cut the red tape

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My son is 15 years old and loves to participate in sports.  We’ve learned the hard way that most sports teams don’t want him because he has Down syndrome.

Alas, true inclusion in recreation or sports has rarely happened in real life particularly as Aaron has gotten older.  One exception has been his high school, where he has heartily been welcomed in Physical Education classes and his teacher has embraced the modifications that he requires because of his bum knee, intellectual disability and short stature.  Hurrah for the inclusion champions at his school.

Outside of gym class, Aaron been pushed into segregated sports activities.  I’ve come to peace with this, despite my philosophical insistence on inclusion.  Inclusion to me means belonging in the bigger community.  Being ‘allowed’ to play sports with other kids who are segregated is not inclusion.  But it is what it is and it allows my kid to be active with a diverse group of people and so that’s a positive thing.

In the community, I’m not going to waste my precious advocacy energy fighting to have a team include Aaron if they don’t want him.  So he’s slowly been moved over to segregated sports and recreation programs like those at Challenger Baseball, Down Syndrome Research Foundation and Special Olympics.

Surprisingly, here in the segregated world, accessibility comes into play too.  There is a spectrum of ease of participation.  Challenger Baseball says – your kid wants to play baseball?  Come on in!  We don’t care where you live or what’s going on with you!  Just show up!   Down Syndrome Research Foundation says welcome to our Bollywood and Taekwondo classes!  Sign up if you can afford it (if not, you can ask for a bursary)!  You don’t even have to have Down syndrome!  These are good models and make it easy for kids to be active and have fun.

Now I pause at Special Olympics.  I know Special Olympics is a beloved institution so I’m going to get my hand slapped for this.  But I am going to say it anyway.

Special Olympics has grown into a massive organization. Along with growth comes bureaucracy. Accessibility for people with disabilities here is marred by red tape. Your athlete has Down syndrome?  He must get a controversial neck x-ray before he can register.  You live out of region and your local program is full?  You aren’t welcome on another team, unless you get approval from your home region to transfer over.  And then the transferring region has to approve you too. That requires having many forms filled out and then waiting and waiting, as my son has been doing for the past month.  He can’t attend practice until all the paperwork is done and the season has already begun.

Who loses in the red tape environments?  It is the kids themselves.

I will surmise when an organization gets too big, it drifts away from its grassroots beginnings and loses sight of the people they are supposed to serve.  It becomes about bureaucracy, policy, risk-management, staff/volunteers and rules, not the people themselves.  I’ve seen this happen over and over again with support groups and health/human services organizations too.  This is a darn shame.

This is particularly frustrating because I keep reading articles about how children with disabilities struggle with being physically active.  If we know this is true, why aren’t we making it easier, not harder for kids to participate?

I know that people working and volunteering for these organizations are well-intentioned.  I would ask them to pause and consider:  are your policies and rules causing additional barriers for people to participate?

If they are, I’d respectfully suggest it is time to untangle and take a good hard look at all your red tape. Who is this red tape serving anyhow?   Has red tape become a barrier for people to participate?  And is that okay by you?

Instead, let’s do what we can to let kids be active and have fun and never forget that sports and recreation is not about us adults.  Make it easier, not harder, for our kids to participate.  Help them find ways to be as healthy as they can be – and in the process, to find belonging and friendships too.

 

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.

two steps backwards

See when it starts to fall apart
Man, it really falls apart – Tragically Hip

I am watching across Canada as the patient and family engagement movement in hospital settings is taking two steps backwards.  Councils are being disbanded, patient and family staff members (whether they are paid or unpaid) are resigning or being forced out of positions and are being replaced with clinicians.

There is a real fragility that underlies the patient engagement movement.  If patients and families behave themselves, then all is fine.  The minute there is a change in leadership, or something gets hard – like an ethical issue comes up or there is conflict – then BOOM it is over.

It seems as if this movement is so precarious that it can only survive when things are going well.  I define going well as: patients and families mirror their behaviour as close as possible to the behaviour of clinicians and administrators. We must dress like them, talk like them, show up when they tell us to and agree with them. Of course, this erases any hope for diversity and leaves the pool of engaged patients university-educated, articulate and economically well-off, just like the clinicians and administrators themselves.  Patient engagement quickly becomes doomed the moment there’s a sniff of any difference or contention.

There is now a trend throughout the country to replace paid families or patients with health care clinicians in patient engagement roles.  I think this is because:

  • The patient/family engagement movement has become too successful.  We have amassed too much power in the eyes of administrators.  This, ironically, means that engagement has become no longer tokenistic and is finally meaningful.  But to have power you have to take power – and administrators and clinicians simply aren’t willing to give their power away.
  • Paid family members and volunteers are not ‘professionals’ (nor should they be, especially if people are truly looking for diversity) but health care is built on the structure of professionalism.  Having laypeople make decisions in ways that are not tokenistic is just too much for most bureaucrats.
  • The way patients/families are treated at the organizational level mirrors the way they are treated at the point of care.  If there is bad morale and low patient satisfaction at the bedside, then efforts in patient engagement at the organizational level will suffer too (and vice-versa).
  • Many people in senior leader positions do not understand the role of families/patients in organizations.  They might understand the bedside engagement, but the patients in organizations concept is new and poorly understood.
  • Health care culture is also exceedingly slow to change to new ways of doing things.  Patient engagement at the organizational level shakes the status quo. In the Canadian health care system, the status quo does not wish to be shaken.
  • Patients or families in paid positions, on councils or committees do not have a common job description, standard training or defined core competencies. In other words, they are not regulated in any way.  The health care environment is one that demands structure and regulation in order to gain credibility and respect.
  • Patient engagement still butts up against some professions and threatens them (I’m thinking of those clinicians who think it is their job to advocate for patients, not the job of patients and families themselves).

Replacing patient and families with clinicians swings the pendulum back to where we were 15 years ago.  Clinicians are now speaking for us instead of creating environments where we can speak for ourselves.

I’ve laid out the reasons for this problem and will continue to ponder solutions.  I would suggest that patients and families first abandon any tokenistic work right now and search for the rare environments where true engagement is still happening.  Be picky about how you spend your time.

For instance, my colleague Isabel Jordan has found success as a family partner in the area of research.  While some hospitals still have the reputation of being champions in patient and family centred care, meaningful engagement in the hospital world is becoming rare.  If you find a place where you are being treated as a respectful partner, hang onto them tightly.  These scarce places seem to be going the way of the dinosaur.

It is time for patients and families to regroup and rise up again on our own and abandon the shackles of the health care system.  How do we do this?  I think the answer lies outside of the system, not within it.

One thing we can do is to keep telling our stories on our own platforms instead of politely waiting in the wings for conferences, hospitals or universities to extend us invitations to share our experiences.   Use your voice now.  While the system now seems to prefer that professionals take over speaking for us, never let them steal your story.  Your story is the one thing that is yours. Protect it fiercely.  Now is the time for us to take our power back and we will rise up again, one story at a time.   xo.

Edited to add:  I’ve written about both best practice + poor experiences in patient engagement here: here, here, here, here, here, here, here, herehere, here. 

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 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.

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.