It is what it is

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I breastfed my three kids for six years (not each, sillies…but all together) and naively thought that made me immune to breast cancer. This is an arrogant way to think: to be so pious to assume others with cancer brought it on themselves and you are somehow above that because you ran marathons or breastfed your babies or didn’t eat sugar.

Cancer doesn’t work that way. That’s the problem with risk factors – they are only factors, not absolutes. And even if this is all my fault, does that mean I deserve any less treatment or compassion? Think about that for a moment. If you believe that, I might be able to sell you a membership to the Republican party.

So when I felt a lump last October, I didn’t become alarmed until the lump resulted in a mammogram and then an ultrasound and then a long biopsy at the end of January. And then, sure enough, a diagnosis of breast cancer followed a week later.

(Note for my friends going through the same process: 80% of biopsies come back benign. If 1 in 9 Canadian women get breast cancer, consider me your ‘1’ out of 9 women you know, including yourself. I’m taking that ‘1’ for the team).

Believe me, I’ve heaped enough blame on myself: I’m soft as opposed to firm and I do enjoy a regular glass of wine. Both are risk factors that I calculated in my darkest hours probably wiped out any advantage from all that childbearing and subsequent breastfeeding.

Then I moved to blaming the environment – hormones in my food (but wait, this meant I didn’t make healthy food choices – damn) or growing up in oil-loving Alberta, with refinery dust settling on me as I biked to elementary school. Since my dad has had two different types of cancer and he worked at the oil refineries, my muddled brain attached itself to this explanation.

(Don’t fear, Alberta friends, this is made up in my head – see this Cancer Report from the Government of Canada for actual facts).

Of course, this is all speculation, also known as the blame part of grief. I went through the same process when my son was born with Down syndrome (My eggs are old and wrinkly! It was the refineries!) to no avail.

As far as a philosophy, my dad, in remission from both leukemia and prostate cancer, says simply, It is what it is. This seems useful.

A friend, who has had a lot of shit happen in her life, says equally profoundly, Shit happens.

Even Science magazine chimes in, saying, “66 per cent of mutations that contribute to cancer are due to unavoidable DNA-replication mistakes.”

Now I have a son with three copies of his 21st chromosome and I’d never consider him a mistake. I have always felt he has a chromosomal difference, not a disorder, and that he is a part of the natural human fabric just like everybody else. Me with my cell-mutation – well, true, it will kill me if I don’t treat it, so that’s a problem. But these things happen.

But in order to inch towards acceptance, I’m going to conclude that shit happens and it is what it is so that I can shut off my monkey brain and sleep at night. In this pre-treatment time, I am attempting to be as kind to myself as possible in order to find a little peace in my heart. I have a sense that I’m going to need to draw upon this peace for some dark days ahead.

Tommy the Cancer Cat

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the cat in question

Towards the end of her life, my beloved grandma lived in an assisted living facility in small town Alberta. She spent a lot of time in her room, reading and (then when her sight failed her) watching television. My aunt lived in the same town and was her fierce advocate. She came up with a brilliant idea to stave off the loneliness that befalls so many elderly people: my aunt negotiated with the nursing home to get my grandma a kitten.

Now, my grandma lived in the country for many years and was practical about the value of a cat. She felt cats belonged outside chasing mice. But things changed after my grandpa died and she moved into the home. She became less mobile and spent many hours alone in her recliner chair. A little orange cat changed all that.

My aunt plucked a kitten from a litter on a farm and brought him to live with my grandma. Suddenly my grandma was never alone again. She named the orange tabby Tommy, after her brother who had died a few years back.

Since he was wee, Tommy the cat’s only job was to sit in my grandma’s lap. He was very good at sitting in laps, exceptional even. Occasionally he’d go for an adventure hiding in a kitchen cupboard, or inviting the nurses to scratch him on the belly, but mostly he just sat in her lap, purring away. My grandma grew older and frailer and acquired bladder cancer in her final years. Tommy remained on her lap through it all, taking his job as therapy cat very seriously, lap-sitting his way through the days.

