Your tips for recovery after 35 radiation treatments for tonsil cancer

@longboat1

Yes, I am very disappointed my taste has not returned to normal. I believe I should have been better informed. Had I known this good chance I would not have gone through the treatment. I really miss the full taste of coffee and fruits so difficult to taste much. So I agree I am alive but far from normal and I very much doubt that will change. I read the same studies that less radiation can cure just the same but too late now damage is done. My saliva has improved but not where was. The doctors fully know what is going to happen but provide generic responses just disgusted with the medical profession seems all they care about is money. I have perhaps 70 percent of my taste but cannot savor foods like I once did. I always loved to cook but now I have to always ask how a dish is did I over season or miss something.

@hrhwilliam

Yes, I am very disappointed my taste has not returned to normal. I believe I should have been better informed. Had I known this good chance I would not have gone through the treatment. I really miss the full taste of coffee and fruits so difficult to taste much. So I agree I am alive but far from normal and I very much doubt that will change.

@56tburd

es, I am very disappointed my taste has not returned to normal. I believe I should have been better informed. Had I known this good chance I would not have gone through the treatment. I really miss the full taste of coffee and fruits so difficult to taste much. So I agree I am alive but far from normal and I very much doubt that will change. I read the same studies that less radiation can cure just the same but too late now damage is done. My saliva has improved but not where was. The doctors fully know what is going to happen but provide generic responses just disgusted with the medical profession seems all they care about is money. I have perhaps 70 percent of my taste but cannot savor foods like I once did. I always loved to cook but now I have to always ask how a dish is did I over season or miss something. This forum lets me VENT which I really need to do I am so disappointed being robbed of my taste. I have discussed this with my medical team and get the same response to be patient and that is not working.

I am now 1 year past my radiation treatments. The oncologist and ENT are thrilled with my recovery. They are moving my throat scopes to every 2 months. I still have not regained all my taste. I do not have the taste I had before treatment. I would gauge my taste at 70-80 percent normal but sweets are still an issue and I am not fully savoring all foods. My extensive research tells me it will still be 1.5 to 2 years if at all to gain normal taste. I have talked this over with my oncologist and he said this was pretty much true. I feel so lied to about this which I have expressed I was told that I may experience loss of taste nothing was said to the degree I have experienced. I can eat and swallow but really miss true flavor from all foods and I fear that things will NEVER be normal again. I have been told improvement should continue but difficult to believe after all I have experienced. Has anyone ever regained their original taste and if so how long did it really take?

@dragonfire Unfortunately, unless your doctors or oncologists have actually had radiation to the head and neck, they will never really know what you are going through. Chances are you are one of less than three head and neck patients they have ever worked with, and likely the only one. Just ask your PC. You cannot expect them to know what you have gone through.
As my wife often says, "You don't get it until you get it." She has MS. Her doctors haven't much of a clue what her daily life is like. They will never understand MS unless they themselves have that dreaded illness. When she sits down on the floor of a retail store and I stand there waiting for her legs to start working again in few minutes, other shoppers are alarmed at my apparent callousness. My wife isn't upset. The shoppers are like your doctors, having no idea what is going on. We smile at each other. We wait. I get her back on her feet eventually.
You will get better. You have passed through the hard battle. You may have lost some things physically but you have gained strength mentally. You can swallow. You are not on a feeding tube. You do not need your face rebuilt. You have won.
Edited: I should add, I understand what you are going through. This recovery can be mental torture at times. The doctors didn't tell you everything but they probably told you so much information that it didn't all get absorbed or they didn't want to scare the heck out of you. Doctors usually want to put you into a positive frame of mind, knowing just how difficult this process is. Just getting through a complete radiation series is often a difficult thing for many patients, myself included. I don't know if I would ever do it again nor do I wish to face that question, knowing what I know, experiencing what I experienced. Having a hip replaced is a simple walk in the park, which I had surgery six months ago. "'Tis but a scratch." Cancer treatment? This is why we are here.

@dragonfire When I first went through this 20 years ago, they told me I wouldn't likely meet others going through the same thing due to its rarity. I've met quite a few people since then who have dealt with this disease, including my sister. She made it through the first round, but with significant deficits. When it returned, her options were limited. Immunotherapy didn't work after she chose not to lose her tongue. She passed away this past winter. I can't say how important these things you've lost are to you or if you would have chosen death over losing them, but ultimately, that is what we are faced with. I hope they find less destructive ways to treat this disease soon, but until then, our choices are limited. Good luck.