too much cancer

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Cancer is everywhere.

In the past month, just in my circle:
A friend’s partner was diagnosed with breast cancer.
A colleague’s young sister has stage 4 cancer.
A close friend’s wife is dying from metastatic cancer.
A beloved author and illustrator dies of metastatic breast cancer.

As someone diagnosed with cancer myself, I feel as if – oddly – nobody in our government has really rung the alarm bell about the cancer.  It is a shrug on the health ministry’s agenda, regulated to a special agency for special treatment.  But collateral from cancer litters the entire health system.  In emergency departments, family doctors’ offices, rehab clinics and mental health professionals’ couches.  Cancer is not just a cancer agency problem.  People with cancer are everywhere.

The thing is, cancer isn’t even that special.  It will eventually haunt one in two Canadians.  It isn’t only a disease that we will all get if we grow old.  Young people are being diagnosed with cancer.  There is never an ideal age to get cancer.

Cancer is something nobody wants to talk about, including the government.  You can empty a room by announcing a cancer diagnosis.  Having cancer is an efficient way to painfully weed out unsupportive friends and family.  Many people run for the hills when you have cancer.  The thing is, cancer touches all of us.  It is an awfully big elephant in the room.

The response to feeling uncomfortable about cancer is patient blaming.  This happens with oncology professionals, government bureaucrats and researchers alike.  ‘Friends’ wade in too, saying in a backhanded way:  “Well maybe now you will adopt a healthier lifestyle.” That’s their measuring stick.  Like my lifestyle wasn’t healthy and that’s why I got cancer.  So what if it wasn’t?  What if it was?

This tired old patient responsibility mantra is trotted out, without recognizing that sometimes shitty things happen to people.  It is easier to blame us than look at the other reasons for cancer.

Our environments.  Toxins.  The food we all eat.  The air we all breathe.

Alas, we don’t know how cancer actually works because our government’s epidemiology departments are mum on the reasons we get cancer.  There’s a fancy shiny cancer research building across the street from the downtrodden patient cancer treatment building in my city.  But nobody from there once asked me where I grew up or even about my ‘lifestyle’ when I showed up after my diagnosis. I didn’t even have an extensive medical history taken by anybody.  I was merely put on a conveyer belt of treatment.  I was sent home a few months later and told:  Put this behind you.  Get back to normal.

But I can’t put it behind me.  I can’t get back to normal.  People all around me are dying of cancer.  Early stage cancer can come back with a vengeance with late stage cancer – metastatic, terminal, Stage IV.   Some people skip early stage all together and are diagnosed with Stage IV.  Collectively, we turn our heads away from these people.  I live in daily fear that my breast cancer has come back, migrated to my bones or my brain.  Every pain in my hips or ache in my head reminds me about the thing I’m supposed to forget.

But if I say:  I grew up downwind from the oil and gas refineries and I got cancer at age 48, I’m scoffed at as being a quack.  Or I had a close family member who worked at the refineries and has had two types of cancer, there are more shrugs and eye-rolling.  Don’t you know that cancer is all your fault?

Or what of the people of Fort Chipewyan, downstream from the oilsands, who got cancer, lots of it, rare kinds of cancer?  And while this report has quickly become discounted and buried by the news outlets, even having a slight increase in cancer rates means that people are suffering and dying.  And is even having a normal cancer rate okay?  How has this been accepted in our world?  Is cancer just inevitable?

Eventually cancer catches up to everyone.  We get cancer.  A loved one is diagnosed cancer.  My friends’ loved ones die of cancer.  It should not be dismissed.  Yes, it is sometimes treatable. But it is also causing a great amount of suffering in the meantime.  And cancer can kill us, my friends.  Even pink, fluffy breast cancer.

If cancer was like SARS or H1N1, there would be a public health emergency.  But as long as we blame patients for their own cancer, and governments skirt responsibility for looking into the environmental reasons for cancer, cancer will just be a shrug.  ‘Oh well, you should have eaten better and exercised more,’ they say.  And simply blaming us is a dying shame.

 

no news is not good news

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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.

Disorientation, explained

Shot with NOMO Toy F.

It has been two years since I was diagnosed with breast cancer and 18 months since my active treatment ended. There is a rare soul out there who dares to ask me about my health now. Before I had cancer, I didn’t understand how much people are really truly terrified of cancer. Want to throw an awkward wrench into any conversation? Utter the word cancer. Cancer, cancer, cancer! People screech to a full stop and there’s a desperate attempt to fall all over themselves to change the subject to anything else.  I’ve learned quickly not to bring it up at all.

