I have tagged to other topics here for several weeks on my fight with having pain swallowing and trying to eat things, getting frustrated, giving up, trying again, etc. I was and am still having some mouth pain on this one part of my tongue--actually on the opposite side from where I had surgery, it seems to rub against a tooth back there.

I thought what I should do is start my own topic on this because I think its going to be a long hard journey for me to get back to eating enough calories that I don't need my tube. And I really would appreciate whatever encouragement it moves you to give. I'm relying on my husband for that right now and it's not working--he's kind of burnt out as a caretaker unfortunately.

This week, finally, I got off oxycodone, kind of by accident. I thought I had one more little bottle of "oxydose" drops left but I didn't. My mouth pain had decreased to the point where I was taking (if anything) tylenol during the day and only using the oxy at night when the pain is worst because my mouth dries out--when I realized I was running out of oxy, I switched to tylenol at night too. I thought since I had already cut down on my use during the day, I wouldn't have withdrawal symptoms but after two days of thinking I was getting the flu because I has the chills all day long and a little nausea, it dawned on me that it was probably withdrawal. I've only had minor chills today so I think I'm past the worst of it and it has made me decide I really want to stay off that stuff if I can--though my tongue still has this irritated spot that hurts--and it also still hurts somehwat to swallow. I'm torn because it might be easier to eat if I took a stronger painkiller beforehand. But I hate that I was dependent on it and I had been taking it for several months.

So anyway, today, my oral nutrition has consisted of about 1/3 of a tall glass full of soy milk/banana smoothie. I can take about 5 gulps at a time and then whatever that part of my tongue is doing rubbing against the teeth starts to hurt and I have to stop. It also hurts in my throat every time I swallow but when its a smoothy with ice in it, the ice actually seems to soothe that. Eating at this rate is not going to get me off the tube but I'm actually proud of myself for just trying the smoothy. I've had so many really painful and aversive experiences trying to eat it's like I have to force myself at this point.

I'm planning on going back to it and at least getting another third down today. Its a start.....anyway, I'll check back here and just post updates on how I'm doing. I feel like I need to keep on myself about this if I ever want a chance at being able to eat again.

Nelie

Nelie
You are doing a so well, and being very brave, as well as taking the time to post often to help other members.
I know it seems as if it is taking forever Nelie but,I think you are pretty well on the road recovery.
I am sorry you feel as if your husband is distant, it can be hard on caregivers . Maybe he is trying to convince himself that you are now cured and things should be back to normal.

Pete had his tube for a year and I can remember on occasion thinking , why is he hanging on to that thing.
Looking back on some pics we had taken about 8 months from diagnoses , when I thought he was well on the road to recovery. I can see now how skinny and unwell he looked. But in MY mind by then, he was doing great!
Wishful thinking my part I guess.
We see what we want to and deal the best we can. Hang in with him Nelie, maybe he just needs, not think about losing you, for a while.

Wishing you both all the best

Nelie, hope this isn't a dumb question, but have you seen your dentist? He might be able to spot a jagged edge on the tooth that is causing your tounge to be sore on that side and smooth it down it might be worth a visit. Amy

Nelie, I think its great you got the 1/3 of a glass down OK. Since you weren't able to swallow anything before this, I think that's an encouraging sign. Small steps will add up to eating again eventually. Hang in there. Connie

Amy, not a dumb question at all. I did see my dentist about a month ago and he did smooth down a couple of tooth surfaces that were dcausing problems. It is since then that I have had significant reduction in mouth pain and the sense that I am healing more so I think that helped quite a bit. I think there still may be a spot or two that eneds work , though, so I may call him this week and ask if he can squeeze me in again.

I am also having some problems with trismus--it isn't really severe but its definitely there- when I strecth my jaw a few times during the day I can get two fingers in the gap between the teeth --but it should be three fingers!

So I think it was hard for the dentist to see in the back of my mouth--I was at this kind of head pointing toward the floor angle in the chair and teh air blast from his thingie he ws using to smooth the edges suddenly started *really* hurting the sore spot on the abck of my mouth so I had to ask him to stop last time. I was really having a lot more pain then though.

So here's my progress report. Saturday I had about 12-15 spoonfuls of cream of sqaush soup. I can do about 5 or 6 swallows before it starts hurting so I did two or three rounds of that. The squash soup had some ginger in it which made it sting a bit more than othersie I think, although it wasn't a lot (that I could taste anyway). Today I had about 10 spoonfuls of onion soup (without the yummy cheese and bread of course). The good news in all of this is I could taste not JUST salt in these soups but other taste as well so my taste sensations do not appear to be totally zapped.

Now if only I could EAT more. I was visiting my fmaily this weekend and my parents really do know how to eat well--my husband got treated to calamari and yummy fresh salads and crab-filled ravioli and sanwiches with rich grainy bread and thick slices of good cheese and I SO wanted all that! Maybe one day. It really seems awfully far away right now.

