Amy, I am sorry you think I would be a bad influence for your husband. I have always questioned ALL the answers in my life & will continue to do so. I do not mean to say I have the answers by any means, but there are always many more ways to get things done, if you you seek them out. I have always joked about the fact that it's easier to ask for forgiveness than asking for permission! This attitude has served me well in my life as well as my fight with cancer & figuring how do to adapt to my new life. It is my nature to overcome, to do things my way, to take charge. Optomism is the key to my happy life & well being. Alot of doctors do not have all the answers & have actually given me some bad advice, not all, but some. You do have to be your own patient advocate & take charge of your own treatment, do what feels right & not just accept the answers sometimes. Tom got it right I think. Use it or lose it. Keep swallowing or lose the ability to. A year and half ago I could not lift my right arm above my head to rinse my armpit in the shower from my neck dissection. I would walk my fingers up the shower wall until I felt it was high enough, everyday until I could do it without the finger walking thing. I could not reach across my desk & lift the stapler & now I can. The doctors kept telling me to take it easy & be patient & I just kept trying harder. They said I'd be out of work for a minimum of 1 year. I was back to work full time in 8 months & worked part time off & on throughout treatment. The mind is a powerfull tool & will do exactly what you tell it you can or can not do. It has been proven throughout human history. Half full or half empty. Where there's a will, there's a way. I'll get off my soap box. I am only trying to be inspiring. For me sometimes if I just hear that one little thing, it makes the difference between trying or not trying. My best to all. Erik

Erik, my remark about not giving John your post was sent with a smile. I admire your courage-just don't want John to get ahead of himself, as we are 60 mi away from the nearest emergency room and I dont want to deal with aspirations to his lungs at home. I do admire your grit and determination. Amy

Nelie, I get mixed messages from the medicos about my swallow. I am able (on good days) to swallow shakes and some soups. I cough but don't seem to aspirate. I have little or no smell/taste and its surprising how important those are in the mechanics of eating by mouth. Instead of it being a satisfying and quenching experience, its just kind of an awkward exercise - that I'm not very good at!! I would never be able to swallow enough of anything to get enough calories to sustain myself.

Swallowing is a real struggle, and there is no satisfaction from it for me - its just cold stuff or warm stuff sliding down my tortured throat. Pills get stuck in there, so I grind em, and peg em. I think I fought the good fight to recover my swallow, but only got a little of it back. Perhaps I will continue to gain function as the calendar passes - it seems a bit easier now than it did last year.

The jaw mobility is my biggest concern. Nobody told me about radio+jaw muscles, or losing jaw function and I was way out of radio before I learned about the thera bite. Had I started with it sooner, I might have preserved more function. The up-side is that no calls me "big mouth" anymore!! (I can barely get a slender upper denture in). Email me if you like. I'd be delighted to talk with you further. Be strong. Tom

A follow-up to my work on trying to regain swallowing ability. Last week I had both another swallowing test with my ENT and the speech pathologist that works with him here AND got an additional evlauation by an ENT in Boston that Cathy G. (thank you again Cathy) helped get me connected to, who only treats oral cancer patients, just to be sure that everything that could be done was being considered in terms of trying to get back to eating semi-normally.

The good news (which I don't take for granted, believe me) is everyone agrees there is no signs of recurrence.

Also good news is everyone agrees I sense it when things go down the trachea and cough hard to keep them from getting into my lungs, which gives me good protection against the worst effects of problems with aspiration.

The ENT and speech pathologist here, surprisingly to me, said my throat looked somehwat better (I don't know why this should surprise me so much, it has been 3 mos. since the last test, but I just feel like swallowing is just as hard as ever) but that there was still lots of swelling and there is an area in my throat (they said the name of the muscles/structures there but I forget it) that is more constricted than it should be where liquid that I swallow pools up then I have to cough it back out or it goes down the wrong way. They tried a swallow with pudding and that actually went down a little easier than the thin or thick liquids--less pooling in this spot in the throat, so I am now allowed to add pudding-textured stuff (had to be smooth, like plain yogurt) to the list of stuff I can try to swallow.

The speech pathologist referred me back to the speech pathologist at the hospital to work with him on a number of exercises that she thinks will help my muscle control and swallowing strength(not sure why this didn't happen before). My ENT suggested a surgery that would involve using an endoscope and stretching this area that is constrictd and causing the pooling as well as giving an injection of botox to a muscle there that would cause it to relax more.

The ENT in Boston didn't think that last idea (the surgery) would work all that well (unfortunately since I would gladly undergo more surgery if it would help me get back my swallowing ability) and he also referred me to a speech path. there I will make a trip back to see who works entirely with swallowing issues related to head and neck cancer treatment, to be sure I'm doing everything I can that might help.

Beyond that, though, this ENT in Boston pretty much agreed with what my ENT here has been telling me but he helped me understand a little better why I'm having so much trouble swallowing. It isn't one thing--it's a series of things.

