NOVARTIS Survey finds that Advanced/Metastatic Breast Cancer Patients Feel Alone

I have to hand it to NOVARTIS....the pharmaceutical company which makes, among other things, Afinator.  They've been working at really talking to Advanced/Metastatic breast cancer patients and are actually trying to help.  I know that since it is a pharmaceutical company it is sort of self serving.....but they don't have to do this.  As part of their new initiative, they have started a new website to support advanced/MBC patients and are producing documents and support materials, as well as working to provide opportunities for us to meet and to reach out to others through their "Count us, Know Us, Join Us" campaign.  You can read more about this on their new website,
http://www.advancedbreastcancercommunity.org/

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:

http://mbcnbuzz.wordpress.com/2013/05/22/survey-says-metastatic-breast-cancer-can-be-a-lonely-experience/

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.

http://www.advancedbreastcancercommunity.org/countus/2013-global-survey.html

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.

A Useful Website: Integrative Cancer Care

Several weeks ago, Rachelldon on the Inspire website posted her website which cited something called Integrative Cancer Care.  I am really grateful as I got LOTS out of it.  Not the least of which, there's some really cool headed discussion on using vitamins and supplements while you're on chemo, and much to my happiness, the best article on peripheral neuropathy I've read.

It was such a relief to me to find out that the fact that I often tripped over stuff was a direct result of the neuropathy.  I know this sounds odd, but I couldn't figure out why I tripped over the rolling stool in the library aisle.  I saw it. I knew it was there, and it was like it jumped in front of my foot...I had no idea my foot was anywhere near the stool....and this is a result of the neuropathy, not that I had suddenly become the biggest klutz in the world.

So, check this out....and look ALL around it.  It is one way cool site.  Rachell's website is called luponcancer.com (numeral 1, not an "L").  It's also great because it discusses a number of different types of cancer, and  things just in general.  It has sections for blood cancers, childhood cancers, breast, ovarian, colorectal, lung and prostate cancers as well as melanoma.  There's fun stuff....free stuff for cancer patients....and just good hard information.  I hope you enjoy it!