Maybe to manage his pain and to get some food into him he should be in the hospital. People who are in pain, depressed and not eating properly... well it's a downward spiral. Ideally they should put him in give him an NG tube and IV (for pain meds and fluid). Otherwise he'll be in brutal shape for the surgery and healing will be that much harder. Also if he is in the hospital if something happens (like a cancellation) - he's ready to go - they'll take him. JMHO best of luck

Now you have explained this, the wait seems less unreasonable. Cheryl suggests hospital. If that's not an option you could try protein-enriched milk-shakes and smoothies. Might be best not to try chewing if the tongue is aggravated each time?

Anyway, you two have me cheering you on and hoping for the best from way down here in New Zealand.

I do not think he is in hospitilization shape. He gets up at 5:30 a.m. for work and gets home around 5. That is when his energy level is zapped. He has a healthy appitite and he eats a ton when he eats. It is just harder for him to eat. No breads, but pasta, rice and anything else is still ok. I think a lot has to do more with the ulcer bleeding and sore. He talks all day, so it is pretty sore by the night. He is naturally skinny as it is, so any weight loss is noticable. He is really good about not talking too much pain meds during the day, but at night he takes the "normal" dose and it knocks him out.

He said it is a dull constant pain, but after eating and irritated and talking all day it goes way up.

I am going to call the doctors office tomorrow and ask to speak to his nurse that is assigned to him. I will tell him his overall health and concerns and see what they say. The Dr did warn us this would happen and she fully expected it. Not that is really reasuring, but I have to at leased let her know a update on him.

You are doing so well, Danielle. If he's working those long hours he would be tired anyway! I remember feeling okay before my tongue surgery in 2009 and working very hard for a month or less (?) to get everything in order before my treatment. I had to hand over to my replacement so everything had to be better than usual. Then there WAS a cancellation and I was called in two weeks earlier so I had only a few days to tie up loose ends. I don't know if exhaustion affected me or not but I wasn't a very happy patient in the first 8 -10 days after that surgery. This time (last year) I was retired so had a more relaxed build up to the operation. Although I was four years older (67) I actually tolerated it better. Might have been because I had the painkiller Fentanyl rather than morphine which I react badly too. But I wonder if I was better prepared for last year's surgery than I was in 2009. Make him take a couple of days off before surgery or at least work shorter hours!!!!

Okay it sounded more dire at first. I was the same - my tongue hurt like a BITCH just before I went in. It was an open wound b that point and burned like hell. I too was working and as you said by the end of the day it was just painful. I'm not a taker of meds so I suffered through it. Try feeding him creamy non acidic foods that require minimal chewing, soups, chowders, scrambled eggs, cheesy cauliflower etc... Low salt - nothing spicy. Hugs.

I am sorry to hear about your BF situation, but you are being a wonderful caregiver! My husband has really worked hard to help me out and it was so invaluable - you have no idea!! He still keeps on me to make sure I am doing what I need to and helps me with my speech therapy and arm strengthening (from flap) - which I really need and appreciate!

I had a partial glossectomy in August. My tumor also grew quite rapidly between my diagnosis and surgery and I too had to wait a while (over a month)- something that was quite difficult for us to do. But he is going to one of the top places, and you have to rest assured that they know what they are doing and that he can handle the wait. Like your BF, I was also in a lot of pain and had trouble talking, eating, and was quite fatigued. I found that eating flavored, high calorie and protein yogurts helped (like Greek yogurt and one brand I particularly like now is Liberte even if it has sugar, but weight is no longer an issue for me and this is my one sugar splurge). My husband also confided in me after my recovery that my breath hadn't smelled good for a while so this may be normal.

Someone else suggested aloe vera juice - if your BF is on stronger pain meds then he is likely also experiencing constipation from it and the aloe helped me a little. I didn't like the medicine for constipation so I used alternative methods.

As others have suggested whey protein is good. During my recovery, adding this to shakes helped me keep up my calorie and protein counts (and tasted delicious too). It took me some time to drink them, but by adding these in with the usual foods (pudding, yogurt, soup, eggs) I was able to get 2000 calories a day with 100 grams of protein. He should be sure to try for 1 gram of protein per pound of body weight to help with healing and maintaining body weight. Shakes also let me add veggies, fruit, and other healthy foods to my diet. Mashed potatoes and homemade gravy (store bought is so salty and has so many bad additives) was a favorite of mine at that time also. Glutamine and Arginine help with recovery so he should try and add those in to his shakes (you can buy them online in non-pill form). I found that soft foods that had a grainy texture were hard to eat during recovery (like oatmeal, cream of wheat, lumpy mashed potatoes, mashed beans were harder than just baked beans).

