culture and care

E30A4CC2-2431-4896-9BA0-9B9BEAA1E705

My husband was admitted to the hospital last week.   I have much to say about the system issues like bed utilization and the practice of hallway medicine.  But these problems are so big that I want to put my head down on the table in defeat whenever I think about them.

But the culture issues?  These are more in reach.

As the wife of a patient, I’ve been keeping vigil at bedside.  I can hear everything, for flimsy curtains in a four-person ward mask no sound.

The patient, who I love very much, has been bumped around the hospital from Emergency to the hallway to nursing unit to nursing unit.  The nursing units have offered up stark lessons in the differences in workplace culture.

On both units, the care has been competent.  Of course, the nurses are all educated and licensed, so nuts and bolts of assessment, medication administration, wound care, etc. have been similar.  The difference between the units is not what treatment has been done but how it has been administered.

On Unit A, my husband’s nurse introduced herself when she came on shift. If another nurse was covering for break, that nurse explained that when she came in. ‘I am here to take care of you,’ they all said by way of introduction.

I listened as my husband’s nurse chatted with the other patients as she went about her tasks.  She called the patient by name and lightly joked with them.  Even when I knew she was busy, she did not appear busy in the moment.  There was no edge of impatience to her voice.

All the nurses used the white board beside the bed to update the date and their names. This careful care was consistent shift after shift.  This was not the case of having one exceptional nurse.  This was the way this unit went about their business – with a smile and not a frown.

I could hear the nurses chatting about their days off in the hallway.  This gave me comfort that they liked each other and worked well as a team.  And that they did.  When a call bell went off, any available nurse would respond to it, even if it wasn’t their patient.  I was astounded at one point as four nurses responded to one call bell.  They often popped in to ask if their colleague needed help with what they were doing.  They said thank you to one another.

The nurses on this unit were, in a word, collegial.  They cared about each other so they could care for their patients.

I don’t know exactly how this happens.  So many factors come into play with workplace culture:  The nurse manager’s leadership style.  Hiring practices. Performance reviews. How mistakes are handled.  Whether staff see their jobs as a merely a job or as a calling.

My husband was moved after two days on Unit A.  I’m sad to report that Unit B had little of Unit A’s secret sauce.  Unit B was like opposite-land.  This was in the exact same hospital, so I can’t blame hospital leadership for this contrast.  The differences must have stemmed from the local level.

On Unit B, staff openly argued with each other at the nursing station.  There was rarely a smile. Staff came and went conducting their tasks in silence, without introduction.  There was no chit-chat with patients.  Two staff gossiped loudly about a patient in the hall.  Often times I was not even sure who my husband’s nurse even was.

I felt for these folks.  I knew the workplace culture was totally different here.  Everybody seemed unhappy.  Misery was a low-hanging cloud over the entire unit.

People scurried about with their head down, not making eye contact.  The corridors were crammed with so much equipment and garbage that you could barely squeeze by.  The sound of unanswered call bells echoed in the hallways.

While sometimes I despair that the emphasis on staff morale can overshadow patient-centred care, I fully acknowledge that positive staff engagement in their work is directly related to the patient experience.  Kind health care means that everybody must be kind to each other. This thread of kindness must run through all staff, physicians to unit clerks to housekeeping staff to porters to nurses. Full stop.

How could the patient and staff experience be so different in the exact same hospital, a few floors apart?  The answer is culture.  Staff culture eats patient care for breakfast.  Happy staff equals happy patients.  It’s as simple as that.


Interested in news and special content about my upcoming book, Bird’s Eye View? Sign up to my ‘insider’ email list here!

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.  

 

 

 

 

no news is not good news

Screen Shot 2019-05-13 at 10.55.20 AM

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.

on leadership

integrity

I walk a lot.  After I was diagnosed with breast cancer I promised my daughter – who was then a second year nursing student – that I would walk a minimum amount every day.  I have not missed a day of walking for two years, even if I had to drag myself out of our condo for a half hour walk in the pouring rain.

On my walks sometimes I just listen for birds.  Other times I take meetings, talk to friends or tune into podcasts.

My current favourite podcast is the Good Life Project.  I feel as if lately this podcast is working hard to be more diverse by throwing its net beyond the typical self-help voices.  I anticipate my walk every Monday when a new episode is released.  Last week, host Jonathan Fields talked to Judge Victoria Pratt.

Judge Victoria Pratt is a judge in municipal court in Newark, New Jersey.  She believes in using dignity and respect to restore humanity to the justice system – for both those people who are victims and those labelled as ‘criminals’.

I always try to apply learnings from what I hear to my own world.  Beyond a messy divorce, I thankfully haven’t had much experience in the justice system.  But I have been a patient in the health care system, had three kids in school, and have a child with a disability who uses services in the human services sector.  What I realized listening to Judge Pratt was this:

Dignity and respect can restore humanity in all systems. This philosophy can be applied to health care, education and human services too.  

Her interview had so much wisdom about leadership of any kind.  I cannot recommend it enough.

Here’s what I took away, assembled in quotes from the good judge herself.

1.  Are you serving yourself?  Or are you serving others?

Be clear about who you are serving.

