Beyond Bubble Baths

I was honoured to have my story chosen to be shared on the This is Brave website.  This beautiful site was created to foster community and share stories of women’s mental health.

I’ve written snippets of my travels in mental health since my cancer diagnosis.  This story is a reflection on all I’ve learned the past 18 months about taking care of myself – more than that – about unpacking why I actually didn’t like myself very much.  Self-loathing is a horrible thing.  As Arthur Frank says, it is me writing as the Wounded Storyteller but now more from my scars than my wounds.

I tackled the old notion of self-care in this essay and called it Beyond Bubble Baths.  I also hope to put an arrow in the heart of the whole narrative of having to be brave and strong when you have cancer (or a kid with a disability or become a mother or your marriage breaks up or when you are grieving or during any other significant life event).  There is great pressure in our society to ‘present well’ ‘be strong’ ‘get back to normal’ because of people’s own discomfort with sitting with someone in their pain.

This is Brave is a popular Instagram site and it features the stories of younger moms.  I’m 50, hardly a young mother, so I wrote about what I wished I had known about loving myself as a younger woman and how that would have changed the way I mothered my three children.  I would have allowed the hard emotions, both in myself and my kids.  This was hard to admit and then write.  As I said, my children have had a strong mother, but not a happy mother.  For that I feel deep regret.

Part of the This is Brave experience is that the writers are gifted a photo shoot.  Although the idea of getting my picture taken made me break out in a fear sweat, I gamely drove out to the studio.  Julie from Julie Christine Photography was lovely and immediately put me at ease.  It is weird to see photos of me as usually I’m the one taking photos of my family (or of food).  I know that having photos of myself mean that I’ve stepped out from beyond my various roles (of mother, wife, children’s health advocate) to become more visible on the road to fully embrace myself.

Here is one of my favourite pictures. I am wearing pink because I hate the whole breast cancer awareness crap (also known this month as Pinktober) and I’m taking pink back. It is a sad picture because it is okay to be sad.  If you feel sad that means you have a chance to feel joy too. xo.

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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.

more bold actions please

smoke

I’m watching the events of the Canadian Medical Association’s Health Summit in Winnipeg unfold on Twitter.  I’m pleased they offered patient scholarships and that there are 27 Patient/Caregiver Advocates there in amongst the 700 health professionals, including a handful of my friends and colleagues, like Julie Drury, Donald Lepp and Courage Sings.  I admire them for their perseverance and commitment, as they have travelled great distances to show up because of their dedication to partnering with health professionals.  I’m sitting here in my bathrobe at my kitchen table, not even having bothered to apply for a scholarship.  I’m weary. I tip my hat to these patient/caregiver leaders.

At the very same time, there is a Doctors Stopping the Pipeline Bold Action and Witness Rally this morning, led by the Canadian Association of Physicians for the Environment (CAPE). Physicians have gathered at the Westridge Marine Terminal in Burnaby, risking arrest if they get too close to the gates and violate the court injunction because they believe that climate change is a threat to public health. (I believe that to be true, too, and my husband is down at the rally representing our family).  The sky is thick with smoke from the wildfires today.  The sun is but a red dot in the sky.  I refuse to accept this as the new normal.  Wildfires have been made much worse by climate change.  It is time we connect the dots.

There are 700 physicians in a ballroom at the Convention Centre in Winnipeg and a handful of physicians standing before the Kinder Morgan gates in the suffocating smoke.  Thousands more physicians are working hard today in Canada in emergency rooms, surgery theatres and clinic offices.  They are doing the work that needs to be done, but something’s gotta to change.

(Patients are)…the greatest unused asset in health care system today – Dr. Brian Brodie, Chair Canadian Medical Association

This quote comes from Dr. Brian Brodie from the Health Summit this morning. While I wince at being called an asset, I agree with this philosophy and appreciate the notion of patient engagement has been identified as important concept for physicians.

I’m both a patient and a caregiver.  I’m always looking for opportunities to share my feedback, stories and wisdom with health professionals.  But post-cancer, I’m tired of having to be the one to hustle.  I put up my essays on my blog and whoever reads it, reads it.  I’m exhausted from begging for a seat at the grown up table.

What needs to change?  More bold action and more witnessing, like at the rally this morning.  If you want to partner with patients and families at point of care or in your organization, just start doing it already.  This would be a bold action.  Grab a page from the CAPE playbook and stand up for what you believe in.  Come to work every day to bear witness and hold space for the suffering of patients and families. Don’t turn away.  I’ve had enough with the hollow words on strategies and mission statements followed up with no sustainable change.

I hope that every one of those 700+ delegates leave the CMA Health Summit with a firm commitment to follow through on their bold actions.  I guarantee that change will not happen waiting around for the system to change.  Change will happen one single person at a time, and the only way we can do this is together.

a good experience

boob squish

Today I had a dreaded mammogram appointment.  Dread, dread, dread.  Fret, fret, fret.  Ativan, ativan, ativan.  (Don’t worry, I only took one Ativan).

