what are we afraid of?

Death. We are afraid of death.  Or at least I am afraid of death.

This is a question that I posed to Shelley Snell when we met for coffee last week.

Shelley has been living with Metastatic Breast Cancer (MBC) since 2013. She was diagnosed with early stage breast cancer in 1996. But then the cancer came back again and again – first in her breast and then it moved to other parts of her body. When breast cancer shows up outside of the breast, like in the bones, lungs or brain, it is called Metastatic Breast Cancer – or Stage IV. This means it is terminal. 90% of women with metastatic breast cancer die of MBC.

I am a person who had early stage breast cancer. I’m both curious and mortified by the fact that when our early-stage treatment is over, we often leave our metastatic sisters behind. (Note: men can get breast cancer too. My pronouns are female in this piece, but what I say here applies to all genders).

Death is a cold hard fact that I didn’t allow myself to think about before I got cancer. I naively thought breast cancer was treated at the cancer hospital and voila! It was gone. I did not know that for one in three patients, it returns in metastatic form.

Nearly 30% of women have a recurrence of breast cancer that is metastatic. Another 6% are diagnosed metastatic “de novo,” which means their initial diagnosis of cancer is metastatic. So that means roughly 36% of everyone who gets breast cancer becomes metastatic or terminal at some point during the course of their disease.

One in three. That’s a lot of people dying. This is one Canadian every 2 hours. 

Metastatic cancer has been called ‘misunderstood’ or ‘forgotten.’ And why is that? It comes back to death. We do not want to talk about death. So we leave those who are dying behind.

I’ve seen these fractures in communities before. When my son was born with Down syndrome, we lost a number of friends and family who could not ‘deal’ with his diagnosis. Then when he was five, I watched in horror as our own Down syndrome community abandoned a mom whose son with Down syndrome was diagnosed with leukemia.

Now the rate of childhood leukemia for kids with Down syndrome is ten times the rate of the regular population. So leukemia weighs heavily on our minds when our kids are little.

But for our own community of moms – many of us had been abandoned when our kids were diagnosed – to leave one of our own families? This mortified me.

What are people afraid of? Death. This young boy with leukemia represented our biggest fear. So instead of supporting this family in their pain, people ran away as fast as they could. They could not turn towards this family’s pain because they represented their biggest unspoken fear – that their child would die.

This happens too in the cancer world. In our rush to ‘put cancer behind us,’ we abandon those who live with metastatic cancer. So much so that Shelley tells me many women with MBC are not welcome in lower stage breast cancer support groups.

I represent the grim reaper to them – the manifestation of a future they don’t want to imagine. -Susan Anthony, MBC Advocate

That means women with MBC end up isolated and alone. Teva Harrison beautifully captured this sentiment in her book In-Between Days. Teva died on April 27, 2019 of MBC at age 42. I’ve shared the video she made for the website MBC Time at the top of this post.

The metastatic community has struggled to get traction in advocacy, organizing and fundraising because they keep dying. This sounds harsh but it is true.

Shelley believes the only way the MBC community will be able to effectively address the disparities in research funding and multiple challenges of living with metastatic disease is if early stagers like me band together with women with MBC. There’s also a fracture between young women with breast cancer and older women with breast cancer. As someone diagnosed in her 40’s, in between the older and younger worlds, I have felt this too. The only way there is going to be any progress on metastatic cancer is if we work together.

That means we have to stop running away. Oncologists, family and friends keep telling us after lower stage treatment is finished: ‘get back to your life.’ But the fear of cancer recurring is real. Cancer recurrence is a real thing.

There can also be animosity between diseases. “Some people say your disease gets all the attention, while others say, your disease, your problem,” Shelley shares.

The same is true in the disability community. I’ve heard this about having a child with a disability: your kid, your problem. This is a sad testimonial to our North American obsession with being independent and rejecting the concept that one day we might become vulnerable and need one another.

Shelley has great knowledge about the history and politics of breast cancer.

“During the birth and evolution of of the pink ribbon culture, support was often based on the notion of ‘don’t scare the newbies,’” she says.

Women with MBC scare the newbies. Us early stagers are in deep denial that metastatic breast cancer can happen to us. We think that if we do everything right with treatment and are compliant in following doctor’s orders, our cancer won’t come back.

But it doesn’t work that way, as cancer is too smart for these easy explanations. Shelley believes it’s unlikely MBC will be “cured” but will be controlled one day as a chronic disease. There are many environmental and genetic factors at play. Sometimes random shit happens to clean living and otherwise healthy people.

“Research is also looking more closely at ‘prevention’. Preventing MBC is preferable, but what about those living with and dying from MBC right now? Have we become expendable?” asks Shelley.

It is in everybody’s best interest to support MBC research. Shelley tells me only around 7% of research funding raised for breast cancer is directed to MBC research. That’s a low percentage for a disease that will come back to haunt more than one third of everyone diagnosed with breast cancer.

People with MBC are often left feeling like collateral damage, Shelley says. I believe there should be no woman left behind.

In the research field, organizations like Metavivor (USA) are focused on directing 100% of donations to fund MBC research. The MBC Project recruited participants for their international open access research project through social media. Five years ago there was a handful of conferences addressing MBC research, in 2019 there are regional, national and international conferences.

Through advocacy, MBC Patient Advocates like Shelley have emerged as a powerful voice, demanding equitable research funding and expanded participation in clinical trials, as well as promoting improved patient engagement at all levels of medicine. There is still much to be done.

