as evidenced by his smile

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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

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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.

a muddled mammogram mess

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Edited to add:  Thanks to all the people on Twitter who think they are my oncologist.  (Sarcasm intended).  I understand that the guidelines are for screening mammograms, not diagnostic ones.  My point is that even though I presented with a ‘symptom’, I only went for a diagnostic mammogram and ultrasound (that eventually found my cancer) AFTER I presented to my doctor and asked to be referred.  If I had a doctor that dismissed me, or who didn’t believe me, I would have been sent away.  I was LUCKY to have the doctor that I had and I am LUCKY that I am able to advocate for myself with my boatload of privilege.  Breast cancer diagnoses should not be left up to LUCK.  Ps:  This is my story and I own it.  

There are new guidelines in Canada from the Canadian Task Force of Preventative Health Care about breast-cancer screening. These ones place the responsibility to be screened on the shoulders (breasts?) of women.

“…women should decide for themselves, with guidance from their health-care provider, whether to get screened.” –Carly Weeks, Globe + Mail

As a woman who has had breast cancer, I feel deeply conflicted about this approach.

I found what I termed a ‘ridge’ in my left breast one night laying in bed watching television. It was directly over my heart and it did not go away over the next several weeks. I reluctantly made an appointment with my family doctor to see what she thought.

“It might be hormonal,” she said. “But if you are concerned about it, I can refer you for a mammogram.”

I had no history of breast cancer in my family and I was two years away from being sent for a regular mammogram at age 50, so I said yes. So began the agony that is breast cancer diagnostics, diagnosis, treatment, aftermath and collateral damage that has consumed me for the past two years.

My breast cancer was early stage and I ended up with a lumpectomy and 20 days of radiation treatment. The tumour was hidden deep in my breast, right against my chest wall.

If I had not gone for a mammogram and then subsequent ultrasound, would the tumour – which was slow-growing and lazy – have killed me? Was I over-diagnosed? I will never know.

All this talk in the media about over-diagnosis makes me think: should I have left well enough alone and not even mentioned my concern to my doctor?  On one hand, not going for that initial mammogram would have saved me a great amount of suffering.  On the other hand, I DID have cancer.  Would it have come back with a vengeance a few years later?

The Task Force summary says this:
Screening leads to overdiagnosis resulting in unnecessary treatment of cancer that would not have caused harm in a woman’s lifetime, as well as physical and psychological consequences from false positives. Women less than 50 years of age are at greater risk of these harms than older women.

While I whole-heartedly agree about the physical and psychological harm, I do question the ‘unnecessary treatment’ part.  How do we know that my tumour would have eventual killed me? Answer:  we do not know if my cancer would have or would have not caused me harm in my lifetime.  There is no diagnostic test or pathology that has been developed to tell me that for sure.

Once the pathology came back as malignant, I was thrown on the roller-coaster that is breast cancer treatment. I could not not be treated once the word cancer was uttered –for the sake of my children, my husband and me. This is not a diagnosis that can be ignored.

I am grateful that my family doctor listened to me when I showed up with a concern. However, I do know that not all doctors listen to women. If it is up to us to advocate for our own mammogram screening, how many women will be dismissed?  While the shared decision-making model between patients and physicians mentioned in the report is a great best practice, how much does shared decision-making really happen in real life?  How many ominous tumours will not be found until they are much bigger and more deadly than mine was if women are not taken seriously and heard?

This report dismisses ultrasounds for women with dense breasts, which is a real thing. (My mass was detected by a subsequent ultrasound after my mammogram). It seems focused solely on saving money by displacing the responsibility for making the decision about the screening on the patient.

Let’s face it, mammograms aren’t fun. If you don’t have a good technician, this adds to the discomfort and pain. But having breast cancer ain’t fun either, especially if it is detected in late stages. I don’t mean to fear monger, but breast cancer can kill you.

This only adds to the confusion I already have about screening for breast cancer.   My one last question about it: were women who have the lived expertise of having had breast cancer represented on the Canadian Task Force on Preventive Health Care that made this decision? Cynical me thinks not.

lifted up from ireland

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I’ve never met Marie Ennis-O’Connor, but I know she lives in Ireland and is a force for good on the Internet.  She runs the blog Journeying Beyond Breast Cancer and began a Social Spotlight series which highlighting unapologetic big mouths on the Internet like me.

Here’s my interview, where I had a chance to reflect on my thoughts on social media. I’m a Twitter and Instagram kinda gal and spoke about my forays on both platforms.  (I think Facebook’s harvesting of personal data is particularly evil, so I deleted my Facebook account years ago).  I was honest.  I confessed to scrolling through pictures of wedding dresses on Instagram and taking a break from Twitter because I was tired of the mansplaining.

What I admire about Marie is that she is generous and shares her space in cyber-space with other women.  She uses her platform to help others to rise up who have been patients or caregivers.  She makes room for our stories, to lift us, to give us space to share and practice using our voices.  Importantly, she doesn’t make it all about her.  She doesn’t hog the mike.

We must all follow Marie’s good example to make room for the voices different than our own.  Thank you, Marie for handing the microphone so I can speak.  I promise to hand it down the line to another woman.  And so it goes.  #peoplepower

Beyond Bubble Baths

I was honoured to have my story chosen to be shared on the This is Brave website.  This beautiful site was created to foster community and share stories of women’s mental health.

I’ve written snippets of my travels in mental health since my cancer diagnosis.  This story is a reflection on all I’ve learned the past 18 months about taking care of myself – more than that – about unpacking why I actually didn’t like myself very much.  Self-loathing is a horrible thing.  As Arthur Frank says, it is me writing as the Wounded Storyteller but now more from my scars than my wounds.

