an open letter to radiation therapists

June 9, 2017

Letter to folks at Radiation Therapy

I’m done! I moved a crabby, wounded animal on my first week of treatment through to feeling a glimmer of joy today that this cancer business is done (for now).

You have helped me these past four weeks. Thank you. I always presumed competence, but it was your kindness and humanity that set you apart. Here are the small things that meant the world to me:

  1. Eye contact, introductions and smiles.
  2. The offer of a warm blanket.
  3. Chit chat – about the weather, colour of my nail polish, my family, plans for the day.
  4. Helping me on and off the table.
  5. Covering me up as much as possible.
  6. Telling me what you were doing as you went along. (This lessened anxiety, a lot).
  7. Your respectful treatment of my husband and son when they came in.
  8. Being open to answering my questions. Prompting me to ask questions. Saying, ‘what questions do you have’ instead of ‘do you have any questions’
  9. A reassuring hand on me.
  10. Not appearing rushed, even if you were.
  11. Your demonstrated compassion: empathy for fatigue, burning, itching, how crappy this whole experience is.

I am grateful for all those so-called little things. I think medicine can cure (sometimes) but it is the love that actually heals us patients.

Please keep doing these things, even if the system tells you otherwise. They matter.

Warmly,
Sue Robins.

(Shared with the Radiation Therapists on my unit at the cancer agency (and their manager) on my last day of treatment.  Although I’m quick to provide ‘constructive feedback’, I also strongly believe in saying thank you too).  

learning to breathe again

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The Butterflies and Pebbles Instagram feed is the best.

Yesterday when I was at a local bakery, happily meeting a new friend and drinking tea, my phone rang. It was The BC Cancer people. I felt like yelling in the phone: STOP CALLING ME YOU CREEPS but then I remembered that I have cancer.

Over three months post diagnosis, I finally start radiation treatment on Friday at 8:15 am. They give you two days’ notice and it is at the worst possible time, as I have a kid to get to school for 8:50 am, but there was no negotiating with the person on the phone.  My whole life lately has been entirely at the mercy of booking clerks.

They (whoever ‘they’ are – I’m not even sure) dole out information into little tiny packages, only telling you the details of the very next step, which pushes you into even a more heightened state of anxiety because you don’t know what’s coming around the corner.  It turns people into wounded animals.

This makes it impossible to plan or even think about the future. Besides there is a version of the near future where I might be dead, so maybe it is best not to think about that anyhow. I suddenly understand the notion of living in the moment that everybody wiser than me keeps going on about.

At the therapist last week, I was jumping around topics like I was playing whack-a-mole and she finally said to me – after I spent 50 minutes splaying out my thoughts like machine gun bullets – why don’t you put both your feet on the ground and close your eyes? I did that and immediately I calmed down. We mutually decided that my one take-away task was to work on relaxation.

On Monday I nervously drove myself to a relaxation class at the cancer centre. Now being nervous going to a relaxation class is kind of stupid. But I there I was.

There were about seven people in the room, all women, who I presumed to be in treatment or post-treatment. It opened with a roundtable segment – the anticipation of which increased my wide-eyed nervousness. To my great relief, nobody introduced themselves by their diagnosis – instead we had to share an image that was calming to us. I didn’t have an image, but I did have an auditory memory: the sound of the croaking frogs outside our bedroom window that puts me to sleep when I go to bed, and then lulls me back to sleep when I wake up my typical five or six times during the night. (Thanks for the insomnia, Tamoxifen). The croaking frogs turn into singing birds when the sky lightens and even thinking about those sounds gives me a small zing of calm pleasure.

I was the only ‘new’ person in the room and many of the ladies seemed to know each other. I also felt young, which doesn’t happen very often anymore. I’d describe many of the women there as sad. I am sad too.

The facilitator was a social worker and had a lovely way about her. I didn’t have my little notebook out, so I can’t remember much she said, except this: we can trick our bodies into feeling calm by breathing. If we take nice deep breaths, our bodies feel we are calm, even if we are not. This makes sense to me. Don’t forget to breathe, silly.

Later, we laid down on mats and were covered by blankets by volunteers and the facilitator walked about, giving a guided meditation made up of all the images we had shared with her. Then, oh my god, the volunteers came around and touched our heads and feet in a most therapeutic way and man did that feel good. This might sound weird but it really was the best thing. I realize how little we touch each other in this world, especially in health care environments. Most touch in the hospital involves inflicting  pain and this gentle touch is the perfect antidote to that. I think more healing touch could help make hospitals more human again.  (I have so many ideas to make this whole cancer experience better for patients, but nobody has bothered to ask me my opinion).