2.  People need to understand what you are saying.

Speak plain English.

3.  Listen, listen, listen and learn from your listening.  Judge Pratt talks about asking people who have been arrested to write an essay about themselves.  Then she asks them to read their essays out loud in her courtroom, both to give them a voice and so she can better understand them through their stories and life experiences.

Give people voice.  Help me see you.

4. Don’t make assumptions.  Subscribe to an outreach model to go beyond your walls to foster understanding of different life experiences.  Go to people’s homes.  Meet them for coffee.  Judge Pratt shares an awesome story about going outside the courthouse to stand in line at the food truck…and how this simple act gave her a greater understanding of the people she serves.

Things are always bigger than we think.

5.  Do the work to partner with those with lives different than your own.  Don’t surround yourself with yes men (and women).

When we have differing and colliding points of views, we always arrive at the best decisions.

6.  Stop making assumptions.  Again with the outreach – if you say you do engagement, then you must do outreach.  Go to the people to meet them where they are at – not where you are at.

(People’s truth) doesn’t reveal itself in the office.

7.  Every single day, tap into your original calling.  Do not forget your original calling.  Do not let the system take this away from you.  Your calling is yours and yours alone.

It is important to show up for what you are called to do.

These are crucial concepts for leaders everywhere.  If you subscribe to the notion (like I do) that we are all leaders in our own lives, then Judge Pratt’s wisdom applies not just to those with a title and power, but to all of us too.

If she can treat people in her courtroom with dignity and respect, why can’t the rules of dignity and respect be applied to patients in hospitals, or students in schools or clients in the human services sector?  The answer is a mashup of Judge Pratt’s approach and the Brene Brown quote above:  it has to do with courage and integrity.

If you say you believe in patient-centred care, or student-led education or client-centred practice, then you must demonstrate that by treating the people you serve with dignity and respect.  This is integrity.  And this takes courage.  It is a simple and as complicated as that.

ps:  If you don’t have an hour to listen to the podcast, check out Judge Pratt’s TED Talk.

today my therapist fired me

You knew what you had to do…
and the road full of fallen
branches and stones.

But little by little…
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own.
-from Mary Oliver’s The Journey

Eighteen long months ago, cancer brought me to my knees.

In a desperate attempt to feel better I tried many things, including obsessive reading, soothing music, meditation, yoga, poetry class, art therapy, walking, podcasts, eating and not eating.  I searched for and found a good therapist. I was in such bad shape last year, wracked with panic, doom and depression, sometimes I saw her up to once a week.

I did hard inner work, including looking at trauma, my family of origin and all that shit.

Today my beloved therapist told me she’s confident I’ve done the work and it is okay if I stop seeing her. I’ve decided I’ll take her words as a compliment instead of a rejection.  I’ll move to maintenance mode and know she’s part of my safety net if I fall again.  There should not be shame in needing others.

Cancer healing is a slow and arduous process. I was privileged enough to take time off to recover and I can afford the costs of therapy, which not everybody can. I’m grateful for that.  Oncologists, insurance companies, employers, families – stop rushing people to get back to ‘normal.’  There is no more normal once you’ve had cancer.

Cancer is not a gift. I’m not fixed. I’m not better than ever. I will always be a person who had cancer.  I think I’ll mostly be okay. I’ll surely stumble again in my life – whether the cancer comes back or not – but I hope I now have the awareness and the tools to slowly get back up with love and support.

I wish administrators, clinicians and the world would realize that emotional healing is as important as medical treatment. Cancer is so much more than cutting out tumours. It is a life-rattling, life-altering experience. Maybe that’s why so many people in my life ran the other way when I was diagnosed. It is terrifying, both for me and my family and friends who steadfastly walked by my side.

Mental health matters for all kinds of recovery and it should be valued and funded appropriately. Take note, cancer agencies and cancer hospitals with skimpy budgets for the emotional care of patients.  If you don’t consider emotional care, you aren’t caring for patients.

I promise to use my big mouth and my modest platform to keep squawking about how crucial it is to consider the whole messy beautiful person in health care.  Health care is despairing today.  It needs an strong infusion of compassion and empathy – for patients, families and staff and physicians alike.  Let’s turn towards each other’s pain.

our sisterhood of pain

IMG_1414It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences. -Audre Lorde

I bring my red Moleskine notebook to every oncologist appointment. In it I’ve carefully recorded the date and the questions I need answered. I haven’t seen my official oncologist in months. I catch a glimpse of her in the staff room and hallway, but she doesn’t see me. Instead, I get the family physician in the clinic or the oncologist resident. I know this is how it works. I’m post-treatment with a boring low-grade cancer – and I don’t want to be an interesting case for an oncologist – but I can’t help but feel unimportant by this rejection.

Regardless of who I see, I try to be organized and look put together for whoever shows up in the treatment room. If I’m feeling stronger and in self-advocating mode, I’m sure to dress up and have make-up on. Is it wrong of me to do this, to lean on my privilege? I’ve learned over the years that I get listened to and taken seriously by clinicians if I look and act like them as much as possible.

