According to google.com, 110,000 people will do a search for the word carcinoid this month. Another 40,000 will search for neuroendocrine cancer or NET cancer.
When I first typed in carcinoid syndrome and neuroendocrine cancer a little less than two years ago I read everything that was on the web in less than an hour. Most of it was written in thick medical jargon I had too really wrestle with to make sense of. Today, Google sports over 50 pages of information aimed at a wide variety of audiences–from medical students to researchers to doctors to patients to investors and back again.
My problem 23 months ago was too little information. Today, someone coming to the subject likely feels overwhelmed by the stacks of articles and videos available.
I used to try to explain to my students about the rapid pace in the growth of new knowledge. I talked about how little life changed for thousands of years because the pace at which knowledge of the universe increased was so slow. But with the coming of the industrial revolution, everything changed. Both my grandfathers were born in the decade before 1900. There were no radios, no airplanes, no televisions, and, at least where they were living, no cars, trucks or tractors. Both grew up on farms. Nearly everyone did then.
They would both live to see men walk on the moon, the coming of the computer age, electric lights and telephones in every house. My grandmothers lived to see the Internet and the beginnings of the first space station.
I am 60. I was there for the first personal computers–devices so far from what I am typing on right now that it is hard to imagine. I have seen the first heart transplant, the first artificial heart. I have seen many forms of cancer move from death sentence to survival to living with cancer. Had I not lived with it and adapted to it, the changes I have seen would have overwhelmed me. I wonder how I would feel coming to all that information on NET today if I were encountering it for the first time. With the added weight of Jane’s evolving illness, would I have been able to make sense of all that is there?
One of my goals for this website originally was to try to create a place where people new to the disease could find information about the disease without having to wade through Google and Yahoo and Ask and Bing‘s endless reams of seemingly randomly arranged information. The explosion of information that has happened in recent months has not made that task particularly easy–and I am afraid I have not done as good a job of that as I would have liked. Someone once described education reform as building a bicycle while you are trying to ride it. Building Walking with Jane has often felt like a similar task. I keep expecting things to get easier but every day still brings a mountain of new things I have to learn before I can proceed with even the things I learned yesterday.
But I am going to go back to that particular piece of the original vision. Someone needs to be reading these articles and trying to bring more order to them than the “this-had-a-lot-of-readers-and-links” logic of the search engines.
