a muddled mammogram mess

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Edited to add:  Thanks to all the people on Twitter who think they are my oncologist.  (Sarcasm intended).  I understand that the guidelines are for screening mammograms, not diagnostic ones.  My point is that even though I presented with a ‘symptom’, I only went for a diagnostic mammogram and ultrasound (that eventually found my cancer) AFTER I presented to my doctor and asked to be referred.  If I had a doctor that dismissed me, or who didn’t believe me, I would have been sent away.  I was LUCKY to have the doctor that I had and I am LUCKY that I am able to advocate for myself with my boatload of privilege.  Breast cancer diagnoses should not be left up to LUCK.  Ps:  This is my story and I own it.  

There are new guidelines in Canada from the Canadian Task Force of Preventative Health Care about breast-cancer screening. These ones place the responsibility to be screened on the shoulders (breasts?) of women.

“…women should decide for themselves, with guidance from their health-care provider, whether to get screened.” –Carly Weeks, Globe + Mail

As a woman who has had breast cancer, I feel deeply conflicted about this approach.

I found what I termed a ‘ridge’ in my left breast one night laying in bed watching television. It was directly over my heart and it did not go away over the next several weeks. I reluctantly made an appointment with my family doctor to see what she thought.

“It might be hormonal,” she said. “But if you are concerned about it, I can refer you for a mammogram.”

I had no history of breast cancer in my family and I was two years away from being sent for a regular mammogram at age 50, so I said yes. So began the agony that is breast cancer diagnostics, diagnosis, treatment, aftermath and collateral damage that has consumed me for the past two years.

My breast cancer was early stage and I ended up with a lumpectomy and 20 days of radiation treatment. The tumour was hidden deep in my breast, right against my chest wall.

If I had not gone for a mammogram and then subsequent ultrasound, would the tumour – which was slow-growing and lazy – have killed me? Was I over-diagnosed? I will never know.

All this talk in the media about over-diagnosis makes me think: should I have left well enough alone and not even mentioned my concern to my doctor?  On one hand, not going for that initial mammogram would have saved me a great amount of suffering.  On the other hand, I DID have cancer.  Would it have come back with a vengeance a few years later?

The Task Force summary says this:
Screening leads to overdiagnosis resulting in unnecessary treatment of cancer that would not have caused harm in a woman’s lifetime, as well as physical and psychological consequences from false positives. Women less than 50 years of age are at greater risk of these harms than older women.

While I whole-heartedly agree about the physical and psychological harm, I do question the ‘unnecessary treatment’ part.  How do we know that my tumour would have eventual killed me? Answer:  we do not know if my cancer would have or would have not caused me harm in my lifetime.  There is no diagnostic test or pathology that has been developed to tell me that for sure.

Once the pathology came back as malignant, I was thrown on the roller-coaster that is breast cancer treatment. I could not not be treated once the word cancer was uttered –for the sake of my children, my husband and me. This is not a diagnosis that can be ignored.

I am grateful that my family doctor listened to me when I showed up with a concern. However, I do know that not all doctors listen to women. If it is up to us to advocate for our own mammogram screening, how many women will be dismissed?  While the shared decision-making model between patients and physicians mentioned in the report is a great best practice, how much does shared decision-making really happen in real life?  How many ominous tumours will not be found until they are much bigger and more deadly than mine was if women are not taken seriously and heard?

This report dismisses ultrasounds for women with dense breasts, which is a real thing. (My mass was detected by a subsequent ultrasound after my mammogram). It seems focused solely on saving money by displacing the responsibility for making the decision about the screening on the patient.

Let’s face it, mammograms aren’t fun. If you don’t have a good technician, this adds to the discomfort and pain. But having breast cancer ain’t fun either, especially if it is detected in late stages. I don’t mean to fear monger, but breast cancer can kill you.

This only adds to the confusion I already have about screening for breast cancer.   My one last question about it: were women who have the lived expertise of having had breast cancer represented on the Canadian Task Force on Preventive Health Care that made this decision? Cynical me thinks not.

just the way you are

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The older my son gets, the less I am interested in fixing him.  This has been a gradual dawning over the past 15 years, since he was first diagnosed with Down syndrome.  Our family now lives in a bubble that we’ve carefully created around us.  We surround ourselves with people who believe in him.  We purposely chose his high school where educators believe he can learn and grow.  If friends and family are uncomfortable or embarrassed by him they are no longer welcome in our lives.  We have lost many people. Our world has shrunk to the size of those who accept my son as he is.

