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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The Sinister Side of Patient Engagement

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I was a patient engagement person before there was such thing as patient engagement. Ten years ago, I was a mom who was hired by a hospital to advise leadership about family-centred care.  Back then, us family advisors were pioneers, cowboys in a new frontier.  The movement was focused on making the experience in the hospital better for families by creating a family council and it grew from there.

Something more sinister has accompanied this growth. While some hospitals maintain the purity of these patient engagement jobs by hiring those with lived experiences, others have sought to dilute it by hiring staff who do not even demonstrate compassion for the patients and families that they are supposedly to serve. Today, it is often clinicians who are hired into leadership positions in patient engagement, citing: ‘but everybody is a patient!’ – leaving authentic patients and families behind in their dust.

I’ve been despondent about this before, throwing my hands up and despairing: Patient Engagement Has Been Stolen From Patients, but after reading Isabel Jordan’s essay Patient Engagement: You’re Doing it WrongI grit my teeth and dig in my heels, solidifying this stance.   Please take the time to read Isabel’s important story.

How can these new Patient Engagement leaders get it so wrong? How is it that patients and families are used for their stories and then crudely discarded? Why has even the common courtesy of responding to emails gone? I’ve gone on and on about the best practice of patient engagement: here, here, here, here, here, here, here, herehere.  Here’s an example of best practice, to contrast Isabel’s horrible awful experience.

If you are working in the area of patient engagement, consider Isabel’s piece very carefully. If you truly are a professional, you will welcome constructive feedback and reflect on what you’ve learned and how you are going to change your practice based on your learnings.  Perhaps you see an element of yourself mirrored in her words.

If Patient Engagement is becoming a profession, there needs to be accountability for it. Like other health care professions, Patient Engagement needs to protect the public they serve – through common best practice, standards, training + continuing education requirements and a path for the public to report misconduct and follow up with disciplinary action. If the health professionals have stolen patient engagement from us patients, then they need to start acting like professionals. Not rude, inconsiderate and disrespectful of the people they are supposedly committed to collaborate with.

Thank you Isabel for sharing your story and wisdom with us. Please share her post widely with those who engage patients: in health authorities, governments, hospitals, research projects, health affiliated organizations – anybody who says they engage patients. Patient engagement, patient experience people – wondering if you are doing a good job?  Turn to the patients and families and ask them.  That’s the only way you’ll ever know.

Never forget, it is an honour to work with patients and families in any capacity. Words are hollow here. If you don’t demonstrate to us through your actions that you believe this work is about serving people, you are in the wrong field of work.  

advocate me

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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 gerber baby

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This is a slide from one of my presentations to health professionals explaining the reality of having a child with a disability.  This is a picture of a Gerber Baby, a so-called blue ribbon, or perfect baby.

This week, the Internet is abuzz that the new Gerber Baby has Down syndrome.

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Gerber Baby Lucas Warren

I’m obviously going to have to rethink my presentation slide.  My point was that we all expect a perfect baby when our children are born.  The honest fact is that no child is perfect, but with most children, this is something we gradually figure out as the years pass – particularly when adolescence hits and we get the inevitable call from the principal’s office.  Our job as parents is to help our children embrace their imperfections, for that’s what makes them – and all of us – human.

If you have a child with Down syndrome, the fact your child isn’t perfect is immediately pointed out by many people upon diagnosis.  I am happy for Lucas’ family and I know that having a baby with Down syndrome represent the Gerber Baby is a big deal for new families.  I’ve seen lots of sharing of Lucas’ image on social media and indeed, this news should be celebrated.  It is great that children with differences are starting to get a shot at modelling.  I pause here to say how I wish we were more evolved as a society and this wasn’t big news at all; that the advertising world chose images that represented the diversity of our world – including diversity of ability.  But that’s me with my rose-coloured glasses on.

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Aaron is the dude in the middle

When my son Aaron was three, he was chosen to be on a campaign to advertise a Buddy Walk, an annual fundraiser for organizations who support people with Down syndrome.  We were thrilled to see his image on the sides of buses and up on billboards.

I understand how validating this Gerber Baby news is for us families who are anxious about the reception our children will be received in the world.  Lucas will be a role model for families with young children, no doubt.  We search for role models for now-14 year old Aaron, too – in television shows with stars with Down syndrome like Born this Way or through plays like King Arthur’s Night, co-written and starring Niall McNeil, who has an extra chromosome like my boy.  Aaron needs to see other people with Down syndrome in the public eye to show him what’s possible.  It affirms his very existence.

Having Lucas as the Gerber Baby will bring awareness to babies with Down syndrome. But will this mean the world will start to change to embrace disabilities?

“I’m skeptical this is a significant moment,” said David Perry on CBC’s The Current this morning.  I feel jaded saying this, but I agree with David.  We have to go further.  Awareness is not even a start to anywhere significant.  Awareness is just awareness.  We can’t pat ourselves on the back for being so progressive that Lucas’ modelling gig represents great change in a world that continuously and repeatedly discriminates against people with all sorts of disabilities.  That would naive and foolish.

I’ve written before about The Cute Thing.  Lucas is super cute, as was Aaron during his brief modelling career.  Aaron grew up and Lucas will grow up, too. We all grow up.  Teenagers and adults are not cute, whether they have Down syndrome or not.  Are those who are not cute – for whatever reason – simply discarded, if cute is all important?  Is it only those people with disabilities who make us feel better about ourselves (a disturbing phenomenon called Inspiration Porn, as explained by the late great Stella Young) the only people of value?

I don’t know the Gerber Product Company’s intentions by choosing a baby with Down syndrome to be their Gerber Baby.  I’d hanker a guess that it is for the same reason they choose any baby:  an attractive baby helps them sell products. The baby food business is big business.  I note that Gerber was sold to Nestle in 2007.  I’ve boycotted Nestle products since the mid-1990’s, ever since I found out about their unethical marketing of infant formula – allegations of which continue today.

I do so wish this news was associated with a more ethical company.

What I’m asking for is for us to consider: Is that all there is?  When a large corporation chooses a baby with Down syndrome to represent their product, does this mean that my son’s own life is going to improve?  Will he now have friends?  Will I have funding for therapies, respite or childcare for him now? Will he be able to find a job?  Love? Will he be safe as he makes his way in this world?  These are deeper questions that bubble up for me.

As I said about cancer, awareness is simply not enough.  It is a feel-good road to nowhere, unless it is followed up by real action:  a change in practice about how prenatal screening and testing is offered to women, a commitment to inclusive education + employment opportunities, equitable health care and governments who demonstrate they value all sorts of diversity.  For sure, let’s pause to celebrate the new Gerber Baby. Then let’s roll up our sleeves and get to work.

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.

Twenty Days Last May

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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.