My husband is 5 months out of surgery and 3 months out of TX with a peg. He passed his swallow study in January and the Dr. scoped him and said he should have no problem swallowing foods. Dr. seemed surprised he was not eating soft foods yet. Emmett has tried a teaspoon of yogurt & pudding once since then and gagged until he rinsed it out. He says his tongue can not move the food like it should so it just sits there and he can't swallow it plus it tastes salty and why bother. I want him to keep trying every day so his tongue movement gets stronger. He does drink water and he feels that is enough of an accomplishment for now. He does say he looks forward to eating someday just can't right now. I am worried he is losing ground with being able to eat as things will stiffen up. He can not open his mouth as wide as he could before TX and he admits his tongue feels swollen and not moving as well as it was. Is this a normal reaction for others who have had this tongue surgery? Am I expecting too much to soon? We go back to Mayo next Monday for his check up and I was hoping he would be motivated by the visit to say he was trying to eat at least. Overall he has a positive outlook, is more active recently and feeling stronger but I don't understand his refusal to try food - he does take all his cans no problem.
Karen - It sounds like your husband is making progress, with feeling stronger and it's good that he has a positive outlook, but I know it must be worrisome for you when he refuses to try food. My son did not have a PEG or the exact same experience that Emmett is having - but he had a very difficult time with solid foods. His tongue was swollen, too and had a hard time moving the noodles around from the chicken noodle soup so for a long while he would only sip the broth. I'm sure others here will have some ideas for you more closely related to Emmett's experience. Until you hear from others, there is a thread on this forum on eating and swallowing that has good suggestions on soft foods and how to handle them. Just go to:
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=129307#Post129307Hope things go very well at the next check-up. Let us know what happens.
A speech pathologist might be able to help in strengthening the muscles. Before Jim's recur he was getting therapy 3 times a week that included electrical stimulation and massage and it was helping strengthen the muscles and his swallowing. He had to rely on gravity but was getting there.
It does sound like Emmett has made some progress. Healing from this takes a very long time. It cant be rushed. Im sure it is difficult for Emmett to use his new tongue and it feels weird to him. Swelling from a serious operation can take a whole year before it finally goes away. If he doesnt stretch his mouth open wide a few times per day and do these exercises daily, he will tighten up and have bigger problems. I have trismus and its not fun! Texture plays a big part in relearning to eat again. Here is a list of easy to eat foods for the beginning eater. Hope he will try some of the things on it. Best of luck with next weeks appointment.
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621
You didn't say if he has seen a speech pathologist. If he hasn't then he should. A speech pathologist will be able to show him exercises that may be very helpful both for opening his mouth wider and for swallowing.
My other suggestion is to encourage him to try different foods. Everybody is a little different. Some of the foods that were supposed to be easy to swallow weren't easy for me. When pudding just kept sliding around in my mouth going nowhere I had no trouble swallowing poached eggs. As a matter of fact I was surprised that you say he can drink water because water was actually the very last thing that I could swallow without choking. It went everywhere but where it was supposed to.
My doctor telling me that I "should have no problem" did not do me any good when I was choking. I was totally scared out of my mind. That was another thing that the speech pathologist helped me with.
Hi Karen,
I am a speech pathologist and just completed my treatment 6 weeks ago. I strongly encourage (personal/professional bias) your husband to see a speech pathologist who specializes in swallowing problems ASAP- ESPECIALLY since he's already demonstrated good swallow function on an MBS - I had my MBS on on 2/25 and just had my PEG removed on 03/11/11. I made good progress rather quickly but let me tell you that right after my MBS I could barely move a tiny bite of pudding around in my mouth to swallow it - it hurt, felt weird and was uncomfortable - eating was hard work and it was MUCH easier to just take my nutrition from the tube - I know better but I didn't always take my own best advice!
The longer your husband waits the harder it will be for him to resume eating orally - it can be so difficult but once he gets started and pushes himself a little bit more each day I would anticipate that he'll notice progress week by week! I've seen it in my own Pt's and now so vividly in myself. Oral motor (tongue and lip) exercises are also critical to get the strength and coordination back for speech and swallow.