My grandma denied that Tommy slept with her in bed, but I like to think that he was cuddled up next to her three years ago, purring away on the night she died.

We are cat people and when my grandma got very ill, I told my aunt we would adopt Tommy when she was gone. And so that we did.

Tommy arrived at our noisy house a bit freaked out, but he adjusted quickly. From the beginning, Tommy always seemed fond of me. I think he thought I was my grandma reincarnated. He was keen to jump up on the couch and sit with me on the rare occasion I would actually sit down on the couch. He was a pleasant cat, not prone to causing troubles, until late last August.

It was then that Tommy became overly obsessed with me. He started meowing and yowling when I wasn’t in the room in a way he never did before. He’d wait all day, watching me closely and following me around until I finally sat down on the couch. Then he’d jump up and snuggle fiercely up onto my left side. He’d stretch his paw out and knead me like I was his mother and he was a little kitten again.

Right around that time, he began peeing on bathmats, laundry left on the floor, and most disturbing of all – beds. We spent hundreds of dollars at the veterinarian’s trying to figure out the reason why. Male cats are prone to kidney problems, so we bought expensive urinary tract food. We ran diagnostic tests. We put him on anti-anxiety medication but it didn’t help much and caused his liver levels to go wonky. Finally we had to conclude that there was nothing physically wrong with Tommy. He’d just gone off his rocker for no apparent reason.

Our vet bills kept creeping up and we had to bar him from all rooms with beds and be fastidious about picking up bathmats and laundry. We had to take a good hard look at him. I decided I couldn’t bear to ‘rehome’ him, because when I saw him, I could only see my grandma. Irrationally or not, I knew she was watching and I didn’t want to betray her. I had promised to look after him, but his new strong obsession with me was really weird. He started meowing for me outside the bedroom door every morning when the sun came up (note: he can’t sleep with us because he will PEE ON THE BED), which was particularly annoying.

Clearly Tommy was coming apart at the seams. Then about six weeks after his newfound addiction to me began, I found a lump in my left breast.

I know I’m searching for meaning as I heal from surgery and wait for my first oncology appointment. But I believe Tommy sensed my tumour back in August, before I even detected something was wrong. He always sits on my left side and reaches up with his paw to my left breast (I thought he was merely being a pervert). But this is as he sat on my grandma’s lap all those years, as she had cancer as I do now. If a German Shepard can sniff out cancer, maybe Tommy the cat can too.

I know I’ll be sitting on the couch, an orange cat by my side, more and more as this year unfolds.  I’ll be recovering from whatever cancer treatments are looming in my near future. If nothing else, Tommy knows his job in life is to sit with people who are lonely and in pain. This seems like a pretty good calling to me.

birds art life

wood duck

This is a Wood Duck.

A confession: I come from a family of birders. My parents both work for a bird store, my dad hosts the bird walk on Vancouver Island and our shared last name is Robins. This bird love is not a coincidence; it is a genetic phenomenon not to be tampered with.

My husband, son and I live in an eight story condo and have a hummingbird feeder on our terrace. We are also the only unit that gets the papers delivered every weekend. In those papers, I read all book reviews. Naturally, I was drawn to a review of a book called Bird Art Life by Kyo Maclear. I fed my online book shopping addiction and this memoir appeared in my mail slot a few days later.

This is not a review but a testimonial. I have accumulated many cancer books over the past long weeks, but they are piling up on my nightstand, none having caught my fancy. Many talk about fighting, battling and conquering and I’m not feeling that all that aggressive right now. I’m just quietly waiting.

This tale about birds is not about cancer, but it is the medicine I need right now. Maclear’s themes are: Waiting. Lulls. Not Working. Time. Noticing. Motherhood. Learning. And of course, Birds.

The other day I went to look for birds, which are plentiful now at Burnaby Lake, about ten minutes away from home. I drove past the film studios, deep into a typically-Burnaby industrial area before turning onto Piper Avenue towards the lake.

