Will I ever swallow again?

oceangoer

Hello,

I have to preface this with the fact that I am fighting the poor me's. I finished treatments March 8th and I started seeing a speach therapist for swallowing therapy. I feel like I will never be able to swallow again. If I drink anything thin like water it goes down my airway, anything thicker even soft peaches cut up gets stuck in my throat. I can sip yogurt drinks slowly and they are of a consistency that goes down slow enough it takes the right path. My throat is still sore and my voice is shot I'm just depressed as hell.

Tim

oceangoer

Hello OkCnative

I do have a peg tube and I'm glad I did. I usually have a high tolerance for pain but the razor blades in my throat were unbearable. I also did the swallow study and my epiglottis is rigid so it doesn't work like it should. I commend you for eating through the treatments it must have been tough. I ended up in the hospital for a week right in the middle of my treatments for the flu and pnumonia which is where I really stopped eating just throwing. I do the excersizes and I'll keep trying it just seems so far away right now

Tim

debbiel0

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

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

 

debbiel0

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

 

 

Billie67

Oh gosh, I so know what you

Oh gosh, I so know what you are going thru. I am now 5 years out but I remember it so very vividly. It took me a while to be able to swallow foods, even the softest and most easy for most to swallow stuff. I remember it took me over an hour to eat a litte yogurt cup. That is no joke. Many on here who are finished can vouch. That being said, it WILL get better, I promise. There are still things that are difficult for me to swallow but its not becuase of mouth sores or the terrible broken glass feel in my throat. It is simply due to the fact that radiation makes things tighter and then add on scar tissue from sugeries. I will tell you this, just a few weeks ago I had esophageal dilation and what a world of difference! Depending on the severity of dilation needed, it can be done in the office or in the OR with follow ups done in office and then maintained at home. I have one more to do in the OR and honestly, I can't wait! I am so happy to be able to swallow the more dense foods and not take 25 attemps of swallowing to get it down only to have to gag it back up or choking all together. Sorry to be so graphic but it was becoming quite the task to simply swallow food. I am so happy I had this procedure done!!! My dr made me wait until I reached the 5 year NED mark before he would do the procedure. Not sure why but its ok. There were plenty of things I was able to swallow during the 5 year wait :-)

You will be able to swallow, you will! I did over 2 1/2 years of speech and swallow therapy and had at least 3 swallow studies. Do all you need to do on your end and I know you will start feeling like yourself before you realize it.  

I will tell you this, the thinnest of things like water or juice were really tough at first. I would just aspirate it and choke. I had better success with things like jello, pudding, yogurt, mashed potatoes and such. Perhaps give that a try??

 

nancytc

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

debbiel0

I learnt something

I learnt something interesting. Might help you out too. 

I had a barium swallowing xray today. Eating a small bite of banana took three swallows and a drink of water, when I was looking straight ahead. If I turned my head to the right , then swallowed, it went down first try no water needed. I was amazed!  Downside..going to have a crook in my neck from looking to the right all the time!

 

 

SuzJ

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.

oceangoer

Thank you all

I prefaced what I wrote so that you know that I understand I'm just in the poor me's. It just seems like so much of myself will never be the same from my hearing to eating and tasting and even just the stamina to go for a walk isn't there, I vomit at night and in the mornings as I now have a bad gag reflex and the mucous sets it off while I sleep. I am off to the speach therapist now I'm certainly not giving up I just have to keep in mind that baby steps

Dean54

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.

OKCnative

Sorry to hear this. Did you

Sorry to hear this. Did you use a PEG tube for feeding? I only ask because I was dissuaded from using a PEG tube for that very reason.

Regardless, I found myself for a time only able to swallow thicker liquids like Boost VHC. Water made me gag and anything thicker than Boost hurt so bad my throat would bleed.

I was told that if I just "powered through it" it would eventually get better as long as I kept using my throat daily. Sure enough, it only laster a couple of weeks. What pushed me over and able to swallow literally anything was a swallow study just after treatment ended. When I could see the food and liquids going down and I could see what was causing the 'weird feeling' (my now greatly shortened epiglottis) then I was much more confident to eat. They even had me choke on larger items and pills on purpose so they could show me how to clear my throat. With that confidence I began eating any and everything.

I was also shown several exercises that I had to do literally 100+ times each day during treatment to fight off radiation fibrosis and other rigid throat conditions. Do you do exercises and did you do them during treatment daily?

Good luck to you!

oceangoer

Thank you

IThank you so much. I wonder sometimes if I deserve this If I did something to bring this on. I guess all I can do is move forward and try and heal

Royemken

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

 

Hang in there

I am 6 weeks post my last treatment as well and I hear ya.  I am writing this at 3 in the morning because I cannot sleep at night.  I feel useless as well, don’t do much during the day (on LTD) and have way too much time to think about what others are doing and I can’t.  All I can rely on is that I WILL get better and I will remember these times as another way to be thankful for what I have left.  It sucks, and yea it bothers me like I’m the unluckiest person around, everyone seems to get better and I’m not, etc.  But I have to remember that my timeline is my timeline, and my faith in myself tells me to hang on, power through, and one day soon I will be able to eat something small.  Then something bigger.  Then a burger.  Until then my daughters know That I am sitting here unable to do things with them, but sitting here fighting so that I can do them once again.  I am showing them what RESILIENCE looks like, and that’s a great lesson.  Hang in there.

CivilMatt

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

oceangoer

Thank you Matt

I really appreciate your experience. I find my biggest issue right now is the burning in my throat which is enhanced by my constan vomiting at night due to the thick mucus and my new gag reflex. The acidity of it just seems to reopen the radiation burns in my throat and it's so uncomfortable to get anything down zI just don't. I know I should force it but it dam well hurts. And my epiglotis is to rigid so thin liquids like water travel down my airway. I am doing the excersizes and working with the speech therapist on that. I guess I'm just frustrated but hearing that I'm not alone in what I'm experiencing does help.

Thank you

Tim

SuzJ

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.

Grandmax4

You will

Billie explained this so well. I , too, am almost 6 years out, and I think Billie and I rode that bus from hades together, glad to know she's doing so well. My cancer decided to grow right on top of my epiglottis, so it was removed. I had many ask me, how do you expect to live without an epiglottis, I said, my Doctor, who I'm in love with, told me I would and I trusted him. It was a tough road to where I am today, do the swallowing exercises, learn the super supra-glottic swallow. You will swallow, you will eat and drink, I've been there and done that.If I were you, I would ask about acid reflux, I never knew I had it, but, it's a terrible, bad tasting, pain..a pill a day takes care of that for me. Keep eating that blue applesauce, a year or so, it'll be a steak

Spiggy

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."