Afterwards, everybody packed up the mattresses and pillows like after a yoga class and we met back in the circle. At this point, nobody had spoken to each other directly. One woman leaned over and said to me: I like your nail polish. I smiled at her generous olive branch, tears threatening to spill behind my eyes.

I was happily and calmly heading back home when three of the older ladies said to me, ‘we meet up for coffee afterwards. Do you want to join us?’ Sure, I’ll just go to the washroom first, I said, overly enthusiastically. I went into the washroom, locked myself in the stall, and cried like I was a little girl again.

These women all knew what it felt like to be the new person. They hadn’t forgotten what it felt like to feel scared all the time. I felt on-my-knees grateful for this kindness.

Later, in the cafeteria, I found out little pieces of their own stories and I shared a bit of mine. When I confessed I only had stage one breast cancer, one woman admonished me: you don’t ever only have cancer, she said. You have cancer and that’s always a serious thing. Then they said, ‘watch out or we will mother you!’ I blinked back tears and nodded, biting my lip, starting to break open again. Being cared for is the one exact thing that I so desperately need.

Tomorrow morning, I will be at the cancer centre, wearing a thin hospital gown. When I’m laying at the mercy of the radiation machine, as they line up the punishing rays with the tattoos on my poor beleaguered left breast, I will close my eyes, remember to breathe, surrender and draw upon the spirits of the kind women who have gone before me.

Cue the frogs, my friends.  Namaste.

how the little stuff is the big stuff

Screen Shot 2017-04-18 at 8.43.33 PMI’ve been to three cancer physicians the past three months since being diagnosed with breast cancer.  (Let’s all agree not to call my experience a journey or battle okay?).

There aren’t any navigator programs for cancer patients here, so my dealings have been directly with physicians.  I wish I had access to a nurse or nurse practitioner, but that is not how things are set up in British Columbia.

My first physician was a surgeon who was all business.  Yes, I know surgeons aren’t famous for their bedside manner and as far as I can tell, she did a fabulous job cutting out the cancer out of my body.  People say surgeons can’t get emotionally involved with their patients and still be able to cut them open, so I tried my best to understand this.  She reviewed my results with me too quickly for my muddled head, but thankfully I saw my family physician a few days later and she translated the pathology and my surgeon’s scribbles into a language I could understand.

My second cancer physician was the medical oncologist (shortened to the funny-sounding MedOnc in the cancer world).  I mostly saw her resident, not her. This oncologist kept calling me Ms. Robins which was disconcerting and made me feel like she was talking to my mother.  She was brisk to the point of being dismissive.  I don’t need chemo so she didn’t have a lot of time for me and waved my silly questions away.  It is true that she had other patients to see who had more serious kinds of cancer, so I tried my best to be understanding of her approach.  I took my puny little cancer and slunk away as fast as I could.

I have been a mess after each of these appointments, hand-wringing and second-guessing everything the doctors told me and ruminating on every word they said for days afterwards.  Ask my sweet husband – this has not been fun.  Frankly, I have been acting like a wounded animal.  I realize I was struggling to trust what surgeon and medical oncologist told me because I did not sense they cared about me.  Well, maybe they did care about me, but they didn’t demonstrate they cared about me. Also, I’m not a good mind-reader, so any caring they might have in their hearts went entirely undetected by broken (and admittedly-sensitive) me.

Yesterday I dragged my demoralized self to the hospital to meet yet another physician – this time a radiation oncologist.  The nurse ushered anxious me into the clinic room.  The first thing she did was she asked me if I wanted a warm blanket.  A warm blanket!  I love warm blankets.  This appointment was off to an unusual start.  My shoulders instantly relaxed and I breathed a bit easier, cosy under my coveted blanket.

Next, my new doctor knocked on the door and introduced herself to both me and my husband.  She was genuine and lovely.  She reviewed my pathology results in regular person language, leaning on gardening metaphors and pausing to ask what questions I had.  She asked me what kind of writing I did.  She patted me on the leg a few times, which gave me great comfort.  (There’s not enough healing touch in health care.  To me, that simple touch gave me a little peek into her caring heart).

She asked me if I wanted to ask my list of questions first, or if I wanted her to explain things and then I could ask any remaining questions afterwards. (I chose the latter).  A few times I started to say something and stopped, worried about interrupting her – and she immediately paused and gently said:  yes, yes, what did you want to say?  She did not appear rushed in any way, even though she had a roomful of patients in the waiting room.  She even shared her email address so I could ask any follow up questions when I got home.