The usual human suspects were there: a young dad rounding up kids, shouting, ‘Don’t get too close to the lake! You’ll fall in!,’ serious bird watchers like my parents (the Tilley hats give them away), the retirees lugging hefty cameras and some young adults with faces like my son’s – maybe from a day program or group home. All people like me who were not at work in the middle of a Monday.

There were a lot of ducks: colourful Mallards & Wood Ducks, the mean Canada Geese and the funny American Coots with their white-tipped beaks. But my favourite bird of all was the Red-Winged Blackbird that hides in the trees, singing the soundtrack of the lake. As they sing, their tails fan out in song. You can only see the males’ red wings when they take flight, but they flitted around so fast that I couldn’t get a decent picture. These are birds that meant to be listened to, not photographed.

The premise of Kyo Maclear’s book is bird watching around Toronto with an unnamed musician. Her prose is so beautiful that I dare not paraphrase her words. Here are some direct quotes:

I realized – it is sometimes painful to wait. But it is also painful to always be in a hurry on someone else’s behalf, to cram into as much into a day as a day allows.

Waiting slows down time. Since my diagnosis I have been waiting. My mind is scrambled like cheesy eggs. I waited for surgery. Now I’m waiting to heal. I waited for my pathology report from my surgeon. Now I’m now waiting for my appointment with my oncologist. I know the cancer hasn’t spread but I am uncertain of my treatment plan ahead. I’m waiting for that too.

My days are unscheduled and some might say luxurious. (But would you rather have cancer and unscheduled days, or no cancer and scheduled days?  That’s what I thought). Since I’ve been healing, I’ve increased my activities from doing one thing a day to three or four.  I met a friend for lunch in Gastown, where I picked at my sandwich, dunking the top piece of bread into my shrimp bisque. I was forgetful and jumpy.

“I’m a space cadet,” I admitted. She was gracious, inviting me to be as unhinged as I needed to be.  I disappeared into an afternoon matinee to view a disintegrating rom-com and emerged into the grey of Vancouver two hours later, successfully passing the afternoon. I picked up pho for our family dinner on the way home and a taro coconut bubble tea for myself.

Yesterday I drove across town to specifically buy my favourite brand of umbrella, having left my old umbrella in an unknown umbrella stand somewhere in the city, as thousands of coast dwellers have done before me. I popped by the children’s hospital where I used to work to meet a friend for tea. She gifted me a sparkly homemade bag with a thoughtful trio of presents: a pink boa, a pretty journal and a coffee card. (I will write one day about the many beautiful gifts and cards I’ve received. A handmade quilt. Homemade meals. Gift baskets.  Books.  Flowers. Handwritten notes). I met my husband for lunch at the Whole Foods food court where we talked through his challenging day amongst the clamour of the lunch crowd. I bought overpriced burgers for dinner and drove thirty minutes home for a ninety minute nap.

This is all terribly ordinary, but then life is mostly made up of ordinary moments. I’m trying to forget that we are supposed to be in Melbourne right now. I’m trying not to think cancer, cancer, cancer all the time.

As Kyo Maclear says, I am in the lull. What if we could imagine the lull as neither fatal nor glorious?  What if a lull is just a lull? she asks.

Birds Art Life is not only about birds. For sure, there are lovely bird illustrations and vivid descriptions of bird behaviours. But this is also a book about paying attention while you are waiting.

Kyo Maclear manages to relay a passage just for me:  Eve Sedgwick, in therapy for depression after cancer treatment, has a moment of realization. ‘I figured out what it means when I complain to you about things,’ she tells her therapist. ‘Or to anybody. When I tell you how bad it is, how hard I’ve worked at something, how much I’ve been through, there’s only one phrase I want to hear. Which is: that’s enough. You can stop now.’

I pine for the time I can stop now. I’m already tired of listening to myself talk and think about cancer. Some days I feel like crawling out of my skin, wishing this was all over. Alas, I am only at the beginning and this time in between is my lull to bear.