It was not always this way. When my son was younger, I dragged him to many therapies and interventions.  I think this is something all families go through, which stems in part from the pressure we feel from the medical system to fix our children.  I was determined to have the best child with Down syndrome ever!  I also wonder if part of my need to change my son had to do with my own discomfort with his disability.  What’s the fine line between helping him reach his full potential and making him ‘normal’ so he will fit into the typically-developing world. This meant trying (and failing) to erase his extra 21st chromosome.  If I truly believed that disability is a natural part of the human fabric, why was I trying to change him?

When my son was born, I wanted to change him to be accepted into the world.
Then I wanted to change the world so he would be accepted. 
I finally realized that the only thing I could change is myself.
-Unknown author

This week I was at a CHILD-BRIGHT Annual Meeting in Montreal.  I stepped out of my bubble into the real world of academics, clinicians and researchers.  I realized how soft and warm my self-selected bubble is.  Not everybody feels that people with disabilities are fine just the way they are.

CHILD-BRIGHT is a collection of projects dedicated to child health research for children and youth with a brain-based disability.   Most of the research is conducted within a medical model.  I wrote down snippets of the language used by the researchers:

‘Quality of life’  ‘Deficits’  ‘Intervention’ ‘Problems’ ‘Bad Outcomes’ ‘Subjects’ ‘Populations’

I believe in my heart that most researchers are passionate about what they do because they want to help make life easier for our children.  I do appreciate their dedication to their work.  But I wonder if the dollars would be better directed to creating an inclusive and welcoming world for people with brain-based disabilities instead.  What my son really needs is a less-hostile world.  He needs people with influence to advocate for disability rights, inclusive education, employment, housing + basic assured income. (Advocacy has traditionally been a family’s responsibility.  But we are tired, so terribly tired, and we need help).

I’m not diminishing the importance of research.  But I wonder if we can expand the scope of research to include what matters to families and people with disabilities beyond chasing a cure. Maybe researchers could support families to celebrate (and help the world at least accept) our children just the way they are.

lifted up from ireland

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I’ve never met Marie Ennis-O’Connor, but I know she lives in Ireland and is a force for good on the Internet.  She runs the blog Journeying Beyond Breast Cancer and began a Social Spotlight series which highlighting unapologetic big mouths on the Internet like me.

Here’s my interview, where I had a chance to reflect on my thoughts on social media. I’m a Twitter and Instagram kinda gal and spoke about my forays on both platforms.  (I think Facebook’s harvesting of personal data is particularly evil, so I deleted my Facebook account years ago).  I was honest.  I confessed to scrolling through pictures of wedding dresses on Instagram and taking a break from Twitter because I was tired of the mansplaining.

What I admire about Marie is that she is generous and shares her space in cyber-space with other women.  She uses her platform to help others to rise up who have been patients or caregivers.  She makes room for our stories, to lift us, to give us space to share and practice using our voices.  Importantly, she doesn’t make it all about her.  She doesn’t hog the mike.

We must all follow Marie’s good example to make room for the voices different than our own.  Thank you, Marie for handing the microphone so I can speak.  I promise to hand it down the line to another woman.  And so it goes.  #peoplepower

sharing your story

sharing your story

The original of this infographic can be found here: Sharing Your Story.

As families of kids with disabilities, we get asked to share our family story and our child’s story over and over again in different settings with different professionals.  This infographic is meant to acknowledge the work that goes into sharing stories, gives communication tips to help get messages across and encourages storytellers to take care of themselves.

These tips can also be applied to other storytellers, like patients and caregivers.  Please share this widely as a tool for advocates as they build their own toolkits of resources.  It is helpful for clinicians, educators and other professionals to understand the complexities involved with asking people to tell their story too.  I’ve been fortunate to have given workshops and presentations to audiences of families about The Art of Storytelling too.  Stories are important.  It isn’t just what you say, it is how and why you share stories too.

And now a little story of my own.  This visual was designed by Karen Copeland, who has been a terrific colleague and friend.  Karen is a mom to two teenagers and is no stranger to navigating systems of care or telling her story. She is passionate about providing families with the information and tools they need to be successful. Karen loves creating visuals to strengthen our key messages, hoping to frame information in a way that is easy to understand and impactful. You can see more of Karen’s visuals at her Champions for Community Wellness website.

