Since my diagnosis Sept2/11, I've had a lot of time researching this disease and I cannot help but feel my future has been ripped off either way I look at it with treatment or not. Of course, without treatment, life would be short, not really a choice.
With treatment, I'm banking on eradication, future NEDs, then we have to contend with hearing problems, dental issues, and a multitude of other radiation side effects like carotid stenosis, changes in our throat, initially better if we're lucky, then possibly downhill as we regenerate. HBO treatments for extractions, etc, etc.
How do we deal with all this provoking anxiety? Ativan, antidepressants to cover it up? Enjoy each day like it's our last?
I was the provider of my family, and I need to go back to work sometime this year yet I could be facing a salvage neck dissection after my first scan in a couple of months... I still have a small residual nodule in my neck. I fear changes in my left shoulder and arm, then I can't work.
I'm still early as I finished chemorad Dec12/11 and I can't help but think I bought myself 1-5y if I'm lucky.
It's easy for people to say, "we have no idea when we will go", yes, true, but to a certain extent, us SCC survivors, all it takes is a recurrence, a met to a vital organ. I'm very disappointed we mostly had this one shot deal of cure with radiation plus or minus chemo and surgery.
Not really expecting answers, just venting, sorry, not a very uplifting post.
So hard to stay positive but I try, for the most part, being negative and giving up is not an option.