As far as an anti-cancer diet goes - Well, post surgery my tastes have completely changed. Prior to my surgery some food additives made my tongue numb - now I can't handle most of them at all - so most of my food is fresh and not premade. I used to have a major sweet tooth and now most foods that aren't healthy for me no longer taste good at all - Halloween was a shock for me . I limit my coffee intake and now mostly have green or black teas. I get most of my protein from plants and fish. I eat a lot of red, yellow, and orange veggies, mushrooms, and dark leafy greens. I also eat more avocado, whole grains, flax seeds, berries, and nuts, and garlic/onion. All in all it is a really healthy diet and I'm finding tons of new recipes and flavors that I like each week.

I wish both of you the best. Be strong and give it your all every step of the way! I know it is a tough and scary time but try and stay as positive as possible. We are all rooting for you guys and anytime you need to talk please feel free to PM me.

I know I keep saying it, but I want to thank everyone for their support. Sorry not to message back sooner. We had a lovely case of the flu this weekend - I know and perfect timing, since he goes in on Monday to meet with the tumor board and have all his pre-surgical tests done. He started not feeling well Saturday night and by Sunday had a fever and hot/cold sweats. I urged him to go to a prompt care, but having bad past experiences he did not. Luckely yesterday he started to feel better and today looks to be on the mend with no fever, and appitite back.

I was concerned it was not the flu and a possible infection since his tongue is bleeding. However, I ended up sick too with the same temp hot/cold. I had a little melt down with all of this. Feeling sick and trying to take care of someone else is a lot and he already feels crappy, so this did not help the attitude.

Anyways, I hope this does not push his surgery back....that would be devistating. I myself went from still feeling crappy yesterday to up and about at work today. So, I am hoping this means he is on the mend. And that by Monday he is back to full speed and is feeling as best he can.

The aloe juice is a great suggestioin - he is having issues with going to the bathroom and has been taking meds to help but anything extra is helpful.

I have a conversation the other night with a friend who happens to be a dentist and trama surgeon in the army. I told him everything that is going on and he said he had full confidence that this surgery would be a good option and to trust his surgeon when she says she can give him a good quality of life with speech and swallowing therapy. He asked if I have done a lot of research on his diagnosis - I said yes, and knowing me he said - do not get to much wrapped up in the statistics (they are scary) that everyone is their own case and the surgeon would not be doing this surgery if she did not think it could be his best option and a sucess. It really put my mind at easy.


Thankfully his mother has come to stay and help with his care both now and post opp. I really needed some help because I will still have to work and he will need someone to be with him during the day. As for nights I intend on staying with him while he is in the hospital. I think it is important to always have a advocate with him.

His current state is that he want to get this over with and get going. He is scared of this surgery but he knows this is what he has to do.

I hope to have a relaxing weekend and get him to the best physical state as possible by his surgery ( I do not see this has being hard now that he is feeling better)


Thank you all again. I need teh encouragment at times, because I live far away from my close friends and mother. Danielle

I am so sorry to hear that you have both been sick, but am glad that it sounds like you are both starting to feel better.

More on the constipation. The medicine tends to really suck any hydration out of you. So staying as hydrated as possible helps, but with the soreness of the tongue it begins to get tough. Right before my surgery I was in so much pain by the evenings I didn't want to talk, eat, or drink anymore. I found that a glass of prune juice with an ounce of aloe vera in it helped me. I also used enema's but by the end I needed more and looked for advice on this forum. Thankfully I got advice that worked best for me, but isn't as pleasant to have to do - buy him some plastic gloves (like used at doctor's office) and then he can manually help relieve himself. It wasn't fun to do, but by the end it was so relieving I didn't care anymore - and it meant I didn't have to take nasty medicine which didn't even work for me. Once in the hospital I had trouble again and wasn't able to go (even though they gave me tons of medicine for constipation) until I returned home and used this method again.

It is nice to hear that you are getting some relief from responsibilities with his mother being around. My husband's mother is an RN and was a caregiver to my husband's father when he had tongue cancer. She was able to come stay with him while I was in the hospital and help him prepare our house for my return (cleaning and buying a few new nice things) - it was a huge help and meant so much to both of us. Some tips that were very helpful for when I returned home was that she replaced our bathroom hand towel with paper towels to help keep germs down, bought us disposable Windex wipes so we could easily sanitize surfaces each day (counters, handles, light switches), and hand sanitizer to make sure I could easily keep my hands clean (especially since we have a cat so anytime I petted her I would use it) as I was home alone a lot. I was never one to use hand sanitizer, but with it being cold and flu season I now use it religiously especially when I have to go out in public.

Enjoy your weekend and hugs to you both.

I use Living Fuel and add almond butter, coconut, fruit etc.
It is a fabulous meal replacement drink.
I have been using the product for the past 9 years and receive nothing but good health from the manufacturer.

Hi all - I will continue to post on my other thread in the Currently in Treatment section.