When I started eating again I decided I would start each day with an ensure/ice cream shake - I barely choked the thing down the first day and thought to myself that this was going to be a long hard haul. I don't really know why (Divine intervention?) but every single morning that shake was more and more palatable -and I started adding other food items through out the day, malt-o-meal, mushed banana, yogurt, broths, cream soups, mashed potatoes, mac and cheese - just had some chicken phad thai for dinner. I'll be honest - it doesn't taste as good as it used to and I didn't enjoy it as much as I used to because it was hard work chewing it, moving it around in my mouth and getting it ready to swallow, I didn't even eat 1/4 the portion I used to but I did it! Next time I do it - it'll be easier and taste better because every day gets me closer to my old self. It's too soon after treatment to accept that what I have now is my "new normal" I'm not done getting better yet and neither has your husband - please let me know if you have any questions - I was passionate about getting rid of PEG tubes long before I had my own - now that passion has increased 1000-fold!
I kept my PEG for well over a year after getting my force bars taken off (jaw wired shut after mandiblectomy). It was kind of a crutch for me in a way.
To be honest I think the only reason I ever took it out was because it was hard to feel sexy with it. (I'm wondering if I typed that outloud, I think my inner monologue is malfunctioning!) Anyway, it was very hard for me to eat and I liked to shoot bourbon down it when I felt like I needed a stiff drink so it was hard for me to decide to give it up.
Now it's still hard to eat but I try to eat solids at least once a day however I get most of my nutrition from Ensure Plus and protien powder. I think the only time I actually enjoy eating anymore is when I'm properly motivated, really I have to force myself to do it to keep my energy up. Anyway it's a very conscious decision for me to keep myself nourished because of how much of a pain in the a.. it is, especially to keep the muscle and size I'm at.
I can relate to why he doesn't want to that's for sure.
Eric
Thank you everyone for your posts. Emmett has been going to a speech therapist a couple of times now and he does like going and does do the exercises he's given. He read your posts and agreed he needs to start really trying. It actually seemed to give him some motivation and confidence. Said he has been afraid to try, worried he will choke etc. Your posts have made a difference. Thank you so much.
Yay!
So happy to hear that!
Hi Jennifer!
It was very good for me to read your response since I currently have a feeding tube and rely on it more and more each day. I look at food and just thinking about trying to get it in my mouth and swallow causes me pain. Everything burns and it is so hard to swallow. It is so much easier to use the feeding tube not to mention that I put so many supplements in it that I could never even begin to think about eating! But I will try to start again. thank you! Marianne
For me - I lost interest in eating. I now eat because I have to. To this day, there are certain foods that I can not even bear to think about eating. Eating and enjoying food are to a certain extent a mental issue. My OC explained it as - our mouths have been abused and beaten up and our minds have decided to protect our mouths. Have him continue to try to eat and I am sure speech therapy will help too. But it was a huge mental jump for me to eat orally - consistently. I had my PEG removed too soon (my fault) and have struggled with continued weight loss and malnutrition issues. So - keep that PEG in and go for the baby steps. Once he finds a food he will eat - fix it every day til he tires of it - then move onto something else.
Eating is still an issue with me and my family. I find absolutely no pleasure in eating any more. It's more like a chore. Yet eating is at the top of the list of great things to do for them. Everyone wants to bring me food and take me out to eat and they think I don't appreciate it. They fail to understand that I would just as soon visit and drink a can of Boost or Ensure and not work trying to eat to make THEM happy. I had my PEG removed too soon too, and maybe that is why I have such ill feelings about eating. I have to eat because my daughter gets after me (she's an RN) and I know she's right. We have to get those calories in. Carmen is right, find something easy and tasty to eat. For me oatmeal, cream of wheat, and soups are my favorite foods nowadays. They just slide down. Ice cream was my favorite but I can't eat it with this new chemo - boo.
Barb, I'm with ya sister. It's a pain in the ass for me and I really have to be motivated to eat anymore. My swallowing mech is worthless and with half of my tongue and face paralyzed I have to make the choice of talking (which I've had to do more of lately) or eating solids...so I talk.
My conundrum is that my body is starting to revert to my "natural" self and packing on muscle...so I was constantly trying to eat. Now, I'm slamming Ensure Plus mixed with protien powder (mixed with coffee and 5 hour in the morning
) to maintain weight and energy. I push myself in my days so energy and fuel is all I see with food anymore, which is a tough one to swallow so to speak.
