Life is Healthy

Question 1: The Financial Impact of Breast Cancer

  

In May 2010, the Canadian Breast Cancer Network released the research report entitled Breast Cancer: Economic Impact & Labour Force Re-Entry, which firmly positioned breast cancer as an economic as well as a healthcare issue.

  

The economic impact of breast cancer is significant, and in many cases devastating for patients and their families. 80% of respondents experienced an economic impact following their diagnosis, often with distressing long-term financial consequences.

  

Some report findings:

• Average decline in household income was $12,000 or 10% of family income
• 44% of respondents used savings, while 27% took on debt
• One fifth of respondents returned to work before they were ready because of financial pressure
• Those who had chemotherapy had a greater loss of household income and were 49% more likely to take longer than 16 weeks off work

Survey respondents reported that the average duration of their breast cancer treatment was 38 weeks, and two-thirds of the respondents took 16 weeks or more off from work. Because Employment Insurance Sickness Benefits last for a maximum of 15 weeks, there was an average gap of 23 weeks during treatment without coverage.

  

If elected, will your government:

  

A. Lengthen Employment Insurance Sickness Benefits for Canadians undergoing treatment for breast and other cancers as well as other illnesses and chronic diseases that require long periods of treatment so that no one who is ill is penalized by the current limit of 15 weeks of sickness benefits?

  

B. Cancel the two-week waiting period for EI Sickness Benefits so that sick Canadians are not penalized?

  

C. Immediately extend the Employment Insurance Compassionate Care Benefit to cover family caregivers providing care to those with breast cancer, other cancers and other long-term conditions?

a. Increase the benefit to 75% of workers' earnings?

b. Increase the benefit period to a maximum of 52 weeks?

c. Allow partial weeks of compassionate care leave over a longer period?

d. Expand the eligibility criteria beyond imminent death within 26 weeks?

  

Question 2: Drug Approval Process in Canada

  

The drug approval process in Canada is lengthy and complex. Currently the performance targets as outlined on the Health Canada website is 300 days for "non-priority" drugs and 180 days for "priority" drugs.

  

Once drugs are approved by Health Canada, cancer drugs pass through the Pan-Canadian Oncology Drug Review (pCODR), formally the Joint Oncology Drug Review (JODR).This process can take up to a year for recommendation to be made. Provinces and territories may then either confirm or disagree with pCODR's recommendations, often resulting in further significant delays and an uneven patchwork of drug coverage across Canada.

  

Cancer patients in Canada face unduly long waits for much-needed drugs, and medications available in one province or territory may not be available in another. But when it comes to cancer treatment, especially for advanced or metastatic cancer, time is of the essence.

  

If elected, how will your government:

  

A. Ensure that the approval processes for new treatments are shortened to permit timely access to new treatments for those who need them

B. Ensure that no cancer patient in Canada goes without internationally recognized gold standard treatments

  

Question 3: Wait Times 

The Canadian Breast Cancer Network's 2008 Breast Cancer Wait Times in Canada Report Card showed that not all Canadian women are receiving equal access to breast cancer treatment. The project was undertaken in order to gather information about what happens across Canada in terms of wait times in four important areas: from abnormal screen to diagnosis, from diagnosis to surgery, time to radiation, time to chemotherapy.

  

We found some outstanding examples of best practices and much evidence that many jurisdictions across the country are working on innovative solutions to the wait time issue. However, the most disconcerting finding was that there are no national benchmarks for wait times and no standards for wait time reporting systems across the continuum of care. The data reported are calculated differently across jurisdictions making it impossible to compare wait times. This has not changed since 2008.

  

In the absence of comprehensive and consistent wait times data, there is no certainty that people diagnosed with breast cancer are receiving optimal care.

  

This is a complex issue. There needs to be national benchmarks for maximum wait times for diagnosis and treatment. Electronic health records must include consistent reporting of wait times across jurisdiction. Best practices must be shared and implemented across the country. Access to timely cancer care cannot depend upon ones postal code.

