a little mouse, hunched over, compliant and broken.

It had been easier to advocate for my son. He was one step removed from me, and I could hide behind my role of the strong Mama Bear. Cancer is exceedingly personal and not one step removed at all, for my own cells have turned rogue on me. Breast cancer is an especially intimate sort of cancer – my breast tumour was an affront to my feminine body.

Sitting in exam rooms in thin gowns, exposing my breasts to strange hands and painful machines, I couldn’t figure out a way to salvage my dignity, never mind advocate for myself. I was stripped bare, as small as a little girl. Be brave and strong, they said. I was scared and weak instead.

People who knew me from the disability world told me to buck up, to advocate for myself as I had for my son. This call to action was not what I needed; it only served to pile guilt at my own helplessness on top of me. I simply craved compassion instead.

I slowly turned to writing to process my cancer patient experiences using both a personal journal and my blog. Even if I was unable to speak up during an appointment, I could write about it afterwards. On my blog, this caused me some trouble.

Cancer hospitals don’t like accounts of experiences, even anonymous ones, unless they are positive. Many of my own touches with health care were traumatic and a number of encounters were even unkind. I asked their patient engagement person if there was a way to share my photos I had taken during radiation and she told me they don’t ‘privilege’ one patient’s story over another. Then she added that the writing on my blog was raw. More injured, I left the public eye and turned inward.

This took funny turns – I signed up for a poetry workshop class and wrote about cancer in poetry. This was freeing – I could fictionalize my experiences and not be worried about being factual. A friend kindly showed me how to make a collage from my radiation photos that the cancer hospital wasn’t interested in. Art was a different way to speak up for myself. I was advocating, but coming at it sideways, not in a clinic room.

I poked my head back into published writing. A leader in radiation therapy asked me to co-author a journal article about my experience having radiation. A nursing professor asked me to write a guest editorial for her journal about suffering. I am hopeful my story leaves remnants for clinicians to pause to consider how patients feel when they are in their care. While this might not help me, this may help others behind me in the cancer world. Making meaning from my experience helps me heal too.

There are many ways to speak up for ourselves. Some people fundraise, lobby governments, give direct feedback to clinicians, and bring along support people to appointments to help given themselves a voice. Other folks just hang in there, endure and try to forget about the whole damn thing. That’s okay too.

Just as there’s not one right way to do cancer, there’s not one right way to advocate. The most important thing is to be kind and forgiving of yourself as you find your own way.

the real people behind canada waits

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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.