what are we afraid of?

Death. We are afraid of death.  Or at least I am afraid of death.

This is a question that I posed to Shelley Snell when we met for coffee last week.

Shelley has been living with Metastatic Breast Cancer (MBC) since 2013. She was diagnosed with early stage breast cancer in 1996. But then the cancer came back again and again – first in her breast and then it moved to other parts of her body. When breast cancer shows up outside of the breast, like in the bones, lungs or brain, it is called Metastatic Breast Cancer – or Stage IV. This means it is terminal. 90% of women with metastatic breast cancer die of MBC.

I am a person who had early stage breast cancer. I’m both curious and mortified by the fact that when our early-stage treatment is over, we often leave our metastatic sisters behind. (Note: men can get breast cancer too. My pronouns are female in this piece, but what I say here applies to all genders).

Death is a cold hard fact that I didn’t allow myself to think about before I got cancer. I naively thought breast cancer was treated at the cancer hospital and voila! It was gone. I did not know that for one in three patients, it returns in metastatic form.

Nearly 30% of women have a recurrence of breast cancer that is metastatic. Another 6% are diagnosed metastatic “de novo,” which means their initial diagnosis of cancer is metastatic. So that means roughly 36% of everyone who gets breast cancer becomes metastatic or terminal at some point during the course of their disease.

One in three. That’s a lot of people dying. This is one Canadian every 2 hours. 

Metastatic cancer has been called ‘misunderstood’ or ‘forgotten.’ And why is that? It comes back to death. We do not want to talk about death. So we leave those who are dying behind.

I’ve seen these fractures in communities before. When my son was born with Down syndrome, we lost a number of friends and family who could not ‘deal’ with his diagnosis. Then when he was five, I watched in horror as our own Down syndrome community abandoned a mom whose son with Down syndrome was diagnosed with leukemia.

Now the rate of childhood leukemia for kids with Down syndrome is ten times the rate of the regular population. So leukemia weighs heavily on our minds when our kids are little.

But for our own community of moms – many of us had been abandoned when our kids were diagnosed – to leave one of our own families? This mortified me.

What are people afraid of? Death. This young boy with leukemia represented our biggest fear. So instead of supporting this family in their pain, people ran away as fast as they could. They could not turn towards this family’s pain because they represented their biggest unspoken fear – that their child would die.

This happens too in the cancer world. In our rush to ‘put cancer behind us,’ we abandon those who live with metastatic cancer. So much so that Shelley tells me many women with MBC are not welcome in lower stage breast cancer support groups.

I represent the grim reaper to them – the manifestation of a future they don’t want to imagine. -Susan Anthony, MBC Advocate

That means women with MBC end up isolated and alone. Teva Harrison beautifully captured this sentiment in her book In-Between Days. Teva died on April 27, 2019 of MBC at age 42. I’ve shared the video she made for the website MBC Time at the top of this post.

The metastatic community has struggled to get traction in advocacy, organizing and fundraising because they keep dying. This sounds harsh but it is true.

Shelley believes the only way the MBC community will be able to effectively address the disparities in research funding and multiple challenges of living with metastatic disease is if early stagers like me band together with women with MBC. There’s also a fracture between young women with breast cancer and older women with breast cancer. As someone diagnosed in her 40’s, in between the older and younger worlds, I have felt this too. The only way there is going to be any progress on metastatic cancer is if we work together.

That means we have to stop running away. Oncologists, family and friends keep telling us after lower stage treatment is finished: ‘get back to your life.’ But the fear of cancer recurring is real. Cancer recurrence is a real thing.

There can also be animosity between diseases. “Some people say your disease gets all the attention, while others say, your disease, your problem,” Shelley shares.

The same is true in the disability community. I’ve heard this about having a child with a disability: your kid, your problem. This is a sad testimonial to our North American obsession with being independent and rejecting the concept that one day we might become vulnerable and need one another.

Shelley has great knowledge about the history and politics of breast cancer.

“During the birth and evolution of of the pink ribbon culture, support was often based on the notion of ‘don’t scare the newbies,’” she says.