I first met Karen when I moved to the west coast almost four years ago.  I followed her on Twitter after reading her blog post called I am ‘that’ parent and connected with her immediately online because I’m that parent too.

Karen kindly agreed to meet me for coffee.  I knew very few people here in British Columbia and I wanted to connect up with other moms for all the ‘peer support’ reasons (to share information and resources, for emotional support) but mostly because I was lonely and lost and needed a friend.  Karen was my first mom friend here and I’ll never forget her generosity in taking the time to meet with me, a complete and total stranger who she had met on the Internet.

We met at a Starbucks and clicked immediately. We said we’d collaborate together one day and we have.  She’s designed other infographics with my content:  Sharing the News, Meaningful Family Engagement and Giving a Talk.  We also travelled to Halifax together for a CFAN conference and she and I partnered to deliver presentations from a family perspective to groups of medical students. Karen has been a personal guiding light to me as she’s navigated her own balance of being a fierce advocate and caring for herself.  She also was there for me as a listening friend when I was diagnosed with breast cancer last year.

Our story is a testimonial to many things:  how vital it is for families to be connected together, how ‘just’ moms are always more than just that – we all come with other professional skills.  In Karen’s case, she has wicked design and storytelling talent of her own.  Our story also speaks to the power of two moms bonding over lattes, which can be the engine for innovative collaborations.  In fact, I think meaningful change in the world comes from these ‘kitchen table’ conversations and not from organizations or governments.

I’m deeply grateful for Karen and the other women I’ve met since I’ve become a mother 25 long years ago.  We lift each other up.  We believe in each other. Family to family connections can spark magic – Karen and I are evidence of that.

 

my sour grapes

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This quote sums up what I observe as I see the whole Patient Engagement thing drift further and further away from the people at the grassroots.  Patient Engagement (and before that Patient Centred Care) used to be a movement of the people.  It is no longer a movement and is now wholly owned by organizations that use patient and family representatives who act, look and talk like them to pretend they are listening to all the people.  Patient engagement has become over-professionalized, less-diverse and now represents only an handful of elite chosen voices. Patient engagement does not look like the people who are sitting in the waiting rooms in clinics and hospitals.

If you are one of those voices and you are not actively creating space for people who are different from you, then you are part of the problem.

I know this because I used to be one of the chosen people.  I was a family representative in pediatric health care in Canada.  I chaired national committees, spoke at conferences and overall felt like a pretty important person.  Then I got cancer.  This was my reckoning.

In my recovery after cancer treatment and my struggles to get back up from my knees, I realized that nobody in oncology was interested in any of my wisdom about how to make things better for patients.  I was just another middle-aged breast cancer patient (and breast cancer patients are a dime a dozen in the cancer world).  This was extremely humbling.  This humbling leads me to Seth Godin’s quote.

If you are one of the chosen ones to represent patients and families, please realize that the only person you can represent is yourself.  If you are a family member, you cannot and should not represent your loved one.  You can of course speak and you should speak, but you own your own story and nobody else’s.

Always, always consider:  how can I bring other voices along with me?  How can I use my power to create opportunities to share at the podium or around the boardroom table?  How do I inform myself by actively seeking out and listening to people who are different than me?

Lately I’ve turned down speaking engagements and committee appointments because I don’t think we need another white, educated, economically-privileged voice like mine amplified to health care audiences (who are mostly just like me.  It is the ultimate in confirmation bias).  It is similar to the Manel concept – unless we start saying ‘no’ and making room for other voices, we will be the only ones taking up space.

Here are some things you can do: ask to co-present with someone else or suggest a panel format that offers different people’s opinions.  Say ‘no’ if you are the only patient or family representative, or you are getting asked to work for free.  (If this happens because you can afford it, there is NEVER EVER going to be diversity).  Use your chosen voice and power to demand change.  The time has come to share power with those who don’t act, look or talk just like you and me.

intelligent lives

The year after our baby boy was diagnosed with Down syndrome, colleagues at my husband’s workplace – a department at the Ministry of Health – were gathering donations in my son’s name for our local Down syndrome awareness walk.  Peggy, one of my husband’s co-workers, was asked if she’d like to donate.  She responded:

Why should I contribute to someone who contributes nothing to society?

Fifteen years later, that comment still stings me like a slap across my face.  As a new mom, I was naive as to how the world values – and does not value – people who have disabilities, including little babies like mine.  Peggy was my rude wake-up call.  (There is a tiny bit of irony that someone like Peggy worked for the Ministry of Health).

