Friday, October 24, 2014

hold the duct tape

"Women with disabilities often experience health disparity. For instance, in a 2010 study of the barriers preventing women with disabilities from getting screened for breast cancer as often as is recommended, is, believe it or not, lack of physician recommendation. In other words, doctors don’t talk to women with disabilities about getting screened for breast cancer. This is often also the case for pap tests. In a Canadian study (PDF), women with disabilities reported often only receiving healthcare in the narrow area of what is directly related to their disability."

Did you know that women with disabilities often face huge barriers when it comes to breast cancer screening? A conversation with my friend Lene left my jaw on the floor (and I truly thought I'd heard it all). She's written about it on her blog, The Seated View. And be prepared, the duct tape reference is not a joke.

Wednesday, September 24, 2014

just skip the anesthesia. he's tough.

My oldest son had his wisdom teeth out today. While I worried and waited, I got to thinking about managing his pain and remembering the aftermath of my brain surgery two years ago. I made a bunch of notes for a blog post about this and then thought to do a search of this blog. It turns out I wrote a post on exactly this subject almost a year ago. 


Can I blame these lapses in memory on the brain surgery or just on aging? Or stress?

My son's procedure went well and he is now very stoned and asleep in his room. To pay for all this we had to put 1800.00 on our credit card.

This is mind-boggling to me. Why is this not covered by public health care?I know the historical reason why (the first wave of Medicare was supposed to be followed by dental care and a Pharmacare program. That never happened.) but doesn't it cost the province much more to hospitalize someone whose wisdom teeth have become impacted?

Dental care is a real "don't get me started." Ask anyone who knows me.

Fortunately, my private insurance will cover most of the cost. However, it only covers part of the cost of anesthesia. What would have happened if we had been unwilling to pay the difference? Our 16 year old son would only have been partially anesthetized while they yanked out his wisdom teeth? 

This mystifies me.

And it's only a small taste of what we'd experience if we didn't have socialized medicine.

Gratuitous photo of my handsome son, with all wisdom teeth still in his mouth

Tuesday, September 02, 2014

happy new year!

Today is the first day of school in these parts. We all had mixed feelings about it. Summer went by way too fast for me and I think we all revelled in the things we did (a week at the cottage, an overnight in Montreal, a few days in New York) and the things we didn't (lots of sleeping in, watching movies, reading books and hanging out). I'm very conscious these days of how quickly time is passing.

Last year, I wrote a post called "new beginnings" and here I am again. For me (and I suspect for many people), the first day of school will always mark the new year, way more than that first day in January.

Daniel is in Grade 6.

Sacha is in Grade 11.

This is obviously not a first day of school photo. But that was never going to happen.
Summer is over.

It's time to get begin the new year.

Tuesday, July 08, 2014


The random number generator has spoken and Shari and Jo will get copies of "Getting Past the Fear. A Guide to Help you Mentally Prepare for Chemotherapy." I just need your contact info! You can send me an email by clicking on the photo of my book (Not Done Yet) in the right sidebar. Congratulations!

Friday, June 20, 2014

bloggers who live with mets and write about that and other things

The other day, Katherine O'Brien shared a Pinterest board called "Metastatic Breast Cancer: Stage 4 People and their Stories." I'm not on Pinterest but I clicked through and was floored by all the beautiful and interesting people from so many different walks of life. So many are so young. So many of little kids, as I did when I was first diagnosed.

It got me thinking how much connections with others has mattered to me over the last 8 years. I looked back at some of my own lists. I looked at the blogrolls of others. And I realized that far too many of these amazing women are no longer with us.

Today's post is not about the sadness and anger I feel when I think about how many wonderful women have been lost to metastatic breast cancer and how little is actually being done to address our needs. 

Today's post is about our voices. About making a new list of women who are living with metastatic breast cancer and writing about that - and so many other things.

In no particular order:

Katherine O'Brien  I Hate Breast Cancer 


Catherine Brunelle Bumpyboobs 


Anna Craig 


Lisa Bonchek Adams 


The Sarcastic Boob 


Ann Silberman Breast Cancer? But Doctor...I hate pink! 


Jen at Booby and the Beast 


Carolyn Frayn Art of Breast Cancer 


Lulu Change Living Life Furiously 


Uppity Cancer Patient 


Telling Knots 


Kate Kate Has Cancer


Jill Dancing with Cancer

Vicki, Inspiring Breast Metatastatic Breast Cancer Advocacy


Susan Rahn, StickIt2Stage4


Sarah Illingworth 

Victory Over BC




Jude Callirgos



Chantelle Chantelle's blog

Nicole Jasien Walk By Faith Not Sight

Honorary club member: 

Nancy Stordahl at Nancy's Point


Nancy doesn't have metastatic breast cancer and I hope she never joins us but she supported her mother through mets, has been through treatment herself and is a "staunch advocate" for metastatic breast cancer.

The organizations that don't ignore us:

Metastatic Breast Cancer Network




Canadian Breast Cancer Network


ReThink Breast Cancer


This isn't the end. For our stories or for this list. I welcome additions from Twitter or the blogosphere. Just let me know.

Last winter, there was a bit of shitstorm about whether those of us living with mets had the right to be talking about it publicly. It was aimed at Lisa Bonchek Adams but lots of us took it very personally. For me, it brought a re-newed commitment to keep telling all of my story, including the parts about cancer, as honestly and openly as I can (as Lisa so consistently does, with grace, patience and clarity).

I struggled with what to call this post. I personally hate being called a "cancer blogger" because that's not all that I am. I don't even write about cancer in every post. I settled for the rather unwieldy title, above, because I think that's who we are: women, all different from each other, with interesting lives, who write about living with mets and whatever else is of interest to them. I hope to write more about each of them, in the next few months.

