A question about swallowing....

T,

While I went through a time of difficult swallowing along with sore mouth, tongue and throat, I never forgot to drink water and swallow.  Reading the H&N threads had me convinced that the one thing I could do which would pay the biggest dividends was hydration and swallowing.  Of course during the most painful times I was the slowest, but it does get better and I fully credit the H&N gang for my success.

I did have BOT surgery, but nothing as in-depth as yours.  You must devise your own methods for dealing with these road blocks, be it with pain pills, mouth washes, creams, etc.  Take advantage of all your resources.  Do not let yourself fall victim to malnutrition or dehydration, these are preventable and being strong in body and mind are your first line of defense.

Good luck,

Matt

From what I witnessed as a caregiver, I cannot imagine maintaining a healthy nutritional status through the long weeks of radiation/chemo without the benefit of having a PEG put in before starting treatments.  You will still need to force yourself to sip water as often as you can each day to keep your swallowing ability functional during treatment even when eating is too difficult.  But you can use the PEG to get in the high number of calories needed to maintain your weight and give your body the nutrition it needs to fight.  My son had the chemo port and the PEG put in at the same time.  He was very glad he had both of them.  He also needed gasX for an episode of painful bloating, colace (stool softener), and milk of magnesia for minor constipation associated with pain meds.  It is a good idea to have those kinds of over-the-counter items on hand ahead of time since they are not very expensive and pre-purchase saves making a trip to the store in the middle of the night or when you are not feeling well enough to go out to get them.  It is good that you are being pro-active in preparing yourself for what lies ahead.

Does get difficult.  I am not a physician but what you describe does not sound at all right.  My experience and I would think anyone's expectation would be that as healing from surgery takes place, you pain should lessen.

I had BOT with extension into the left lymph nodes, and my biopsy was done under a general and was a punch biopsy.  I woke up and my throat felt like they'd reinstalled my tonsils and then took them out again.  My ENT recommended a cold liquid diet, popsicles, jello, etc for the first 24-48 hours and then soft/liquid foods for the next few days.  It took me a week to get back to solids, but the pain was controlled by the liquid hydroco. 

When it came time for rads, my onc had a PEG tube set up and it was a life saver.  I don't want to scare you but the best description that I have for what my throat felt like was a freshly skinned knee, dragged through several yards of hot crushed glass then mopped with a couple of coats of fire.  Fortunately it did not last, fading away over the course of a couple of months after treatments ended.

I would definitely get you MD involved, I would not think that your pain should be increasing, perhaps an infection?

T

My doc put the PEG in during my original surgery.  It was not an option, it was mandatory.

I would have died of starvation without it.  Had it in for 18 months.  Was highly dependent on it for 12 months.

Hopefully you won't need it, and can get thru rads without using it, but since you so much pain now, I would ask them to put one in.

that's my 2 cents anyway. 

feel better soon !

T,

I definitely vote for the PEG! Dan has so many issues from not being able to eat. His Irish stubbornness said, if I told you I'd eat, I'll eat. Until that mantra became, you have no idea what it's like, I can't, but still refusing help because he felt so poorly. From the caretakers point of view, it's is excruciating to watch. if you end up not using it, they'll pull it a few weeks after, but something tells me it might come in handy when you get down to small sips. To keep healing through tx you need good nutrition or you slow down healing - no need to feel bad any longer than necessary. 

Meanwhile, Dans surgery, he turned the corner just a day or two after the two week mark, your sitting on the door step of better!

you are in my prayers,

Kari

fishmanpa said:

PEG

I've seen your picture 
Your name in lights above it 
This is your big debut 
It's like a dream come true 
And when you smile for the camera 
I know they're gonna love it .....  Peg.....

I'll be definitely speaking with the surgeon tomorrow. What's one more "minor" procedure right? 

Thanks for the info and experiences. 

"T"

Except, this one really is minor.

J.

jcortney said:

Except, this one really is

Except, this one really is minor.

 

J.

 

I lost all of my muscle mass (what little there was of it) and gained back fat.
I did not get enough good nutrition during treatment because I had no peg.

Take care

Stacey

fishmanpa said:

Caregiver perspective

Thank you so much for the replies from the caregiver perspective. Poor Marcia has had to deal with this too. She feels helpless and I know I'm not helping when I beg her to stop asking if I want something to eat. The PEG will make it easier and make her feel better when she sees nutrients going into my body. I showed her the responses and she agrees as well. 

This is going to be so difficult for her. Food and eating together is such a bonding thing for us. We both enjoy good food and she's an absolutely marvalous cook (Man, I'm going to miss her food!). We've made it a point to sit down together every day and enjoy a meal together, talk and enjoy each other's company and it makes her very happy that I love what she prepares (It's good to be the "Papi"). Since December and the 1st surgery, that has taken a back seat as I healed. I then started bringing food to work so I could get in as many hours as I could because of all the appointments and such. Because of that and a general loss of appetite, I'm not eating when I get home in the evenings (or very little) and I know she's not eating either. She's going to need all her strength to be with me on this journey and I worry about her. 

Having the PEG will give her much peace of mind if she can actively participate in my nourishment. It's not pretty from what I can tell and she'll have some getting used to I'm sure, but she wants so badly to help and the PEG will be key in her doing that, (Can you tell I've pretty much sold myself already?).

I've definitely lost a bit of weight the last 10 days and I only have a short time to put some on before treatments start. We're stocked up on protein smoothie/shake supplies and have the medicine cabinet stocked with the essential over-the-counter meds so we're almost there. (thank you to whoever posted a list of treatment essential items to have around the house!)

PS... Milk of Magnesia was a BLESSING during the last 10 days as I couldn't swallow colace and believe me, you don;t want to break one of those puppies open and mix it with anything! Blaarrrggg! 

"T"

 

First, I'm with you brother.  My wife Jennifer and I just had dinner together.  She had homemade ravoli with a red sauce, and I had a glass of water.  We were talking about what we both miss most is dinners together and having folks over for dinner.  Our lives used to revolve around food, now it revolves around Drs appointments, mucous and sore throats.

Feeding using the tube is not going to be a problem.  It's fast (about 10 minutes start to finish) and will not gross anyone out.  It's a little weird looking at first, but after that, piece of cake.  I feed about every 2-3 hours during the day.  My formula is 375 calories so I need to fit six in a day; sometimes that's a challenge.  In a pinch, I can give myself a water infusion if I didn't do a good enough job hydradrating that day.  When I was really in bad shape and couldn't swallow at all I crushed up my meds and took them through the PEG.

Any questions just ask, but you guys will do fine.

Joe Cortney

Dallas, TX