There’s one final quote from this tiny, perfect book: Strong one moment, vulnerable the next, we falter because we are alive, and with any luck we recover. My knobby scar marring my cleavage reminds me that I’m at my most vulnerable right now (so far). My crooked little line also reminds me – as my eldest son used to text me in the middle of the night when I inquired where the hell he was – that I’m not dead yet.  With any luck I recover.

hair today

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I am lacking in formal religion, except for a pleasant but intellectual dabble in Unitarianism when I was a single mom many years ago. Since THE CANCER, I have turned to little superstitions to give me comfort. However, I do sincerely appreciate all prayers directed my way.

Although 80% of breast biopsies are benign, a cold wash of fear swept over me in December when an ultrasound tech casually informed me I’d need a biopsy. For some reason, this type of news is usually disclosed when you are sitting with a bunch of strangers in a sweaty waiting room stocked with old Chatelaine magazines.

I knew right then I had cancer, but didn’t want to upset my optimistically sunny husband who believes in science, so I kept the inkling about the malignancy to myself. He was holding out that I was in the 80%. We have a kid with Down syndrome who is 1 in 700, so as a rule, I no longer believe in statistics.  If it is your time, it is your time.

I bought some soft denim gypsy pants thinking, ‘these would make comfortable hospital pants.’ When my husband gave me a beautiful blanket for Christmas, I mused, ‘this would be a cosy blanket when I’m sick.’ I crammed a bunch of interviews for a story I was writing into the week before my biopsy, knowing I full well that I wouldn’t be in good shape to work with the bad news that would come afterwards. I started nesting, like when I was pregnant and stocking up on groceries.  I had been carrying around the lump in my breast for many weeks now and I knew it wasn’t fooling around.

Just before my biopsy, I am sitting in my hair stylist’s chair. ‘Add some pink, just for fun!’ I say, but it isn’t just for fun at all. The pink is my rabbit’s foot for my upcoming procedure. During the biopsy, I know the pink – the universal colour of breast cancer awareness – is there and it makes me feel better in a small way, like a little shield against the carcinoma.

I knew this is silly, so I tell no one. Afterwards, I admit my pink hair’s failure. The mass is malignant, thanks for nothing pink hair, so I adjust my hair colour strategy accordingly.

A week after my lumpectomy surgery I’m sore but I drag myself back into my hair salon. My stylist is a much cooler version of me, with vivid tattoos on her arms (a contrast to my meek little bird tattoos on my shoulder), unapologetic short hair and a cheeky attitude to match. She knows exactly when I want quiet and when I want to talk and when I’m not resting we chat about books, politics and being a mom. She also gives me extra long scalp massages when she’s washing my hair.  I consider her my secret friend.

I confess my pink hair’s failed attempt to ward off the cancer. ‘I want blue and purple this time,’ I say, ‘but just underneath.’  I’m too chicken to go all out. ‘Okay!’ she says. If she thinks I’m slowly going mad, she’s probably right, but she doesn’t let on.

Afterwards, I can’t see the blue and purple. I consult a dear friend, who has a rainbow of colours streaking through her hair. ‘Go bold!’ she advises me, and we create our own hair dying pact, recognizing that we are two moms tinkering with hair colour because it is one thing we can control in our chaotic messy lives.

So I’m back in the chair again – truthfully, those two hours in peace with someone who doesn’t judge me is more like therapy than a hair appointment. ‘Hair is a sign of a woman’s power,’ my stylist informs me. Now my hair is all blue and purple, sort of like the bruises on my chest. My left breast looks like it got into a terrible knife fight in a dark alley and lost badly.

I will find out soon if I need chemotherapy. Since my tumour is bigger than expected and because of my age, I might need both radiation and chemo. (Conversation with my surgeon: You might need chemo because of your age. Me: Am I too young or too old? Her: Too young! I’m oddly flattered – at age 49 I’m considered too young for the first time in a long time). But I don’t want chemo. Please pray for no chemo.

I don’t know why this bold hair comforts me, but it does. Maybe I’m practicing having people stare at me, as I understand this happens a lot when you’ve lost your hair.