Peggy’s response begs these questions:  What determines a person’s worth?  Is it how much they contribute to the economy? Is it how smart they are? Is it their IQ score?

Last night, the documentary Intelligent Lives was screened by UBC’s Centre for Inclusion and Citizenship.  Dan Habib is a well known filmmaker and disability-rights advocate.  His youngest son Samuel  has cerebral palsy and was featured in his first documentary Including Samuel.  I watched this film almost ten years ago, when Aaron was five years old and it struck me then how much the inclusion of Samuel in the elementary setting benefited the other children in the class, not just Samuel.   Habib has a TEDx Talk on this same subject.  Research backs theory this up – for references, see my post What Inclusion Means to Us.

There are many people like Peggy in the world who feel that disabled people like my son are a burden.  Intelligent Lives challenges this ableist view in two ways – first by following the stories of three young adults with intellectual disabilities as they travel through their lives searching for belonging.  Micah, Naieer and Naomie’s stories are human stories, as they figure out their own identities along the way.  Woven in with their tales is actor Chris Cooper’s steady narration explaining the dark history of using IQ testing to determine potential.  As he says, low IQ was a one-way admission ticket to an institution.

IQ testing and scores have been used in the past to set immigration policy, determine a soldier’s rank, institutionalize people with disabilities and to support eugenics, including those policies in Nazi Germany.  What is particularly chilling is that IQ testing and scores are still being used today, in 2018, by our governments to determine need and ability.

I’ve been railing against IQ testing for people with intellectual disabilities for a long time.  In the Province of British Columbia, a child with Down syndrome cannot access respite funding or therapies or programs run by disability support agencies unless the families prove their child has an intellectual disability.  This is done through psycho-educational testing, which includes an IQ test.  Wait lists for this publicly-funded testing run from months to years or you can pay $3,000 out of your own pocket to have the test done by a private psychologist.

I have to prove to the government that my son with Down syndrome has an intellectual disability.  If he tests too high – over 70 – he will be turned down for services, even if he ends up with a score of 71.

Habib’s film strongly attests that IQ tests meaningless – and even worse – that IQ testing is racist and ableist.  The tests are not adapted or modified when they are administered to children with intellectual disabilities, which means my son takes a test where he is set up only to fail.  To me, IQ testing treads on my son’s dignity as a human being and is a stupid way to prove he needs therapies and that our family needs support.

IQ scores serve only to put people in boxes.  Intelligent Lives points out that people have multiple intelligences that we need to broaden our understanding of what intelligence actually is.

The deeper question for me is why do we have to prove that people with intellectual disabilities have value and worth in the first place?

If I could travel back in time, I’d march right over to Peggy’s cubicle and tell her this: Having an advanced education or a fancy job or even a high IQ does not make you a better person than my son.

My son has value because he is a human being and that’s simply enough.

 

 

 

giving a talk

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Click here for original, full-size version:  Giving a Talk.

I have attended many health conferences in my time.  Lately I’ve been observing how effectively (or not) speakers communicate with their audiences.  The best speakers are humble, human and passionate.  Alas, many folks resort to blandly reading their speaking notes off bullets on slides.  The sad result of this approach is that people leave the talk with no take-aways, no knowledge to transfer to their workplace, no inspiration and no bold actions.  What happens in the conference room stays in the conference room.  That’s a waste for everybody, including the presenters.

I found a reference that said up to 70% of conference learning is lost 24 hours after a conference.  70%!  This is my own call to action to end this conference waste.

What if speakers adopted some easy strategies to be more engaging and communicate more effectively in their talks?  While my experience includes coaching families and patients to share their stories at the podium, I would humbly suggest that all conference speakers, including clinicians and researchers, could benefit from a few simple hints.  I partnered with Karen Copeland from Champions of Community Mental Wellness to create this Giving a Talk infographic with tips to remember when preparing and delivering a talk.

Really, giving a talk should be about communicating with your audience, not just dumping information.  An engaging, creative talk, even about a technical or clinical subject, is knowledge translation at its finest.  This is not about dumbing things down.  It is about understanding your audience and how people learn. As the great Di Vinci said:  Simplicity is the greatest sophistication.

ps:  For more information about effectively sharing your story,  here are two links to information about a Family Talks and a patient mentoring program.