Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | sm...m,
Doctors....please....what they DON'T know about how we feel during and after Tx would fill the voids of space!!!
So many times I was led to believe by my doctors and nurses that something was wrong with me...that I wasn't handling the Tx very well...that my taste would return weeks after Tx ended...that my dry mouth wouldn't last very long...I could go on and on.
Unfortunately I didn't find this web site until 3 weeks after my Tx ended but I do remember my first post. I was telling everyone how bad I was and how I know my reaction to the Tx was unusal and I was asking for advice. The answers came pouring in that I was NORMAL and if anything was better than normal. I wanted to "kill" all those people that had made me feel deficient. I have since enlightened them so hopefully they don't make those errors again. Every chance I get I go to the ole radiation waiting room and talk to as many patients that want to and I make sure I write down this web address so they have it when they get home. I don't ever want anyone to go thru this Tx uninformed like my wife amd I did.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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