  

If elected, how will your government:

  

A) Provide the infrastructure necessary to ensure comprehensive and consistent standards for wait time reporting for breast cancer diagnosis and treatment across Canada

B) Ensure that national benchmarks are established for wait times associated with surgery and chemotherapy

C) Ensure the adoption of electronic health records

  

  

Join our survivor advocate campaign and make canada's decision makers aware of the issues that are important to you. Contact khurley@cbcn.ca for more information on how a little bit of your time can make a big impact.

In 2010, I:

Made soup.

Started running again and kept at it (in fact, I did the Resolution Run 5K last night before breaking into the wine and fondue).

Started editing my novel. It doesn't really have an ending yet but I don't totally hate what I've written, so that's a start.

Found a writing buddy.

Knit a lot of dish cloths.

Played lots of Scrabble/Lexulous

Had my heartbroken when my dog died.

Went to Florida in the in the summer to get away from a heat wave.

Spent some quality time with girlfriends.

Organized a team for the Run for the Cure, called No Pink for Profit. By run day, we were more than 40 women and we raised more than $20,000.

Fell in love with Twitter.

Finally got a smart phone.

Learned that grief is not a linear process.

Spent a lot of time thinking about community, friends and family. I am very, very lucky.

For 2011, I wish us all love, peace, good health and many wonderful adventures.

Chances are very good that you've already heard of the It Gets Better Project, which was started in response to a series of suicides. Young people (some as young as 13 years old) are choosing to kill themselves rather than continue to deal with being bullied or shamed.

I love this powerful, touching and often funny series of videos aimed to give hope to young (and older) teens who are feeling depressed or alone because of their real or perceived sexual orientation.

This one from Pixar is the favourite in my house.




A day or two ago, The Maven shared this video on Facebook. These kids are saying that things need to get better now, not just in the future. It's brilliant and I am in awe.

Reteaching Gender and Sexuality from PUT THIS ON THE MAP on Vimeo.

Of the four women being made over, two of us picked our clothes and shoes in the morning and then had our hair done after lunch. I was grateful to be in the afternoon group and have someone else do the work for a couple of hours.





Actually, I did have to do a bit of work. It took concentration to separate those little papers.





You can't really see all of them, but there are THREE little bowls of colout being applied to my head.





This is my favourite part.











And this is why my hair will never again look the way it did when Tony was finished with it. How does anyone do the back of their own head like that?







Thanks so much to Tony from L'Elégance Salon (they don't have a web site or I'd provide a link), the St. Laurent Centre and the Ottawa Regional Cancer Foundation for making all of this possible.



(All photos by S. Sioufi except the last which was provided by T. Vincent)

It's not that I don't have anything else to talk about. It's just that life has been really, really busy lately and when I finally get the time to blog, my brain is no longer working.

I thought I'd continue sharing my makeover photo-story with you. Please feel free to move right along if you're bored with this stuff. Let me know in the comments if you've read anything interesting lately.

Meanwhile, the shoe store was more fun than the changing room:

First I had to pretend to be shopping for shoes, so that A Channel could get some footage.

Check out the heels on these babies.


I threw on this dress so that I could be filmed without ruining the surprise. It hadn't even been among the outfits that I considered but I loved it so much that I thought about changing my mind. Or going back a few days later and buying it. But seriously - where would I wear a second fancy outfit? To the dog park? Buying groceries? To parent-teacher interviews?


Can you tell which shoes I came in with?


It just occurred to me that the ones I chose (#53) look a bit like my old Blundstones mated with the those sexy pumps I looked at when I was still wearing the diva dress. Little boots but with a ridiculous heel.

See that crazy grin on my face? I love shopping for shoes.


Here's a better view of the whole ensemble. The St. Laurent Centre even paid to have my top altered. The outfit is hanging in my closet. I may just decide that I will wear it to the dog park.

Arrived at the St. Laurent Centre with my friend SS, met the other women and realized that I was going to have an exciting day.


I was impressed with Tony from L'Elegance. He was consultative but had a pretty clear idea of what he wanted to do.


Trying on clothes was hard work. I don't have photos of some of the real duds or I would share (really I would). Finding items that fit and looked good was a real challenge and there were moments when I felt extremely frustrated. There were lots of great helpers, though.


I was determined to be open-minded but this was just too much sparkly for me. I felt like I was wearing a very shiny washboard.