I listen carefully to Shelley. She carries so much wisdom that I’d be a fool to turn and run away, even though I am afraid of death too. But Shelley doesn’t scare me. She’s articulate, passionate and has led a fascinating life, which has included living in Africa. We quickly find a connection over coffee, discovering we both lived in Manitoba for a spell.

She says bluntly: “We are so uncomfortable with hard emotions, but life is painful. Life hurts. Turn towards the pain and face it.”

So what can us early-stagers do? We can be welcoming to our MBC sisters at support groups and in our lives. We can stop treating other human beings like they are contagious. If the thought of MBC triggers our own fears about death, maybe that’s a sign it is time to look at our own emotions and values around dying.

We can support financially too. Shelley and her friend Susan Anthony started MBC Canada to provide information and resources to the Canadian MBC community. They launched their website last fall.  There’s a donation button on the site. I just contributed $50. It is easy to do and took me two minutes. It isn’t much, but it is something.

Shelley wants to keep the website going and organization growing, but Susan died last October within weeks of their website launch. Shelley is having a tough time keeping up the site while living with MBC herself.

Every little donation helps. MBC Canada’s focus is supporting the Canadian MBC Community by providing information, resources and services to MBC patients. They’re committed to directing donated funds to the benefit of the MBC Community, not to salaries and administration costs.

To move forward, first and foremost they need people. They need to raise funds to start their assistance programs. They also need Advocates familiar with MBC. If you can give your time, please connect through this form on the MBC Canada website.

Always research carefully before you give money – many of the more mainstream cancer organizations focus on lower stage awareness and put very little money directly towards metastatic disease support and research. Canadian Cancer Society donations targeted for MBC Research should be marked “for metastatic breast cancer research” on the payment instrument. Funds raised at CIBC For the Cure Walks can now be directed specifically to MBC Research by incorporating the word “Metastatic “ into the team name.

I invite those without cancer and those with early stage cancer to consider these questions: Why are we afraid of people who are dying? Is it that we don’t want to look at our own fear of dying?

Perhaps, as Shelley tells me, looking at our own fear will be the one thing that will actually set our hearts free. I don’t know about you, but I’d don’t want to live out the rest of my days in fear. I want the kind of heart that’s been set free.

As my book publishing date inches closer, one thing that I am committed to going forward is to amplify other voices through my book, this website and my Twitter feed.  I take the lead from people like Marie Ennis-O’Connor and Nancy Stordahl, both women who had early stage breast cancer and who are committed to supporting women with MBC.  The power lies in all of us doing what we can do. This is what I can do. What about you?

This essay is dedicated to Shelley Snell, whose wisdom and generosity informed this essay.  It was written in memory of so many women who died of metastatic breast cancer.  They were deeply loved and are sorely missed: Teva Harrison, Susan Anthony, Nina Riggs, Lisa Bonchek Adams and Beth Caldwell among thousands of other women.  And of course, the godmother of us all, Audre Lorde.  

 

 

 

 

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sue on the radio talking about cancer

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I had the opportunity to be a guest on two Voice of America Teen Wealth radio shows with host Brandi England. The first show went smoothly at the end of April. (Here is the first episode).

The second show was last night. The topic was cancer. Here it is if you have 54 minutes to spare.

It has been two years since I was diagnosed and I have not spoken out loud about cancer beyond a therapist’s room.  My immediate family don’t really enjoy being reminded of my cancer and friends rarely bring it up.  I’ve written a lot about cancer but never had a public conversation about how it feels to have cancer.

Nobody wants to talk about cancer. That’s a fact. This is because cancer is hard to talk about. I found that out last night. This second show was less smooth and there were more um’s and ah’s from me. I was much less polished than the first show, where I talked about being a mother and having a kid with a disability. Cancer is not that familiar to me. I’m still figuring out what has happened to me over the past two years and it showed in this radio conversation.

Why was it so hard for me to talk about cancer?  It is the relative new-ness of the topic for me. It is because it is hard to inject humour into the conversation and I like to use humour to connect with audiences.  I mean, with other people who have had cancer, we often laugh hysterically at the ridiculousness of it all.  But for the general public, laughing at cancer is taboo.  (Although at one point on the show, I shouted:  I DON’T NEED YOUR THOUGHTS AND PRAYERS).  I’m always aware that the people I’m talking to probably had a loved one with cancer and watch my words to make sure I’m respectful of that inevitability.  People have all sorts of whacky theories about cancer, too.  Cancer is a muddy minefield of a conversation topic.

In the end, here is some of what I said:
Cancer stopped me in my tracks. It was my great reckoning.
It’s actually pretty horrible telling people you have cancer.
Cancer really messes with your mind. It is lonely and isolating.
Pretending to be brave and strong is exhausting.

I also talked about the horrible task of telling your own children that you have cancer.

Afterwards, my husband said: you did a good job with a hard topic. I’ll take that. Instead of beating myself up, I’ve decided to practice self-kindness.  I do want to bring cancer out of the shadows and uncover its dark secrets. But it is tough. Today I have, as Brené Brown says, a vulnerability hangover.

The cancer part of my life is not wrapped up with a tidy pink bow. There is no happily ever after.  My story continues on, messy and undone. And if we are honest about it, life in general is messy and undone too. We are all but works in progress.

 

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

 

 

 

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.