Women with MBC scare the newbies. Us early stagers are in deep denial that metastatic breast cancer can happen to us. We think that if we do everything right with treatment and are compliant in following doctor’s orders, our cancer won’t come back.

But it doesn’t work that way, as cancer is too smart for these easy explanations. Shelley believes it’s unlikely MBC will be “cured” but will be controlled one day as a chronic disease. There are many environmental and genetic factors at play. Sometimes random shit happens to clean living and otherwise healthy people.

“Research is also looking more closely at ‘prevention’. Preventing MBC is preferable, but what about those living with and dying from MBC right now? Have we become expendable?” asks Shelley.

It is in everybody’s best interest to support MBC research. Shelley tells me only around 7% of research funding raised for breast cancer is directed to MBC research. That’s a low percentage for a disease that will come back to haunt more than one third of everyone diagnosed with breast cancer.

People with MBC are often left feeling like collateral damage, Shelley says. I believe there should be no woman left behind.

In the research field, organizations like Metavivor (USA) are focused on directing 100% of donations to fund MBC research. The MBC Project recruited participants for their international open access research project through social media. Five years ago there was a handful of conferences addressing MBC research, in 2019 there are regional, national and international conferences.

Through advocacy, MBC Patient Advocates like Shelley have emerged as a powerful voice, demanding equitable research funding and expanded participation in clinical trials, as well as promoting improved patient engagement at all levels of medicine. There is still much to be done.

I listen carefully to Shelley. She carries so much wisdom that I’d be a fool to turn and run away, even though I am afraid of death too. But Shelley doesn’t scare me. She’s articulate, passionate and has led a fascinating life, which has included living in Africa. We quickly find a connection over coffee, discovering we both lived in Manitoba for a spell.

She says bluntly: “We are so uncomfortable with hard emotions, but life is painful. Life hurts. Turn towards the pain and face it.”

So what can us early-stagers do? We can be welcoming to our MBC sisters at support groups and in our lives. We can stop treating other human beings like they are contagious. If the thought of MBC triggers our own fears about death, maybe that’s a sign it is time to look at our own emotions and values around dying.

We can support financially too. Shelley and her friend Susan Anthony started MBC Canada to provide information and resources to the Canadian MBC community. They launched their website last fall.  There’s a donation button on the site. I just contributed $50. It is easy to do and took me two minutes. It isn’t much, but it is something.

Shelley wants to keep the website going and organization growing, but Susan died last October within weeks of their website launch. Shelley is having a tough time keeping up the site while living with MBC herself.

Every little donation helps. MBC Canada’s focus is supporting the Canadian MBC Community by providing information, resources and services to MBC patients. They’re committed to directing donated funds to the benefit of the MBC Community, not to salaries and administration costs.

To move forward, first and foremost they need people. They need to raise funds to start their assistance programs. They also need Advocates familiar with MBC. If you can give your time, please connect through this form on the MBC Canada website.

Always research carefully before you give money – many of the more mainstream cancer organizations focus on lower stage awareness and put very little money directly towards metastatic disease support and research. Canadian Cancer Society donations targeted for MBC Research should be marked “for metastatic breast cancer research” on the payment instrument. Funds raised at CIBC For the Cure Walks can now be directed specifically to MBC Research by incorporating the word “Metastatic “ into the team name.

I invite those without cancer and those with early stage cancer to consider these questions: Why are we afraid of people who are dying? Is it that we don’t want to look at our own fear of dying?

Perhaps, as Shelley tells me, looking at our own fear will be the one thing that will actually set our hearts free. I don’t know about you, but I’d don’t want to live out the rest of my days in fear. I want the kind of heart that’s been set free.

As my book publishing date inches closer, one thing that I am committed to going forward is to amplify other voices through my book, this website and my Twitter feed.  I take the lead from people like Marie Ennis-O’Connor and Nancy Stordahl, both women who had early stage breast cancer and who are committed to supporting women with MBC.  The power lies in all of us doing what we can do. This is what I can do. What about you?

This essay is dedicated to Shelley Snell, whose wisdom and generosity informed this essay.  It was written in memory of so many women who died of metastatic breast cancer.  They were deeply loved and are sorely missed: Teva Harrison, Susan Anthony, Nina Riggs, Lisa Bonchek Adams and Beth Caldwell among thousands of other women.  And of course, the godmother of us all, Audre Lorde.  

