My mother had surgery in February and has very little feeling on the side of her mouth where the surgery was done. She had radiation before that so her mouth is in pretty sad shape. She has a problem with drooling and it has caused irritation around the outside of her mouth. I have noticed it has really gotten bad in the last couple of weeks. The drooling isn't as bad as she thinks, but she wipes her mouth all the time to make sure there is nothing there. Has anyone encountered this problem and is there some kind of cream or medicine that would help with this problem. She has used vaseline, but it doesn't seem to help very much. I think she needs something that will stay on through all the wiping.

Thanks

I too experienced the drooling problem. I don't know of any type of cream to recommend. My drooling has gotten better which in my case is probably due to the radiation drying up the saliva. After my surgery but before the radiation the drooling was especially bad when I slept, I used to wake up with my ear in a puddle. The drooling does improve after some time and possibly some of the feeling may come back.

Vb.......I really didn't have any drooling problems but that is probably because I don't have a drop of saliva in my mouth! Anyway, I was thinking that maybe Aloe vera might be something soothing to put on the irritation on the outside of your Mom's mouth. I use the Aloe vera plant on lots of scrapes, bites, irritations and it works well for me. Aloe vera from the stem of a plant is quite sticky but I don't know if it would remain on your Mom's skin with all the wiping. It's worth a try. Good luck ! SIncerely, Donna

The drooling isn't from saliva. Like you it's pretty much of a desert inside of her mouth. She has a hard time swallowing what with the jawbone, floor of her mouth and tongue all removed, rebuilt and otherwise messed with. So when she thinks everything is swallowed back out it comes and she starts wiping away. Since she can't feel anything she keeps wiping all the time to make sure. Because of the major eating problems she has chosen not to remove her feeding tube and is still taking two cans of ENSURE Plus everday, but continues to lose weight. I will tell her to try the Aloe vera, and hope she mentions it to her doctor next week when she is getting her monthly check up and maybe he can suggest something too.
Thanks for the suggestions.

Is she eating in addition to the two cans of ensure plus? If not, she needs to try to drink more than that. (I'm a fine one to talk, I had a hard time eating much even with the feeding tube and lost weight for a long time).

I'm not current for people of her age, but for the average 50 year old, you need to put down a minimum of 1500 calories a day to tread water weight and energy wise. Anything less and you are not going to get the proper nutrition, and you will lose weight. The average can of Ensure is between 200 and 250 calories. You need to be in the 6-8 cans a day level to just get by. Supplemented by my favorite...ice cold slippery peach slices out of the can in heavy syrup, you can get the total calories up there. They slip down the old throat without an issue, and cool the sores off on the way. Some combination of all this needs to get the total caloric intake up to the proper levels.

Thanks for the concern, she is eating but with a lot of difficulty and frustration. She uses the ENSURE as a supplement, because she is still losing weight. She won't eat with anyone else around because she is embarassed, but she eats apple sauce, baby food and when she eats any kind of "normal food" she purees it, but she doesn't seem to get much enjoyment out of it. She says that things she never used to care about like potato chips she now would sell her soul for, but she doesn't even attempt anything that hasn't been pureed and otherwise rendered unrecognizable. Hopefully over time it will get a little better, but she struggles on in pretty good spirits.

VB, Just a few more suggestions for regular food and trying to get it down. Mashed potatoes with lots of gravey worked. Also cream of wheat with milk, oatmeal with milk, puddings and of course the old standby milk shake. As I got a little better I added creamed soups made with milk and these little cheese cakes that you can buy. You can also keep her calorie count up by having her sip on juices during the day. I did not have RAD, but still had a really hard time eating for quite awhile. I too had the bottom of my mouth rebuilt and part of my tongue removed. She has to realize that eating is going to be a slow process. I used to tell my husband that by the time I got done my breakfast, it was time to make my lunch. Hope this helps a little. Take care. Anne.

You mentioned that she is still losing weight, which means her combination of blended foods and Ensure is under the maintenance number of calories. For sure she won't get any pleasure out of her current eating restrictions, but at some point the loss of weight and nutrients will have negative consequences for her health. When I was in that boat, I kept a pad and pencil in the kitchen on which I kept a meal, by meal count of my calories, Ensure, blender drinks etc. If by 5 in the afternoon I hadn't received 2000 calories, then the extra cans of Ensure and the bag came out again to get me up there. Given my mood at the time and my depression, if Ingrid hadn't been on top of me about eating, I would have just blown it off and not put down the calories...I didn't like it, didn't enjoy it, it didn't taste good, and I couldn't have given a damn less about it..... The log kept me honest and my nutrition and weight where it should be. She even had me counting the calories of everything that went into my blender drinks, One scoop of protein powder 100, four strawberries 40, one banana 45, one cup of whole milk

Thanks for the advice from everyone. Anne my mother says the same thing about meal time. Once she finishes one it's time to start preparing the next. Pretty much all she has time for over the course of a day. Luckily, I guess, old Helen went into this adventure carrying extra pounds, a battle she fought most of her adult life until she started all this. Since last May she has lost about 60 pounds and if her weight doesn't stabilize soon she will be looking at trouble I'm sure. My sisters and I encourage her to keep plugging away at the eating thing, but I think sometimes the frustration level gets the better of her. You can lead a horse to water, etc.....