1. I have restricted mobility of the front of my tongue. Some of this is because I'm just missing about 1/3 of my tongue but it means that I have difficulty forming food and liquid into a bolus, which is work that is normally done by the front of the tongue. (This can be improved through speech path swallowing exercises)

2. Even when I do manage to do that, and the liquid/food goes to the back of my tongue and gets sent down the throat, I have swelling in my throat that catches stuff where it shouldn't. (This may heal up more through time or may not--may always be there from the rad and chemo)

3. Even when stuff gets past the swelling, I have lymphedema at the base of my tongue so it is very swollen compared to a normal BOT and can't move the way it should to help stuff go past the epiglottis. This *might* be helped by lymphatic drainage massage or may be something that never goes away.

4. Aside from that, the muscles that move up in your throat which move the epiglottis down to cover the airway aren't working strongly. This can be helped by speech pathology exercises.

5. Aside from that, even if my epiglottis could move normally to cover my trachea, it appears that it is shortened--some of it was just worn away--from the radiation (although since no one did a test on me prior to treatment it is possible it was just congenitally short-- but unlikely) and this can't be fixed but will always pose some danger for aspiration.

So there you have it. The Boston ENT did say that as more people are getting concurrent chemo/rad treatment for oral cancer (which only became the norm a couple of years ago), they are seeing more swallowing problems following treatment. He didn't mention any signs that I was treated with an especially funky radiation plan or anything (which helps me feel better about choosing to go to the rad. facility here), it's just that radiation, especially combined with chemo, can cause some nasty permanent problems for some people.

He seemed to think that with lymphatic drainage massage to try to help the BOT swelling go down and work with speech pathology, I could improve my swallowing well enough that I can get off teh PEG tube eventually. But he said even with doing all the work I can do "you won't be happy with where you end up". I'm hoping that doesn't mean everything ahs to be the consistency of a shake for the rest of my life and that mayeb I can still hope to eat pasta with sauces, soft eggs, really well cooked veggies eventually. Even if I gett here though, I will still really miss the rest at times.

I miss salad. I miss garlic bread. I miss ham and cheese sandwiches. I miss blueberry pie. I miss plums. Oh I could go on and on....but I have to go grind up my morning pills and pour Jevity down my tube

Nelie.....there could be a physcological aspect to it.Maybe you are terrified of choking on the food or liquid while swallowing & involuntarily restrict your muscles & this could be disturbing the process of taking in.

I've noticed that when i'm eating alone,i'm so relaxed & i actually take less time to finish & need few gulps of water,whereas if i'm eating with people around i'm so conscious & i've problems getting the food or sometimes even liquid down.

Another thing i've observed is, if i take small bites & swallow using small gulps then i can't finish my meal as my muscles are tired halfway.I normally take big gulps & swallow with force.

another thing is that,if you are not ready to swallow & liquid goes past then you'll cough it out.I've had total glossectomy & only a little bit of tongue remaining(not visible in my mouth)& my flap is like a fixed base that doesn't move & initially i've had similar problems.Even today if i've swallowed some food or liquid & there's a little remaining which goes in when i'm not ready to swallow(as i need an interval of few seconds between the gulps) then out it comes.I think there's some kind of coordination between taking in food & swallowing it & if there's remaining, then making sure that you keep it in the mouth until the next gulp or in other words when you are ready to swallow.I don't know if i'm making any sense here,it's like eating like any other person from the outside but inside only taking in with gulps which have interval of few seconds.

If there's heavy stiffness(i've had neck dissection) around my neck,which sometimes happens if the weather get cold or if it starts raining then i have problems with swallowing as the muscles feel restricted & tired.

Food with thick sauce or gravy is so much easier.For example soup with soft & small pieces of vegetables is difficult(not impossible),whereas noodles with vegetables in a slight gravy(no need to make it very watery) is easy.The way it works is,since the soup is watery it goes straight in & the vegetables get stuck,whereas with noodles the thick gravy drags the noodles & vegetables inside with it & makes it easier.If there's noodles,all i do is take some corn flour(doesn't alter the taste) & dissolve in warm water & add to the noodles & warm it up.

I do think the swallowing process gets bettter with time.I actually keep a diary of my eating habits & with time the swallowing has improved & i've been able to include new recipes in my diet.

If i can manage soft food like pasta,noodles,well cooked veggies,rice & etc with a total glossectomy,then i'm sure you can do so much better!!

Jill, I really hope I can end up doing as well as you or better! Even though I feel like I have a better udnerstanding of the mechanics of why nothing wants to go down right now, and I certainly have a willingness to do whatever I need to to help make it better, much of this is still a mystery to me--why someone like you with a total glossectomy can swallow better than I can for example! Although part of that may be the degree of lyphedema I guess. I know that can vary enormously when women have breast cancer surgery to remove nodes under their arm and I don't think i realized how it could effect swallowing(because it's mostly affecting my tongue where I can't see it--although it also explains why my upper tongue sometimes feels larger than it once was and rubs against my teeth and gets irritated).

I do try to stay optimistic about improvement because I do agree psychology has to be part of it. How long has it been since you had radiation, Jill? Did you have chemo too?

Hi Nelie!

It's been 1 yr 8 mths since radiation & I haven't had any chemo.

Hope the swallowing does get better and keep on staying optimistic.