By the end of the appointment, the wounded animal in me had disappeared.  The kindness settled me down.  I felt connected to my new doctor and that connection was blossoming into the beginning of trust.  This is more than merely being nice – it is about laying the foundation for a relationship.

All the little actions helped to heal my fragile heart – from the warm blanket, the introductions, her gentle approach, her hand on my leg and the way she held space for my questions. All this so-called soft stuff is so much more than just kindness.  With her words, gestures and actions, this physician was demonstrating respect and caring too.  It was not only what she did, but how she did it.

I might still have cancer, but I am finally at peace for the first time in a long time.  This is because I feel taken care of. These little things may seem like nothing to you, but in my current state of heightened vulnerability, they mean just about the world to me.

be kinder than necessary

It has been a long & emotional week.  I flew to Ronaoke Virginia for the great honour of being one of the plenary speakers to open the Collaborating Across Borders conference for interprofessional health educators.

Before I left my room for my talk, I left $2 on the pillow for the housekeeping staff.  That’s a habit I have adopted over the years and my husband teases me that I’m forever looking for tip money.  I figure that being a housekeeper in a hotel is a pretty thankless, low paying and sometimes disgusting job – so leaving two dollars on the pillow seems like a very small token of appreciation.

I then went to the ballroom, and climbed up on stage and looked out into the sea of close to 1,000 participants.  I couldn’t actually see their reactions to my talk, because there were so many people out there.  I could hear in my voice that I was nervous for the first few minutes and stumbled over my words until I settled down into a more even rhythm.  I tried to forgive myself for not being perfect.  The crowd was engaged and respectful, and I was appreciative of their attention and applause.  My talks are basically about compassion, and how I believe that actively listening to patient stories can lead to more compassionate health care. One of my mantras is that I’m talking about kindness, and kindness is free.

Afterwards, I stuck around for lunch and attended some sessions.  Then I needed to retreat into my room for some introvert time.  My room was nice and tidy and my bed was made.  On the covers was this note:

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I had given only $2 and I received this beautiful note in return.  To the lady who does the housekeeping:  I did have a bless day.  Thank you for being a part of that.  Such a small effort on my behalf for such a large reward.  I’ve tucked this little note away in my notebook to remind me, even if I am weary or rushed, to always be kinder than necessary.  As the saying goes, for everyone you meet is fighting some kind of battle.  God bless you too.

keep on spreading that love

spreadingloveAn essay I wrote for the Canadian Medical Association Journal called About Dr. Darwish now has public access.  Hurrah!  (I was cursing the obligatory paywall it was hiding behind for a year after publication in May 2014).  But here it is.  It is free for the reading.

I share this story widely in my work with health professionals.  It was written in honour of Dr. Azza Darwish, who was Aaron’s pediatrician after he was born.

This story says to every single person who works in health care: you have the power to put patients and families on a path of strength and hope.  

Azza Darwish did just that the years we were blessed to have her on this earth. Her memory lives on every time there is a kind and compassionate interaction in the health care system. Let’s all keep spreading her love.

being quiet and humble and good

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I read the essay A Moral Bucket List by David Brooks in the New York Times last week. I shouted YES after I finished reading it. I might have even pumped my fist in the air. This one is a keeper, and I officially will add it to my Gospel of Really Good Writing That Tells The Truth.

There are so many gold nuggets of phrases and ideas in this piece that you should just go read it yourself. Brooks talks about collecting virtues that you’d want mentioned in your eulogy, like being brave, honest and faithful. He says that suffering introduces you to yourself and reminds you that you are not the person you thought you were. And this: ‘…and at moments of rare joy…the ego rests.’

If you’ve never been humbled in your life, don’t bother reading this because it will make absolutely no sense to you at all.

Yesterday, a scrabbly-looking old man came up to me in Langley asking for directions. Now I’ve been to Langley like twice in my entire life, so I’m hardly a local. But I knew that he had just asked some other people to help him, and they had turned him away. So he and I stood and looked at the address on the envelope he was holding. I punched the numbers into the map app on my phone. I asked him if he was walking or driving. Walking, he said. We figured out the address was a six minute walk, and I pointed the way, citing landmarks. He was so relieved I helped him. It took all of four minutes of my time. Afterward this simple task, I felt as if I had contributed some material towards my eulogy.

But before my head gets too big, I also like to remind myself how I have fallen.

I try to be kind, but if people piss me off, I’m not kind at all. I do not feel kind towards my husband’s ex-wife or certain politicians, for instance. I also feel no kindness towards the psychologist who wants to administer an IQ test to my kid with Down syndrome. (In fact, part of my demonstration of unkindness is mentioning these people in this piece). See what I mean? If you wrong me, I will also write about you. That’s not a very nice thing to do.