Tuesday, June 17, 2014

book review: Getting Past the Fear. A Guide to Help You Mentally Prepare for Chemotherapy

Nancy Stordahl is an outspoken breast cancer advocate. She's been through treatment herself and lived through her mother's illness and death from metastatic disease. She started her blog, Nancy's Point, when she was still in treatment and continues to write there today. Nancy is generous with her experience and supportive of others living through breast cancer. Who better, then, to write a guide to conquering the fear of chemotherapy?

Not just another advice manual, Getting Past the Fear: A Guide to Help you Mentally Prepare for Chemotherapy is full of advice and personal observations. It's not a long book, only 60 pages, but to my mind that's a serious advantage. I couldn't concentrate on very much at all when I was first facing treatment. I was given many books that ended up being helpful and interesting but I couldn't read any of them during the weeks leading up to chemotherapy. Nancy understands this and wastes no time getting right to the point (get it? Just like her blog?)

Getting Past the Fear is full of practical tips, many of which I have never read anywhere else. For example, if I had known that you can get a head cap to fit under your wig "to help keep cooler and minimize itching", I might have actually tried to wear one! And it would have been very helpful to know before my first treatment that it's perfectly OK to unplug the IV (from the wall, not your arm!) and wheel everything to the bathroom. Treatment involves a lot of liquid. No one needs a bladder infection added to their list of chemo side effects.

Nancy is very clear that her experience is just that, and that yours might differ and so might your choices. I do think though that most cancer patients will benefit from considering her advice -  to keep a journal, ask for help when you need it, do your research and bring your list of questions to appointments with your oncologist.

Nancy also suggests planning a getaway, to give yourself a break before, during and/or after treatment. In a passage that I especially loved, she writes of her trip to the North Shore of Lake Superior with her husband:
"During that time away, we spent precious moments sitting on our private balcony marveling at the vastness and beauty of the ever-changing water, reveling in leisurely meals...and enjoying each others' company...One afternoon, there was even a brief, lovely wedding ceremony that took place directly below our balcony. The bride and groom and all their guests never once looked up, so they never realized they had two more unannounced wedding guests. Observing an intimate occasion...was a nice reminder of the fact that life was carrying on."
If reading all of Getting Past the Fear seems too daunting right now, you can dip in and out. Read the chapter headings and the conclusions in bold that Nancy has inserted at the end of each chapter. Check out the list of questions for your oncologist. Read the parts that speak to you, then stick the book in your purse for when you next need Nancy's advice. She's even left you a few pages at the end to add your own questions and observations. And if digital media is more your thing, download the ebook for your tablet, phone or ereader.

Nancy ends her book with the following quote: "What lies before us and what lies behind us are tiny matters compared to what lies within us." (author unknown) 

That sums up the book's message rather nicely: You will get through this. You are not alone.

For more information on how to buy Getting Past the Fear: A Guide to Help You Mentally Prepare for Chemotherapy is its various formats, visit Nancy's Point. The blog is also a great resource for anyone facing breast cancer at any stage.

Nancy's offered two copies of her book, one ebook and one physical copy. Let me know in the comments, if you would like either. If more than one person is interested, I'll choose recipients at random.

The author, with some friends.

Update: Would Jo Bucktin and Alene contact me, please? I need to get the info to send you you book!

Monday, June 16, 2014

not just about breast cancer

Today's post is a guest post from the Mesothelioma Cancer Alliance. This is the first guest post ever on this blog but I wanted to share this issue and felt it would be best if someone from MCA explained the issue in their own words.

Here are some facts provided by Cameron Von St. James, whose wife Heather is a mesothelioma survivor. Note that while Cameron is in the US and writes about that country, asbestos is not banned in Canada, either (Update: This is the June 16 editorial from the Globe and Mail: "Ottawa's sunny outlook on asbestos is out of step with the facts."). In fact, Canada's Mesothelioma Center says our country's "mesothelioma cancer rate is now one of the highest in the world."

Have you ever heard of mesothelioma? Most people have no idea how serious this disease can be unless they’ve been personally affected or have seen the never ending commercials. Mesothelioma is an aggressive form of cancer and unfortunately, the only way to develop this cancer is exposure to asbestos. Sadly, there is no safe level of exposure to asbestos, so any individual who has been exposed has a high risk for developing mesothelioma. 
There are many eye-opening facts about this disease such as:
•    “Asbestos” means inextinguishable in Greek.
•    Inhaled or ingested broken asbestos fibers may cause an inflammation of internal tissue and disrupt organ function, which leads to the development of mesothelioma. 
•    Asbestos was used extensively in the mid 1900s and is still not banned in the United States today. 30 million pounds of asbestos are still used each year.
•    Symptoms usually don’t show up for 20 to 60 years after you’ve been exposed to asbestos.
•    Once diagnosed, mesothelioma patients have many options for treatment. Conventional treatment options for mesothelioma include surgery, radiation and chemotherapy.
The Mesothelioma Cancer Alliance has dedicated a significant amount of time in making their site the best resource for patients, families, and individuals who are interested in learning more about the disease. Their mission is to spread awareness in hopes they can prevent this from happening to another family.

Update, June 19: The Globe and Mail "Debate" section has a new article, 

Asbestos exposure: We’re just at the beginning of a health crisis and a longer piece in the Report on Business, called "No Safe Use" .It's a scathing indictment of the ongoing refusal of the Canadian government to even acknowledge the problem, let alone take measures to protect it's people.