cancer isn’t a competition

Screen Shot 2017-08-18 at 2.09.26 PMWhile I’m a newbie to the cancer world,  I have been the mom to a kid with a disability for 14 years.  This doesn’t make me any kind of expert – it only makes me wary and tired.

In the disability community, I have detected a weird undercurrent of competition.  Whose kid is *more* disabled and requires more care?  Whose kid has been in the PICU? Who has an invisible disability?  A visible one?  Governments also love to make funding decisions based on selectively-chosen diagnoses.  Bureaucrats decide who needs support or respite or childcare, not families or people with disabilities themselves.

All this competition for dollars, compassion and care has fractured the disability community into tiny silos.  When we are torn apart, we are weak.

The best people rise above this competition.  I love when I connect with a mom about what we have in common (how awesome our kids are as well as struggles with schools, health care, government funding and society), not purely what our kids’ different diagnoses are.  Aaron has much in common with kids with different syndromes/stuff going on with them than Down syndrome (and he smartly doesn’t label his friends based on their diagnoses).  The same is true with cancer – I’ve been blessed to meet many folks in the chronic disease world the past few months who have been kind and supportive to me.  They don’t have to have the exact same thing I do to offer empathy on topics like body image, pain or identity.  Together we are all stronger.

After becoming a cancer patient, imagine my surprise that while breast cancer campaigns have done a lot to raise awareness, fundraising campaigns do not benefit me as a patient in any way.  I received medical care at our cancer agency (at no direct cost to myself, thanks Tommy Douglas) and even pick up my prescription at the cancer pharmacy so it is covered by the hospital.

But any ‘extras’ I might have required for my mental, emotional or spiritual health come at a cost.  These are available in the private sector and for those who either have insurance or can afford it.  Such is our two-tiered Canadian health system.

There are other tiers in cancer as well.  Have lung cancer?  Expect constant questions if you smoked (and so what if you did?).  Have skin cancer?  Ditto the questions about tanning or sun exposure.  Have any kind of cancer at all?  Many snide remarks about your ‘unhealthy’ lifestyle will be slung your way.

I consider this dumping on people who are the most vulnerable – the ole ‘blame the patient’ phenomenon.  This happens in the disability world too, with the dreaded:  why didn’t you get prenatal testing question that is asked of families with children with Down syndrome.  Isn’t just having cancer (or a baby with a disability) enough for a little bit of kindness?  It feels like we are all competing for a finite amount of compassion in this messed up world.

Dig deeper and breast cancer has its own weird pecking order.  Mastectomy (single or double) or partial mastectomy.  Chemotherapy or no chemotherapy.  Radiation or no radiation.  Estrogen blockers or not.  I didn’t have chemo and have felt that I don’t fit into the traditional world of breast cancer.  One nurse said to me:  ‘well, radiation isn’t as bad as chemo.’  Which I’m sure is true, but because I didn’t have chemo, radiation was indeed the worst thing that happened to me.  It wasn’t a walk in the park at all.  In fact, the first day I had radiation was one of the worst days of my life.  But I’ve learned to bite my tongue because I know there are others who have been through much more taxing treatment.

This moves into prognosis too:  NED? (No evidence of disease, the ‘survivors’) or mets (metastatic breast cancer, woefully ignored and underfunded)?

The only way to temper this strange competition in the health care world comes from wisdom I heard once from a spiritual care leader at the children’s hospital where I used to work.

She said:  You have your story and other people have their stories.  It is okay for these stories to be different.  

Let’s embrace each other’s stories without tearing each other down.  Let’s recognize that we have more in common than not and stop allowing governments, society and systems to fracture us apart. As a wise therapist once told me:  you can’t lose if you don’t play the game.  Opt out of comparison.   If we make it safe for every patient and caregiver (and health professional, too) to tell their stories – even if their stories are different than ours – then all the things that separate us will magically disappear.

my post-cancer bod

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I just finished reading Hunger by Roxane Gay.  This is an honest book about food, weight and self-image.  Emboldened by Roxane’s writing, I want to talk about bodies.

Every body has a story and a history. – Roxane Gay

Like many women, I have had a tortured relationship with my physical self ever since I was a young girl.  At age 48, I finally had slid into a semi-solid state of acceptance. Then breast cancer appeared last February and totally erased any hard-fought body peace I nurtured over the past 40 years.