I tackled the old notion of self-care in this essay and called it Beyond Bubble Baths.  I also hope to put an arrow in the heart of the whole narrative of having to be brave and strong when you have cancer (or a kid with a disability or become a mother or your marriage breaks up or when you are grieving or during any other significant life event).  There is great pressure in our society to ‘present well’ ‘be strong’ ‘get back to normal’ because of people’s own discomfort with sitting with someone in their pain.

This is Brave is a popular Instagram site and it features the stories of younger moms.  I’m 50, hardly a young mother, so I wrote about what I wished I had known about loving myself as a younger woman and how that would have changed the way I mothered my three children.  I would have allowed the hard emotions, both in myself and my kids.  This was hard to admit and then write.  As I said, my children have had a strong mother, but not a happy mother.  For that I feel deep regret.

Part of the This is Brave experience is that the writers are gifted a photo shoot.  Although the idea of getting my picture taken made me break out in a fear sweat, I gamely drove out to the studio.  Julie from Julie Christine Photography was lovely and immediately put me at ease.  It is weird to see photos of me as usually I’m the one taking photos of my family (or of food).  I know that having photos of myself mean that I’ve stepped out from beyond my various roles (of mother, wife, children’s health advocate) to become more visible on the road to fully embrace myself.

Here is one of my favourite pictures. I am wearing pink because I hate the whole breast cancer awareness crap (also known this month as Pinktober) and I’m taking pink back. It is a sad picture because it is okay to be sad.  If you feel sad that means you have a chance to feel joy too. xo.

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speaking my truth to your power

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I believe caregiving is a women’s issue.  Breast cancer is a women’s issue too.  (Please accept this caveat – I know there are men who are caregivers and men who have breast cancer.  But this post is about women because I am a woman).

Thinking of Dr. Christine Ford reminded me of all the times I’ve been harassed, abused, ignored, oppressed and minimized throughout my entire life, all 50 years of it.  If you are a woman, I know that you are thinking of your darkness too. Yesterday, I wept in my car considering this:  I am Dr. Ford.  We are all Dr. Ford.

My invisibility began when I was a little girl and moved through nursing school, my first marriage and my workplace. I learned to be a good girl, to be nice, to behave and to not make any waves. When I became a mother, I became even less detectable. And when I was the mother of a child with a disability?  Even though my son has a visible disability, both he and I disappeared off the radar almost entirely.  I transformed into an invisible mom.  When I was diagnosed with breast cancer, I became one of the legions of women whose health concerns were ignored and dismissed.  I was just another middle-aged breast cancer patient; a mere shrug from the staff at the cancer hospital.

While I will never ever say that cancer is a gift, one thing that has happened this past year – with hard inner work and the help of a good therapist – I now have razor sharp clarity.  Cancer slaps you in the face with your own mortality.  I know for sure that my time on this Earth is limited.  I thought I had more time.  I’d better step up and focus on what’s important.

Here is my plea:  Do not stop speaking up.  If you are feeling hopeless, read Emma Gonzalez’s wisdom here.  Speak your truth to the power.  The power includes people who work in health care – a setting where there are huge unrecognized and unchecked power imbalances. Health care is not made up only of men.  There are women in power there too, lots of them.  As a mom and a patient, I’ve at times been labelled difficult, crazy and hysterical.  Cancer has allowed me at least this:  I don’t care what you think of me anymore.

Speak your truth. Don’t let the bastards get you down.  I’m with you.  Don’t stop, now more than ever.  Keep going.  Rise up.  The revolution begins at midnight.

today my therapist fired me

You knew what you had to do…
and the road full of fallen
branches and stones.

But little by little…
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own.
-from Mary Oliver’s The Journey

Eighteen long months ago, cancer brought me to my knees.

In a desperate attempt to feel better I tried many things, including obsessive reading, soothing music, meditation, yoga, poetry class, art therapy, walking, podcasts, eating and not eating.  I searched for and found a good therapist. I was in such bad shape last year, wracked with panic, doom and depression, sometimes I saw her up to once a week.

I did hard inner work, including looking at trauma, my family of origin and all that shit.

Today my beloved therapist told me she’s confident I’ve done the work and it is okay if I stop seeing her. I’ve decided I’ll take her words as a compliment instead of a rejection.  I’ll move to maintenance mode and know she’s part of my safety net if I fall again.  There should not be shame in needing others.

Cancer healing is a slow and arduous process. I was privileged enough to take time off to recover and I can afford the costs of therapy, which not everybody can. I’m grateful for that.  Oncologists, insurance companies, employers, families – stop rushing people to get back to ‘normal.’  There is no more normal once you’ve had cancer.

Cancer is not a gift. I’m not fixed. I’m not better than ever. I will always be a person who had cancer.  I think I’ll mostly be okay. I’ll surely stumble again in my life – whether the cancer comes back or not – but I hope I now have the awareness and the tools to slowly get back up with love and support.

I wish administrators, clinicians and the world would realize that emotional healing is as important as medical treatment. Cancer is so much more than cutting out tumours. It is a life-rattling, life-altering experience. Maybe that’s why so many people in my life ran the other way when I was diagnosed. It is terrifying, both for me and my family and friends who steadfastly walked by my side.

Mental health matters for all kinds of recovery and it should be valued and funded appropriately. Take note, cancer agencies and cancer hospitals with skimpy budgets for the emotional care of patients.  If you don’t consider emotional care, you aren’t caring for patients.

I promise to use my big mouth and my modest platform to keep squawking about how crucial it is to consider the whole messy beautiful person in health care.  Health care is despairing today.  It needs an strong infusion of compassion and empathy – for patients, families and staff and physicians alike.  Let’s turn towards each other’s pain.