Hi All,

I have the following lingering effects, 7 months post IMRT, 10 months post op:

Physical:

--Very very dry mouth while sleeping. Need water to hydrate at night.
--Difficult to swallow meats--need to wash down with water. Pork and steak are the worst.
--Saliva is generally good, but nothing like the old days.
--Taste comes and goes--fruits taste weird, especially apples (which I used to love). In general, it is about 60% back, I would guess.
--No sweat glands on my neck.
--Tingly sensation in butt/legs when lower chin to chest.
--Neck is tight, sore when arising in morning, sore when I stretch it.
--Numb neck, feeling is back to maybe 30%.
--Skin texture is different on treated side...it's thinner and less elastic...looks like prematurely aged. Also in chin area. Skin has a permanent tan also.
--No neck whiskers at all.
--Hair on back of head is returning, but is different from other hair (soft and whispy).
--Neck scar looks pretty good, as the skilled surgeon cut in a natural wrinkle.
--Seems like my gums are looser.
--Seems like my hearing has been affected--I'm going to get this checked out.

All in all, not too bad and manageable. I'm thankful that I have plenty of energy and am able to do all of the things I used to be able to do physically. I guess the bad part is that basically my tissue DNA has been damaged in the treated areas and there's not much you can do except live with it--it's not going away anytime soon.

Mentally:

Generally, if I don't think about it, I'm fine. But, there's always the 3 month followups that force me to revisit the whole nightmare again. This is equivalent to watching a car wreck in which you were injured on video, again an again, when all you want to do is move on. That's the tough part. But the toughest is thinking about the possibility of another lump in my neck, another surgery, and God forbid more radiation (if that's even possible). And the need to do google searches for "tonsil cancer recurrence" and rereading the same articles and analyzing the statistics again and again.

I'm a Stage IV survivor, with a good prognosis. My primary tumor was small (T1), I had only one affected node (greater that 3 cm), and very importantly, no extracapsular spread (ECS) which spared me chemotherapy. All prognostic indicators for me are up. But I can't escape that I was a Stage IV...i.e. an advanced case due to the spread to the lymph nodes. Obviously, this is something I need to work out within myself and be confident in the treament I received as a...can I use this word...CURE. And CURE means that the evil sneaky diabolical thief in the night SCCA stays away forever.

So, I'm doing what I should do with my new life...so much for tipping a few back with the boys with a Crown Royal chaser. Those days are gone forever. Now, it's keeping healthy and strong for my family...I guess that's not such a bad option either.

My best to all of the other brave souls who share their minds and hearts on this board.

Regards,

Oscar