Is This On…?

I started my little publication, Deludia, in the year 2000. When I first started writing in it, I was spending the vast majority of my time complaining about the lies of television commercials and media gaffes masquerading as news. I spent hours spreading my vitriol as a kind of psychic relief, a pressure release for all of the bile raised to my throat from watching TV.  There was really no schedule to my posting, I just let loose with the spew of what I felt was wrong when the inclination struck me to do so.  I didn’t have a following of any sort, I was more posting because I felt like it and my readers were the hapless lot who happened to find me on search engines as they looked for something else. But that was okay, for all practical purposes I was merely talking to myself. But all of that changed in February of 2008 when the doctors told me I had cancer and was not going to survive much past six more short months.

This blog then became my chronicle of my remaining days, telling chapter and verse of what I experienced, what I thought about it all, and what I was learning about the illness and myself as the days went by. It was my hope that others might read and learn a little of what it was really like. I thought that everything I had read in the mainstream was inspirational hogwash, geared to pressure people into this or that treatment, or to hawk the 99% of supplements out there that don’t do jack for cancer victims in spite of faked evidence to the contrary.  Obviously I didn’t die on the schedule given me by the doctors, but I expected that I was going to kick the bucket as predicted, just not within the offered prognosis.  Now that I have managed to exist so far past my expiration date, and discovered that the majority of my physical discomforts stopped with the cessation of treatment, I’ve decided that I may just go on and on towards a more ‘normal’ demise some years from now.

I discovered that treatment isn’t always the correct course, but that we are stuck in the conundrum of not being able to know whether treatment is or isn’t advisable until after it’s tried.  I know as fact that there are three categories for people in treatment: a third will be helped, a third will take some small benefit, and a third of us will get no benefit at all. Regardless of the changes in treatment approach, the numbers hold. It is also fact that none of us can know which third we will find ourselves in until we take up membership in one of the three categories.  It is also pretty much fact that around 15% of us, plus or minus a smidge, will die early as a result of our illness, regardless of treatment.  I have also learned some ways to reduce the discomforts of peripheral neuropathy temporarily, but the only real cure is to stop taking the toxins aimed at killing the monoclonal cells ruining the bone marrow neighborhood. This is the sum total of the many, many keystrokes I have donated to the cause.

But as I related the various things I have learned, and gave the public a pretty much uncensored look into how my life, my family and my whole world was affected, I got very little feedback. A scant few have ever bothered to make comments on my writings. Perhaps that’s because I’m not exactly the bearer of great news for the most part. I have been dubbed a negative rogue within the loose family of cancer related Internet media because I dislike the pie in the sky articles that form the vast majority of what people find when they seek information about Multiple Myeloma. Like the commercials I used to kick to the curb in Deludia, a lot of what’s written is simply bad information. On the whole, the feedback I get is mostly from those authors and sources, who dislike my contradiction of their writings. However, the relative few who have given me feedback as patients or care givers has been wholly positive, and I admit I bask in the light of their thanks. The people who have written to me all unanimously tell me that I have helped them to understand elements of the illness their doctors and all the stuff they read fails to address.

Over the years of my slaving away in my desperate attempt to turn on the lights and scurry away the cockroaches populating our information sources I have tried in many ways to solicit more comments, hoping to get clues and direction about what subject readers want me to discuss. Not like I’m some expert with all the answers. I doubt if such a source exists anywhere. But I am more than willing to tell what I know and what I believe with little reservation. There is a whale of a lot more to cancer than treatment discussions. There are matters like how family is affected, what attitudes I have and why I have them on many subjects that are somehow changed through the involvement of cancer. To talk about the frustrations and views that only someone in the forefront of the illness feels and where we could use support and assistance the most, and what form it should take.

But no matter, my requests for feedback are greeted with a nighttime silence, the sound of crickets chirping in the darkness. I have put in the links and buttons that allow people, with just a single click, to grunt approval or disapproval, or to pass an article on to others. So far, no one has ever bothered to exert the effort of that single click for Facebook, Twitter, Google+ or the other social networks. I installed the IntenseDebate comment system, so that people could comment without worry of getting on spam lists (and to keep my comment section from filling up with Viagra ads) so that people could comment to me on what I have said. Silence.

If ever there was a time for communicating ans sharing information, this is it. All of us are facing a cancer. In some of us it takes its form in our bodies while for others the cancer is eating away at society. Those of us who are ill have to fight with two threats. And in the midst of it all is the flood of misinformation and disinformation and it makes it difficult to know what’s best to do. So we put our shoulders to the wheel and try our best to keep body and mind intact, kind of unable to know where best to put our energies. What tools do we have and how do we use them? It’s difficult to know.

What I do know is that it is always best to question the apparent course we should take, no matter the endeavor. Challenge those things we are told and wring them out to find the truth of the topic, whatever it is. Whether it is clicking one of my little links or questioning the validity of what we hear on any subject, communication, two way communication is necessary. That’s why I built a blog rather than a website that speaks with no reader recourse. All of us are dealing with tough times, and it sure looks like they’re going to get tougher. That makes it more important than ever for us to have discussions with one another, and to try to ferret the facts from the fictions so predominant in the floods of information washing over us.