Tongue cancer - mine

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Crazy couple of weeks in the health department. One day my feeding (PEG) tube fell out. Usually you go to the ER they replace it and you are good to go for the next few months. Not this time, the tube fell out again and I developed watery diarrhea. They replaced the tube with a bigger one and ballon. Tube fell out again and now the diarrhea was bloody. It ended up with me having a colonoscopy and a complete new PEG as well as much bigger balloon. Colonoscopy showed colitis which I had in the early 90's , hemorrhoids, a few polyps. Biopsy s were taken on two areas.

In addition I my my regular appointment with my ENT next week for the throat cancer.

Man....you've been going through a lot!

But one good thing: despite all that has happened, you are still "somewhat verbal." I would say that this is excellent progress.

And your mind is definitely quite intact!

Congratulations on how you dealt with those therapies and health exams so far, I look up to you. Get well soon.

I have not posted in this thread in a long time so here is summery.
I had tongue replacement surgery in September 2015 and had to redo it in February 2016 when cancer came back. My ability talk and eat stopped. I was slowly recovering these abilities when I had ear shingles(Ramsey Hunt Syndrome) and associated facial paralysis this spring which set me back. I am now back to eating some pureed food and my talking is very mumbled but slowly coming improving.


I saw my surgeon yesterday, everything is clean. He said he did not expect me to be around at this point. So I am viewing every day as bonus time.

Good news. I celebrate it.

Good news on the clean PET scan, ASPartOfMe!

happy for you.

Thank you for the update. You are an important part of this community.

Since I have not posted in this thread in over a year just a quick rehash. I had half my tounge replaced then had to do it again around 3 years ago. All my teeth were removed. Been living on a diet of nutrition drinks and baby food.

Why I decided to write this update post is I got my dentures. Because of the after effects of the surgeries(smaller and misshaped mouth) I can only got upper dentures. It is suppised to make me look and eat better.

Rant/Vent
Having this thing in my mouth is a big adjustment. Adding autistic touch sensitivity, post surgeries sensitivities makes it that much harder. It is all experimentation for now. What adhesives to use, how to put the damn thing and the adhesives in an out etc. Fine motor issues are not a help. Right now I can’t eat with it. I will be returning to speech and swallow therapies hopefully that helps. Right now it stinks, but it does improve my looks.

I had a lung cancer scare that looks looks like it is a false alarm. Over the summer an anomaly appeared on a PET scan on my lung near my heart. As anybody who is a cancer survivor or knows someone who is understands constant fear of reoccurrence is just part of the deal especially if me you have already had a reoccurrence. Fortunatly on the last scan while still there it is greatly faded. So you are not getting rid of me and my unwoke opinions so fast.

I don't have dentures, but every time I have been given a cast, splint, or orthotic for my weak leg, the instructions were to start with only a brief exposure the first day and slowly work your way up to full time. Maybe this could help with your sensitivities.

Thank you for the health update. I hope the spot on your lungs continues to look better.