Where I've always kept a good eating plan I really enjoyed cooking. I BBQ like a fool but in my previous life my wife and I enjoyed wine and cooking family meals after a long day working...it was our time. Now, we cook for a living, mostly the recipes we perfected during that time, and it's too tough for me to think about enjoying any of it. I don't think about it much anymore but it's a definite social aspect I'll never fully enjoy again.
Anyway....it's good to see your posts Barb, love you girl, been on my mind lately
Eric
I remember a few weeks during the final stages of RT and for 3 or 4 weeks after where it just hurt too much to eat. I kept drinking water as I was advised that you can forget how to swallow. Once I started eating again, I very quickly stopped using the PEG and now 8 months on its hard to believe how normal my eating has become. Sure, I sometimes chase stuff around mouth and some foods seem to make my mouth go immediately dry. I've found sipping very small amounts of soya milk helps without diluting the flavour too much. My saliva has improved over the months but you have to be patient. I find exercise helps - I remember being stupidly proud of myself the first time I managed to spit while riding my bicycle without it just flopping out of my mouth onto my shoulder. Its hard those first few weeks but it really does get better.
Good for you Martin - that's awesome! I know I can't quite spit yet but I'm starting to get good at licking my lips - something we take for granted when eating!
My father who had tongue surgery in july 2010 and radiation for 6 weeks has a peg tube that he really wants to be rid of, but even with it he's not getting enough calories.He has creamed soup with yogurt or half and half added, good powdered vitamins,whey protein, ice cream and and a juicer for veggies and fruit and Ensure in the tube. They didn't give him any swallow tests or advice about how to swallow. He swallows water but it takes him two or three tries. His taste buds are not regenerating fast at all and things taste bad or burns his mouth. I have read that 50 to 100 mg of zinc will help the taste buds has anyone tried it with any success? The swallow/speech therapy he's had is minimal and is all about speech,not swallowing.
My father says he can't and refuses to try even chicken broth which is the same as the water, because everything tastes horrid. what is a swallow test? I really admire the tenacity of most people on this forum. My dad is 82 and feels he's running out of time to heal but is working on his attitude. If he could taste and eat something it would be great.
I took Zinc and believe it helped me. Unless his RO says otherwise, give it a try. I know HUP recommends it. Also is he using regular Ensure or Ensure Plus? Ensure Plus has 350 calories and tastes a lot better. I don't know if he can do Carnation VHC but that is like 550 calories. He needs at least 2500 calories a day and lots of protein. I was told 80 gm of protein a day, but I am a 110 lb female. I imiagine larger men need more.
Take care,
Eileen
Tell him to toughen up and swallow the bullet. Ya gotta eat to survive. Could this be a try for attention? I'm not being a smart ass but things happen that we don't know we are doing. Just keep pushing him and giving him an extra hug when he does good.
Thanks to a local bakery and their bakers, I have regained about 6 lbs with his cake donuts, can't handle the dough they make glazed ones or anything else out of, but cake ones soaked in hot coffee work. That and a lot of good cookies work for me along with the soupy foods that don't need chewed. Remember, no teeth, just a piece of tongue, dead jaw bone perforated with holes where it is slowly rotting to just bone. Oh for a piece of real meat or a good piece of veggies. Bit I am making it.
That's the ticket Jim, find the joy in what you can do.
I remember a response you gave me two years ago when I was whining about getting stared at when I made my first attempt at eating in public after my surgeries. I am disfigured but at the extreme weight loss made it appear even more so. I went into a cafe and was trying to eat a caramel sweet roll and EVERY person in the place wouldn't stop looking at me.
Now I must've been a sight, coffee and sweet roll all over my face and shirt, to be honest I don't blame anyone for staring, however it pissed me off and I was going to just write off eating solids altogether and never in public again. I remember you telling me Jim that if you could just eat a caramel sweet roll you wouldn't care who watched...in fact you would probably have your meal paid for from one of the onlookers . It cracked me up and made me realize how fortunate I was for what I could still do. I want to thank you for that Jim. Love ya buddy .
Eric