I Wrote A Book

audre-lorde-quotes

The Late Great Audre Lorde

This is the story of my book. Bird’s Eye View is a collection of stories of my life lived in health care – from a failed nursing student, to a health care bureaucrat, to the mom of a child with a disability to a patient and family engagement consultant to a woman living with breast cancer.  It is written for patients + families and anybody who works in health care – clinicians, staff, health faculty students and administrators.  It is for anybody who has an inkling that stories can change the world.

I started writing this book two and a half years ago after I left my job at a children’s hospital.  I was in deep grief when I resigned, but everybody said to me:  Now you can work on your book!  So that’s what I did for three whole months.  Then BAM I got diagnosed with breast cancer.  That was kind of a bummer and shut down the book action for a very long time.

During those dark hours, I barely managed to keep a journal, but I am thankful I did.  I called my journal Grace Period although I was hardly graceful.  I was what Arthur Frank calls in The Wounded Storyteller a narrative wreck.

I finished treatment and waited out my narrative wreck.  You may have read some of my narrative wreck pieces here on my blog. I was so neck-deep in crisis and grief that I couldn’t continue the book.  Plus, the book was about kindness and compassion in health care and to be honest, as a cancer patient, I wasn’t being treated with much kindness or compassion in health care.

I put the book aside and took poetry classes, regularly visited my therapist, tried meditation, did some paid consulting work and went for many long walks.

A year and a half after I was diagnosed I could finally bear to look at the book again.  Since some time had passed, I started writing more reflective chapters about having cancer. I added them to the words I had already written about being the mom of a kid with a disability.  The caregiver had became the patient and this was hard stuff for me to reconcile.

In January I finished a manuscript, all 100,000 words of it.  I started shopping around for a publisher and received a number of rejections.  This was not unexpected but it sure was disheartening.  Some of the rejections were plain mean.  One Toronto publisher said: I passed your manuscript around to our editors and there was no enthusiasm for it.  Ouch.

After every rejection, I paused to lick my wounds.  The Toronto-publisher route was clearly not working well for me.  Then I was introduced to Hambone Publishing in Australia.

I’ll leave the Hambone story for another time.  It is a beautiful tale of serendipity and connection. I will say they are a perfect fit for me.  The manuscript is with my editor now and she is doing the hard work of a structural edit. 100,000 words is too long. I’m very pleased that I found a fabulous illustrator – she is a local Vancouver artist – for the book’s cover.

I’m going to do this book my way.  I’m committed to the Patients Included principles for events.  I will bring other caregivers and patients along with me on this ride.

Bird’s Eye View will be released in the fall of 2019.  If you would like to follow along with my book adventures, fill out the form here to get on my mailing list.  You can also follow @birdseyeviewbook on Instagram.

I’m doing the thing I’m most afraid of, and I’m both scared and excited all at the same time.  xo.

 

to feel alive

Aaron Waddingham

Photo by Ryan Walter Wagner at Goodside Photo

This is my fourth day on Granville Island in Vancouver killing time and staying close as Aaron attends a Teen Improv camp at the Improv Comedy Institute.  I’m tucked away in a courtyard nursing a coffee and watching the gaggles of tourists stroll by.

Aaron’s high school drama teacher suggested that improv skills would help his burgeoning acting career.  So here we are for two weeks on Granville Island.  I do the driving and Aaron does the work.

Earlier this year he had an audition for a part in a TV series for a character with Down syndrome (spoiler alert, he didn’t get the part).  I asked him how he felt after his audition with the casting director.

“I feel alive!” he said, his eyes big, his arms outstretched.  His dad and I know that it is our job to support our children so they can do the thing that makes them feel alive.  For my oldest son it is music.  For my daughter it is nursing.  For Aaron it is acting.

Through a series of circumstances and a touch of serendipity, Aaron has been signed by a talent agent.  Roles for disabled actors are scarce, but we have been assured that opportunities are growing.  Aaron now has to put in the work to hone his skills just like every other actor.  He already works one-on-one with an acting coach, is in high school drama classes and a local acting school has welcomed him with open arms into classes this fall.  This summer, he tackles improv.

