Finished treatment Dec12/11, how I'm doing now...

I was never given a stage but I think it would be T1N2M0. Primary in L tonsil, L lymph node involvement, HPV+. L tonsillectomy Sept21/11. IMRT 35 and Cisplatin week 1,4,7 mid Oct through to Dec12/11.

Looking back, treatment was a blur. I had a followup appt with my RO Jan13/12. My stomach tube was removed, hadn't used it for 2 weeks.
I am off the liquid supplements, I eat a variety of foods, most of my meals are "wet". If I try to eat dry stuff, it has to be chased with fluids. My throat hurts very little after I eat now. I'm guessing my taste is 50%. Weighed myself yesterday and I am only 4 lb under before I was diagnosed. I never thought the mucus and stuffy runny nose would go away, it's all gone. I posted about a white pinhead nodule on my tonsil bed, it's gone. I posted about a white sore on the left side of my tongue, radiation side, it's healed pink. I luckily escaped other mouth sores. I was also worried about coughing up blood tinged mucus and that subsided (I read that was common from rad'd throat tissue). I had some occasional tingling in my right hand, that seems to be rare now.

My issues are dry mouth, slight hearing loss, I fatigue easy but getting better every week. Hair on the lower back of my head is growing back slow. If I let my hair grow, it looks like a bad hair cut so I maintain a military cut where it's shaved on the sides and back.
All in all, my "new" normal at this point is pretty good.

I still have a small sliver where my L lymph node was and my RO firmly believes it's scar tissue. I get a CT in early Mar/12, then another one 3 months later to decide neck dissection. I wish PETs were covered in Canada, they're not, too many false positives. I may go to Buffalo and pay for one 6 months out.

I frequent other forums and there have been a few survivors where their PETs are NED and their small residual node(s) are scar tissue, calcification. I used to wonder if my Canadian treatment was enough, I read about others getting induction chemo, Erbitux, different agents. I was pleased to read that the founder of OCF, a 12y tonsil cancer survivor, believes in the tried and true rads+Cisplatin combo over anything new. He is not a doc, he refers to himself as a science geek. I see that he is well respected and well versed in his research. He also refers to one of the most reputable articles in the NEJM which concludes HPV+, non-smoker tonsil 5y survival at 80%. Brings me comfort and hope.

I still get thoughts of "why me", worrying about recurrence, dental issues in the future, uncertainty about my mortality, my family and seeing my 2 little girls grow up. I get depressed at times and I think I'm going to start some counselling. As I feel closer to my previous normal and adjusting to my new normal, those thoughts and sometimes feeling down are going away, especially as I get out of the house more and do normal things like grocery shop with my family, attend my kids' activities, and get together with friends. I am starting to enjoy and value each day with my family. I will probably go back to work in a couple of months and that will add another sense of normality.

I know scanxiety will always be with me. I have read on OCF if there is a recurrence, 80% are within the first year, 15% in the 2nd year. From what I understand, HPV+ SCC have low recurrence rates but there are no guarantees. If I get past 2 years I will be elated. For now, I live for today.

I would like to add this site has helped me tremendously. I can't thank all of you enough for the wonderful support.

Best wishes to all.
Roger