The past few months, I was gifted a scarred dent in my left breast, permanent radiation tattoos and a recently-burned boob.  Tamoxifen has added greatly-unwanted fat around my waist.  If nothing else, before my diagnosis I was okay with my hourglass figure, which is now slowly thickening.  Radiation caused fatigue and I’ve been (situationally) depressed.  None of this has helped with the weight gain.

Part of the body torture in my past was an eating disorder, where I became obsessed with numbers – pounds and calories ruled my life.  At the doctor’s, I close my eyes at the scale and ask they not tell me how much I weigh. But I know I weigh more because I now barely fit into what used to be a ‘bad size’ for me.  Who decides what is a ‘good’ and ‘bad’ size?  And why do I believe them?  (Fuck you fashion industry).

I don’t have the energy to acquire an eating disorder right now.  An eating disorder is a full-time job, and while adopting the control associated with not-eating is sort-of attractive to me, I also want to be kind to my poor body – it has been through a lot.

So this leaves me with resigned acceptance.  (And yes, being active and drinking water and eating healthy – don’t worry.  I know the drill).  Oddly, when I was very thin after my first marriage broke up, I did not love my body one bit – instead, I was at constant war with myself.

Now that I’m chunky and been through cancer treatment, I oddly feel a glimmer of love for my beleaguered self. My dear husband is pro-Sue. My hips carried three children. My breasts breastfed three kids. A tiny ridge in my left breast signalled the tumour that was growing underneath.  I’m grateful to that ridge too – serendipity (and a family physician who listened to me) caught my cancer early.

We just returned from holidays and being on the beach for two weeks was totally freeing.  I stopped wearing make-up.  My curly hair became a rat’s nest.  I wore a bikini to the beach.  A bikini!  Me with my post-cancer bod and all my scars and lady lumps.  (I am thankful to the ladies at the swimsuit store Nettle’s Tale and my daughter who helped me pick out flattering bathing suits – I appreciate their collective body acceptance philosophy).

I mean, I’m not going to compete with the 18 year old surfing girls on the beach! So why bother trying.  I’m an almost-50 year old mom who has a soft bod.  I gave up caring for those two magical weeks, but when I squeezed into my jeans when I arrived back home, the self-doubt started creeping back in.

Why is this all so hard?  An acquaintance told me she stopped taking Tamoxifen because she gained weight.  Let that sink in:  she would rather increase her risk of cancer recurrence than be fat.  This shows how we glorify thinness at any cost.

“What does it say about our culture that the desire for weight loss is considered a default feature of womanhood?” – Roxane Gay

So many women after breast cancer treatment struggle with added weight due to chemo, steroids or Tamoxifen.  I can’t exactly wear a sign around my neck that says:  I gained weight because of cancer drugs. I am who I am for whatever reason.

My only hard-fought lesson so far from having cancer is this:  Love yourself.  And that includes honouring your body, no matter what.  I’ll just keep bumbling along with my love-hate struggle with the physical embodiment of me.  I won’t forget (and you shouldn’t either), as Roxane Gay says:  “I am stronger than I am broken.”  I hereby welcome you to be jiggly (or not) with me.

the gentle hearts will help us heal in the end

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A painting given to my daughter, a gentle soul who is entering her third year of nursing school.

It is a commonly held notion that patients will only give feedback when care is either very bad or very good. Those who have ordinary experiences do not usually take the time to write a letter or fill out a comment card.  I’d like to commit to speaking up when things go well, as well as when they go poorly.  Here’s my story of a perfectly ordinary appointment.

Today I had time booked with a radiation oncologist at the cancer centre.  I think appointments with oncologists strike fear into most people.  It must be a strange job to be an oncologist and have people show up in your office terrified to see you.

This was my first time back at the cancer centre since my last day of treatment.  On the drive there, I was an anxious mess.  I drove as fast as I could in bumper-to-bumper Vancouver traffic and loudly played a Tragically Hip live album on the car stereo to give me some moxie.

Courage, my word
It didn’t come, it doesn’t matter
Courage, it couldn’t come at a worse time

My regular radiation oncologist was on holidays, so I was booked into see someone new.  I woke up this morning awash with anxiety thinking about this new doctor. What if he wasn’t kind? And yet another new person looking at my poor boob and this time a man to boot? Great. I might as well be marching through the cancer centre with no shirt on with the amount of dignity I have left.  I had to go to the appointment by myself, as my husband had to remain at home to look after our son. Being alone never helps my monkey brain either.

I eyed my bottle of Ativan before I left. Isn’t it ironic that the main reason I pop anti-anxiety pills is when I have an appointment at the hospital? I decided instead of taking a pill to park a few blocks away from the cancer centre and walk to see if the trek would help settle me down (it did).