 

 

 

 

sue on the radio talking about cancer

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I had the opportunity to be a guest on two Voice of America Teen Wealth radio shows with host Brandi England. The first show went smoothly at the end of April. (Here is the first episode).

The second show was last night. The topic was cancer. Here it is if you have 54 minutes to spare.

It has been two years since I was diagnosed and I have not spoken out loud about cancer beyond a therapist’s room.  My immediate family don’t really enjoy being reminded of my cancer and friends rarely bring it up.  I’ve written a lot about cancer but never had a public conversation about how it feels to have cancer.

Nobody wants to talk about cancer. That’s a fact. This is because cancer is hard to talk about. I found that out last night. This second show was less smooth and there were more um’s and ah’s from me. I was much less polished than the first show, where I talked about being a mother and having a kid with a disability. Cancer is not that familiar to me. I’m still figuring out what has happened to me over the past two years and it showed in this radio conversation.

Why was it so hard for me to talk about cancer?  It is the relative new-ness of the topic for me. It is because it is hard to inject humour into the conversation and I like to use humour to connect with audiences.  I mean, with other people who have had cancer, we often laugh hysterically at the ridiculousness of it all.  But for the general public, laughing at cancer is taboo.  (Although at one point on the show, I shouted:  I DON’T NEED YOUR THOUGHTS AND PRAYERS).  I’m always aware that the people I’m talking to probably had a loved one with cancer and watch my words to make sure I’m respectful of that inevitability.  People have all sorts of whacky theories about cancer, too.  Cancer is a muddy minefield of a conversation topic.

In the end, here is some of what I said:
Cancer stopped me in my tracks. It was my great reckoning.
It’s actually pretty horrible telling people you have cancer.
Cancer really messes with your mind. It is lonely and isolating.
Pretending to be brave and strong is exhausting.

I also talked about the horrible task of telling your own children that you have cancer.

Afterwards, my husband said: you did a good job with a hard topic. I’ll take that. Instead of beating myself up, I’ve decided to practice self-kindness.  I do want to bring cancer out of the shadows and uncover its dark secrets. But it is tough. Today I have, as Brené Brown says, a vulnerability hangover.

The cancer part of my life is not wrapped up with a tidy pink bow. There is no happily ever after.  My story continues on, messy and undone. And if we are honest about it, life in general is messy and undone too. We are all but works in progress.

 

too much cancer

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Cancer is everywhere.

In the past month, just in my circle:
A friend’s partner was diagnosed with breast cancer.
A colleague’s young sister has stage 4 cancer.
A close friend’s wife is dying from metastatic cancer.
A beloved author and illustrator dies of metastatic breast cancer.

As someone diagnosed with cancer myself, I feel as if – oddly – nobody in our government has really rung the alarm bell about the cancer.  It is a shrug on the health ministry’s agenda, regulated to a special agency for special treatment.  But collateral from cancer litters the entire health system.  In emergency departments, family doctors’ offices, rehab clinics and mental health professionals’ couches.  Cancer is not just a cancer agency problem.  People with cancer are everywhere.

The thing is, cancer isn’t even that special.  It will eventually haunt one in two Canadians.  It isn’t only a disease that we will all get if we grow old.  Young people are being diagnosed with cancer.  There is never an ideal age to get cancer.

Cancer is something nobody wants to talk about, including the government.  You can empty a room by announcing a cancer diagnosis.  Having cancer is an efficient way to painfully weed out unsupportive friends and family.  Many people run for the hills when you have cancer.  The thing is, cancer touches all of us.  It is an awfully big elephant in the room.

The response to feeling uncomfortable about cancer is patient blaming.  This happens with oncology professionals, government bureaucrats and researchers alike.  ‘Friends’ wade in too, saying in a backhanded way:  “Well maybe now you will adopt a healthier lifestyle.” That’s their measuring stick.  Like my lifestyle wasn’t healthy and that’s why I got cancer.  So what if it wasn’t?  What if it was?

