This is really a comment/question/whine/search for whether others have been in this spot that's more about the psychology of being where I am than any medical advice I'm needing.

Since I've been back at work, I'm having a really hard time doing everything I need to do to maximize my chances of being able to swallow again. Here's what I have to do every day:

I need to stretch my jaw using the therabite & times a day. I am doing the high-pitched squeal throat exercise aiming for 4-5 times a day. Then there's the swallow holding your tongue exercise--2 times a day, and the Shaker exercise, which I found on the web and decided couldn't hurt to add too (I am calling it "neck sit-ups" in my head now since I realized how HARD it is for me right now to hold my beck uo for 1 minute, let alone do 30 1 second reps)--whcih should be done three times a day.

Then there is half an hour, 4 or 5 times a day, of just swallowing some liquid or other. Coffee in the am, soup and juice in the afternoon, hot chocolate at night. I can't do much else when I'm doing that ebcause it takes so damn much concentration and I still have the tendency to inhale things at times.

Then there's mouth care--tooth brushing at least 3 times a day--gargling with biotene mouthwash a few times a day and I am back to gargling with the magic mouthwash (but not swallowing it usually) to prevent more thrush.

And neck care: heating pad around the neck am and pm to keep the msucles loose and putting cream on the scar twice a day, and stretching my neck twice a day at the advice of the physical therapist.

THEN there is the time it takes to feed myself through the tube, including grinding up vitamins and washinbg them down, 7 cans, three glasses of fruit and veg juice, and pills. I bascially need four sitting a day of about 1/2 an hour each (by the time I get myself settled, grind up the pills, flush the tube at the end, etc.)

Just the feeding myself and swallowing stuff is 4 hours a day. the other exercises add easily another couple-three hours when you add up the time. And on top of that, I have at least 4 hours of physical therapy/therapy/couples counsleing every week, let alone if I go to the dentist, the ENT, the oncologist, the rbeast surgeon (all of whom I've seen in the last month). And my physical therapist wants me to see a chiropractor for a couple of times a week for a little while too. And since all of the exercises are spread out I have to CONSTANTly be interrupting whatever else I happen to be doing.

So we're talking about 6-8 hours/day to take care of myself. And I'm trying to work full time on top of that. My work schedule is incredibly flexible--I have usually around 4-5 hours of committee meetings every week and 4 office hours and other than that I can work whenever and whereever, thanks to teaching online and a laptop. But even though it's flexible, I still need to be putting in a minimum of 35 hours a week to stay caught up with grading and all the other stuff I do (committee work, etc.)

And I am having SERIOUS time management issues about all this (add to this that I've packed and unpacked everythiung in my study to move it to another room in our house at the request of my husband and am also trying to finish repainting/ fixing up a bathroom at home on the weekends). I feel like I have NO free time and I often find myself exhausted in the evening at around 9 pm thinking "I still have to do 2 more jaw strecthes, swlalow hot cocolate for 1/2 an hour, then feed myself 2 cans and sit up for half an hour after that with a heating pad around my neck"

And the thing is I feel well enough, it's easy to forget about doing all this stuff. But if I forget I may doom myself to the tube forever.

Has anyone else been here? How did you keep yourslef going? I am finding I have to write out a schedule for every minute of my day to stay o track with stuff. And I just hate how overloaded it all makes me feel. I'd like some time to just relax and enjoy things right about now!

Nelie

Hi Nelie. Are you able to swallow any food? Do I understand correctly that you still have a peg tube? I fought that peg all the way through radiation & demanded it out the day I finished 35 IMRT sessions. I lost 50 lbs over 4 or 5 months & over the last 1 1/2 years have put back on 20. I still cough sometimes when I eat if I lose focus like you describe, but can eat anything I put my mind to for the most part. I definately choose my foods for ease of swallowing characteristics & mix bites of harder to manage foods with sauces, dressings or whatever. For example, I love chicken teriyaki. The plate with 2 scoops of rice, green salad w/ranch dressing & the grilled chicken. I eat it a couple times a week cause I get extra dressing for the lettuce & also put it on the rice. The teri sauce helps the chicken go down. I put hot sauce on also & I think the spiciness makes my throat create mucous which helps! I find that I hold my breath while eating or should I say swallowing. Eating does take a lot of time & effort & sometimes I just skip it altogether cause I'm too busy. I seem to have learned to adapt & I do mean adapt. When I drink water, I chug a whole glass without breathing until I have swallowed completely & swallowed again to make sure & clear the throat & then I breathe. I feel very fortunate. I know a lot of people have a lot more trouble than I do. I'm extremely bullheaded & would not let go of trying to be normal, ever. I drove my wife crazy. I was sipping water 2 weeks after my trach was out & coughing a lung out even when the doc's told me not to. I put clam chowder through the blender & drank it instead of using that frikin' peg. I forced myself to do alot of things the doc's told me not to as far as swallowing. Anyway, I'm ranting. My work involves lots of physical activity & I force myself to push my neck everyday & still have to stretch all the time & it still feels tight & uncomfortable. I'm self employed & sell & install custom home audio & home theater systems & do light construction, so I stay pretty active. Like I said I find that I skip meals alot because of all the extra effort it takes. Maybe that's why I haven't put all 50 lbs back on! Keep yer chin up Nelie! Maybe don't think so much about it & just do it & it will become less tasking. Erik