I hiked through the leafy residential neighbourhoods, grabbed an iced coffee and snuck in the back through the parkade elevator. The sight of all the people with cancer waiting in the lobby always makes me sad. In fact, the whole building makes me sad. It isn’t my favourite place to go.

I dutifully checked in with the receptionist, who was pleasant enough, and sat down for about three minutes before my name was called. I have to say that the radiation folks are all very efficient – there’s very little waiting in that department. The nurse (I think?) who fetched me asked how I was doing. She didn’t share her name or her role and I didn’t have the energy to ask. We chatted a bit about burned boobs and fatigue and she left me alone in the room to change into a gown. The radiation oncologist knocked and came in a few minutes later.

He was a young physician with a gentle manner. He introduced himself and shook my hand.  He sat down in the chair while I was perched on the treatment table. I knew this was my last radiation oncology appointment and so I had my notebook with my list of questions for him.

In total, he spent almost half an hour with me. He never appeared rushed or glanced at the clock. He was both professional and friendly. He smiled and made eye contact. Except for my physical exam, he remained seated and clearly answered all my questions. It reminded me how important communication is for physicians. It must be challenging to read a patient when they first meet them to figure out how to talk to them like they aren’t stupid, but in a way they understand. Translating recurrence rates, statistics and risk factors into layperson terms takes talent and skill.

He wasn’t rushed and didn’t seem to try to be wrapping the appointment up in any way. I never felt as if I was intruding on his time. He was there for me for the entire half an hour. He said a number of times – if you ever want to come back and see us, just give us a call. He shook my hand again when he got up to leave.

I walked back to my car feeling calm and relaxed. I felt as if I was taken care of, mostly because of how this young physician behaved and not what he did. His friendly, calm, unrushed manner turned what could have been a stressful and upsetting oncology appointment into a perfectly fine oncology appointment.

I assert that the so-called bedside manner matters a lot. While our interaction might have been just an ordinary appointment, it meant much more than that to me. I’ve said it before but it bears repeating: it is these little things – a handshake, a smile, patience, eye contact, a calm manner – that mean a lot to us vulnerable, broken patients, every single time.

Medicine might cure (sometimes), it doesn’t always heal. This oncologist was not only a specialist, smart and brimming with lots of medical knowledge, but he was a healer too. And right now, I mostly need to heal.

Cheers to all the healers out there, who comfort and alleviate suffering just by holding space for their patients. Holding space is the ultimate demonstration of respect for patients.  I strongly believe that it is these gentle hearts who will help us heal in the end.

once i ate a doughnut

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the doughnut in question

It was your shitty lifestyle that gave you cancer, and if you don’t change your shitty lifestyle, your cancer will recur.

This was the key message to a two-day workshop for cancer patients that I attended last week. Half way through day two, I stood up and walked out. If my time here on Earth is limited, I don’t need to spend my days being lectured to about this kind of sanctimonious crap.

Instead, I went for a long walk, met my husband for a lunch (I had a salad, just for the record, since I’m feeling defensive now), went for another long walk along the beautiful Vancouver seawall and met up with a dear friend for tea. This seemed like a healthier way to spend my time.

I signed up for the workshop for my Summer of Healing after my breast cancer diagnosis and treatment this year.  I thought: I’ll show up and be open to learning. I lasted a day and a half before the blaming, finger pointing and judgmental tone of the lectures from the ‘experts’ did me in.

The room was filled with people with cancer who had lived healthy lifestyles. I’d call this the classic west coast way of life – in this case, there were many fit, nutrition-conscious women who happened to have breast cancer. (And they were pretty pissed off about it, too). There were also three young people whose cancer had recurred.

The presenters did not understand their audience. I’m not sure how blaming people with cancer for getting cancer in the first place is helpful. Patients do not need more fodder to add to our own feelings of guilt.   We are also not stupid.  We know that being active and eating healthy is important.  No kidding.

Even if I smoked, drank, was obese, ate too many doughnuts, warmed up my food in plastic containers in the microwave, does this mean that I deserved to get cancer or that I am less deserving of care or compassion for my cancer?

The ‘it is your own fault you got sick’ mentality is what is feeding the repeal of Obamacare in the US with the BCRA Act. I follow this awful Act carefully on Twitter and feel deeply outraged for my American friends. We’d be so hooped if we lived just a few kilometers to the south in the US – my husband and I are both self-employed, we have a kid with a disability and now I have cancer.  We’d also be bankrupt if we didn’t have proper insurance coverage.

