Will I ever swallow again?

I also had a hard time

I also had a hard time getting back to eating. I had sessions with a nutritionist as well as a speach therapist. The two of them working together gave me stratagies and food combination ideas that helped to get me to the soft food level. 

My eating recovery is taking a little longer due to other complications and food allergies but in any case slow and steady wins.  Celebrate the small victories.

You are 6 weeks post treatment? You are doing great! 

Deb

 

oceangoer said:

Hi Deb

Yes 6 weeks but I don't feel  like i'm doing great (like I said I'm fighting the poor me's). I feel like I'm letting my 14yo son down by not being able to do things with him I know he wants to do, Selfishly because I can't eat, My wife is saddled with everything while I conveless. I honestly feel useless

 

It is difficult to sit back

It is difficult to sit back and watch your family hold it together for you. I am sure we all have had these difficult days. I know I did. And some days ya just need a pityy party, and thats ok too, in my book!

BUT it is not selfish!  I know you have heard all the words of wisdom...one day at a time, it gets better, give youself time...and more, so I wont go on, but you do need to find a way to believe them. Like I said my recovery has been slower than most on this site, so I got the poor me's often. I never made it to the angry stage but sure had a good case of the guilts when my husband would call the neighbours in to babysit so he could go out to get groceries or my next round of medications. Or my kids came from out of town six weekends in a row and all I could do was lay on the couch. 

Hope you're day goes well.

D

 

 

Hi Tim,

Hi Tim,

Billie explained it so well! I had a PEG tube also, and am SO thankful I did. Double edged sword for sure, but for me it saved my life.

I also had scarring from both surgery that resected the base of my tongue and four tonsils removed, coupled with 33 rounds of Chemo Radiation (Mega doses of Cisplatin).You described exactly how food felt for me too. I found that the Odwalla Soy Protein drink went down perfect and was my first "gateway" food that led to my PEG getting removed 4 months after treatment ended. I am one year out at this point and now can eat cooked RARE meats like filet mignon and pork. Also, just recently I can now eat slightly hot food and bread and corn chips that I could not have dreamed would ever happen a few months ago. I do still struggle a little with the food getting a bit stuck, but just make sure I always have some water or whole milk around close by.

I promise you will get better. Keep practicing every day. Progress is incredibly slow but it does happen!!! I also started weekly accupunture to help kick up my saliva levels and that has helped alot.

Nancy

Do the excercises!

Everything the therapist gave you, and more, keep pushing, and eventually, it'll be.. "hey it worked" or.. "I didn't have to struggle"

Trust me - I'm in the "wow that was easy" phase.

I think we undertand oceangoer

I didn't have near the side effects you are going thru but still get super depressed somedays just thinking about what I went thru, if it will come back, not enjoying food, etc. Then I try and tell myself I got lucky, have insurance to pay for all this treatment, can still eat even if it doesn't taste good, have a wonderful S/O that helped thru all of this.

I can only hope it gets better for you and think it will.

Just incase you are not totally ok yet.

Hello oceangoer,

I feel like I am befind the curve on any advice I may bestow to you and that which has been passed on by the informative group of H&N members above me should take you far. 

I am 6 years (give or take, this is not an exact science) ahead of you, but I have traveled a road which stopped at many of the same side effect roadside attractions.  I did not get back to the attractive statistic 95% to 99% normal eating for 7 months (210+/- days).  For me the big turn offs were the awful feel of food and the taste no taste of food.  There were many surprises along the way. Corn-on-the-cob was great from almost the first day post. I did not eat a lot of it, but the corn was a hint of things to come and to try a variety of foods all the time and I most certainly did.  I read the hints and help provided by the H&N forum, but most of us are unique and special people and need to blaze our own trail, so that is what I did. To make this as short as my ego allows, I drank many smoothies, burned up 1 blender and on day 210 when I had a successful turkey sandwich for lunch I unplugged the blender and returned to the land-of-the-eaten.  I was never angry with my eating situation, I was happy to be having good scans and no cancer.  I traveled around with a little Igloo Cooler. I had an ultra-small real food meal with my parents every Sunday and continued to drink 10 or more glasses of water, coffee, smoothies, etc. a day.

I had trouble speaking clearly and loudly and went to speech therapy were I learned to increase my volume, do mouth and throat exercises and was told by many in the family that I was doing much better and I truly was.  It was much easier to answer phones and such.

I worked on my swallowing starting at one or two weeks prior to my first treatment.  I was lurking at  the H&N forum, behind my wonderful inquisitive wife and learned from the H&N members busy on here in December 2011 & January 2012 that drinking water and swallowing could be great asset.  They were right and it was. 

I had my difficult times and areas and still do. The drinking lots of water and wallowing often are the one area where I can toot  my horn and hope the newbies are listening.

Onward,

Matt

Ask...

I have to take Omepantoprazole (sp) anyways, but Zantac (OTC in Walmart $4) would do the same - ask your Dr if you can take it. it would help with what sounds like GERD.

Jumping in new to this site. I had cancer of the epiglottis back in 2006. Like many I went through 7 weeks of radiation treatment (3.5 at once a day and 3.5 at twice a day) what a pain. Also had 8 rounds of Chemo all done at the Naval Medical Center Portsmouth, Virginia. I unfortunately, had to have all my teeth surgically removed prior to treatment (mostly due to some pre-existing dental issues, so not really cancer related.) The Doctors and technicians where all 1st rate in my opinion. I found the I really got sick during the six or so weeks after treatment ended. During treatment I had a PEG tube installed to use for eating. I lost about 225 pounds during treatment and the aftermath. My ENT advised that the tube could be removed when I was taking nothing by tube and losing no weight. That happened about 5 months after treatment.

At that time even with the damaged epiglottis I was able to eat most anything and even better after I got dentures. So I was eating and swallowing normal (or so I thought) without any real issues. Then about late 2020 my new ENT took some biopsies from my throat and removed some tissue. After that I began to have issues swallowing. Like Grandma, I went through Speech Therapy even though I am not as diligent as I should be on my exercises, I learned to eat fairly well. Within the last year that has all changed. Now at the point where eating is a struggle and taking meds is a royal pain as I find it almost impossible to swallow them.

I had a recent Chest CT scan which noted a lot of stuff in the upper part of my lungs, thought to be an infection. So I completed a round of antibiotics and was referred to a Pulmonologist. His recommendation was another PEG tube for nutrition and medication. The eat for pleasure. Pretty sure I'm going to find a second opinion. Plus reading here and seeing what others are doing is inspiring. I feel this Doctor felt that have him do this and I'm done with him.

Well, I have rambled on way to long. That each and every one of you for your inspiration and I wish you continued improvement.

As has been said "i don't mind growing old it is a privilege denied many."