I have this theory if all us patients write detailed thank you notes to health professionals who care for us in exemplary ways – those who go ‘over and above’ – and we make sure we also send these notes to their managers, then maybe, just maybe, it will dawn on administrators what is important to patients.  If these health professionals are held up as role models, as identified by the patients, the people they signed up to serve, then the others who do not get recognized or worse, those who get complaints, will pale in comparison.  Then the health system will tip towards the champions and consider their actions as best practice.  The others will slowly fade away.  This is the vision that I dream in my dreams.

I once called this the Thank You Project.

Here is the letter I sent to the manager of the young lady who was my mammogram technologist today:

August 7, 2018

I wanted to write a note to say kudos to a mammography technologist named Sarah who did my mammogram this afternoon.

I was diagnosed and treated for breast cancer last year. I have had mammograms at other centres and have to say that the experience with Sarah today was over and beyond what I’ve experienced anywhere else.

Sarah was welcoming. She introduced herself by name, made great eye contact and gave me a warm smile, which immediately alleviated my anxiety. My last mammogram was excruciatingly painful, as my left breast still has quite a bit of edema from my treatments. I was quite nervous and woke up early this morning worrying about the appointment.

Sarah’s tone set me at ease. (The dim lights and soft music are nice touches in the waiting room too). I was happy to be offered a gown (other places don’t have them – you have to strip in front of the technologist, which is uncomfortable) and Sarah walked me through what was going to happen. She also let me know what she was doing as she was doing it, and checked on me as she went along to make sure I was okay. She apologized for the pain that was inflicted on my sore side.

Afterwards, she told me what the next steps were with the report, so I knew what to expect and how to follow up with my physician myself.

These all might seem like minor things but they are very important to patients. Us folks who have already had breast cancer arrive at follow up appointments carrying along the extra baggage of trauma from our treatment and having had the life-shaking experience of having had cancer. Often it was the mammogram that identified we had cancer to begin with, so going for mammograms reminds us of that dark and horrible time when we first got diagnosed. Of course, we are also scared that the mammogram might find that the cancer has come back – recurrence is a deep fear that never goes away.

Being treated by kind staff with respect and dignity helps alleviate some of our suffering. The experience with Sarah was about a thousand times better than the one I had at a private DI place a few months ago. After I saw Sarah, I felt calm and ok, not traumatized and rattled as had happened at the last place.

Please pass on my gratitude to Sarah for her professional and compassionate work with us vulnerable women and let her know she’s helping us heal by making a positive contribution to the well-being of cancer patients. She does this through her smile, her gentle approach and clear explanations. She’s a real rock star and your hospital – and us patients – are lucky to have her.

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.

invincible summer

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I wrote this essay after attending the Callanish Retreat at Brew Creek Centre in late April.  A version of this piece will also be published in the Callanish newsletter.  

My breast tumour was treated well by health professionals over the course of my cancer diagnosis and treatment last year. My mass was identified, removed and destroyed. The remaining parts of my breast were radiated for good measure. Eventually, my physical scars began to heal, my hematoma shrunk and my burned skin faded.

The rest of me – the bits that were attached to my cancerous breast and housed my mental, emotional and spiritual health – were largely ignored by clinicians. I craved kindness in every health care interaction, even trying to make eye contact with the parkade attendants to no avail. I rarely found the loving kindness I so desired in the hospital. To them, I was just another middle-aged breast cancer patient. It was as if I was an unwanted breast mass and nothing more.

I endured my treatment deep in a state of emotional suffering. I had trauma from the hospital experience and was rattled by catching a glimpse of my own mortality. Even worse, cancer had triggered all the unresolved issues in my life. It was as if all my sorrow that I had carefully packed away the past 50 years was on full display on my kitchen table. I had no choice but to look at all this ugly pain that stemmed from my family of origin. I had no tools and little support beyond my dear husband and beloved children, who were also healing from my cancer in their own way.

I was discharged from counseling sessions at the hospital after four short sessions. “Where do I go now?” I sobbed at my last appointment. “Google therapists,” I was told.

Thankfully, Callanish Society showed up in my search results. I embarked on counseling appointments with Susie Merz, trekking across the city for regular sessions as the rest of me slowly began to heal.

I embraced everything about the Callanish house – the streaming light in the building, the warm greeting when I walked in the door, the peaceful hushed atmosphere, the tea offered to me at the start of each session. It was everything I was missing in my patient experience at the hospital.

I signed up for the Callanish retreat, but was terrified of the idea of being part of a group. I’m an introvert – fine in one-on-one situations, but I struggle in larger settings.

The retreat date crept closer. But because of my work in therapy with Susie, where she gently guided me through my pain, I was feeling stronger and more resilient. I didn’t know what to expect, but I felt ready to be with other people who had cancer too.

To prepare me for the retreat, Susie sagely recommended: “You will have to allow people to be nice to you.” As a caregiver, mom to a kid with a disability and classic nurturer and pleaser – as silly as it sounds – allowing people to be nice to me was a challenge.

Driving up to the gravel parking lot at the retreat location at Brew Creek Centre, there was a group of lovely women standing there, smiling and waving, awaiting my arrival. My room was beautifully appointed and tucked away on the second floor of a wooden cottage. There was a massive vase of gorgeous flowers to welcome me. This was my first glimpse into what was to come in the next five days.