Vb...........Maybe its time to bring out the OLE Haugen Daas Ice Cream, if that won't fatten her up, I don't know what will! LOL All kidding aside, after losing over two thirds of my tongue, the floor of my mouth and then enduring both RAD and chemo I was in pretty much the same boat as your Mom was/is. Like Brian says, it takes a conscious effort in getting those extra calories down especially when food doesn't taste good and it is such an effort. You really do need to keep daily track of her caloric intake though just to see where she is at. Also visually when she can see that she needs more food/calories it might be a bit easier for her just to eat for the sake of eating. That is what I ended up doing. By writing everything down that I took in orally I was able to see for myself where I was falling short. Perhaps one or two visits with a speech therapist who specializes in swallowing/eating techniques would be beneficial to your Mom so she wouldn't be so embarrassed about eating in public. My husband tried to persuade me into eating, so did my mother in law and almost everyone who walked into my house. Like you said, you can lead a horse to water but.......

Milk shakes were soothing for me and easy to get down, you can add almost anything you'd like to a milk shake. Use soy milk, add breuers yeast, fruits, yogurt, ice cream, preferably Haugen Daas by far the most fattening and best tasting..LOL Shaved or crushed ice with blended fruit was always good for me too. You'll just really have to experiment and hopefully you'll come up with something that will help her along with this part of recovery. I remember clearly those difficult days of needing to eat, but just not wanting to eat, I did have a feeding tube to supplement my eating though so I could get the nourshiment I needed via tube; however, at some point I did need to begin to eat again orally. Another thing that I ate a lot of was steam/poached fish with butter. IF not over cooked, fish is very moist and easy to get down. Anyway, for me it was one of my favorite foods in the beginning. Scrambled eggs too.

I hope your Mom is able to get her caloric intake up so she doesn't have to have a feeding tube inserted. However, if she does end up with a feeding tube it really is no big deal and it may just give her some peace of mind over not having to worry about the food issue for a short while. Learning to re-eat and enjoy foods again is probably one of the most difficult parts of recovering from Oral cancer. I could smell food and even think I remembered what it would taste like, even the texture of the food and then I would go and take a bite of something I thought would be sooo enjoyable and NOTHING--I couldn't taste anything and I could barely feel the texture of the food I so once enjoyed. I don't have to tell you how frustrating that was! And then there were times no matter how good and inviting the food looked or smelled, I had no interest in it what so ever. I didn't want to eat, and I wasn't even sure I could eat. And then there was the intellectual side of me that knew if I didn't eat, I wouldn't heal as quickly and there was a possiblity I could end back up in the hospital with a tube in my nose. Like I said, it is all just very frustrating and just plain difficult. I also had such a dry, sore, mouth and so swallowing was at times very difficult for me....getting a whole new mouth/tongue practically is pretty tough to get used to at first.

Try and remember what your Mom is going through emotionally too. Being diagnosed with cancer, losing most of a vital organ, the fear of recurrence, and just the pain and suffering one goes through tends to take the appetite away too. Cancer is just tough stuff, no way getting around that issue.

You, too, have a difficult job being caretaker. My husband mentions now how "helpless" he felt, how difficult it was for him to witness me suffering, and how he wanted to do more but felt almost clueless as what to do next with what seemed like one crisis after another.
Honest to goodness there were times when my husband didn't think I'd ever eat REAL food again. He thought I'd be on the feeding tube forever and that I would never get better. But I did, and so will your Mom. It all just takes time, such a long time too it seems. I continued to lose weight after ending my treatment for about a month and my oncologist was very concerned about that. I don't remember when or how or even why the change took place in my eating habits but gradually I just was able to eat a bit easier, and a bit more food a little at a time. I'm guessing it is because I was finally feeling comfortable myself and with my "new" mouth and all the trauma that I had been through just fighting that ugly beast called cancer.

Tell Helen we're all rooting for her and a quick recovery! Assure her that she will indeed eat again and not only eat, but enjoy the food she eats once again. It will happen. It will take a long while, but slowly a change will occur. Keep us posted on your Mom and her recovery. SIncerely, Donna