On the TheatreSports website it says: The Vancouver TheatreSports League and the Improv Comedy Institute are actively looking to encourage diversity within the improv community. As improvisers, we tell stories and we want our stories to reflect the experiences of our greater community.  They’ve backed this assertion up with action.  Aaron has been welcomed into the teen program like the other kids, together with kindness and accommodation from the Outreach Coordinator.

I promised to hang around the theatre in close range just in case they need me.  Now I’m not sure what I’m needed for.  After the first class, the instructor emerged with a big smile and reported a good day.  Yesterday I glimpsed Aaron standing in front of the class, giving suggestions for topics for skits (chickens, I overheard him say).  He’s holding his own.

This morning there was a new development – he crossed the street by himself before he disappeared out of sight into the building.  (This is a big deal in our world).  His mother is slowly releasing her apron strings.  He lopes out after class with his headphones on and a grin on his face.  “I am independent, Mom,” he informs me.

To me, the creative community seems to demonstrate an authentic commitment to diversity and inclusion.  They have been more accepting of my son than the academic or sports worlds ever have.  Perhaps creative types grew up knowing what it felt like to be different, to be on the edges, to struggle with belonging.  I felt the sting of exclusion, never fitting in, being called an ‘artsy-fartsy’ in the yuppie and jock decade of the ’80’s.

It wasn’t until I transferred from Nursing into English in university and immersed myself in Shakespeare and art history classes that I finally found my people.  I was the quiet bookish girl with oversize glasses and frizzy hair.  It was other people in the arts who accepted me just as I was – all awkward, introverted and breathlessly passionate about words.  (I’m still that way).

And so this is my dream for Aaron too: that he’s accepted just the way he is.  He’s a funny guy, he loves to perform and yes he has Down syndrome.  Ask him and he will firmly tell you:  I am an actor.  I wish I had a fraction of his confidence.

He feels alive when he is performing.  At our core, isn’t that what we all want – to feel alive?

I’m grateful to Rachelle Goulter at Vancouver TheatreSports, his agent Lena Lees-Heidt, his acting coach Lane Edwards and LyreBird Academy of Dramatic Arts for all giving our boy a fighting chance.  I hope the next time I write about Aaron the actor he has landed a part.  But in the meantime, we are sitting back and enjoying the ride.

How Patients Included is really about Inclusion

 

I stopped going to health conferences when I was diagnosed with cancer two years ago.  With this pause came perspective.  As a mom attending pediatric conferences, I often had to beg for compensation if I was a speaker.  Even if I was an attendee, I had to go through long, drawn-out negotiations with conference organizers and accounting departments to get my expenses covered.  Every single time I went to a conference there was a cost to me financially and personally.  There was a cost to my family too.

It started to feel like I was an add-on to the conference as a token patient just so they could self-accredit and say they were Patients Included.  With my pause in conference-attending, I now see that I didn’t just FEEL like a token patient, I WAS a token patient.  I now have the clarity to observe that conference organizers treat other patients and families shabbily too.  I would like this practice of shabby treatment to stop.

I was going for one of my regular walks recently and chatting on the phone with Isabel Jordan, who is the co-author of both this great article about compensation and the Patients Included movement.  We have had many conversations about partnering with patients.

My epiphany as I was crunching along a forest path was this:

The principles behind Patients Included at health conferences and the inclusion of disabled people are the same.

Inclusion is inclusion.  Take a look at the now-famous diagram of inclusion that I’ve posted above.  Let’s look at each of those circles under a health conference lens:

1.  Exclusion

For years, patients have been excluded from health conferences.  (This still occurs – even with Patient Engagement conferences.  If you can’t see the irony with that…).  For instance, at cancer conferences in Canada, the idea of inviting patients is still a brand new thing.  Most times we just don’t get invited.  Or one super-celebrity patient gets invited and nobody else. That, too, is exclusion.

2.  Segregation

Sometimes a group of chosen patients are invited to a conference.  There patients are ‘allowed’ to have their own sessions, separate from the rest of the conference.  This is better than exclusion, but it is still segregation.