Yesterday, a hip store clerk exclaimed, ‘Hey I love your hair!’ ‘Thanks!’ I replied unapologetically and openly pleased. When I took my purchase and turned away, a small smile – the first in a long time – appeared on my sad face.  I figure if I’m going to lose my hair anyhow, what the hell, I might as well go out with an uncharacteristic bang instead of my regular whimper.

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breathe darling

not your whole storyFrom my perch in my bed, I see the crows leaving Burnaby for their morning commute to Vancouver, their black silhouettes against the white-tipped trees. I’m flat on my back on bed rest, trying to reconcile a mean post-op complication from my lymph node removal. This reminds me of another breast experience – when I was breastfeeding my babies, cosy and set up with a comfort station of newspapers, books and my phone within arm’s reach. But it has been 13 years since I last nursed a baby and now I’m just home here alone.

This has been an exercise in waiting. Waiting for diagnostic tests waiting for results, waiting for diagnosis, waiting for referrals, waiting for appointments, waiting for surgery, waiting in waiting rooms, waiting to heal, waiting for surgery results. Those results come Wednesday and then there will be more waiting: For more surgery? For chemo? For radiation? I don’t know. Along with the waiting, there’s uncertainty too. I’ve cancelled travel and all my speaking engagements and it feels like I have nothing to look forward to, except for being on the other side of this. (Although I did read this lovely post from Mayo Clinic this morning, called Taking Time for Legos. I promise to take time for legos too).

I’ve poked my head out to scour for stories. I received generously long phone calls from two women friends who had been through breast cancer treatment many years ago, and one dear old friend who finished another kind of cancer treatment in December. I carefully listen to all these precious tales.

I met with my husband’s colleague for coffee last week. She just finished treatment last spring. She gives me a beautiful necklace – a little healing hand on a string. “I wore it when I was going through the shit,” she says, “I hope it gives you the extra boost it gave me.” I am so touched by this gesture from a kind stranger that happy tears (for a change) spill from my eyes. We are now connected.

From these women, I get no platitudes of ‘you will be fine’. This is because you are not guaranteed a pain-free life. Sometimes life is very much not fine. I know that to be true especially if I’m put on the chemo track. I hope hard that I just need radiation, but there are so many extra factors in play that I just don’t know. I will have to wait for this answer too.

There were little nuggets of wisdom in these conversations. I look at the notes I scribbled down:

Think – this is shitty, but then think of a positive.
Feeling the way you are feeling is okay.
Take all the help you can get.
You are in charge of your own shit.
This is a yet a blip in your life.
Hang in there.

A common theme was: I just rolled up my sleeves and did what I had to do. And I know that I will do that too.

Ps: Ronna Benjamin has written a great essay called 8 Things Every Breast Cancer Patient Should Know. It applies not just to breast cancer, but to everybody going through ‘stuff’ too…

Neck Deep in Cliche

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Me at the Bathing Boxes at Brighton Beach, 2011.

My cancer’s damn timing was just ever-so-slightly off for our travel plans. Last fall, after several years of dreaming and saving, we booked 16 days in Australia over spring break. This was my husband’s Bucket List trip. My son and husband had never been and they started vibrating with excitement, all talk about koala bears and white sand beaches. The daily countdown was on to our departure on March 8.

After I felt my lump in October, I was more hesitant with my enthusiasm. ‘Stop looking for the negative,’ I chastised myself, ‘let yourself be happy.’

So I dutifully watched web-cams of Bondi Beach, followed Whitsunday feeds on Instagram and booked accommodations. In another life, I would have made an excellent travel agent. I secretly made sure all our hotels had hearty cancellation policies. But alas, the lump followed me around everywhere, my constant little reminder.

In January, I briefly considered buying a new bathing suit. I had a biopsy booked at the end of the month and fretted about the location of my scars. ‘I’ll just wait until after the biopsy,’ I decided.

