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.

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.

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.