3.  Integration

This where patients are ‘allowed’ to attend and ‘allowed’ to be in the same room as the other conference attendees.  I’ve been to those conferences – us patients often clump together at sessions and social events and not recognized by the other conference-goers.  Literally nobody saves us a spot at their table, so we sit at our own tables.  Most conferences are like this.  Patients are reluctantly invited and not embraced or accommodated to be full participants.

4.  Inclusion

This circle depicts inclusion.  This is something to aim for and illustrates the intention behind the whole Patients Included movement.  See all the coloured dots that aren’t green?  Those spots are all the patient attendees.  Here we are on conference planning committees, invited (and paid) as speakers and sitting at the big kids’ table with everybody else.  It is important to note that there can be exclusion even within this inclusion model.  That happens if the same patients are invited and attend conferences over and over again.  Within patient groups there can be exclusion too.

Hanging out, patiently waiting, on the other side of inclusion is belonging.

In talking about inclusion of kids with disabilities, Sara Pot – paraphrasing from John Swinton – says it best:

Inclusion = we’ll make room if you show up.
Belonging = you need to be here and you’re missed when you aren’t here.

Now apply this to health conferences.  You have to work your way through these circles and do inclusion right before you even get close to belonging.  Right now, many conferences struggle with even making room and helping patients show up.

Cynical me wonders if health conferences truly want patients at “their” conferences or if they see Patients Included as a tokenistic trend and a flavour of the month.  This would be a real shame and I think a grave misuse of the intention of the original Patients Included charter.

Optimistic me believes that authentic patient inclusion at health conferences can be done.  The key is that patient inclusion (and eventual belonging) will only happen if we do it all together.  If you are unsure if your conference is truly Patients Included – beyond accrediting yourselves and putting Patients Included on your website – you need to ask patients themselves.  Bonus points if you seek a diverse assortment of opinions and don’t just talk to your favourite patients.

power

Note:  If you are interested in improving your health conference, I’d recommend you consult with patient partners early on in your planning.  They can help light the way. I do know patient partners who do this kind of work – send me an email and I can connect you up…

a good day

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the view from here

Lately, I’ve had this weird post-cancer clarity about what makes a good life. This is partly inspired by Atul Gawande’s question for people who are close to the end of their lives: What does a good day look like?

You do not have to wait until you are at the end of your life to consider what makes a good day. In fact, perhaps we should not wait until the end of our lives to consider this question, for we all are on a finite allotment of days.

One of my startling thoughts when I was first diagnosed with cancer was this: But I thought I had more time. None of us have as much time as we think. It is therefore time well spent to ponder what makes up a good day for you. For me, I’ve interpreted this as the simple things that give me joy.  (What a good day looks like is of course different for everybody).

What makes up a good day for me?  Here is my Good Day List:

  1. Sitting on the terrace at sunrise, drinking a strong cup of coffee with my love.
  2. Watching and listening to the hummingbirds at our feeder.
  3. Going for a walk, preferably outside.
  4. Connecting with my adult kids and/or a close friend.
  5. Listening to a podcast.
  6. Shopping at places like cheese mongers, bakeries, butchers and fish markets.
  7. Eating good food.
  8. Doing a bit of writing.
  9. Taking a hot bath while reading a trashy gossip magazine.
  10. Watching cooking shows in the evening with my son.

What I like about my Good Day List is that even if I was sick, I could do a version of most of these things. If I was unable to walk, I could still sit on my terrace.  If I couldn’t sit on my terrace, maybe I could still hear the birds. If I couldn’t eat, perhaps I could still watch cooking shows with my son. If I couldn’t write, maybe I could listen to a podcast. It gives me a wee bit of peace to think if I get sick again, I can still do some of my good things.

It is a collection of these good things that make up a good day that constitutes a good life. What does a good day look like to you?

everybody has mental health

mental health

Earlier this week, I attended a session on Optimizing Mental Wellness in People with Down Syndrome at the Down Syndrome Resource Foundation.  The speaker was Susan Fawcett, their Director of Therapy, Behaviour and Family Support.

Susan’s presentation reminded me how my own mental health and my kid’s mental health are all wrapped up together.