Sure enough, during the procedure, the radiologist asked me, ‘do you wear clothes showing cleavage?’ while I was splayed out on the treatment table. ‘Um, I guess so,’ I said, not wanting to seem skanky in a room full of clinicians. ‘I mean, I wear bathing suits.’ She opted to stick the needle on the outside of my breast, not the inside, thus saving my delicate cleavage.

Afterwards, I still couldn’t bring myself to buy that swimsuit. I was bruised and sore and couldn’t fathom standing under the bright unforgiving lights in the change room. Six days later I had confirmed breast cancer. Two days after that, we were sitting in the breast surgeon’s office. She’s talking about my upcoming surgery.

In my head I quickly calculate that I’ll be recovering from surgery after spring break but not yet in treatment. We can still go on our trip! I share this with her.

She laughs, probably her first laugh of the day. ‘No,’ she says firmly. ‘You can’t fly. You won’t get travel insurance. You can’t be far from a hospital.’

In that small clinic room in Vancouver, I watched both that swimsuit and our trip float right out the window. My comfortable bubble of denial was slowly being popped.

Now I realize that anybody who complains about travel plans is a first world jerk. Those who can afford to spend thousands of dollars on plane tickets and beach side hotels should really just keep their venting about crying babies on planes and flight delays to themselves. So this is all I’m going to say about our trip.

But suddenly you are 48 and they tell you that you have breast cancer and your Bucket has suddenly shrunk much smaller, and is now approximately the size of the tumour in your left breast.

I will take this chance to point out the irony of cancelling a Bucket List trip because you find out that you have cancer. I’m neck-deep (breast-deep?) in cliché here, but you must immediately seize the Bucket List opportunities. Don’t wait. This is the perfect time. Book it now. Do it for me.

number 51

patient

Me, immediately before I lost my sense of humour.

In my large mom purse, I carry around my high expectations for health care experiences. Being the mama bear of a kid of a disability has taught me a lot over the past 13 years. Now I’ve become a patient myself. Clinically, I know next to nothing about breast cancer, but I do know a boatload about compassion, respect, kindness and dignity.

I know the little things mean a lot. I know it takes only a minute to ask ‘what matters to you?’ I know that patients should have information shared with them in a way that they understand. I know the value of a kind touch and a gentle gesture. I know that hospital processes strip away dignity from already vulnerable patients. I know that what is a big deal for patients is often not a big deal to staff. I know that health care inflicts trauma on patients and that staff and physicians should be working hard to minimize that trauma with every single encounter. Most of all, I know that health care professions are intended to be healing professions, and I’m always disappointed when I bear witness to the contrary.

I had the notion that cancer patients were treated well. I think my tumour has been treated very well – and for that I am extremely grateful. I am also thankful to live in Canada, where inpatient hospital costs are publicly funded, and except for the ‘me not-working part’, our family won’t slowly bleed into bankruptcy like my American friends.  The one thing I’m not sure about is if I’ve been treated as well as my tumour.

Last Tuesday, I had a partial mastectomy, another biopsy and a lymph node removed. So many strange encounters happened that day and I’m not planning on shutting up about best practice in patient and family centred care any time soon. I still believe that the only way change will happen is if we keep speaking up to tell our stories.

My husband and I arrived at the hospital at my appointed time, 6:30 am. The receptionist looked up at me and said sharply, ‘we don’t open until 6:45 – take a number and sit down.’

Like I was ordering deli meat, I took a number and dutifully sat down in the crowded, dirty waiting room. Posters were tacked up slightly askew on the walls and the fear was palpable in that little windowless room. We were mostly women waiting for breast cancer surgery – some alone, some like me, lucky enough to have a partner by their side.

‘Number 51’ they called. I stood up and followed the technician into the treatment room. I know they knew my name, and being referred to as a number set an uncomfortable tone for the rest of the long day.

Later, in a curtained pod pre-surgery, the nurse was assembling the equipment to start my IV. ‘Can my husband come in now? I need him to hold my hand while the IV is started,’ I asked, a confession of my needle fear. ‘No,’ she said, not making eye contact with me. ‘He can come in after.’

