as evidenced by his smile

ativan

This quote nicely sums up most of my oncology appointment experiences.

I pounded out a long account of the terrible oncologist appointment I had on Thursday. It felt good to write it, but only in a revengeful kind of way.  I was going to post it but then I deleted it.  Anybody who is a patient already knows what a demoralizing appointment looks like.  The oncologist seemed annoyed with me from the moment she walked in the door.  I did not know whether she was having a bad day or if it was me that was annoying her with all my stupid questions. I left the oncology clinic worn down. I shuffled across the street to the cancer hospital to get my blood drawn, just wanting the whole afternoon to be over.  This was a day to be endured.  I hate being a patient.

I sat in the waiting room and the lab tech came out and called my name.  I had my head down and was feeling small and dejected.  I looked up and he was smiling at me.  In my current state, this made me nervous.  I smiled back, just a little bit.  He smiled wider.  This smiling business was contagious. Here was someone who seemed actually happy to see me.  I didn’t feel like an intrusion or bother to him as evidenced by his smile.  I could feel myself start to relax.

He walked me to the lab and invited me to sit down.  “What arm would you like?”  “Um, right,” I said – “I’m left-handed.” (I don’t know what difference that makes, but I was feeling a wee bit less guarded and thought I’d dip my toe into some conversation). “I’m left-handed too!” he said, delighted.  We concluded that means we are both creative. We smiled at each other some more.

I didn’t even feel the needle to take my blood go into my arm.  He praised my veins and asked about my Christmas.  “How many kids do you have?” he asked.  And later, “I can’t believe you have a 25 year old!”  I was still smiling, feeling a bit silly that I was so easily flattered.  My mood was shifting.  I was now feeling considerably better, sitting in a chair at the cancer hospital getting poked by a needle for five vials of blood.

What defines these people as heroes even though they are not almighty, or rich?  -from Hero by Evie Jordan

This kindness was such a contrast from my appointment across the street with the oncologist.  This young lab tech went to school for two years to be a medical laboratory technician.  The Internet tells me he probably makes less than $30 an hour. He’s near the bottom of the hospital pecking order. My oncologist went to school for more than ten years and is one of the queens of the hill at the hospital, status-wise.  She makes considerably more than $30 an hour.  Guess which person I’d consider a hero?  Guess which experience with which person I’d rather spend my time thinking and writing about?

This lab tech has much to teach the rest of the health care world about connecting with and caring for patients.  I feel deeply grateful for him.  As Evie Jordan says,  A hero is someone who will help, even with the little things.  I’m here to tell you that the little things matter.  They matter a whole lot, especially when you are sick, vulnerable and scared. To health professionals everywhere, know this: your compassion is evidenced by your smile. xo.

 

 

my small comfort list

mycanceremotions

I’m drifting away from my breast cancer diagnosis and treatment from two years ago. Time gives me the ability to reflect, although I can easily be thrown back into the well of despair that epitomized that dark time in my life.

Sometimes I get messages from other women who have been diagnosed with breast cancer. I wish I could tell them: do this one thing and you will feel better. Alas, I have no one thing and no easy solutions. Healing is highly individual and one size sadly does not fit all.

I tried many things to calm the f*ck down. This is a list of the things I attempted over the past two years to make myself feel better. If you are going through a dark time for whatever reason, you will make your own list. It won’t look like mine. I tried a lot of things on for size. Maybe one of these ideas will give a wee bit of comfort, even for a little while as you find your own way.

1. Walks Outside
I promised my daughter that I’d walk every day. At first I begrudgingly kept that promise, then I became obsessed with getting my steps, but now I’ve settled down and look forward to my daily walks. I actually allow myself to enjoy the combination of fresh air, nature, movement and time to myself.

2. Mental Health Therapy
I tried the public mental health system first, but I was only was assigned four appointments at the Cancer Agency. Then I had to find my own private therapist. Asking around for someone who understood cancer stuff helped. Anywhere that advertises cancer supportive care would fit that bill, like Callanish or Inspire Health in Vancouver, or Wellspring elsewhere in Canada.  Do not be surprised like I was that our public system does not offer these services.  Publicly funded oncology care is medical, not holistic.

3. Small Comforts
I started scratching around for small comforts, like stopping for a coffee before oncology appointments and going for cheap sushi and to the bookstore afterwards as a little gift to myself. This helped me endure rude receptionists and cold oncologists if I knew I was going to treat myself well afterwards even if others did not.

4. Cancer Retreat
This is about finding ‘peer support’ or what I call friendships with others going through the same thing. I wrote about my experience at a cancer retreat here. Many retreats have subsidies for registrations to help you access them and if you can manage to take some time away. It is an investment in you.

