Hi Nelie, Jerry is 10 weeks out from radiation now. He was actually able to eat food up through the end of week 4 of radiation and then switched to shakes and diced peaches. He is still doing that at 10 weeks out. Tonight he is going to try non-pureed soup so we'll see how that goes. He cites 3 things that he feels together are causing him to be unable to eat real food: 1) the non-healing spot that will be treated with hyperbaric oxygen starting next week, 2) the swelling from the neck dissection ; he is putting off the lymphatic neck massage until he is done with the hyperbaric oxygen treatment, and 3) dry mouth - his seems to vary, ranging from mild to moderate. These three, along with shoulder pain/weakness from the neck dissection seem to be his big issues at this point. He was seeing a PT right after surgery re: the shoulder/neck pain weakness and daily continues to do the exercises he learned. He never used the pain patch I've seen other people write about, but he did use acupunture along with 2 tsp Roxicet or Oxycodon? 4 times a day (and still does). He is also pretty fatigued.

His surgeon keeps telling him that healing from this is going to be a marathon, not a sprint.

I'm very encouraged in hearing others talk about having pretty normal lives eventually.

It will get better - hang in there.

Connie

Nelie, We are pulling for you. John is 17 days post rad tx. and not wanting anything but water, coke and maybe tea by mouth yet. I think it's gonna be a long haul and not too much fun. Hang in there. Amy

Bob,

Boy can I relate to the cereal getting stuck somewhere then reappearing. I have tried to mainly take my meds through the PEG tube still but I have two small Tamoxifen pills to take in the morning and was thinking it was working ok to take those orally until recently(I can't do large pills at all).

Then a few days ago, I was rinsing out my mouth before bed and spit out somehting roundish and white that I think was the remains of one of the tamoxifen pills! I have a couple of little places that are like sandpaper-dry pockets on the roof of my mouth and I think it had been stuck and hiding there. Since my tongue is numb on one side I wouldn't have felt it. Today the mushy remains of one of the tamoxifen pills rolled back into the feeling part of my mouth about 5 minutes after I thought I'd swallowed both! They are the type of pill that doesn't have a coating to prevent them from dissolving a little right at the start. I think they get just wet enough to get sticky then go up to that sandpaper spot and stick. I've also had it happen with a pill in my throat. It is scary.

Thanks for all the encouragement folks. I'm feeling more optimistic at the end of the day today because I haven't thrown up recently. It's amazing how that happening affects my entire mood and belief system and outlook! It also amazes me how the simple reading of words of encouragement from someone who has been there and done that, even if I've read them many times before, makes a huge difference. That last remark is intended especially for you Cathy and Erik. Sometimes I just need to "hear"(read) the same words of encouragement yet again. Thank you.

Nelie, I just watched John take a pill [ he has some of the same swallowing issues mentioned above.] He says that if he is careful to get the pill exactly in the middle crease of his tongue, he can manage to get it down. If something slides to one side or the other-he's in trouble. Maybe tge peg is best for meds at the present time. Amy

I have had trouble swallowing pills and my husband told me to take a sip of water and hold the H2O it in my mouth. I place the pill in that small pool of water and it doesn't stick to the roof of my mouth nor choke me nearly to death.

I wanted to ask some of you who are eating better, why can I not eat spicy, peppered foods or cokes? It stings and burns so bad. I do not have any open wounds. The docs says give it 6 months and then he will say give it 1-2 years. Will I ever be able to enjoy those types of food again? Mary

Mary,

I think you'll find a wide range of experiences with spicy foods from people who have been out of treatment awhile. It's probably a combination of: 1) how much salivary function they were able to get back over time, and 2) what areas of their mouth received the heaviest radiation. For me, it was a matter of several months before I could even tolerate bland food again! (Some of my salivary glands were removed during surgery -- also I had XRT, as IMRT wasn't even around then.) It was probably a couple of years before I got back to sampling and dealing with things that were a bit more spicy. Today -- 16 years out -- I still stay away from the hottest types of curries and salsas. The medium ones are about all I can handle.

Cathy

Mary, I am absolutely amazed now at what I can eat and drink sometimes. Of course, it might be good one day and intolerable the next. Right now, I'm sipping a coke from having taken the kids to lunch at Sonic. I didn't think I'd ever be able to drink a soda again. One thing I've noticed that helps is when eating out, the coke usually has ice in it. Anymore, I put ice cubes in it at home and it helps me to sip them down. As for spicy foods--my range of ability to eat them isn't what it was, but I can handle mild spicy stuff. When I go do my Mexican craving, I always order the shredded beef chimichanga smothered with MILD sauce.