After cancer treatment there is no happily every after. No back to normal. No better than ever. This Why the Trauma of Cancer Doesn’t End After Treatment is a refreshingly clear article by Layla Haidrani about life after active cancer treatment ends. It is worth a read for a better understanding of the concept of cancer recovery. This blog post by Molly called I Have Died is stunning and sad in her articulation of what it feels like to be abandoned by friends and family when you have cancer. This collateral damage is real and painful – and it followed Molly right up to her last blog post that she wrote before she died.

My friends who have children with disabilities or my old colleagues who I worked with in the children’s hospital are braver than most. Last week I met a friend for lunch and she opened up by asking: how are you doing mentally and physically? I wanted to give her a Good Friend Medal. She was not afraid to go there, to the Place of Voldemort That Cannot Be Spoken Of.

This is how I explained to her how I was doing. It is as if I got knocked down and I’ve finally gotten back up.  But now I’m awfully confused about everything.

This has taken two full years of hard work to get up, which has included the love of a good man and my three children, loads and loads of private mental health therapy, one cancer retreat, a general avoidance of oncologists and the health system, meditation and daily walks. (I explain my sources of comfort here). I’m still shaky and I fall back down easily. I feel as if my resiliency is very low and almost non-existent. I don’t feel better than ever. I feel fragile and vulnerable most of the time. I’m (maybe foolishly?) searching for a publisher for my book and my fragility makes rejection letters exceedingly painful. I think: I can’t go on. I must go on.  I’m trying to return to the land of the living but I’m finding the land of the living quite bewildering.

I want to talk about this feeling of confusion. I’ve popped back up and I’m looking around at the world, thinking: What The Hell Is Going On? I’ve shifted but the world has soldiered on unchanged. (Well, politically and climate-wise, it has actually gotten worse). I’m at the What The Hell Is Going On stage of healing from cancer.

A kind colleague recommended a book called Disorientation and Moral Life by Ami Harbin. It is a book of feminist philosophy that explains the reason for my confusion. The author talks about the serious shifts in identity that the disorientations of illness can prompt and that being diagnosed with a serious illness can be deeply disorienting.

Finally, someone who has put words around what it feels like to have been diagnosed with cancer. It is as if I was a boxer knocked out cold in a fight and I have finally come to and struggled up to my feet again. I look around the boxing ring at my opponent and the audience and nothing seems as it was before. This is called disorientation. My regular way of being in the world has irrevocably changed.

Ami Harbin does point out positives to disorientation, including an increased sensitivity to others facing their own vulnerabilities. I can feel that. I have many women with a looming breast cancer diagnosis contact me while they are awaiting biopsy results. I am happy to connect with them, even if it is only to say: I know this is hard. (Write to me and I promise to write back). My new theory is that we can change the world with one kindness at a time.  Cancer didn’t give me any gifts but okay maybe this is a gift that comes out of my disorientation.

Cancer causes odd shifts. In some ways, serious illness feels like a personal failure. All the rules I subscribed to (I am in control of my own life, I am a good person, I am a healthy person) were taken from me when I first found a lump in my left breast. Being disorientated means I need to create new rules to make sense of the world.

If you ask me how I’m doing and you sincerely want to know, I will lean on the wisdom from Disorientation and Moral Life and use this quote from philosopher Susan Brison to say:

None of us is supposed to be alive. We are all here by chance and only for a little while. The wonder is that we’ve managed, once again, to winter through and that our hearts, in spite of everything, survive.

Maybe this is called grace? I just don’t know. I have a feeling that my lesson here, at least for today, is to be okay with the not knowing.  And so ends this untidy, disoriented essay.  /Fin

 

 

 

the unwinding of the miracle

unwinding

Whenever I’ve been fraught with anxiety, particularly since the stupid cancer arrived, my youngest son comes up to me and says firmly:  Mom. Sushi, bath and reading.

My boy knows what calms me and reading is one of those things.  I made a list of books that soothed me around my cancer treatment time and I’m going to add The Unwinding of the Miracle by Julie Yip-Williams to this group of illustrious books.