For those in the Ottawa area, my makeover will be televised on the A Channel tomorrow morning. My segments will air tomorrow morning at 9:13, 9:35 and 9:48.







Yesterday, I shopped and had my hair done. Tune in tomorrow for the big "reveal." Look at my smile in this pic. I was very spoiled and surrounded by amazingly caring people all day. I was overwhelmed by the kindness and enthusiasm of everyone I met, including the other three women who joined me in this adventure.

Thanks so much to the St. Laurent Centre and the Ottawa Regional Cancer Foundation for making this happen, to T. and AB for nominating me and to SS for coming with me for moral support (and taking all these great photos).

I'm going to be quoting this brilliant speech given by my friend Andrea today (I'm doing a talk at Carleton University) and I realized that I have never shared it with you here, even though I found it to be deeply inspiring.

Please watch, and go and leave a comment over at We Can Rebuild Her so that Andrea can know the relevance and resonance of her words. It's a welcome reminder that nothing we do to effect positive change in this world is ever irrelevant.



This talk got a standing ovation at PAB 2010. I've watched it several times and it still gives me shivers.

From the Canadian Breast Cancer Network:

Please circulate this to your network members, friends and family, we would love to see them there!

OTTAWA, Oct 1 /CNW/ - Today, October 1, is the start of Breast Cancer Awareness Month and the Canadian Breast Cancer Network and co-presenter Canadian Breast Cancer Foundation will recognize the month with a unique networking event for 400 young women with breast cancer.

The National Conference, called "Body, Mind, Spirit", will offer young women with breast cancer the opportunity to network with others who understand their situation, find out about the latest research directly from some of Canada's bright young researchers, and follow theme sessions on issues everyone with breast cancer is confronted with.

Young women will have the chance to be supported in all aspects of their cancer journey. Theme sessions for the body include healthy living and prevention; for the mind, sessions on chemo brain, self-advocacy, medical research and the latest about breast cancer; for the spirit will touch on everything from Yoga sessions to a chance for a guided walk in a specially constructed Labyrinth for spiritual centering.

Participants can look forward to frank discussion and to be able to question experts about babies after breast cancer, breast reconstruction, what to tell your children about breast cancer and when, and intimacy and sexuality after breast cancer.

A writing workshop and a creative art session will aid self-expression, and book signings and a breast-cancer related art show will give participants a chance to create art, meet authors and to view theme art by people from all over Canada affected by breast cancer. Poster presentations will cover all that is new from breast cancer resources to community support groups. Author and breast cancer husband Mark Silver will interest many with his experiences and encouragement. .

The conference will feature two gala evenings; a "Dinner and a Movie" night presented by Rethink Breast Cancer, a special glimpse of their upcoming BreastFest with Jonna's Body, Please Hold and an appearance by filmmaker and comedian, Jonna who will present her Girl Manifesto - an uproarious look at our kooky notions of body image, defying the Image Police and freeing your inner renegade. Movie night food at a picnic in the park will feature everyone's favorite treats.

The second Gala will feature an Arabian Night with belly dancing, hand kohl painting, a blaze of color, special décor and treats for everyone present, a banquet as only the Hilton Hotel can produce, and special guest Rock Star Bif Naked who will share her breast cancer journey with her story "Rock Your Cancer".

Canada's own beacon of hope Carole Ann Cole, originator of the Comfort Heart symbol worn by hundreds of thousands, will be one of the speakers at an upbeat closing ceremony.

"Body, Mind, Spirit" takes place in Toronto, October 29-31. No registrations will be available on site for this conference, which is expected to sell out to 400 participants. A special hotel conference rate of $129 per night at the downtown Toronto Hilton will only apply to a block of rooms being held until October 8.

Registration is now open through www.cbcn.ca

A wonderful book was published this week. Women Who Care features stories of women's health care experiences - as providers and as patients. The book was the brain-child of Dr. Nili Kaplan Myrth:

In her third year of medical training - discouraged by how little focus there was on caring - a young woman was faced with a decision: she could throw her hands up and quit or she could risk speaking up and work toward change. She decided to send out a call asking women to share their experiences with health care and caring. Her e-mail inbox immediately overflowed with stories from women across Canada Together, this amazing group of women wrote Women Who Care.