This patient-blaming attitude is pervasive everywhere, including in Canada. (Although I’m extremely grateful for our Medicare, which is our quasi-universal health care coverage for hospital and physician office care. This means I don’t have to pay for my medical care because I got sick).

“Maybe you will live a healthier lifestyle afterwards,” a friend said to me on the phone, not so helpfully, when I was first diagnosed. I was lying on the couch recovering from surgery. This implied blame is thankfully mostly unspoken, but was the overt attitude at this ‘cancer care’ workshop.

The truth: cancer is a combination of genetics, bad luck, rogue cells – and yes, environment and lifestyle are factors too. But there is no one cause of all cancers – cancer is much more insidious than that. Our own cells turn feral on us for all sorts of reasons. If researchers knew what that reason really was, we would already have a cure for cancer. You can’t prevent cancer by doing any one thing.  (Read about a recent study from John Hopkins about the topic of risk factors here).

The real reason I think people are blamed for getting cancer is because we are all terrified of becoming vulnerable, needing help and dying. We think that we can do all sorts of things to avoid death.  Alas, there is a randomness to living that is out of our control. There was a 1 in 700 chance I’d have a kid with Down syndrome, but I had him anyhow. (Many feel my son’s birth could have been prevented, but that’s for another blog post). The current stat is that 1 in 9 women in Canada get breast cancer. I happen to be one of those women.

I know I have lived through many women’s biggest fear. Once you start with the boob-squishing mammograms, the idea that you might have breast cancer begins floating around in your mind. I thought I was immune from breast cancer because I breastfed all my children. That was an arrogant, naïve and mistaken notion.

I’m not suggesting you don’t live a healthy life, whatever that means to you. That would just be silly. But…stop the patient blaming when people do get sick. None of us are going to escape this world without acquiring some sort of illness and eventually dying. This is part of life.

My healthy lifestyle changes since getting cancer include: holding those who showed up for me close, more hugging, going to therapy to finally figure out how to love myself, meandering on long walks, marvelling at sunsets and remembering to breathe.  I still eat cheese, lie around in my bed watching Netflix and enjoy a tall glass of cider. Everything in moderation, folks. My best advice is to go forth and live your life under the guise of joy and not fear.

Cancer workshop organizers, shaming patients is not going to lead to behaviour change. (See this great post by Carolyn Thomas about ‘non-compliant’ patients).  Being perfect does not prevent cancer.  Try treating those who are suffering with respect and compassion. Suspend your pious judgment and meet people where they are at.  People who have cancer need your help (not your disdain) to learn how to heal, inside and out.

glorious (grandmas)

After my first marriage broke up long ago, I attended a support group where we had to draw a picture of a place where we felt safe when we were children.  I drew a picture of my Grandma’s house in rural Alberta where I used to spend part of my summers.

This was a lazy rose-coloured time, spent reading my Grandma’s condensed Reader’s Digest books in the gazebo down by the apple tree and eating beef dips at the Woodward’s restaurant on our shopping trips to the big city of Red Deer.  My Grandma and I had the same size feet and she used to lend me shoes out of her extensive shoe collection.  The smell of homemade bread still brings me back to her kitchen.  When I got back home, we became pen pals, sending each other long hand-written letters.

I loved my Grandma a lot and she loved me back, fiercely and unconditionally.  She left this Earth three years ago, and I wrote about her here.

Lately, I feel as if I have nothing profound to say.  I’ve become still and quiet, withdrawn and incapable of the simplest chit-chat.  My radiation treatments ended one month ago and my poor beleaguered left boob is healing.  I’m still fatigued and need a nap every day to make it into the evening.

I’ve dubbed this as my summer for healing. Cancer really messed up my mind, spirit and body.  Somebody said cancer is a mind-f*ck and I’d whole-heartedly concur.

But.  I’ve signed up for a two day workshop this week at a local cancer support centre.  I found a lovely therapist who once had cancer too.  I’ve also been thinking about my Grandma often because my memories of her give me great comfort.  When a friend shared Macklemore’s new video Glorious, the images of his own grandma along with the lyrics dissolved me into tears.  My daughter says:  Macklemore: the only rapper to make moms cry.

I feel glorious, glorious
Got a chance to start again
I was born for this, born for this
It’s who I am, how could I forget?
I made it through the darkest part of the night
And now I see the sunrise
Now I feel glorious, glorious
I feel glorious, glorious.