This tired old patient responsibility mantra is trotted out, without recognizing that sometimes shitty things happen to people.  It is easier to blame us than look at the other reasons for cancer.

Our environments.  Toxins.  The food we all eat.  The air we all breathe.

Alas, we don’t know how cancer actually works because our government’s epidemiology departments are mum on the reasons we get cancer.  There’s a fancy shiny cancer research building across the street from the downtrodden patient cancer treatment building in my city.  But nobody from there once asked me where I grew up or even about my ‘lifestyle’ when I showed up after my diagnosis. I didn’t even have an extensive medical history taken by anybody.  I was merely put on a conveyer belt of treatment.  I was sent home a few months later and told:  Put this behind you.  Get back to normal.

But I can’t put it behind me.  I can’t get back to normal.  People all around me are dying of cancer.  Early stage cancer can come back with a vengeance with late stage cancer – metastatic, terminal, Stage IV.   Some people skip early stage all together and are diagnosed with Stage IV.  Collectively, we turn our heads away from these people.  I live in daily fear that my breast cancer has come back, migrated to my bones or my brain.  Every pain in my hips or ache in my head reminds me about the thing I’m supposed to forget.

But if I say:  I grew up downwind from the oil and gas refineries and I got cancer at age 48, I’m scoffed at as being a quack.  Or I had a close family member who worked at the refineries and has had two types of cancer, there are more shrugs and eye-rolling.  Don’t you know that cancer is all your fault?

Or what of the people of Fort Chipewyan, downstream from the oilsands, who got cancer, lots of it, rare kinds of cancer?  And while this report has quickly become discounted and buried by the news outlets, even having a slight increase in cancer rates means that people are suffering and dying.  And is even having a normal cancer rate okay?  How has this been accepted in our world?  Is cancer just inevitable?

Eventually cancer catches up to everyone.  We get cancer.  A loved one is diagnosed cancer.  My friends’ loved ones die of cancer.  It should not be dismissed.  Yes, it is sometimes treatable. But it is also causing a great amount of suffering in the meantime.  And cancer can kill us, my friends.  Even pink, fluffy breast cancer.

If cancer was like SARS or H1N1, there would be a public health emergency.  But as long as we blame patients for their own cancer, and governments skirt responsibility for looking into the environmental reasons for cancer, cancer will just be a shrug.  ‘Oh well, you should have eaten better and exercised more,’ they say.  And simply blaming us is a dying shame.

 

no news is not good news

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My phone rang a few weeks ago. I looked at the number and it was the cancer hospital. My stomach lurched into my throat and I picked up the phone. It was an unnamed booking clerk, calling to schedule me back for more diagnostic testing, a response to the report from my recent mammogram.

You and I know this is never good, but she couldn’t tell me why I was being called back. If you don’t tell me why, I’m going to presume the worst. Had they picked up that my cancer had spread?

Yes this is how me, a person who had cancer thinks when I get phone calls from the cancer hospital.  I couldn’t get any answers, so I scheduled the tests and put down the phone in a cold sweat.

I was thankful when my family doctor called me a week later. She had just received a copy of the report from my previous scan and read the report to me over the phone. I was being called back in because of two ‘suspicious spots’ on what I call my good breast – the one that didn’t have cancer in it. Now at least I knew. I settled down a bit. ‘Suspicious spots’ aren’t great but they don’t mean that I’m automatically going to die.

I absolutely benefitted from having that knowledge from my family doctor of WHY I had been called for more diagnostics. But a booking clerk won’t tell you the why. And not everybody has such a thorough and thoughtful family doctor as I do, who would take the time to call me to read me my report. As I’ve said before, good health care in Canada shouldn’t be hinged on good luck.

Here are my wishes:

Wish #1a: I can access copy of my own damn diagnostic imaging report.

OR if that’s too pie in the sky:

Wish #1b: When you call patients back for additional testing, have someone call who can actually tell you why you’ve been called back.

AND:

Wish #1c: Speed up the time it takes to get the report from the cancer hospital to my family doctor. In this case, it took TEN DAYS. I could have walked it over faster. (It is a 48 minute walk from the cancer hospital to my family doctor’s clinic. I Google-mapped it).