It makes me a wee bit nervous to talk about mental health. First there’s the regular ole mental health stigma.  Then there’s the incredible pressure I feel to be the strong mom who advocates for system change all the time.  I even feel pushed into cheerleader mode, aka: Everything’s Fine!  Fine!  Fine!  My kid is the best kid with Down syndrome EVER!  

Of course, that’s all bullshit.

Here I will repeat my mantra:  Being a human being is stressful.  Having children is extra-stressful.  Having a kid with Down syndrome adds yet another layer of stress.  But 95% of my stress comes from systems (health, human services and education sectors) and the hostile, ignorant ableist world.  This is not my son’s fault.  I won’t talk about his mental health here because that’s his business, not mine.  I don’t want to trod on his dignity.  But I can talk about my own struggles.

If we are truthful, we all have mental health stuff, whether we have a disabled kid or not.  It just takes becoming vulnerable for our stuff to be exposed.  I soldiered through the strong mama bear persona for 13 years after my son was born.  It took getting cancer two years ago for my whole house of cards to come tumbling down.

How I wish I had been more preventative about my own mental health.  I should have regularly seen a mental health professional to at least deal with my own childhood stuff. But I didn’t – the crisis of cancer is what introduced me to the therapist’s office.  Now I think and talk about mental health a lot.

Susan’s presentation was timely for me.  She offered helpful strategies for mental wellness, both for our kids and ourselves.  Susan gave me kind permission to share her talk, so I’ve summarized her points. As she told me, she wants to give this mental health piece more airtime.

Mental Wellness Strategies for Children with Down Syndrome – Susan Fawcett

  1. Help your kids engage in activities to experience both pleasure and mastery.  Susan called this behavioural activation.
  2. Make sure your child has a peer group of children of similar intellectual ability, especially starting in late elementary school.
  3. Consider social skill training, like the Zones of Regulation.
  4. Always look for self-esteem boosters for your child, like chances to be more independent + have choice, opportunities to teach others and regularly talk about your child’s strengths and unique talents with them.
  5. Give your children regular praise.  Interesting, Susan has observed us parents don’t offer enough specific, enthusiastic praise to our children. I’ve been guilty of that – falling into ‘corrective’ mode with my own son, which is a way of being that is focused on the negative.  I’ll be more aware of this going forward.
  6. Cognitive behavioural therapy can help all of us – of course including people with intellectual disabilities too!
  7. Talk to your child early and often about having Down syndrome.  (Books like Paint the Octopus Red can help explain genetics and for older kids, shows like Born this Way are awesome for role-modelling and offering a glimpse into the future).

Mental Wellness Strategies for Families – Susan Fawcett

  1. Acknowledge having a child with an intellectual disability is stressful.
  2. Organize date nights with your partner.
  3. Finding a social support network is crucial.
  4. Begin a mindfulness practice to help with stress.
  5. Take advantage of informal or formal respite.

For families, I’ve written about the concept of self-care before.  Self-care is way more than bubble-baths.  Here are my essays:

My small comforts list
Moms and Mental Health
Beyond Bubble Baths
Leaning Out

Dr. Yona Lunsky also wrote a great piece about this topic for families called Save Some Love for Yourself.

As Susan importantly pointed out, kids with Down syndrome have high levels of empathy, meaning they are more in tune with our own moods and stress level.  If we don’t overtly care for our own mental health, it will affect our kids.  This alone is a good reason to at least start talking about mental wellness in safe spaces in our own community.

If you are hesitant to look at your own mental health, at least do it for your children.   After all, your head is screwed onto your body.  We are in such denial about the simple fact that human beings also have rich mental and emotional lives. You do not have to wait until you get cancer like I did to take care of your whole fine self.

reflections on reflective practice

story book

Look at this beautiful book of stories.  This was gifted to me by folks who work at a disability agency. They were a recent client of mine.

I was on an eight-month contract to do an assessment of the level of the family engagement at the organization. I had conversations with families, staff and partners about ideas to better support young families as they navigated the minefield of systems when their child is first diagnosed with a disability or delay.