Now I don’t feel glorious at all.  I still haven’t found that freaking silver lining.  But sometimes, when I’m with my husband and my kids, I feel a little glimmer of happy.  It zaps through me and then it is gone.  I am hoping that glimmer is how the glorious will begin.

books, glorious books

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I have a long history of leaning on the written word to navigate turbulent times. When I first became a mother 24 long years ago, Dr. William Sears’ The Baby Book was my Dr. Spock of the 1990’s. Ariel Gore’s The Hip Mama Survival Guide and Anne Lamott’s Operating Instructions also lived dog-eared beside my bed.

After my first marriage split up, I tapped Anne Lamott once again, lugging her Traveling Mercies in my suitcase when I travelled to Norway with my two young kids. This book served as a salve for my single mom pain.

Martha Beck’s Expecting Adam was one of the only books published 14 years ago about having a baby with Down syndrome. It gave me solace when the baby I expected was not the baby I got. Roadmap to Holland by Jennifer Graf Groneberg offered me a crucial guide to being a new kind of mother. Later, Andrew Solomon’s Far from the Tree offered me important perspective on disability.  His book is a well-researched literary encyclopedia of parenting a child with differences. (I wrote about crushing on Andrew Solomon here). As my boy has gotten older, I have cherished Ian Brown’s musings on the value of people with disabilities in his The Boy in the Moon.

For general woe, I’ve sent Broken Open by Elizabeth Lesser to many a friend who is going through a rough time.   Books by strong women always perk me up. Cheryl Strayed’s Wild and Elizabeth Gilbert’s Eat Love Pray were both books before they were mainstream movies and I gobbled them up in the early days of my second marriage.

Cancer arrived, uninvited and unwelcome, in my left breast earlier this year. In an attempt to comfort myself, I have accumulated too many cancer memoirs, most of which I haven’t even cracked open. I’ve ventured into a few, but found them too cheery, too preachy or too prescriptive. I’ve piled them away in my bookcases for later.

I keep trying on the written word for size. The cancer agency happens to be close to an independent bookstore, so I have spent many hours loitering in the aisles between radiation treatments and oncologist appointments.

These are my favourite books I’ve read over the past months. Many of them came at me sideways, as they aren’t necessarily full-on cancer memoirs, but they contained sentiments that touched on issues that have become suddenly important to me.

Rising Strong by Brene Brown – I’m desperate to gain some resiliency and Brene’s TEDx Talk about vulnerability remains one of my favourite TED talks of all time.

The Bright Hour by Nina Riggs (I reviewed this for The Underbelly, here). Although it is called A Memoir of Living and Dying, I found it to be a beautifully hopeful book.

Ditto with Paul Kalanithi’s When Breath Becomes Air, a tender and tough book about a neurosurgeon who happens to have cancer.  I read it a year before I was diagnosed, but recently revisited it again.

Hungry by Roxane Gay – helped me start to forgive my body as I’ve struggled with the body issues that have accompanied this damn cancer.

Birds, Art, Life – Kyo Maclear’s book was deeply soothing to me as I was searching for grace while waiting for treatment. I wrote about it here.

Teva Harrison’s In-Between Days is both funny and telling – a creative graphic memoir about living with metastatic breast cancer.

The Emperor of all Maladies by Siddhartha Mukherjee is an impressive, Pulitzer Prize-winning biography of all things cancer, useful as I am trying my damnest to understand this elusive disease. This book is painful to read if you actually do have cancer, but well worth the effort.

Illness as a Metaphor by Susan Sontag is a classic book that analyzes the tired old ‘cancer as a battle’ analogies and got me starting to ponder my new identity as a sick person.

I’m still trying to figure out so much. I’m a nerdy library girl at heart and reading books is my way of gathering information and soothing myself.  Lately, I have remembered that books have always been my friends.

What books provided comfort when you went through dark times? I’d love to add to my collection – please consider leaving a comment with your recommendations.

health squawk

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Rabble-rousing by truth-telling

Health Squawk is my new Instagram account where I share anecdotes about my travels in the health care system.  This is about unveiling the secrets of health care, which includes both the inspirational and the profane.

I believe in using our voices to change the world. The way patients and caregivers do this is by sharing our stories and insights. I dabble in topics that include having breast cancer and being the mom of a kid with a disability.

Do you have a Health Squawk to share?  A short quote illustrating something ridiculous or humorous in health care?  Email me at:  sue@birdcommunications.ca.

ps:  You are most welcome to share my images, but please do so with credit and a link back to this blog.