I started this blog 610 days ago. I still stay connected to my personal lifesaver: the Tonsil Cancer Group on Google Groups. They are the only ones that I believed regarding treatments, expectations, recovery issues and specific solutions. Some are behind me and some are ahead of me in the treatment process, like a long line of friends holding onto each other trying to cross a nasty flash flood. We didn't see it coming and we won't all make it to the other side. Their sincere and truthful insights into the reality of Tonsil Cancer treatment and life after treatment made the bad times bearable. We are in different parts of the safety line stretched across a torrential river. We are obligated to each other now and obligated to help those behind us, as those ahead of us paid forward to help us.This is the gist of an email I sent to a new member of our Tonsil-Cancer group tonight. This is not a club that actively recruits new members, but sadly, our ranks grow every day.
"Check out my blog. It chronicles my personal health decline from treatment and the return to health chronologically for me. I go back and reread it from the beginning often. Although it has been about a year and a half, it seems eons ago. There have been some cases better and some worse than mine, but from what I have read, I am pretty much middle of the road for treatment. I am 62 now and was 60 when I was diagnosed, the same as you.
I thought I was a tough guy, played through the pain in high school and college, and previously didn't have much time for people that were sick or whiners. This treatment you are about to go through in the long term will save your life, but in the short term it will kick your butt...but it is worth it...you may doubt that at about day 60, but it does get so much better that most of us are far better off than when we were diagnosed (mostly a positive mental change).
You are about to receive the gift of a very different, unique life. After treatment you will never look at ordinary life in an ordinary way again. Every day will be a gift.
When I get to thinking that I am tough again, I re-read my blog from the lowest days and am humbled. You might consider a blog (easy and free: Google - blogger). It inspires those coming behind you, it reminds you of your very human side, and it is the most effective way to communicate with people that are too nervous or scared to call you and for when you can't talk to them [remember: they are radiating your throat].
Listen seriously to the advice about a feeding tube, get prepped for a lot of down time--this was music for me (my eyes got too blurry to read, and I couldn't speak for a while). Drink an ocean of water. Put half-liters in all the cars, all the rooms of the house, along with tissues and spit cups. Get ready to spend some serious time inside your own head (perhaps the scariest part of this experience).
This experience will make you stronger, you will appreciate life more, and you will make it. My diagnosis and treatment [3 chemo/33 rads] seems unreal and so far away. Focus on the future, look beyond today or tomorrow. When my kids would get car sick, I would tell them to not look at the curvy road, look at the horizon.
Put a positive spin on this: You get to go on an incredibly scary roller coaster ride. You get to sit in the front car. If you could back out of line, you would--but you can't. You will get scared, but you will be cool and look brave. Everyone around you will envy your braveness and bear your testimony for years to come.
This group will.
We will be your loudest cheerleaders, because we have EARNED the right to do so.
We also all somehow got in the wrong line for the scariest ride on earth and couldn't get out without getting in the front car and plunging off the edge. Everybody in this group doesn't kinda-sorta think they know what you are going through; WE KNOW EXACTLY WHAT YOU ARE GOING THROUGH. You will make it through. You will live many more years of a fabulous, quality life and eventually die of old age, a happy old man.
By the way, don't forget to throw your arms in the air when your ride shoots off the top and everyone else is screaming like crazy. You will look very cool."
These are my new friends. We have never met. I know them better in two years than most of the people in my life I have known for 40 years. We share the same can't-get-off-the-roller-coaster-ride-through-Hell, like a recurring Twilight Zone nightmare, and it won't ever come to a complete stop. You live in 3-month, 6-month, 12-month increments, waiting for the clean report from your next CTscan, each report buying you more months and inching you up the survival percentage chart. Every ache and pain, cough, sore throat isn't viewed the same ever again. (A friend of mine, a brain cancer survivor, won't run for exercise, because if he injures himself, he thinks he now has ankle cancer.)
When the group members speak of their pain, joy, fear, positive outlook...you know EXACTLY how they feel. It is a club one would never sign up for, but once you are in, it is like the Mafia: You are in for life. We didn't have the power to stay off the Cancer Ride, but we do have the power to live fully with the time granted us, whether it is two months or twenty years, as each new day truly is "Another Day in Paradise."
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