Bladder Cancer Sites & Blogs - September 13, 2008

Why do I write this blog about bladder cancer? Besides the fact that it helps me to organize my thoughts and data, provides an avenue for catharsis, and feeds my questionable need to be the center of attention, it also fills an information gap. If you read much about bladder cancer on the internet, you find frequently that it is the 4th most common cancer among men. So you would think that there is a lot of information shared out in the cyberspace about it. I dinked around the internet for several weeks looking for others in the same situation. The Bladder Cancer Web Cafe is a great store of information, and there are a lot of stories to read there. Many (if not most) of them are sad stories. And the information is clinical, unvarnished, and very hard to internalize - especially after the shock of diagnosis. Learning too much about what MIGHT happen is potentially nauseating business, and such detailed knowledge makes it very hard to focus on a positive outcome. Add to all this that the specific, practical details of how to deal with TURBT surgery and BCG immunotherapy are left to the imagination. I do not wish to impugn the BC Web Cafe. It's just that it was not what I needed early in the process. Now that I have internalized my condition and have dealt with it on both emotional and intellectual bases, I find the Web Cafe to be a highly useful information source. I even list it prominently in my link list found halfway down the column to the left. But it is far from the first place I would send folks.

In addition the Web Cafe's personal experiences and blogs are unattractively displayed, poorly organized, and highly variable in information content - plus they are full of gaps regarding practical details. I am not complaining, because the price is certainly right - absolutely free! I read some on Cancer Compass, but half the topics there are about bladder cancer in pets - a serious topic, but hardly in the same league as human disease. If you are politically minded, the Bladder Cancer Advocacy Network site is well organized and full of good basic information. The BCAN focuses on informing the public at large about Bladder Cancer, and advocating more research into it. The sad truth is that bladder cancer is a "boring" subject - not sexy enough for most aspiring doctors and researchers to specialize and pursue new research, and not well-known enough for most funding sources to care about. Sadly BCAN's founder passed away on June 29, 2008 after an eight year battle. His wife and friends continue to run the site and maintain the advocacy. Other sites (also included in my link list found halfway down the column to the left) from the American Cancer Society and National Cancer Institute provide summary information about many topics, but nothing very practical for day to day living.

So I looked for individual blogs regarding Bladder Cancer, and I found only two that were specific and hopeful. One is written by a fellow from Canada who spends his summers in Florida. He had the radical surgery (which I still hope to avoid) and is enjoying life and feeding his travel habit. He has only been blogging since December, 2007, though his struggle has been ongoing since July of 2000. He believes his cancer is in full remission, and there is a lot of interesting stuff on his blog, intermixed with advertisements and other items that are not to my taste. 

Another blog that my brother found right away is written by David Ferdinando, a fellow in Kent (near London) who posts under the name "A Dived Ref," which is a partial anagram of his name and an obscure reference to football (soccer in the US). His age is close to mine, and he is about two years into his battle - 19 months ahead of me. The British treatment protocol is slightly different from the American one for BCG, so he is now nearing the completion of his BCG treatments - the last one being scheduled for this upcoming Monday. The BCG is working for him, and he looks forward to a normal life and life-span in the future. He's even embarking on a new college-level series of courses to study history, a passion of his. So he's planning on being around a while longer! David's blog is arranged like a normal blog diary, so you will have to read most of it to get to know him and his situation. It's brutally honest and so it's a great way to understand the emotional ups and downs of a bladder cancer patient and a guy nearing the age of 50. It does take some time to get through, however.

So I found myself surfing all over the internet like a dog looking for a virtual bone. To borrow from Bono and U2,
"I have climbed highest mountain, I have run through the fields, Only to be with you, Only to be with you. I have run, I have crawled, I have scaled these city walls, These city walls, Only to be with you. But I still haven't found what I'm looking for..." You may wonder what it is that I'm looking for. It's simple, really. I'm looking for stories of men around my age who have had bladder cancer of my grade and stage and survived it for 10-30 years WITHOUT radical surgery. Stories about the ins and outs of the American medical treatment system, with details on evaluating the options objectively, listing the choices that best guarantee a positive outcome. Stories with real details about what one goes through and what one must actually do to prepare mentally and spiritually. Stories with practical, helpful, and useful information about what to do (and NOT do), where to go, what to buy, what to avoid, and what to expect. Stories that do not rely on standard medical advice in a vacuum. Stories that do not lean solely on self, doctors, systems, proven treatments, or some "mysterious healing force" for all their hope, but also recognize that God is real, He is in charge, and that He arranges everything for MY ultimate good. Stories that are well organized, easy to read and understand. And stories all told with compassion, accuracy, and humor.

One would hope that between all the porn sites, advertisements, gaming sites, wikipedias, propaganda, general bullshit, and information overload that permeates cyberspace that there would be dozens of stories as I have described above. Such is not the case. I believe there are three reasons for their absence. First, the internet is still pretty new, so 10, 20, 30 years ago when folks might have survived this cancer there was no blog vehicle to record it. Second, there have been improvements in medicine, surgical techniques, BCG maintenance schedules, and the like that have only been implemented in the last 3-10 years, so increased survival episodes have yet to play out and work their way into the bladder cancer statistics. And third, success stories are much less interesting than tragedies, and so authors of such stories are much less motivated to share them. So dear reader, if you have suffered through to the end of this post, you are pretty much stuck with my blog in my little corner of cyberspace for the time being. Hopefully others will follow, and everyone will benefit. Until then, be advised that all statements in this blog (unless otherwise attributed) are my own thoughts, and as such they are worth no more than you paid for them! Now back to some more U2:

I believe in the kingdom come
Then all the colors will bleed into one
Bleed into one
Well yes I'm still running
You broke the bonds and you
Loosed the chains
Carried the cross
Of my shame
Of my shame
You know I believe it


Kathiesbirds said...

Steve, while I am not a man and I don't have cancer I am glad you write your blog. Not only for your own inner healing but also for all the others out there who need to hear this stuff. I think one of the reasons you don't see many blogs on this subject is that many men are not as open and honest about a subject like this. Who wants to tell the world that they may be facing impotence or having their bladder removed? You've shown incredible courage and honesty in areas most men and women flee from. Keep up the good work. I hope you are still blogging years from now about all your travels with your wife and bladder cancer becomes a dim memory in your past.

Rob Truscott said...

so, almost 7 years later - I am reading this....
a 43 year old Bladder cancer patient myself - I also started trying to find information on the internet... I am just over 1 year into the situation.

I concur with your assessment- there still isn't much out there.

2 Cystoscopys
10 BCG treatments (yesterday was number 10)

I have started a blog, working on building it up - tried videos... but that hasn't been working well. I wasn't a blogger before, but my aviation career(now grounded) has meant that I am not working at all during this process, so I am considering a blog to occupy my time - in addition to a crapload of volunteer work.

will like read most of the posts as I go through your site, loving the commentary as I know exactly how it feels. Finding some differences in Canadian vs US protocols... but nothing huge.

Regina Martin said...

Steve, you are my hero! Thank you so much for taking the time to share your journey. I had my first TURBT on January 8th and start the BGC treatments in late February. I have spent quite a lot of time searching for information on the web, and your post has been so real and informative. I love your sense of humor and honesty. I feel I am much more ready to fight the battle that lies ahead. Sincerely, thank you! I wish you all the best.