Friday 26 July 2013

Stage IV Breast Cancer is Not Severe and Prolonged

When I started out on this adventure with stage IV breast cancer my goal was to be a part of the <1% of patients that go through treatment and end up "cured".  Or, in the more realistic terms of a stage IV cancer patient end up on long term treatment and every 3 months my scans continue to show no evidence of disease, I live a really long time, and eventually die of non-breast cancer related causes.  That is when I would know I was "cured".

While I have been undergoing treatment I was first on short term disability and right now I am on long term disability.  As a part of the conditions to be on long term disability I was required to apply for CPP Disability.  I finally received the decision from CPP and it was decided that my disease is not both severe and prolonged and thus I have been denied.  Hmmmm.

Severe means that I have a mental or physical disability that regularly stops me from doing any type of work.
Prolonged means that my disability is likely to be long term and of indefinite duration, or is likely to result in death.

I am guessing that the denial is because I don't fit into the severe category at this point in time, but I am wondering if the government of Canada has been holding out on us.  Perhaps they have a cure for cancer and they haven't been sharing it. Perhaps stage IV breast cancer really is unlikely to result in death.  Wouldn't that be fantastic?!?

Really, the wording of the letter is so stupid, at least tell me that I fit into the prolonged category even if at this time my disability is not severe.
And now I have to appeal the decision.  Yippee.  If I don't appeal it, my long term disability company will assume that my appeal would have been accepted if I had sent it in and will cut my benefits by the amount CPP would have paid me.  Grr.
At least I am fortunate enough to have disability insurance even if involves a lot of paperwork and an endless supply of hoops I must jump through.

Ok, I have shaken that off......now onto a more fun topic, the Canadian Breast Cancer Foundation Run for the Cure. It's October 6th.  Save the date!

I have already had a few questions so I am sure there are more of you out there waiting for me to respond to a comment someone left a couple of posts ago about only 15% of the money raised from the run going to breast cancer.  Here goes.........

My first thought was "huh, I haven't heard that 15% quote in a while".  I am the first to admit that I was not a big supporter of a lot of cancer causes before I managed to get nailed by cancer myself in part because I felt that not enough money went to research (and I know a few people out there are nodding their heads in agreement, I know who you are:P).
I have to say that I have changed my tune in the last year, especially after experiencing my first Run for the Cure.

I think part of the reason the Canadian Breast Cancer Foundation and in particular the Run for the Cure has gotten such a bad rap is because the event really is not well named.  The problem is the "Run for Breast Cancer Education, Awareness, Easier Screening Access, Earlier Detection, New Treatments, and Support While Letting Breast Cancer Patients, their Family, and Friends Have a Day Where Thinking about Breast Cancer is Actually Kinda Fun" is not really a catchy name.
But really, that is what the run is all about, it is not just about research or just about finding a cure.

(And there is a bit of a backlash in the breast cancer community about the pink products.  It is sort of trendy to be anti pink, but that is another post for another day.  But I do stand by the fact that pink is not my favourite colour but that is for totally non breast cancer related reasons, just a simple ugh, pink.  Red is so much better.  Pink is just a washed out red, so boring.)

If the run wasn't fun do you really think it would be one of the largest one day fundraisers in Canada? Maybe it isn't money well spent but those little pink ribbon temporary tattoos are fun, they get people more involved, they get the kids involved.  All of the handouts, the nail files, the note pads, the pens, the bookmarks they cost money but they are about breast cancer awareness and education, and fun.  And breast cancer needs more fun.  After all, the Run for the Cure is a fun-draiser, right?  Haha, sorry, I walked right into that one.
And it is a day that breast cancer survivors can get together, share their stories, create hope for our newly diagnosed sisters, and few brothers out there, that they too can be a survivor.  Although, as a stage IV I have to admit I think of myself more as a coper than a survivor.  I think I have said this before and I will say it again, it hard to be a survivor when waiting for the other shoe to drop and hoping it never does drop.

Alright, I'm off the soapbox yet again.  Seems to be a popular place for me:-)

This year's team.........The Red Devils.

I am a co-captain this year and as a more active participant I did not want the team named after me but I was looking for something cancer related.  Red devil is the nickname for adriamycin, the red drug that was my first chemo drug and was so good at blasting cancer cells.
Abby, my fabulous co-captain, and I are aiming pretty high this year.  We are hoping for a larger team and the goal is to raise 10% more this year than last year.
There is talk of another bake sale.....I know that was pretty popular last year.  And hopefully I can steal someone from another team who is a great fundraiser with her Mugs for Jugs Pub Night.

In the meantime, start signing up!  And if you aren't in Vancouver please donate.  Here is the link to our team page: http://www.runforthecure.com/site/TR/RunfortheCureFY14/BCYukon?team_id=58347&pg=team&fr_id=1696

Thanks everyone in advance for all of your support!!!

4 comments:

  1. As I just wrote a blog post on my first cancerversary day which is today, I thought I would see how you are doing. Totally appreciated your commentary re my 15% post. I do agree with all that you say and maybe they could change the name but I guess it is the recognition after all these years that makes it successful. it was a fun day last year. I still would like to see more of the huge bucks go to research etc. but I guess that is wishful thinking.
    Good luck on the appeal too.

    :) Marian

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  2. Good luck with your appeal. My thoughts are with you x

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  3. maggie.danhakl@healthline.com31 July 2014 at 09:42

    Hello,

    I hope all is well. I wanted to let you know about this great resource Healthline has about breast cancer. The resource includes a virtual tour on understanding the progression of breast cancer, from where it starts to how it affects the body.

    You can see the guide here: http://www.healthline.com/breast-cancer/anatomy-animations#1/breast-cancer-where-it-starts

    I thought this would be a great resource for your site and wanted to see if you could include it on your page: http://nspip.blogspot.com/2013/07/stage-iv-breast-cancer-is-not-severe.html

    Please let me know if this would be possible. I’m happy to answer any questions as well.

    Thanks so much,
    Maggie Danhakl • Assistant Marketing Manager
    Healthline • The Power of Intelligent Health
    660 Third Street, San Francisco, CA 94107
    www.healthline.com | @Healthline | @HealthlineCorp

    About Us: corp.healthline.com

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