This is all fancy-sounding talk for I went for coffee with lots of people and listened carefully to what they had to say. Everybody spoke in stories. Then I compiled their ideas and put them in a report along with recommendations for positive change. I was merely a vessel for their stories.

When I started in the family centred care field a dozen years ago in a children’s hospital, I only thought of stories in terms of the family and youth stories. I learned that professionals have a need to tell their stories too. For stories are what make us all human. In fact, stories are how we communicate about ourselves. We don’t refer to ourselves in terms of data or numbers. We use words (or photographs or visual art or dance or music or film…) to share pieces of ourselves with others.

I finally figured out that staff engagement and family engagement need to happen at the same time. You cannot have one without the other. That means that staff must have a safe place to tell their stories too. If they don’t, they sometimes hang onto their own stories in unhealthy ways and this can interfere with demonstrating empathy and providing compassionate care or service.  Telling your story can set you free.

In health care, sharing stories happens in what is called reflective practice. In my layperson terms, reflective practice is sharing a story about something that happened, figuring out what you learned from it and making a plan to do things different next time. Sadly, reflective practice is rarely a priority in overly busy and frantic workplaces. Being still and simply listening to each other is becoming a lost art. Let’s start a movement to bring it back.

Reflective practice can be adapted to any kind of work environment. Facilitating reflective practice sessions with those in caring professions is one of my favourite things to do.

I start easy with icebreakers, asking round table questions like: what’s the story behind your name? Once trust is established within a group, we work up to sharing stories about the stories behind why they chose their profession. These types of stories really get to the heart of why people do what they do. Colleagues find out full ‘origin’ stories that go beyond where their workmates went to university. Pieces of hearts are slowly shared.

This can lead into facilitated conversations about what are their challenges working with patients or clients or families. I don’t offer solutions. I listen carefully and sometimes reframe questions. Sometimes I’ll tell a bit of my own story as a mom of a disabled child or as a cancer patient to provide a different perspective. Often someone else in the group has a good idea to share with their colleagues. Many times people know the answer to their challenges in their own hearts. Sometimes people just need a bit of space to unlock it.

There are many other formal ways to nurture storytelling and reflective practice. Schwartz Rounds is an example of reflective practice in action.  Dr. Rita Charon’s Narrative Medicine movement uses the power of art for clinicians to share their stories. On Twitter, Dr. Colleen Farrell created #medhumchat, which is, “reflection, empathy, & connection in healthcare through discussions of poetry & prose.” You don’t have to be a physician to borrow some of these good ideas for your own workplace.

Everybody has a story. And everybody has to look after their own hearts so they can look after the hearts of others. This is where compassion is born.

Stories are complex creatures. Here are a few of my tips about storytelling in the professional realm:

  1. Keep it real. There is a fine balance between cheerleading and complaining. I try to share a positive story, then if I have a negative story, I always suggest what could have made it better. Constructive and authentic stories help lift morale and give a sense of hope.
  2. In groups, listen more than you talk. Check your own judgment and be as open-hearted as you can when listening to another’s story.Health care and human services are about serving others, so…
  3. Be careful of getting stuck in your own story. Sometimes your own story can overshadow or diminish the importance of the stories of the people you serve.
  4. A grief counsellor once told me: It is okay for people to have their story. And for you to have your story and for those two stories to be different.
  5. Be wary of comparing or minimizing stories. As someone once famously said: this isn’t the Olympics of suffering.
  6. Don’t steal other people’s stories for your own gain – especially people who have less power than you. (There are many authors who are guilty of this).
  7. Please don’t ignore other patient stories if you yourself become a patient. Share the stage and your microphone with others. Nobody’s story is more important than someone else’s, no matter their title or position.
  8. The only person you can represent with your story is your own fine self. Be mindful about speaking on behalf of others. (As a mother, I’ve been guilty of speaking on behalf of my children – especially my son who has an intellectual disability. I’ve been working hard to support him to share his own story instead).

It is always an honour for me to bear witness to someone’s story. I wish for more safe places where all kinds of people are guided to share their story.  In the telling comes the healing.  And we all need healing in our own ways.

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.