I took their survey which was put out through the Inspire.com website. I think the survey could have been improved....but I have to give them credit as they are the first to have every ASKED the questions they did..at least in my experience.
Not surprising to those of us in the trenches, they discovered that we do not feel acknowledged or understood by other cancer patients, particularly the newly diagnosed stage 0 - 2. Take a look at the synopsis the Metastatic Breast Cancer Network made of the report here:
It's hard being someone who is on long term chemo. I have been on treatment for the last three years.....and people drop off the face of the earth....partly because I can't get out, and partly, I think, because they are tired of me. When I am asked how long I m going to be on chemo and I respond, "I don't know," they are incredulous. They don't see me the days that I am bed bound because I am too fatigued to function. They figure that I can handle it....or that my family should be able to handle it...and yet I have issues that I am struggling to attend to....Yes, I can no longer garden like I did...but I want some help in destroying beds..but that's too hard.
Novartis is to be commended for this. Hopefully, it will make a difference. Their standard response is "You are not alone on this journey." I have to say, that it is a much more positive response than when I was first diagnosed.
Take a look here for more interesting information on the different responses from different countries.
The www.advancedbreastscancercommunity.org website is as full of information as the website name is long.
I'm looking forward to seeing what other companies will do, and what else Novartis will undertake.
In the meantime....I'm going to bed...again.