Hi Dizz,

Same here. I have always been really big on researching my own problems and yes I take my phone with me to his appointments and have notes galore in it, lol

Thank you. smile I'm trying... I have my days...

I think his reasoning is more of he just wants to get through this and then go back to eating steaks and burgers. lol Really though, we have talked about this. It was the same in the beginning, before the surgery while he was losing weight because his tongue was so swollen he had trouble eating, I tried forever to get him to let me make the nutribullets and try cooking softer foods for him. He kept trying to tell me that as soon as the surgery was over he could eat and gain back the weight. I kept telling him, It's not going to be that easy.... And finally just maybe a couple weeks before the surgery he agreed to try the nutribullets. This was AFTER he lost about 25 lbs. frown

So now, he knows that he has to keep the tube throughout the radiation treatments but I don't think he has accepted that it may be even longer than that and possibly, (but hopefully not, fingers crossed,) MUCH longer. frown I'm trying to prepare him for that, just in case and he says that if he hadn't lost all of his bottom teeth, he could eat. He "says" that his problem is that he can't chew food and that if he could chew it, he could swallow. (my reason for wanting the swallow test)

As for the toothpaste, I have made that very same suggestion. So far, he just isn't listening.. frown My birthday was this weekend and I have had an extremely emotional week. It's kinda funny, I can talk and argue and reason until I'm blue in the face and he will not listen or will argue with me but if he sees me cry, well, I don't think he knows how to handle that. So after seeing tears (I am certain that is what did it, lol) He promised me that he is going to start listening to me. lol

I'm not sure how long that will last but I reminded him today of his fluoride and his calorie intake and that he is supposed to start listening to me. He huffed and puffed a little but he said ok. smh So, we shall see :}

Well, I Said, It's kinda funny and I'm sort of laughing about it now, but it really isn't funny at all that I have to get pushed to that point to be able to get through to him. Smh… smirk

I did Not know that he is supposed to swallow the residue though. I'll tell him about that, I'm sure he'll be overly excited that he has a new thing to add to all the others. lol Seriously though, he is just a really simple man. He likes to keep things simple Finish one thing before beginning the next, etc. I know this is a lot for him. I really do hate it frown But again, I just want to prevent future problems for him, for us...

Oh, you said you have stitches in your bottom lip, I think, that since they removed ALL of his bottom teeth, that his tongue is now stitched to the floor of his mouth. He said it feels like it is. And he still doesn't have much movement with his tongue. Are you able to move yours yet or do you have any idea what to expect with that?

I have one more day off work this week so I may get a chance to reply again soon but yes please keep us posted with how you are doing. I will be able to read on breaks if nothing else.

Btw, his first week of treatments has gone pretty well. He has constant hiccups from one of his medicines and some dry mouth and sticky mucus but he says that is only if he has dairy products so I think we may have to drop the milkshake smirk or try making it a different way.

Best wishes,


Last edited by Pam42; 09-15-2019 08:07 PM.

Significant Other diagnosed in May: SCC Right Lateral Tongue , Right Floor of Mouth. Surgery July 30, 2019: Subtotal Glossectomy. Right Mandibulectomy, Extraction of All lower teeth. Removal of Right Lymph nodes; SCC in 4 of 23 Lymph Nodes, Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Radiation began 9/6/19 and chemo 9/11/19.
Finished treatment in October 2019.
Awaiting CT Scan.