Nelie-
Thank you for starting this topic. This will also help with my Mom. I can share your experiences with her to help with her expectations on this issue.

I hope that by having a "written" log of your efforts it may help you with the recovery. Just by being so conscious of your attempts it may keep you pushing along even harder than with out the postings. It almost makes you accountable is some sort of a way. I hope this helps aide you in recovering and resuming eating by mouth. Stay Strong!
Tami

thanks Tami! If you want to contribute with how your mom is doing it would be welcome. You're rigt I'm doing this because it helps make me accountable in more of an every day way than I was being!

Well, I haven't accounted for myself for a while here and that's because there were a couple of days when I got so busy with working that the extra effort to sit dewn and slowly try to eat/drink some kind of "real food" became too much. It was a much as I could do to get 6 cans of "jevity" down. I have always done cans for my tube feeding--and I have to do them one at a time, More than one makes me sick. I was doing 5 for the longest time ebcause I was so easily made sick for other reasons even though originaly (when I weighed 40 pounds more before I started radiation at the beginning of April) I was told I'd need 7 cans to amintain my weight. It seemed like 5 cans results in a weight loss of 1-2 pds per week. Which, since I was overweight, didn't seem too horrible and wasn't too hard a goal to reach--didn't add too much to the nausea.

But when I realized I had lost 40 pounds a couple of weeksa ago, I decided I have had enough weight loss. I'm clearly very weak--I've lost muscle tone not just fat--and I need to maintian the weight I'm at now--maybe eventually gain back a few pounds (actually, since I was diagnosed I have lost 60 pounds because I lost 20 pounds from the two surgeries adn teh resulting surgical infection I got from the lumpectomy before April, and radiation, ever started. Who would have ever thought that I'd be grateful for having been 50 pounds overweight in the beginning of January?)

So there were a few days of just struggling to find the 6 breaks during the day to get down 6 cans of Jevity. Plus I have salagen and tamoxifen I take by grinding up the pills and putting them through the tube, and I'm taking "beecaps" supplements right now, that need some extensive grinding before they go through my tube. As well, I have a Bvitamin/vitamin C drink mix and I'm taking two glasses of that a day right now (which are megadoeses of B and C but there's reasons why both may be good.) Then there's the extra strenght Tylenol I take for pain. So just taking breaks and figuring out what stuff in additon to jevity goes down the tube, and carefully grinding it up and putting it through is actually hugely time consuming. I can't believe how much time out of my day it takes. To find the time to, on top of that, set up some kind of oral consumption experience (I won't say eating yet because it isn't), which I am trying to set up so it will be a good experiecne, not something that discourages me more but somehting that tempts mne to keep trying, some days it seemed like too much.

BUT yesterday and today I have been back to that. Yesterday I just had some vegetable broth--no calories but with the 6 cans of Jevity I dohn't think I need calories so much--the veg. broth tastes like "real food" to me--it doesn't just taste like salt (this is actually a soemhwat low sodium broth), and when it's slightly warm it really feels good going down. I can't swallow big mouthfuls at once though but I ended up having a cup of it.

Today I tried sopme French Onion soup, with tiny almost ground up bits of onion and then a littel can of diced peaches. Someone else had mentioned those and I thought they were something nonliquid I might be able to handle because theya re soft enough.

Well, the cup of onion soup (which was really just a little thicker than the broth the day before) went down OK and the peaches started OK--they are liquid enough I didn't have the problem of them just sticking to my teeth or the roof of my mouth but (and this upsets me) I couldn't seem to swallow them right! I would think I had done it and then cough and the littel bit of peach would come flying back up. Is this just because I'm out of practice getting food to go down the right pipe or something?

I'm actually a litte hesitant to even try more because my husband wasn't around and I started worrying maybe I could choke on a little gob of peach. Did others of you have this problem when you got back to eating? I know right after my partial glossectomy it took me a while to figure out how to use what was left of my tongue to get bits of food to go to the right spot to swallow. I had a hard tiem there for a week or so thenit seemed to suddenly get much easier--like my brain had learned the new movements nd it became automatic. Do I just have to keep trying adn I'll relearn this again or does this mean I could have problems for a long time now? I hope not.

Anyway, that's my update. And I plan to keep trying.

Hi Nelie --

try using your blender -- when Barry's throat is bad (it comes and goes now) I use our blender to "puree" my cream of crab soup and potato soups as both have hard bits or lumps that scratch his throat and make it hard for him to swallow.

I found stringy things (like squash) don't work as well -- potato is good however. I made a great cream of spinach soup -- chicken broth, onions and canned spinach plus light cream -- and pureed the whole thing. It looked great, like for a dinner party (if you like green soup) and tasted great too. Next I am going to try borsch!

Also, Trader Joe's sells great completely pureed soups in boxes -- just pour out what you need -- there's a squash (not stringy), corn, tomato (might be too acid if throat's raw) and also, a portobello mushroom. Not a lot of calories but they go down smooth...

Best,
Gail