I've also been a huge fan of buffets. There's only a few of them in town, but there's usually something in the food line that I can eat, even if it is a big batch of mashed potatoes and gravy (not to mention most buffets have these wonderful soft serve ice cream machines) Anyway, I like going thru the line and if some food isn't working for me, I get another plate and try another selection of foods.

Ironically, since I've been eating out alot lately (I either drag a kid with me or go by myself) almost all the places I visit are viewing me as a "regular" Most of the people who wait on me know I'm recovering from cancer treatment and have patience with my pile of plates or multiple dishes of ice cream.

Now, I've been hitting my nearest Starbucks quite often. Yesterday, I went twice. They aren't use to hearing someone say "I want the maximum calories in that thing" and now they know because I've explained to them. I think the barrista that whipped up my carmel frappacino yesterday put in extra squirts of carmel and had the whipped cream way above the dome cover.

Every week now, I seem to feel an improvement on eating. Although I envy the people I see in the buffet lines that can eat HUGE piles of food. Right now I have to work on getting more volume.

Jen

Cathy it is so good to see a 16 year survivor!!! Wonderful!!!

I love reading the comments on here. For so long I thought I was the only person who experienced such things as the choking on a pill, mouth gunk, and not eating big volumes.

Guess what I did today? I drank a diet root beer. The artificial sweetner was strong enough to knock a horse down but I was able to drink it with minimal burning but I know tomorrow may be another day. (Anything extremely cold such as ice cream and iced drinks still hurt.) AND I make homemade salsa for my family and I even tried it. That was not an exciting moment though. LOL

Nelie, I lived on chicken noodle soup for a while and the warm salty broth felt really good. Maybe you should try it. It didn't require any effort to swallow nor did it rub "blisters" on the roof of my mouth.
Mary

thanks for the suggestion, Mary. I will try it. So far, nothing but (some) iced tea and--one day--half and half creamer all by itself--has been in the category of "doesn't hurt to drink/eat".

My brother has been visiting me from the West Coast and last night we went to the Moosewood restaurant. Yes, the one that was the basis for all the cookbooks. I love the Moosewood but I went figuring probably all I'd be able to have was chamomile iced tea. But they had this mushroom bisque soup on the menu that sounded so good I thought I'd try a cup. Even just the creamy part of it, without any big chunks of mushroom hurt my mouth all over. Sigh.

And then we had an overworked waitress who had an assistant she was training bring the chamomile iced tea. Usually they just bring you hot water in a cup, the tea bag to steep and then another glass full of ice to pour it into. This clueless college-student assistant waitress bring us (my brother ordered iced tea too) the teabag on a saucer and a teacup full of ice water. No hot water for steeping. How hard can it be to get that right? Oh well. They didn't charge us. But the long and the sort of it is I sat there and enjoyed vicariously what my hubby and brother were eating and had nothing I could eat or even drink.

I'm going to keep trying, though, I know there are good and bad days and it has to just be a matter of time.

Just an update. I'm STILL having mouth pain problems bad enough to make it seem impossible to eat anything, although I keep trying things.

Fact is, I have some days where my thraot and tongue are so sore, it's painful even to swallow my iced tea--which normally I can do. I have had a few days lately where I've had a lot of phelgm too--like steps backward. And I'm experiencing sme trismus-not severe yet but I can tell it's getting worse--sometimes in the morning I can barely open my mouth wide enough to accomodate two fingers and I can feel it hurting at the joint!

I continue to look in my mouth and I still have some white pacthes that are pretty clearly NOT thrush but mucositis sores--some of these have healed quite a bit but some still have a ways to go. I no longer am at the stage of mucositis where I have a white coating over my whole tongue but I have spots where there is still a white coating--mostly these are on parts of the tongue that I think are rubbing against the edges of my teeth and may be taking longer to heal because of it. There's also a spot on top whjere I can feel lots of little raised bumps--I think that may have already been like that before rad though.

Under my tongue on the right side--kind of opposite where I had te tumor on the left side, I also have a painful spot where I think it's rubbing on a tooth and sometimes it gives quite sharp pains when I drink tea or try other food. I'm a little worried about that one because it is opposite where the tumor started last time--but just 2-3 weeks ag, my ENT said there was nothing that looked like cancer.

Then WHY is it healing so SLOWLY? Its been 9 weeks since the end of rad and it's obvious I'm behind where many other people are in terms of being able to eat things and having pain. Should I go back to the ENT again before the next scheduled appt. which is 3 weeks away? I'm a little panicked.