I’ve also yelled at my kids, especially my older ones. I made some bad dating decisions when I was a single mom. I’m flawed in my relationship with food. I try to be brave, but am a bundle of anxiety before speaking engagements. I like nice hotels a bit too much. My ego gets in the way when I want to shout: DO YOU KNOW WHERE I HAVE BEEN PUBLISHED? (That’s terrible, I know. I’ve never actually said that out loud, but I’ve thought it a few times).  I check my Facebook, Instagram and Twitter feeds for notifications too often.

I think David Brooks would say this is all ok because I realize my limitations and I work to overcome them. I am so very passionate about love, kindness and compassion in health care that I do not even bother to contain this passion, and I have turned into one of those lucky people who does what she loves for a living. I hope this drives me towards the good, if I can keep my damn ego and that voice that administers negative self-talk out of the way. I feel extremely lucky most of the time, and sometimes I even feel blessed.

I’m going to keep aspiring to be a ‘stumbler.’ If we are lurching through life unbalanced, that means we have dropped all notion of even attempting to be perfect or normal. (Both of which do not exist by the way).  I’ve significantly pushed off my pedestal twice:  once when my first marriage split up, and another when my youngest kid was born with a disability.  And then I’ve been pushed off so many times since that I don’t even bother crawling back up there anymore.

I’ve also had glimpses into those beautiful moments of true joy, where I realized that life is not in black and white – it exists in a stunning rainbow of colour. These moments only come when we open our hearts to everybody, including ourselves.

You see, there is an invisible current of life, just below the surface.  If you are quiet and humble and good, you will soon discover that secret place – that’s where all the magic lives.

sacrificing empathy for efficiency

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(This gorgeous canvas was gifted to my gentle daughter, who is going into nursing school this fall).

Six years ago, near the beginning of my career in the world of patient and family centred care, I was at a Family Centred Care Conference hosted by a pediatric hospital.  I was in a session that was facilitated by the wonderful Peter Rosenbaum.  He broke us into small groups, and asked the question:  Family Centred care is….  Each group had to fill in the blank.

One nurse stood up and said, rather angrily, I don’t have time for family centred care.  I was sitting at a group of family representatives.  We all audibly gasped.  No time to introduce yourself?  No time to smile?  No time to make eye contact?  Family centred care is all those small gestures that mean a lot to patients and families.  It is these small demonstrations by health professionals that show us that you care.

However.

One element of family centred care that does takes time is listening.  Making space for people.  Listening with your whole self.  Minimizing distractions. Not rushing or appearing rushed.  And yes, sometimes you can effectively listen to what patients need in thirty seconds.  But many times listening means slowing down, pulling up a chair and sitting down for a while.

Alas, our health system does not compensate for this types of kindness or compassion.  Our Canadian system is either based on fee-for-service (see as many patients as possible) or it is driven by the need for efficiencies.  I’ve always been wary of philosophies in health care that are modelled after processes in car factories.  For human beings are not cars.  An interaction with another human being includes taking the time to get to know each other.  This is the only way to create a relationship that is built on mutual trust.

Dhruv Khullar wrote a poignant essay in the New York Times earlier this month called The Importance of Sitting with Patients.  In it, he laments a system that is so focused on the ‘altar of efficiency’ that it forgets the importance of sitting with patients.  Should hospitals really be run like businesses?  Does the race for efficiency sacrifice empathy?  I concur with Dr. Khullar and say yes, in its current form, it does.

But here’s what I think.  Visionary health leaders can add measures for compassion in performance reviews,  hire based on both heart and brains, share patient stories at committee meetings (or even better, invite patient reps to committee meetings), and celebrate acts of kindness in their hospitals.  If they can somehow figure out a way to compensate for listening, well then empathy can indeed function alongside efficiencies.

I read an unattributed quote on Twitter, and I think it is brilliant:  health care should be less about the care, and more about caring for people.  Less about services, more about serving people.  And caring and serving does take time.  Having worked in health settings for the past six years, I now feel for that nurse who stood up at that conference and said she didn’t have enough time to practice family centred care.  Because the health system has slowly but surely stamped out her passion for caring for people.

As Dr. Khullar says, there is tremendous value in having more time to spend with patients.  Let’s continue to build our own altar of empathy.  Six years later, I believe now, more than ever, that love always wins.  I know that it is the gentle people, like my own daughter Ella, who are going to change the world.