The Unwinding of the Miracle book began as a blog, which of course sparks hope to those of us who write about our own cancers.  It saddens me, though, when I realize how many books were published posthumously – like Julie’s book, and Nina Rigg’s The Bright Hour and Paul Kalanithi’s When Breath Becomes Air.  I hope the authors got to see their book in some sort of form – a draft of a cover, or a printed manuscript – before they left this world.

I am still drawn to books about cancer two years after my diagnosis.  This might seem weird to non-cancer people.  As one relative said to me:  why can’t you just put it behind you?  I can’t put it behind me.  It is part of me now.  We all integrate cancer into our identities in some way, even those people who seem to be ‘over it.’ (They aren’t over it.  They just don’t talk to you about it). Reading stories about cancer, especially metastatic cancer, helps me shine a light on the Bogeyman.

The Unwinding of a Miracle is both a memoir and a commentary on dying.  I read the first few chapters impatiently, hoping the author would get to deeper reflections beyond her chronological story.  Don’t get me wrong, her story is fascinating – Julie was born blind in Vietnam, arrived in Hong Kong on a boat as a refugee when she was three years old and eventually settled in California.  Hers is the American dream story – she overcame the struggles of her childhood, went to Harvard Law School and practiced as a lawyer in New York City.  She got married, had two children and lived an affluent life in Brooklyn.  But then at age 37, she got colon cancer.

When I read a book, as in real life, I like to cut through the chit chat to get to what’s important.  I’m glad I didn’t give up on The Unwinding of the Miracle, because my perseverance paid off.   The first chapters are mostly a re-telling of Julie’s life up until cancer.  The rest of the book is a deep dive into what I call what really matters in life.

I’m always searching for commentary on the patient experience in books about cancer, and Julie does share some of that.  Her diagnosis occurs in a sketchy hospital far from home, where she’s travelled for a family wedding.  She calls the physicians there ‘dubious’ and arranges to get transferred to a ‘more reputable’ hospital.  This was a very American reminder of how having good insurance and money gets you better care (in Canada, there’s no transferring around hospitals, no matter how wealthy you are).

She speaks candidly about her forays into alternative medicine, “…I could roll the dice with traditional Chinese medicine, which after all has been around for thousands of years and is a part of my noble Chinese heritage.”  Those who mock patients for searching for complementary treatments will gain a greater understanding of why patients stray into alternatives.  (It is because we are afraid, we feel ignored by our doctors, we have lost trust in the health care system, we go through bouts of feeling desperate to do anything to live just a little bit longer).

I admire of Julie’s telling of what she terms ‘her darkness’ that hits her two years after diagnosis, as she’s deep into Stage IV cancer. “There is a natural, intuitive fear of darkness, people who are gripped by it are ashamed to speak of it,” she says.  But speak of it she does.  The book turns here from a chronological tale to one that is thoughtful and reflective.  I imagine this mirrored Julie’s own experience having cancer, which can flip flop between denial and to trying to stay on this side of cheery to dark depression and eventual sad acceptance.

Julie shares many jewels in the caves of suffering (as David Gilbert has termed) in her book.  These jewels are not necessarily shiny or sparkly but they are hard-fought jewels, hard and dusty.

I find and continue to find delusion, fake optimism, and forced cheer in the face of a devastating diagnosis where death and all the fears that come with it must be avoided at all costs.

If you aren’t afraid to consider death, if you believe that people facing death can offer up jewels in the midst of their suffering, then The Unwinding of the Miracle is for you.  It isn’t a light book but it is an important book.  Julie Yip-Williams’ legacy is her story, her children and how she lived an unflinching and authentic life, right up until the end.

 

to what end?

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Me in my glory days.  Photo credit: David Hungate

I have been slogging along as a family advocate and then as a patient in the health system for the past 16 years.  I’ve had paid positions at two different children’s hospitals where I was deeply committed to improving the family experience.  I even moved my family to another province for one of those jobs. I’ve logged countless hours as an unpaid volunteer on committees.  I’ve spoken at many national and international health conferences as an inspirational speaker.

Before that, in the 1990’s, I worked on projects for a provincial health department in funding, costing and information management.  In the 1980’s, I was a nursing student for two years before transferring into English, worked as a nursing attendant and went on to get a graduate certificate in health care administration.

I tell you all this not to prove my credibility, but to say that I’ve been around the block a few times.

