Writing this stuff down has brought back some incredible memories. There is a "fog" element to the treatment and I sometimes wonder if I have mentally hidden some things or if they have always just been sitting there in the mist. This entry was supposed to be the start of treatment but as I was mentally writing it in the shower this morning I remembered a few things worth mentioning that occured about this time in the chronology.
If you or someone you know has recently been diagnosed and you are reading this, I would like to offer some advice based on my experience:
Number 1: Stay off the freaking internet. Yes, there is a ton of accurate information that is helpful. The problem is, if you have questions about your illness or your treatment the web is more than willing to answer them for you. It may not be the right answer..but an answer nonetheless. Seriously, take cancer out of the equation and on any random day get on a WebMD flow chart thingy and five minutes later you can determine you either have Ebola or you are pregnant. Once again, there IS helpful information there but if there are any gray areas or "what if's" you can fill them in with incorrect data. This is a HUGE deal if you (or the person you are helping) are in the middle of a cancer fight because a positive, fighting attitude is absolutely essential to success. Reading stuff that scares you or makes you feel like you can't make it is DANGEROUS.
Number 2: Okay, if you are gonna get on the internet anyway, read intelligently! In my case, the vast vast majority of people with base of the tongue SCC were tobacco users (smoked or chewed) or alcohol abusers. I was neither. This is very important. Before I learned lesson Number 1 above, I read blogs, message boards, etc. for hours and hours and what I read scared me to death (See Number 3 below). I would find out 6 weeks later that even though we had the same cancer, we had very little in common. All of the statistical data for my cancer were based on that (smokers/drinkers) pool of people. I am an anomoly. Unfortunately, the number of people like me (non-smoker/dipper, etc.) is growing but for now there is not a large enough pool for me to have found anyone writing specifically on what my experience was going to be like.
Number 3: Very few happy people talk or write about their experience. Ok, we are talking about cancer so happy was reaching a bit. What I am trying to say is there are varying levels of "suck". I read a blog from a poor guy with my bug who spoke of relentless, constant pain and he was writing post-treatment. That was the kind of thing I read that had an immediate impact on my psyche and, had my wife not figuratively slapped me around a bit, could have negatively impacted my fight. The thing is I truly believe that was the writer's experience; that is what he was going through. He wasn't making it up. And now I have an experience that is nothing like his. Whether it was my physical condition or that I didn't have the behavioural stuff, I was never the sickest guy in the room. Oh, it did suck but most of the time it just wasn't that high on the suck meter.
Bottom line, if you are reading that stuff for yourself or a loved one keep in mind that not everyone suffers like the worst suffering you read about. Not everyone will have an "easy" go of it like I did. But some will.
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