Now, even armed with knowledge of why I was called back, I waited three weeks immersed in scanxiety.  The tests were scheduled for a Monday afternoon. My husband and I searched for someone to pick up our son from school that day but came up empty. So my husband had to leave work early to pick him up instead. And I had to go to the cancer hospital alone.  As pathetic as it sounds, with no other family support in town, I often go to appointments alone.  It sounds sad because it is sad.

The whole afternoon deteriorated fast. I went for one test, a special mammogram. Then I went for an ultrasound. The ultrasound tech was pleasant enough, but she disappeared for a long period of time and I sat in the dark and looked at my images on the ultrasound machine. Two of the images had big orange writing on them that said: areas of concern.

Finally the radiologist came in. It isn’t good when your radiologist redoes your ultrasound. He then sent me back for more mammogram images. He did take the time to explain to me what they had found (micro-calcifications, could be nothing, could be something they monitor, could be a sign of more cancer).

At this point in the afternoon, I was emotionally exhausted. My boobs were tired of being squished and manipulated.  I was in the room alone and was desperately trying to remember what the radiologist told me as he was telling me it. I couldn’t reach my purse to grab my little notebook to write things down. I was sitting there half-dressed in a gown trying to stay calm. I kept repeating what he said so I could remember.

He ended by saying that someone would call me by the end of the week after he’d looked at all my scans to decide if I needed a biopsy or not. I did not ask him to call me personally either way. I should have asked him to call me personally either way. But I didn’t. I was out of energy and traumatized. In my head, as he was talking to me, I was also remembering how my cancer had been diagnosed the first time two years ago. It felt like Groundhog Day. I thought – unreasonably + oddly – if I am here much longer, I am going to hit rush hour traffic on the way home.

I honestly had run out of any patient advocacy skills that I might have brought with me to the appointment. My patient advocacy well was bone-dry.

I waited all last week for the cancer hospital to call me. I carried my phone on me everywhere and constantly checked that the ringer was on. Nobody called. No news is good news, right?

If you have seen Greg’s Wings, you know that no news is not necessarily good news. Someone could have forgotten to call me. The request to call me could have been lost. At this point, I’m counting on my family doctor to call me instead in a week, when she finally gets the report.

(Note: I am not writing this to solicit medical advice or for anybody to tell me I should have been a better advocate.  I KNOW I should have spoken up.  But I didn’t.  If you are a health professional, I ask you to think:  what can I personally do to change this process?).

My final wish:

Wish #2: Call patients back with results no matter what. Particularly if it concerns a biopsy or cancer.  Have someone call who can explain the results and answer any questions.

Because not calling me back does not help my precarious mental health. I’ve thought of nothing else the past week. Not calling me back does not give me closure so I can move on with my life. It is just a big gaping unresolved hole. I just need someone to call me to say: we’ve decided that you don’t need a biopsy right now. We are instead going to monitor this in six months. Then I can calm down.

Because once you’ve had cancer, getting cancer again is not a distant concept. It is something that can happen because it has already happened.  It is cruel and unusual punishment to leave us patients hanging.

Disorientation, explained

Shot with NOMO Toy F.

It has been two years since I was diagnosed with breast cancer and 18 months since my active treatment ended. There is a rare soul out there who dares to ask me about my health now. Before I had cancer, I didn’t understand how much people are really truly terrified of cancer. Want to throw an awkward wrench into any conversation? Utter the word cancer. Cancer, cancer, cancer! People screech to a full stop and there’s a desperate attempt to fall all over themselves to change the subject to anything else.  I’ve learned quickly not to bring it up at all.

After cancer treatment there is no happily every after. No back to normal. No better than ever. This Why the Trauma of Cancer Doesn’t End After Treatment is a refreshingly clear article by Layla Haidrani about life after active cancer treatment ends. It is worth a read for a better understanding of the concept of cancer recovery. This blog post by Molly called I Have Died is stunning and sad in her articulation of what it feels like to be abandoned by friends and family when you have cancer. This collateral damage is real and painful – and it followed Molly right up to her last blog post that she wrote before she died.

