Here in the UK only one of the breast cancer charities actually seems to do any campaigning for Metastatic Breast Cancer, and I have gone back to their web site and it just seems to be the same thing that they were doing two years ago. They have figured out that support for those with MBC is inadequate (wonder how much they spent on that study/survey). Heck, they are still trying to find out how many of us there are in the UK living with Metastatic disease, though they actually got the pilot scheme up and running last year; so I guess that is some sort of progress.
Why are they wasting time and resources finding out what anyone could already tell them. Finding out what anyone involved with breast cancer clinics could easily tell them. Exactly how many years is this going to drag on before there is anything actually done ... I don't think I will live to see it, that's for sure.
Evidently the pilot also found that four years since change was called for, 47% of the 598 patients identified were not recorded as having been referred to a breast or palliative care clinical nurse specialist or any other key worker following the diagnosis of their recurrence/metastasis.That's because there are virtually no breast clinical nurse specialists for Metastatic patients because all the support goes to those with Early Stage Breast Cancer, who of course, since they are considered curable, really need all the support rather than those of us with the incurable form of the disease who need none. That is obvious, isn't it?
Why is this? Because everyone has been brainwashed (not to mention Pinkwashed) into believing that breast cancer is a totally curable disease which is similar to having your appendix out. Nothing too serious and you get a free boob job thrown in if you are lucky. Breast Cancer is about pretty pale pink ribbons, pink wigs, pink t-shirts, pink feather boas and races, walks and wearing pink to work.
Isn't it?
Thanks for this post. It's time to jump start the pink machine with voices like yours!
ReplyDeleteThanks Elisabeth.
ReplyDeleteTHINK - don't Pink for profit!
I know for a fact that surveys and studies require a tremendous amount of money, having worked in that field for several years. It's disgusting how much money is wasted to find out the obvious (as you said.) So what to do? Keep speaking out. People like to think that if they don't pretty up breast cancer it looks like they're negative and rolling out the doormat for the grim reaper...quite the opposite...Knowledge is POWER. Time to put pressure on research for MBC so we can smack this crap down and LIVE!!
ReplyDeleteThanks for your words, Vicki...sharing them as we approach...gulp...Pink October.
Thanks Elle. I feel as though the whole Pink movement is focusing on what they are NOT doing to deal with breast cancer. Get people to focus on the Pink ribbons/t-shirts etc. and then no one will notice the lack of real progress.
DeleteI feel as though things are starting to change at a snail's pace, but for those of us with Mets we need the cheetah to join the race.