I touched on this before. Many of the web sites you go to have people who, necessarily, will be having a lot of trouble with their diagnosis and treatment and are looking for kindred souls and they share experiences etc. I think I am right in saying that it can only be a very few who do that. We are not all Internet users through and through, it would seem a waste of their time to look for information let alone to share it and I came to the conclusion that not too many people who had had Bladder Cancer would be on line.
As a sufferer, I was expecting to go online and find out what was wrong with me, what the chances were (yes you do) and see what other people had gone through. In reality you are looking for uplifting survivors stories. You don't often see them. Sure you can get the statistics and you can hear remarkable stories but generally these are people with far more aggressive or advanced Cancer than yourself. I think I said that it made me depressed rather than uplifted.
Well today that changed as at last I found someone with the same diagnosis as me, the same history of operations etc and who is about a year in front of me in terms of where the disease is at. They were possible slightly more advanced in how near they were to having their bladder removed, like less than a mm! The good news is that their BCG worked and now they are on maintenance therapy which is brilliant news. SO finally, a real person who has had this and bothered to put it on the web for all to see - that is more like it.
I wonder whether I need to one day work out the balance of whether you want to find uplifting stories, the reality (statistics) or something else. I can't think like that yet - perhaps later.
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