My friends who have children with disabilities or my old colleagues who I worked with in the children’s hospital are braver than most. Last week I met a friend for lunch and she opened up by asking: how are you doing mentally and physically? I wanted to give her a Good Friend Medal. She was not afraid to go there, to the Place of Voldemort That Cannot Be Spoken Of.

This is how I explained to her how I was doing. It is as if I got knocked down and I’ve finally gotten back up.  But now I’m awfully confused about everything.

This has taken two full years of hard work to get up, which has included the love of a good man and my three children, loads and loads of private mental health therapy, one cancer retreat, a general avoidance of oncologists and the health system, meditation and daily walks. (I explain my sources of comfort here). I’m still shaky and I fall back down easily. I feel as if my resiliency is very low and almost non-existent. I don’t feel better than ever. I feel fragile and vulnerable most of the time. I’m (maybe foolishly?) searching for a publisher for my book and my fragility makes rejection letters exceedingly painful. I think: I can’t go on. I must go on.  I’m trying to return to the land of the living but I’m finding the land of the living quite bewildering.

I want to talk about this feeling of confusion. I’ve popped back up and I’m looking around at the world, thinking: What The Hell Is Going On? I’ve shifted but the world has soldiered on unchanged. (Well, politically and climate-wise, it has actually gotten worse). I’m at the What The Hell Is Going On stage of healing from cancer.

A kind colleague recommended a book called Disorientation and Moral Life by Ami Harbin. It is a book of feminist philosophy that explains the reason for my confusion. The author talks about the serious shifts in identity that the disorientations of illness can prompt and that being diagnosed with a serious illness can be deeply disorienting.

Finally, someone who has put words around what it feels like to have been diagnosed with cancer. It is as if I was a boxer knocked out cold in a fight and I have finally come to and struggled up to my feet again. I look around the boxing ring at my opponent and the audience and nothing seems as it was before. This is called disorientation. My regular way of being in the world has irrevocably changed.

Ami Harbin does point out positives to disorientation, including an increased sensitivity to others facing their own vulnerabilities. I can feel that. I have many women with a looming breast cancer diagnosis contact me while they are awaiting biopsy results. I am happy to connect with them, even if it is only to say: I know this is hard. (Write to me and I promise to write back). My new theory is that we can change the world with one kindness at a time.  Cancer didn’t give me any gifts but okay maybe this is a gift that comes out of my disorientation.

Cancer causes odd shifts. In some ways, serious illness feels like a personal failure. All the rules I subscribed to (I am in control of my own life, I am a good person, I am a healthy person) were taken from me when I first found a lump in my left breast. Being disorientated means I need to create new rules to make sense of the world.

If you ask me how I’m doing and you sincerely want to know, I will lean on the wisdom from Disorientation and Moral Life and use this quote from philosopher Susan Brison to say:

None of us is supposed to be alive. We are all here by chance and only for a little while. The wonder is that we’ve managed, once again, to winter through and that our hearts, in spite of everything, survive.

Maybe this is called grace? I just don’t know. I have a feeling that my lesson here, at least for today, is to be okay with the not knowing.  And so ends this untidy, disoriented essay.  /Fin

 

 

 

the unwinding of the miracle

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Whenever I’ve been fraught with anxiety, particularly since the stupid cancer arrived, my youngest son comes up to me and says firmly:  Mom. Sushi, bath and reading.

My boy knows what calms me and reading is one of those things.  I made a list of books that soothed me around my cancer treatment time and I’m going to add The Unwinding of the Miracle by Julie Yip-Williams to this group of illustrious books.

The Unwinding of the Miracle book began as a blog, which of course sparks hope to those of us who write about our own cancers.  It saddens me, though, when I realize how many books were published posthumously – like Julie’s book, and Nina Rigg’s The Bright Hour and Paul Kalanithi’s When Breath Becomes Air.  I hope the authors got to see their book in some sort of form – a draft of a cover, or a printed manuscript – before they left this world.