5. Meditation
I’m no meditation guru, but I went to a few classes run by the Calm Monkey and picked up some basic tips. I used meditation techniques when I was under the radiation machine, waiting for the doctor to come into the treatment room or being squished in a mammogram device. Breathing and counting helped me calm down, even a little bit. I think it gave me back some control. Here is a quick and fast version that I watch in the mornings to start my day.

6. Music
When I drove to oncology appointments, I played the Tragically Hip really really loud on the car stereo. Yeah, Gord Downie had cancer and there is something about his heartfelt pre-cancer lyrics that speak to me. Courage, my word, it didn’t come, it doesn’t matter Courage, it couldn’t come at a worse time. Find your own Gord Downie (or borrow him.  He’s great).

7. Water
I was lucky enough to go snorkeling after my treatment. Sometimes when I can’t fall asleep at night, I think of that feeling of floating with the fishes. To re-enact that feeling, I tried out a few sessions at the Float House.

8. Love of Good People
I struggle to feel myself worthy of love. (Long story). So I purposely lean into hugs from people who love me unconditionally and not to push them away. This means embracing love from my husband and children, taking phone calls from my open-hearted, non-advice-giving friends who make space for the listening and I try to fully accept kind words from others. (This means I had to also get rid of the love of bad people who hurt me, which wasn’t exactly comforting but it was a necessary evil).

9. Podcasts
I listen to podcasts on my walks. Mostly the Good Life Project and Everything Happens. There’s a podcast out there for you if you are like me and struggle with finishing an entire book.

10. Mindfulness
I like to watch this video. I also sometimes think: ‘stay in the moment, this is all you have,’ so I don’t zoom ahead with fret about the future.

11. Purposely Seeking Joy
Yeah, I’m one of those people who push away joy too. I have to purposely seek it out and pause to enjoy it (see #10). Joy mostly resides in the little moments, like my son’s laugh or the birds chirping in the tree, which are always there for me if I just pause to pay attention.

12. Writing
Obviously I wrote a lot in all my various states on this blog. I also took a poetry class. This was healing for me, especially if I found out that my words were helpful to other people. You don’t have to share or publish your writing for it to be useful to you.

13. Reading
I kept a list of books that helped me. The Emperor of all Maladies helped me understand the stupid cancer. Audre Lorde’s work about speaking up was very important to me. Like music, find writers who speak to you.

14. Quotes
If I didn’t have the energy to read a whole book, I’d glom onto quotes from podcasts or Instagram or Twitter, like those from dearly missed @ninariggs, @cultperfectmoms and @adamslisa.

15. Art
I’m no visual artist, but my friend Lelainia kindly spent the day with me teaching me how to collage my photos from my radiation therapy days. This was extremely healing for me. In lieu of actually creating art, looking at art helps too, which is why bookstores, art galleries and museums are some of my ‘calm the f*ck down’ places to go.

16. Distraction
I was mostly too upset to be distracted. The geographical cure helps if you can swing it – even short road trip or a 20 minute ferry ride to Bowen Island was comforting. My friends kindly distracted me for taking me out for nice meals or meeting me for a drink too. Accept kind distractions.

17. Mindless Entertainment
Related to distraction is mindless entertainment. Here’s where I actually take a bubble bath and read an US magazine and enjoy it. (Note that bubble baths are buried in about 50 other things I do and bubble baths are not the only solution as the self-care movement wants you to think). Movies, Netflix (Ali Wong!) and plays work this way too. I can only watch comedies now, go figure. It is important for me to laugh.

18. Medication
Yeah, I’ll be honest here. If I’m really freaking out, I’ll take a prescribed Ativan. There’s nothing wrong with asking your physician for medicinal help. I also shamelessly like a glass (or two) of a full-bodied red wine. Marijuana has never done it for me, but I know of others who use it and bonus, it is legal now in Canada!

19. Being OK with Feeling Shitty
In the end, sometimes life is just shitty. My therapist said: maybe it is okay to feel sad or upset or angry. I used to shove those hard emotions away. Now I can say: this is okay. It will pass. I won’t always feel this way.

The wise Kimmy Schmidt said: “Do you think you can handle this for 10 more seconds? I learned a long time ago that a person can stand just about anything for 10 seconds, then you just start on a new 10 seconds. All you have to do is take it 10 seconds at a time.”

Get through the first ten seconds and then the second…sometimes putting your head down and getting through one step at a time is all you can do. Sometimes you have to lie down and take a rest. Mostly, cut yourself some slack.

To the women who have approached me who are in their own dark time, I want to say this: accumulate your own small comforts. You are deserving of finding peace in your hearts, to temper the suffering life offers us, even for a few moments.

Ps: I’ve written about the whole self-care/self-compassion thing here: Leaning Out and Beyond Bubble Baths.

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.

Screen Shot 2018-10-15 at 9.56.07 AM

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.