Hi. I only just found this forum and wish I had found it early on in my treatment when I would have found it useful for myself. I had my PEG tube removed today and that feels like a closure at least for the time being. Almost 7 months on from the surgery I am feeling pretty fit and eating almost normally, albeit with a glass of water (or beer!) handy to help with the occasional mouthful that sticks.
Happy to share my own experiences here in the UK which I suspect are not so different from you guys over the big water.

If anyone is reading this shortly after a diagnosis of tongue cancer like mine, I hope you can keep a positive attitude towards the likelihood of a cure. Ok, I know its too early to know for sure if I am cured, but the treatment is over and life is a little fresher, girls a little prettier and the world a little more beautiful than it was before.
My best wishes to you all. Martin

Martin, welcome to OCF. Congrats on having the PEg removed!!! Thats a big accomplishment. Best wishes for continued improvements in your recovery.

It must be a relief to get that peg removed. Also good to see you are close to eating normally.
May you continue to recovery quickly.
From across the big water as well
Gabriele

Martin, welcome. Glad you're feeling chipper and eating. I'm always interested to read about folks like us continuing to drink alcohol, as my RO strongly recommended I not and I sure do miss it. Have your docs given you a different opinion?

Hope things continue to improve and improve!

From across the water, the land and the smog.

David2

Hello martin, you had almost the same treatment I had, except mine was on the right side, and i had 30 treatments. But i am also 7 months out of surgery!

Glad to hear you are doing so well now, and I hope for you that this is all you have to go through in this battle, and that in 4 years and 3 months you will have had clear scans and be "cured"!

Hi. Don't all doctors always tell you not to drink alcohol? The various leaflets about dry mouth recomend avoiding alcohol as it tends to dryness but the doctors haven't made a big thing of it. I am not going silly on it but feel that the occasional beer is so good for the way I feel about "the situation" that any negative effect is worth it. I'm not talking about any alcohol buzz here because I am not drinking enough to get there; just being able to enjoy the taste of, in my case, traditional cask condition beer.
By occasional, I am talking maybe once or twice a week have one drink. Maybe I am being silly but it doesn't feel like it.

Hi, thanks for your post. I see your hobbies inclue cooking. Has your taste recovered well? I am relieved that I seem to taste almost as weel as before albeit with some tastes that currently at least, I dont like. Citrus and similar are the main problem for me; the initial hit is fine but then the back of my tongue and throat react to the acidity. Wine also tastes yuk (probably just as well!) Very fizzy things are not good either.
Martin

mainly they say not to drink because drinking in itself can cause this, but if you aren't drinking that much then eh!! I honestly wish i could have one or two every now and then without pain. I am only 26 afterall!!
As for taste, it's all silly!! Everything that was slightly spicy is extremely spicy now, and even some stuff with tomatoes with no spicy in it tastes spicy, like pizza, spaghetti stuff like that. I also don't like pickles, mustard, ketchup anymore. I used to love ice cream, but now i only eat like a few bites, and then i lose the taste of it, and it just tastes like frozen milk, and also can't stand mint stuff as it's almost always too strong, oy. Also don't like a lot of things i used to love, but oh well, i am alive and getting ready to go back to work and school finally after being out of both for 7 months.
Oh and i can't tolerate pop or very bubbly things due to pain from bubbles, but not so much of a bad thing.
I look at it as kind of a loss, cuz it doesn't make my love for cooking/baking as fun anymore, but I am alive, and able to maintain my weight better now that I don't like all of those things anymore,

Martin, as for all doctors telling you not to drink-- well, in fact many these days recommend a glass of red wine every day as I'm sure you know. And wouldn't I love it.

My point was to suggest what Bethers passes on, namely that since alcohol is a causative agent of H&N cancers, doctors - mine included - often, maybe mostly advise us survivors to give it up. My RO allowed as I could have a glass of champagne on New Year's Eve. Last year I had two!

However to give opposing points their due I should say that the MO I visited a few times didn't seem to think that the occasional glass of vino was anything too terrible. So there's a divergence right there in my own treatment team. Of course, he and I also had a nice discussion about Cabernets, so he might be a bit biased. (not that this would cloud his medical opinion of course, but my impression is that my RO doesn't drink at all, so there you have it!)

Much as that beer you're drinking sounds lovely to me, as does any of the 50 or so bottles of red I still have down in the cellar awaiting being given away to friends, I decided to be good and cautious about this. My RO told me I was cured last year and I want to stay that way.

As much as I love drinking, I love breathing more.

Anywho, it's all a crap shoot, no? Enjoy your beer! (please have one for me, would you?)

As for taste... big question. Mine is gradually very gradually returned. But with half my tongue numb from surgery 20 months ago I'm only getting half the bang. Like Bethers, spicy stuff is still problematic. Used to love Mexican and Indian and hot Thai food and now I avoid Indian altogether and ask for mild sauce everywhere else. I've only recently begun to eat tomatoes, sparingly, and still can't tolerate vinegar. Unlike B I still love ice cream and all sweets. A miracle I'm not a diabetic. Even 19 months after treatment I'm still basically drinking one meal a day, Boost/Ensure with extras. I do it as much for the ease as the calories, but the fact that it's loaded with sugar probably helps.

Oh well.

Hang in there buddy!
David2