I shrunk back into my stretcher, afraid to make a fuss, hot tears forming in my eyes. The IV poke hurt, as did the tourniquet, and I had nobody to hold my hand.

Later, in radiology, wires were inserted in two places in my breast while I’m squished in a mammogram machine. This practice, done while I’m wide awake, is nothing short of barbaric. I hadn’t slept or eaten and was already whacked out with fear. My ears start ringing, my vision blurred, I couldn’t breathe and I knew I was going to pass out. The radiologist and tech stopped and gave me a break before I hit the floor.

‘I’m sorry for being such a baby,’ I said, very Canadian in my apology. Later, the Internet tells me that up to 50% of women feel faint during this procedure. Why doesn’t anybody tell me that so I can be prepared? Why isn’t there standard sedation? I feel grateful that my nurse friends coached me and I knew to ask for an order for sedation at pre-admission clinic. But the little Ativan doesn’t help much with my horror at more needles jammed into my breast and the sight of black wires coming out of my body.

I had counselled my husband on the drive to the hospital to ask the surgeon to talk to him afterwards so he can find out how my surgery went. ‘Okay,’ he says, strong, assertive and protective.

The conversation with the surgeon goes like this:

Mike: ‘Can you come and tell me how it goes after Sue’s surgery?’
Surgeon: LAUGHS and says, ‘Oh no, I’m too busy to do that. There’s a follow up appointment in a couple of weeks.’

(It has been six days and I’m still not sure how my surgery went. I don’t know how to get this sticky glue from the tape off me. I am bruised and scarred.  I have blue dye seemingly permanently tattooed in my skin. My armpit is numb. My steri-strips are coming off. My hand has swollen up. I’m still really sore).*

Back from surgery, the nurse is eager to get me up walking so they can discharge me. I’m in a hospital gown. ‘Can she have a robe?’ my daughter asks, helping me out of bed. ‘No, just tie up the gown,’ the nurse responds. No? I’m cold and shivering and I have no clothes under the thin fabric gown. My daughter shakes her head at the nurse, goes to the supply cart, digs around for a robe and gently places it around my shoulders. My girl walks with me, pushing my IV pole while I shuffle to the washroom.

Another missed opportunity for a simple kindness. What is particularly awful to me is that I know to ask for what I need. My family is not afraid to speak up. But we were all dismissed, disregarded and not listened to in the smallest but most significant ways. I saw many people in the waiting room – what of the woman who was alone?  Or the older lady who didn’t speak English?  Or the woman there for a double mastectomy, her sad husband by her side?

This is random but relevant:  Cleveland Clinic has released another great video about the patient experience. I’d add to their concept of ‘words matter’ that ‘actions matter’ too.

I am very fortunate that my dear daughter (a second year nursing student) stayed with me for the past ten days to be my caregiver. She distracted me, kept me company, fed me, looked after her little brother, drove me around and removed my dressings. Before she left, she gave me a list of Ella Rules to consider. Rule number ten said: Ignore stupid things – let yourself be upset but then let yourself move past it. This is sage advice from a 20 year old who has always been wise beyond her years.

I am not ungrateful for treatment, but I don’t feel grateful for my care. I do promise to go into every new health encounter with an open mind.  As Ella advises, I will endeavor to either politely respond to or shake off negative experiences. For my own mental health, I can’t stew in this darkness. I need to stay in the moment and look for the light.

I’m not Number 51. My name is Sue. I’m a writer, speaker, mom of three, wife to Mike, advocate, friend to many. I like sushi, baths, books and yoga and I happen to have Invasive Ductal Carcinoma. Please treat me as well as you are treating my tumour – for I’m a real, live and still-breathing person too.

*note: I have an appointment with my family doctor today and I know she will take care of me.   This experience has compounded my philosophy about the importance of primary care, even when you are in cancer care and surrounded by a bunch of specialists. Family physicians and family practice matters.

**edited to add:  My family doctor fixed my ratty dressing, printed off the surgeon’s report, explained the contents of the report to me and then gave me a hug.  THIS is what I choose to remember.