Nerve damage effecting tongue, muscle, swallowing.

I also had tonsil cancer in 2016. My cancer originated in my left tonsil and then spread to the lymph nodes on the left side of my neck. The cause was the HPV virsus. After the diagnosis I had all the lymph nodes on the left removed and a week later I had my tonsils removed and started the chemo and radiation. Nine years later I'm cancer free but strugling with eating / swallowing everyday. Like one comment I read, I'm always the last person at the table to finish eating. The last few years I've been struggling with nerve pain in my mouth that I assume is from the radiation. I'm getting laser treatments from my dentist once every month and these help but the nerve pain never really goes away. Good luck with your journey / battle.

I forgot to mention that due to scarring caused by radiation I cannot fully open my mouth. As an example, if I want to eat a hot dog I must slice it horizontally to fit it into my mouth. Club sandwiches can only be eaten with a knife and fork. Dental cleaning of my remaining teeth is challenging. And on another note, last night I again experienced the loss of control of my tongue while eating dinner. This has not happened in many months. I am always concerned, wondering if this is really a mini-stroke and my neurologist is wrong. Oh, the long-term fun of radiation!

Hi William
So true with your post on speech !!
I just had my 3rd of 10 sessions with a speech pathologist, and I really have to learn about speaking slowly. I am now trying to slow my conversational speech - and I do find it quite a bit of a 'hindrance'.
How long does it take you to get to speak slowly and yet feel 'norm' in conversation?
I just did a swallowing study and it has worsen quite a fair bit (compared to one that I did in 2020) - and suggested that I will have to blend my food and take nutritional drink supplement.
Do you have to blend your food? and if so, would a hand-held blender works? - for ease of convenience.
I reside in Toronto - and am glad that I have a great ENT support from PMCC.

Hi @josk
Slowing my speech was a big help. I find that people listen more intently that way as well.
Swallowing was just a matter of practice and knowing what works and what does not. I really don't have any issues with eating now but it has been years of work. I had my jaw rebuilt five years ago and was on a tube feed transitioning to a soft or liquid diet for a number of months but that is behind me also.
I am sorry you are not doing as well. I wish we all could get back to the old normal yet that is not to be. We take the wins where we can I guess.

Hi @josk, I also have to blend my food. I started with a handheld blender but switched to a larger one fairly quickly. My challenge with the handheld one was that I could not get enough into it (w/out making a mess). The larger blender allowed me to add more ingredients, such as spinach and avocado, to boost my shakes. Best of Luck!

Hi
if having to blend your food - how do you handle eating out in public?
For myself - I tend to isolate myself and do my best in not meeting up for meals or social gatherings (speech and swallowing issues, and hearing impairments). I find it more comfortable eating at home on my own (I live on my own) and if and when food gets stuck in my throat, I cough it out - but in public and in restaurants I am not able to do that.
I guess this is the reason why I do not blend my food yet - because very often I tend to spit out or cough out.
Ciao - happy wkend!!

Would soup or broth work? And /or perhaps a cup of coffee or other beverage. Friends will understand.

Hi, we have similar challenges. If I eat out, it is only with my wife, and I typically get soup or something I know I can eat without having to cough it up. I also can not move my head or talk when I eat, as I will choke. The main reason I blend my meals or drink protein shakes when at home is to maintain my weight. Weight maintenance has been a challenge since I had my treatments. When I travel, I bring a blender with me or purchase one locally. None of this is ideal or what I had envisioned as my "new normal," but it is better than the alternative. While that is easier said than done, I try to keep it in perspective...

Have a great weekend also!

True - able to handle perhaps 1/2 cup of coffee, and soup would have to be creamy and smooth - again, perhaps 1/2 bowl. And also have to be taken slowly and carefully so that they do not end up through my nose.
I usually end up with 1 or 2 of my friends who fully understands my situation.
Thanks!

Gotcha .. thanks for info.