Hi Erik, yes, I still have a PEG. I sipped water all through my treatment but during and after for three months didn't try to eat much because I had a *really* sore mouth and absolutely everything I tried to swallow hurt my tongue too much. Around September-October that got better but I seemed to choke on anything with any solidity. When I realized I was choking on canned diced peaches I asked for a swallowing test and actually ended up having two (a barium swallow and a FEES) which showed two things. First, my epiglottis is not moving to close off my trachea when I swallow--it seemed to be almost frozen in place though it moved a little--so everything has to be pushed past the trachea with a double or triple swallow (meaning swallowing three times while holding my breath)--and I am only successful at doing this with liquids--solids I can't push back that way because of the second thing which is that my ENT said my throat looked puffy and rough (and I guess very dry) and stuff (in the case where he was observing during the FEES it was applesauce) just gets stuck to it, then slides down he wrong way and gets inhaled (though I can feel when that happens and cough a lot).

Since those tests, at the advice of the speech pathologist, I haven't tried anything but swallowing liquids--that is hard enough for me. I was told that if I healed more and my swallow got stronger hopefully eventually other stuff would be possible. AND I have to swallow small enough sips of stuff that I do about 6-8 oz in an hour--which makes it pretty impossible to think I could survive on a liquid diet without the tube. I'd be doing nothing but swallowing all day!

I hate the tube but I'd hate even more to have it removed then have to get it put in again and I don't think my doc WILL remove it until I can prove that I can consume the right amount of calories and nutrition orally. And I'm definitely not there yet. And part of me is afraid I never will be because things don't seem to be progressing much. Thats' why I need encouragement. If I give up, or let these exercises go,I KNOW I'll never get off the tube.

Nelie, just a thought from this 65 yr old "Type A" personality-perhaps you are trying to do too much in too little time- take care of YOURSELF first and the rest will fall into place. You are over-scheduled and "You" are falling through the crack. Amy

Nelie, I remember my physical therapist having me do some swallowing strengthening exercises. If I recall, chin down towards my chest & dry swallowing as hard as I could to 1) build strength in those muscles & 2)stretch those same muscles. It's kind of a tough exercise to do even now. I realize that when I'm eating I keep my head down when I'm swallowing. My 2 youngest girls, 10 & 11 made the family dinner tonight. Chicken nachos! I managed, but I had as much mango/peach salsa & sour cream & diced tomatoes as I did nachos to make it go down! There wer'e quite a few very hard swallows & a couple of glasses of milk during that meal! I did not do much talking & was most certainly the last one done at the table. I was doing a lot of breath holding. You have been through a lot more treatment than I have with breast cancer & all. I am trying to be encouraging for you. My ENT says my throat is always inflamed because of the radiation & always will be tender. The other day I took a drink of hot coffee & in the process of doing the hard swallow thing burned the crap out of the back of my throat while sort of holding it there till I could swallow it. Like I said, I'm pretty bull headed & I love my coffee with cream & brown sugar! I do wish you some forward progression. We all heal at different rates & I hope yours speeds up. Erik

Nelie, give that tube a nickname and look at it as an intregral part of your body right now. It is helping to keep you alive-quit hating it! I occurs to me that if you were fighting this disease 20 years ago, without the advances in treatment today, you could very well be on the other side of the grass as Brian likes to say. By your own admission, the tube is allowing you to get on with life and recovery.