I am still drawn to books about cancer two years after my diagnosis.  This might seem weird to non-cancer people.  As one relative said to me:  why can’t you just put it behind you?  I can’t put it behind me.  It is part of me now.  We all integrate cancer into our identities in some way, even those people who seem to be ‘over it.’ (They aren’t over it.  They just don’t talk to you about it). Reading stories about cancer, especially metastatic cancer, helps me shine a light on the Bogeyman.

The Unwinding of a Miracle is both a memoir and a commentary on dying.  I read the first few chapters impatiently, hoping the author would get to deeper reflections beyond her chronological story.  Don’t get me wrong, her story is fascinating – Julie was born blind in Vietnam, arrived in Hong Kong on a boat as a refugee when she was three years old and eventually settled in California.  Hers is the American dream story – she overcame the struggles of her childhood, went to Harvard Law School and practiced as a lawyer in New York City.  She got married, had two children and lived an affluent life in Brooklyn.  But then at age 37, she got colon cancer.

When I read a book, as in real life, I like to cut through the chit chat to get to what’s important.  I’m glad I didn’t give up on The Unwinding of the Miracle, because my perseverance paid off.   The first chapters are mostly a re-telling of Julie’s life up until cancer.  The rest of the book is a deep dive into what I call what really matters in life.

I’m always searching for commentary on the patient experience in books about cancer, and Julie does share some of that.  Her diagnosis occurs in a sketchy hospital far from home, where she’s travelled for a family wedding.  She calls the physicians there ‘dubious’ and arranges to get transferred to a ‘more reputable’ hospital.  This was a very American reminder of how having good insurance and money gets you better care (in Canada, there’s no transferring around hospitals, no matter how wealthy you are).

She speaks candidly about her forays into alternative medicine, “…I could roll the dice with traditional Chinese medicine, which after all has been around for thousands of years and is a part of my noble Chinese heritage.”  Those who mock patients for searching for complementary treatments will gain a greater understanding of why patients stray into alternatives.  (It is because we are afraid, we feel ignored by our doctors, we have lost trust in the health care system, we go through bouts of feeling desperate to do anything to live just a little bit longer).

I admire of Julie’s telling of what she terms ‘her darkness’ that hits her two years after diagnosis, as she’s deep into Stage IV cancer. “There is a natural, intuitive fear of darkness, people who are gripped by it are ashamed to speak of it,” she says.  But speak of it she does.  The book turns here from a chronological tale to one that is thoughtful and reflective.  I imagine this mirrored Julie’s own experience having cancer, which can flip flop between denial and to trying to stay on this side of cheery to dark depression and eventual sad acceptance.

Julie shares many jewels in the caves of suffering (as David Gilbert has termed) in her book.  These jewels are not necessarily shiny or sparkly but they are hard-fought jewels, hard and dusty.

I find and continue to find delusion, fake optimism, and forced cheer in the face of a devastating diagnosis where death and all the fears that come with it must be avoided at all costs.

If you aren’t afraid to consider death, if you believe that people facing death can offer up jewels in the midst of their suffering, then The Unwinding of the Miracle is for you.  It isn’t a light book but it is an important book.  Julie Yip-Williams’ legacy is her story, her children and how she lived an unflinching and authentic life, right up until the end.

 

to what end?

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Me in my glory days.  Photo credit: David Hungate

I have been slogging along as a family advocate and then as a patient in the health system for the past 16 years.  I’ve had paid positions at two different children’s hospitals where I was deeply committed to improving the family experience.  I even moved my family to another province for one of those jobs. I’ve logged countless hours as an unpaid volunteer on committees.  I’ve spoken at many national and international health conferences as an inspirational speaker.

Before that, in the 1990’s, I worked on projects for a provincial health department in funding, costing and information management.  In the 1980’s, I was a nursing student for two years before transferring into English, worked as a nursing attendant and went on to get a graduate certificate in health care administration.

I tell you all this not to prove my credibility, but to say that I’ve been around the block a few times.

All of me is tired.  Getting cancer two years ago tipped me over the edge.  Improving health care for patients and families has been my life’s work.  My ongoing experience in oncology has shown me that things have not improved for patients one little bit.  To what end have I dedicated myself to this work?  What difference have I made?

I’m not trolling for compliments.  I am truly wondering where the evidence is that my hundreds and hundreds hours of paid and unpaid patient engagement work has made any positive change.  There is no evidence in my recent clinical experience.  So why continue?