We began each day meditating, learning qigong and slowly waking up to the sounds of beautiful crystal singing bowls. There was hard personal group work in the mornings, carefully facilitated by professionals, focused on loss and death. The afternoons were for rest and relaxation – with therapeutic touch, music and counseling. The day was studded with joyful meals, prepared with love by the volunteers in the kitchen. There was camaraderie, laughter and tears. Each day ended with an evening council, where everybody – staff, volunteers and participants – gathered in the great room around the crackling fire.

I was treated with unconditional kindness. I did allow people to be nice to me because I never once felt judged. Just being me seemed enough. It gave me comfort to know that every person working at the retreat was there to share her gifts with us. There was a clear belief in the concept of benevolent service – an approach that is sadly missing in today’s health care world. Us retreat participants were not a burden – instead we felt like a joy. I had a sense that every touch at the retreat was carefully planned and tweaked based on years of wisdom. I wasn’t scared because I was safe.

Here are the fragments of what remains after the Callanish retreat: I have access to a new serenity inside of me. I don’t wake up feeling panicked anymore. When worry crosses my mind (and negative thoughts do still come) I now have tools to pull up to let them wash over me. I can close my eyes and breathe, listen to music, walk in nature, or simply remember my time at the retreat. If I start ruminating in the past or fretting about the future, I pause and centre in the moment. I look up in the sky and think, “It’s a beautiful day.”

My husband says that I smile easier now. For anxious, tormented me – these newfound skills are the ultimate gift for me and my family. Despite cancer (or maybe because of it?), I have finally found a sliver of peace in my heart. A deep, heartfelt thank you to all the kind souls dedicated to the Callanish retreat for guiding me towards my own invincible summer.

Edited to add:  I so wish we had more Callanish in health care.  More care, more service, more kindness, better food, more acknowledgment of the trauma patients and families have been through, more love.  xo.

 

as we all carry on

Podcast-V2

I’ve managed to wrench myself from social media (although I cannot escape the clutches of Instagram) and this has freed up mental time during my daily walks.  If I’m in a beautiful setting, I walk listening to nothing – only the rustle of the leaves and the chirping of the spring birds.  If I’m relegated to strolling along an ugly urban area, podcasts keep me company.

White Coat, Black Art on CBC with Dr. Brian Goldman is in my podcast feed.  I was thrilled last week to hear my friend and colleague Isabel Jordan interviewed for an episode about PTSD in hospital settings.  She was clear and eloquent about the PTSD that has haunted her since her son’s PICU admission years ago.  This episode covers a lot of important ground: the painful procedures inflicted on patients; the lack of pain management techniques used by hospital staff; the need for mental health support for all family members who bear witness to traumatic hospital situations; and the associated lack of public mental health services in Canada. Isabel is especially poignant in her description of how her rare disease community has helped to heal her.

 Life isn’t just about being patched up.  It’s carrying on afterwards.
                                                                                                         – Isabel Jordan

I truly believe some of the trauma that happens in the hospital could be avoided with a more empathetic attitude.  I, too, have held down my young son with a disability while he was getting blood drawn. I wince at this memory, which surely has been etched deeply in his head.  It does not have to be this way.  Discovering EMLA, a numbing cream that I apply before his blood draw, was revolutionary to his experience.  Another mom told me about numbing creams  – not one health professional has mentioned it to me – ever – in the past 15 years.  (Check out the fabulous It Doesn’t Have to Hurt website for tips on pain management for children).  Clinicians, ask yourself:  Does it always have to hurt?

Us adults experience pain and trauma in the hospital too.  I have written about my experiences with health care on this blog and in a recent guest editorial with the Journal of Family Nursing.  The Affronts to My Human Body essay outlines my accumulations of scars throughout the years and during my recent treatment for breast cancer.

I know many hospital procedures are painful and this is sometimes unavoidable.  But I wonder how much pain is avoidable with a more compassionate approach.  The podcast Everything Happens’ last episode called Can You Hear Me Now talks about empathy in health care.  It offers a brilliant interview with Alan Alda and Kate Bowler.  There’s too much good stuff here to quote.  Just listen to the episode, especially if you work in health care.

Alan talks about connection, plain language and the curse of knowledge in medicine.  If I didn’t have a crush on him when I was a teenager watching Hawkeye Pierce in M*A*S*H episodes, I certainly do now.

At the end of the podcast, Alan turns the table and interviews Kate.  He asks her why she wrote her book and why she does this podcast.  She answers:

What is it like to live after you give up on some of your most deeply cherished lies, like everything is going to work out.  Are there still true and beautiful things that we can still learn in the dark?

To me, this echoes Isabel’s sentiment about carrying on after the trauma and through the pain.  Cheers to those who give voice to the stories that happen in the dark – through being brave enough to be interviewed, or by hosting podcasts or writing or just simply by being a listening presence and not turning away from the pain.  I think both sharing and listening to stories helps us all, as Ram Dass says, to keep walking each other home.  xo.