Erik. no offense, but I will not print your posts for John to read because his Doc has told him not to put anything down his throat until given permission because of the danger of aspiration. He is as hardheaded as you and I don't want him to get any ideas that he hasn't dreamed up already about taking charge of his treatment. Stay well, Erik. Amy

Nelie - Your schedule has a very familiar ring. Like yours, my schedule is facilitated by the flexibility of online teaching. Many of the excercises I so beieved in came to be of little aid in my recovery. My jaw did not recover much mobility despite my torturing it with the thera bite. It helped stop the losses from getting worse, but I didn't recover much. A few squeezes a day seemed to do the trick.

Grind your meds and toss them into your water bottle. I used to make such a ritual out of taking pills. What a waste of time. Now I grind em all and put them in my first pint of water or juice for the day. Trust me, your body won't know the difference.

My neck exercises did help restore some flexibility, but I have discovered that occasional neck stretches while I read or type are just as effective. The rigid schedule I tried to follow, now seen in hindsight, was not terribly important. Just stretch whenever you remember to do so - I stretch before I eat.

My senses of taste and smell were both lost to the ray gun, so I will be living by my peg tube for the forseeable future. Many others have told me that strong taste and smell are essential to being able to take sufficient nutrition orally. Fight the good fight, but make those exercises fit into YOUR life routines - not the other way around. Nothing helps your swallow as much as swallowing. Sips from the coffee cup, juice box or water bottle during the day may turn out to be more effective than the scheduled exercises.

Look to your peg tube sessions as a chance to relax. I pour as I correspond with students - feet up, shoes off, slightly reclined. Very relaxing. Think of all the junk food that WON'T go through the tube!!

Make your rehab fit into the schedule YOU want. You will likely have all the benefits available from it within a few weeks anyway. Don't make yourself crazy trying to get back to normal. Normal is gone. Besides, normal is boring.

Don't wait for rehab to get on with life. Continue filling your world back up with your stuff. Make those other things wait in line, fit in or go away. Life is now, not when flexibility returns. I hope some of these ideas help. Tom

Aaargh. I had a longish reply written to this that just got lost in the cybervoid....

Tom, I really appreciate your response to this because I know you've been there and done that. Am I understanding correctly that you are on the tube still more because of loss of taste/smell than ebcause of inability to swallow? I actually still have my smell and most of my taste, I just can't swallow anything solid (which includes pills-I've been grinding them up and flushing them through the tube since treatment) and have a problem even with liquids.

I guess I'm just wondering if anyone else has had this happen--it seems very uncommon and I worry it's ebcause I went to a new radiation facility. Too late now, I guess, but I'm interested in other people's opinions about how often this happens and whether it could mean the raidation plan was messed up. Also I'm thinking maybe I should go to a really top-knotch swallowing clinic. Does anyone know of one? If I have to accept being on the tube for the rest of my life, I will, but, just like my initila fight with cancer, I don't want to feel, a year from now, like I haven't tried as hard as I can to get back to nontube eating.

Of course I'd love to eat "normally" but honestly I've given up even hoping for that. I'd just be happy with being able to swallow some soft foods and swallow liquids better (right now I can't even swallow liquids well enough to dirnk my meals each day). I don't hate the tube, Amy., as you suggested I'm grateful it's kept me alive. But I do have some life goals, such as travel to far flung places, that don't seem all that compatible with needing to be tube-fed. Pretty difficult to haul ensure or jevity around with you, though I'm sure there are ways ti manage it if I need to.

If I can eat soft foods, well-cooked veggies and noodles/pasta I'm sure I could do just fine anywhere I go. But even that seems like it's a long way away, if it ever happens, right now.

I won't keep up this schedule forever if the therpay doesn't help but I need to feel I've done everything I can. Tom, I may have some more questions for you later but I have to run right now.

nelie

Nelie,

You need to get to an expert on swallowing and find out why you can't swallow. You have one? Ask another. Finding, and visualizing, that happy place where no one can swallow is not the answer. There has to be reason for this problem, and the doctor should be able to articulate it to you. I will not get into the PEG issue, you all know I had none. I had the full treatment, standard radiation, mandible resection, forearm flap reconstruction and modified neck dissection. I eat a completely normal diet. There is a swallowing disorder clinic at Yale, let me know if you want their contact information, I'll dig it up. You should only be going through this as a last resort, not as a matter of existing.

Glenn

Glenn, Yes, I'd be interested in the Yale clinic information. Cathy, I got your private message but it wouldn't let me reply to you--apparently your private message mailbox is full. But yes, I could definitely do another trip to Boston (even a few trips) if it would help me get back to swallowing more normally. I'll look up MEEI on the web but I'd appreciate whatever you can find out too.

Nelie