I apologize first of all for the belated post, having missed July 17 by about 3 weeks, and second of all for stealing most of the content from my fellow-survivor David Ferdinando, who lives near London in the U.K. Even though we are both aware of bladder cancer EVERY day, David is more aware of what is going on in the USA on an advocacy level than I have been. So I will catch up a bit here, and will also refer you to his excellent blog, My Bladder Cancer Journey. David's blog is much more journal-style, almost a stream of consciousness. It gives an outstanding picture of the emotional swings that come with battling cancer. Since mine is much more article based, organized as reflective of my nature, the combination of the two makes for an excellent image of how bladder cancer warriors live. And live we do, and we intend to continue. As I have stated often, attitude is a key element found in survivors of cancer of any type. Feeling depressed about your cancer? Kick yourself in the ass, get angry, whatever it takes to get back on top. If you are fighting cancer mentally every day, the body will respond to make its environment less friendly for the disease.
For those of you who are not aware, Bladder Cancer is the 5th most frequently-occurring cancer in the world. For men it is the 4th most "popular." If that is the case, why have most people never heard of it? Why don't you know more people that have it? In my case I was the first person I knew that ever had it. I think the answer is summarized well by CBS News correspondent Bob Schieffer in the video below. This spot aired at the end of the CBS Evening News with Katie Couric last night (August 5, 2010).
For those who don't care to watch the video (very well done, high resolution, and less than 3 minutes long) Bob says, "People don't like to talk about diseases that happen to you below the belt. It's embarrassing to talk about." And that is certainly true. I have also discovered that many cancer survivors prefer to keep their status a secret for personal reasons, and often to prevent limiting their careers. I decided early on that keeping secrets was not consistent with my nature, and that asking around and seeking information required some disclosure anyway. Between my brother's urging and the absence of internet details on what it really feels like to have bladder cancer or undergo BCG treatments, I decided to go even more public with this blog. And after discussing my private parts on an open forum for over two years now, it becomes much easier - perhaps to the embarrassment of my family and friends!
As for information on the internet, there is the well-known problem of both too much and not enough. Too much in general and not enough specifically addressing your question. I have tried to use post labels and key words in post titles to make it easier for search engines to find my posts that address specific issues, and it seems to be working. Using statistics from Sitemeter, I see that many have found posts that directly address their search queries using Google, Bing, Yahoo, and other search engines. Most visitors come from the USA, Canada, England, and Australia with a few from New Zealand, Portugal, Israel, and India. For the most part you all find what you are looking for, or at least my opinion about it, and are done after a couple of minutes and a few page views. I rarely get comments or emails, so I presume it must be working. I never get complaints, anyhow. If you do have a complaint, I guarantee to give you your money back, LOL. (Laughing out loud because my advice is free of charge)
As for web resources other than my own, I do have a post on Bladder Cancer Sites and Blogs. One of those, which is also listed in my sidebar to the left, is the Bladder Cancer Advocacy Network. When I originally researched them about 2 years ago, they were focused primarily on raising awareness to get a better shot at government and other funding for research. While it is still their main purpose, they have expanded their reach a bit and have regular newsletters and many helpful links on the latest research, clinical trials, news events, and other social aspects to connect bladder cancer warriors. And this year they sponsored a national Bladder Cancer Awareness Day, described here in a video from the Bladder Cancer Advocacy Network.
The organization level of the site and the organization have improved dramatically, and I now subscribe to their email updates and newsletters. So perhaps next year I won't miss the formal awareness day. I note the latest newsletter has an article about diet and cancer that mirrors my own findings. So the word is getting out that we do not have to be passive about this disease, and we can do things that may help the medical treatments be more successful in keeping cancer at bay. So happy watching, happy researching, and positive attitudes to you all!