I have been awake since about 5am because I am so upset, annoyed and disheartened by an e-mail I received yesterday. I had requested that someone sign a petition for more funding for metastatic breast cancer. I interpreted her initial response as being that she could not sign because I had said that early stage breast cancer can be cured. Her concept is that the impression that breast cancer can be cured should never be given because those with early stage might progress to become metastatic.
Yesterday I also had a newsletter from Cancer Research UK http://supportus.cancerresearchuk.org/PageFiles/666448/cancer-research-uk-annual-newsletter-2012.pdf about what has been happening in the research they have funded in the last year. It states in this newsletter that sixty per cent of those diagnosed with breast cancer can expect to be alive in 20 years. As someone with metastatic breast cancer my chances of being alive 10 years after diagnosis is 2%. My chances of being alive 5 years after diagnosis is 20%, and my MBC diagnosis was 4 years and 8 months ago.
I really do wonder if it is worth trying to change things and get more funding is really worth it. If early stage breast cancer survivors can't see beyond their won fears of a progression to see that what we are trying to do is take away some of that fear with the development of more effective treatments then how can we expect 'outsiders' to be able to understand. Or maybe, because they are out side the breast cancer community they will be able to see more clearly that those who are dying are those with MBC, and those who have been diagnosed with ESBC stand a good chance of living a long time after their diagnosis and treatment. Of course this is not perfect, but sh*t this is cancer we are talking about, not influenza.
Right now I can't see that the Pink people will ever want to understand or acknowledge us full, because they are scared. It's a bit like when AIDS was first recognised and there was a general perception that you could contract the disease by touching someone with it. They do seem to think that contact with us will contaminate them. There are those ESBC survivors who support us which is so refreshing, but I feel that there aren't many of them.
There is not a single person with breast cancer who wants them to be in 'our gang' and to have a total understanding of what it is like to be told that your stage of cancer is now incurable. That is etched on my mind and is replayed, though not as much as it once was. I can remember the feeling that my entire being was cold and tingly, and that I was slowly being sucked down into a form of hell to be lost forever. We, of all people, don't want to take the hope and optimism from them, but if more was done to help us then maybe they would no longer live in as much fear.