I started my advocacy work in pediatric health care after my son was born with Down syndrome.  I co-founded a community based peer support program, lobbied for a Down syndrome medical clinic and helped build a family council at a children’s hospital.  If you had asked me, I would have said that I was trying to make meaning of my son’s diagnosis.

Reflecting on this seemingly noble rationale, I recognize that this is actually rather insulting to my son.  What does this say about how I felt about the meaning of my son’s life?  Now I know that he has meaning by simply being human.  I don’t need to try to change the world to validate his worth and existence.

I would have also said that I did advocacy work to ‘make a difference.’  But other than a shot to my ego and some brief warm fuzzies for the audience, what difference did making myself vulnerable and standing behind a podium sharing my story (and even worse, sharing my son’s story) even make?  Show me the evidence.

This past week I had a trifecta of events.  I heard Andre Picard speak at City Conversations at SFU but his wonderful talk rattled me.  If I had been less worn down and brave enough, I would have stood up and asked:  What can us patients do to improve Canada’s health care system?  His clear and factual accounts of the myths of Medicare hit very close to home.

“As Canadians, we are all too accepting of mediocrity,” he said.  “Once in the health care system, you ask yourself – what the hell is wrong with the system?”  These true statements chilled me to the bone.

Then I had an unpleasant encounter with a new oncologist.  And then a terrible appointment letter showed up in the mail.  My never-ending shitty patient experience just goes on and on and on.

What the hell is wrong with the system?

All my talk about kindness, compassion and the patient voice has been for naught.  (Read Isabel Jordan’s reflections and Jennifer Johannesen’s critique of the whole patient engagement movement for food for thought).

The past two years I’ve slowly been withdrawing from the patient engagement world.  I no longer accept speaking engagements.  I don’t volunteer on committees or with projects.  I think: what’s the point?

I still rabble rouse on Twitter and Instagram and I write essays on this blog.  I’ve written a memoir and manifesto about health care called The Bird’s Eye View and I’m in the midst of editing it and shopping around for a publisher.  But writing is something in my realm, in my control.   My own self tries to treat myself with respect and kindness.  I no longer rely on health organizations to do that for me, because 93% of the time, I’m deeply disappointed.

I don’t want to deter you if you believe that patient engagement will change the health care world.  This has not been my experience but maybe it is yours.  But I must plead with you: Please don’t allow yourself to be taken advantage of.  Don’t let them ‘use’ your story.  Be particular when accepting opportunities.  Think, as I rarely did:  Why am I doing this?  What is the organization’s intention?  What is my own intention?

Zoom back 12 years and I was at a health conference with a team of family members and clinicians.  Something rotten happened there – we were there as a team, but a team decision was made and I wasn’t even consulted.  I mean, the details don’t matter – I have allowed this to happen to me a thousand times since then.

I left the conference room and went into the elevator to compose myself up in my room.  I was naive and hurt.  The pain of this made me weep.  I had thought I was a full partner and I clearly was there only as a token family representative.

The elevator doors opened and another woman walked in.   It was a mom who had volunteered with another Canadian children’s hospital for many years. I hastily wiped away my tears but I was still clearly upset.

“What’s wrong?” she said, gently hugging me.  “Come to my room and we will have a chat.”

I sat on her bed and cried, feeling betrayed and used by the clinicians.  She comforted me but then said firmly:

Don’t give ever them all of your heart.  Because if you do, they will chew you up and spit you out.  

I’ve given this same advice to patient and family advocates over the years, but have not heeded it myself.  I’ve allowed myself to be treated shittily by the system (and never ever forget that the system is made up of real live people) over the past dozen years.  Why have I done this?  I wanted to belong.  Attention massaged my fragile ego.  I had a need to be heard.  And yes, I wanted to make a difference.

No more.  I quit you health care.  Except for my minimized touches in a clinical setting – I have had cancer after all, which never really goes away – I’m done.

I’m breaking up with you patient engagement.  You’ve been a rotten partner. You don’t deserve me anyhow. It is finally time for me to take my own heart back.