I once heard of a mom who was a First Nations woman who had a kid with a disability. Every time she went to the children’s hospital, she dressed up in a (goddamn) business suit to purposely overcompensate for the shocking power inequities between patients/families and health care professionals. This power imbalance was exacerbated by the fact she was Indigenous. Is this okay? No. No it is not okay.

The worst part is that many health professionals don’t even realize they contribute to these imbalances with their obliviousness to their own privilege. I wrote a review of the brilliant book When The Spirit Catches You, which highlights this concept and is a must-read for anyone working in health care.

I don’t need someone to give me a voice. I already have a voice. I need someone to listen. If I have to get dressed up to be heard, I get dressed up. Should I be able to present disheveled in my sweatpants? I should, but then I’ll be judged. This isn’t paranoia; it is my reality.

I’ve been written off as a ‘hysterical mom’ many times when I’ve accompanied my son to the clinic or hospital. I’m careful not to show emotion – to not cry or to raise my voice, even if I’m upset. Recently, I asked a pediatric audiologist to ‘please speak to me more respectfully’ so she would stop her sighing and eye-rolling at my questions. I shouldn’t have to ask to be treated respectfully. My standards are not too high. As a patient or family member, I wish to be treated by health professionals with the same common courtesy that is afforded to a colleague.

(Oh wait, health professionals don’t necessarily treat each other courteously. Scratch that concept). Think of me as someone you love, then, if that helps. As your sister, wife or mom. No matter how well-dressed or well-spoken (or not) I am. This Cleveland Clinic classic video highlights this empathetic approach.

Recently, there was yet another article published in a medical journal written by a physician who became a patient. I appreciate the author’s humbleness and recognition of his own privilege. Here is a male oncologist/patient, asking for the receptionist to smile. I’ve been calling for receptionists smile for years, but who am I? I am just another layperson patient, a middle-aged breast cancer patient, a mom of a kid with Down syndrome. I do not have an oncologist’s platform.  Health care loves to listen to doctors.  To regular people, not so much.  Therein lies the problem.

It is important to note that I am white, well-off economically, generally well-spoken and I have worked in health care administration my entire career – specifically in patient and family experience for the past 13 years. Alas, I am also a woman and a patient, which knocks me down a few rungs on the health care ladder of status. I struggle to be taken seriously.

There is starting to be stories about how much of this power imbalance is due to gender. I applaud these stories. May they continue to be told.

I wrote about my own ‘lady’ experience in March, being brought to the Emergency Room by ambulance in excruciating ovarian pain. Joe Fassler writes about his wife’s similar story here in The Atlantic.  Sarah Frey also recently published this piece on gender-based health care for CBC news, and Jennifer Brea’s important film Unrest is about myalgic encephalomyelitis, a neglected women’s issue. There’s so much more to say about this gender imbalance in our sisterhood of pain.

The great imbalances reach other people too – those in the LGBTQI2-S community, those with disabilities, those from a different race or culture – I mean, I could go on and on. What does it take to be listened to by the health care system? Do we have to be exactly like health professionals to not get diminished or dismissed? Mostly yes, but sometimes no.  Let me share a positive example, my recent little ray of light.

I had my oncology appointment on Thursday. While I approached the day with oncology dread – waking up at 5 am with my head whirling; carefully preparing my questions in my little notebook; driving white-knuckled to the appointment; avoiding parking at the cancer hospital (the parkade there sends me into a medical PTSD tailspin); taking an Ativan to calm the hell down (an Ativan prescribed to me by an oncologist – that I only take when I have a health care appointment #irony); picking up a Starbucks to bring with me to the clinic as a crutch/my armor; walking in like my friend Isabel taught me, like I am The Queen; and asking the medical assistant not to tell me how much I weigh (the very first thing they do there is weigh me, my least favourite activity on earth).

Still, despite my many strategies to stay strong, I sat in the windowless, joyless clinic room, waiting for a knock on the door, feeling small, hunched over and nervously picking at my fingers until my hangnails bled.

In the end, the person who knocked at the door was a senior oncology resident, a pleasant man who forgot to introduce himself, but who was otherwise lovely. We had an actual conversation about my four questions in my notebook – a back and forth – where I asked and he shared information and options. I listened and then we discussed resolutions. I felt as if we did tackled all my questions together, in a most collaborative way.

I left this follow-up appointment feeling greatly relieved. If this doctor thought I was hysterical or difficult, he didn’t show it. If he was rushed or having a bad day, I didn’t know. I appreciated his careful listening and consideration. It was a good experience. Yet it was extraordinary in the fact that a positive patient experience is exceedingly rare. I felt treated with courtesy, compassion, validated, understood and listened to. This is how it should be, no matter one’s gender, gender identity, ethnicity, citizenship, religion, race, disability, orientation, dress, eloquence or otherwise. (My apologies if I’ve missed anybody or used the wrong terms – I’m still learning too).

It is humanity we all so crave from the health care system – no matter – or maybe because of – our different expressions of human identity. We are all people first. I’ll keep on squawking about health care and I hope you will too. Use your voice. I’ll end with another quote by the glorious Audre Lorde, who always says it best:

When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it is better to speak.