All of me is tired.  Getting cancer two years ago tipped me over the edge.  Improving health care for patients and families has been my life’s work.  My ongoing experience in oncology has shown me that things have not improved for patients one little bit.  To what end have I dedicated myself to this work?  What difference have I made?

I’m not trolling for compliments.  I am truly wondering where the evidence is that my hundreds and hundreds hours of paid and unpaid patient engagement work has made any positive change.  There is no evidence in my recent clinical experience.  So why continue?

I started my advocacy work in pediatric health care after my son was born with Down syndrome.  I co-founded a community based peer support program, lobbied for a Down syndrome medical clinic and helped build a family council at a children’s hospital.  If you had asked me, I would have said that I was trying to make meaning of my son’s diagnosis.

Reflecting on this seemingly noble rationale, I recognize that this is actually rather insulting to my son.  What does this say about how I felt about the meaning of my son’s life?  Now I know that he has meaning by simply being human.  I don’t need to try to change the world to validate his worth and existence.

I would have also said that I did advocacy work to ‘make a difference.’  But other than a shot to my ego and some brief warm fuzzies for the audience, what difference did making myself vulnerable and standing behind a podium sharing my story (and even worse, sharing my son’s story) even make?  Show me the evidence.

This past week I had a trifecta of events.  I heard Andre Picard speak at City Conversations at SFU but his wonderful talk rattled me.  If I had been less worn down and brave enough, I would have stood up and asked:  What can us patients do to improve Canada’s health care system?  His clear and factual accounts of the myths of Medicare hit very close to home.

“As Canadians, we are all too accepting of mediocrity,” he said.  “Once in the health care system, you ask yourself – what the hell is wrong with the system?”  These true statements chilled me to the bone.

Then I had an unpleasant encounter with a new oncologist.  And then a terrible appointment letter showed up in the mail.  My never-ending shitty patient experience just goes on and on and on.

What the hell is wrong with the system?

All my talk about kindness, compassion and the patient voice has been for naught.  (Read Isabel Jordan’s reflections and Jennifer Johannesen’s critique of the whole patient engagement movement for food for thought).

The past two years I’ve slowly been withdrawing from the patient engagement world.  I no longer accept speaking engagements.  I don’t volunteer on committees or with projects.  I think: what’s the point?

I still rabble rouse on Twitter and Instagram and I write essays on this blog.  I’ve written a memoir and manifesto about health care called The Bird’s Eye View and I’m in the midst of editing it and shopping around for a publisher.  But writing is something in my realm, in my control.   My own self tries to treat myself with respect and kindness.  I no longer rely on health organizations to do that for me, because 93% of the time, I’m deeply disappointed.

I don’t want to deter you if you believe that patient engagement will change the health care world.  This has not been my experience but maybe it is yours.  But I must plead with you: Please don’t allow yourself to be taken advantage of.  Don’t let them ‘use’ your story.  Be particular when accepting opportunities.  Think, as I rarely did:  Why am I doing this?  What is the organization’s intention?  What is my own intention?

Zoom back 12 years and I was at a health conference with a team of family members and clinicians.  Something rotten happened there – we were there as a team, but a team decision was made and I wasn’t even consulted.  I mean, the details don’t matter – I have allowed this to happen to me a thousand times since then.

I left the conference room and went into the elevator to compose myself up in my room.  I was naive and hurt.  The pain of this made me weep.  I had thought I was a full partner and I clearly was there only as a token family representative.

The elevator doors opened and another woman walked in.   It was a mom who had volunteered with another Canadian children’s hospital for many years. I hastily wiped away my tears but I was still clearly upset.

“What’s wrong?” she said, gently hugging me.  “Come to my room and we will have a chat.”

I sat on her bed and cried, feeling betrayed and used by the clinicians.  She comforted me but then said firmly:

Don’t give ever them all of your heart.  Because if you do, they will chew you up and spit you out.  

I’ve given this same advice to patient and family advocates over the years, but have not heeded it myself.  I’ve allowed myself to be treated shittily by the system (and never ever forget that the system is made up of real live people) over the past dozen years.  Why have I done this?  I wanted to belong.  Attention massaged my fragile ego.  I had a need to be heard.  And yes, I wanted to make a difference.

No more.  I quit you health care.  Except for my minimized touches in a clinical setting – I have had cancer after all, which never really goes away – I’m done.

I’m breaking up with you patient engagement.  You’ve been a rotten partner. You don’t deserve me anyhow. It is finally time for me to take my own heart back.

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.