Hi Everyone,

Well, Mary finished RAD about two weeks ago, and as I expected from reading things here, this has been the most difficult time. Thick, copious secretions and a moderate to severe amount of mouth and throat discomfort. With a LOT of encouragement she has increased her pain med enough to tolerate the discomfort.
My concern is regarding a swallowing issue and the PEG tube. She is very reluctant to swallow, she really avoids it at all if she can. Not even swallowing water at this point, may 2 to 5 sips a day. She has become totally dependent on the PEG tube, I sense not only physically but emotionally as well. This has surprised me, because she really didn't want the tube at all. Now she says it is "just easier".
My question is how much should she be "pushed" to swallow? Her family is extremely supportive, but not pushing her to swallow at all. I think it is more fear than actual pain. Is this perfectly normal? Does she just need more time? Or should I be the mean friend and start getting bossy?? I can be really good at being bossy (at least that's what my husband says).

Liz

She has to swallow . It's time to be the "boosy" one and do your best to make her do it. I call being bossy as caring. LOL I wish I had someone bossing me. We all need a little boost to get our batteries charged.

Swallowing is very important and the lack of it can lead to a lifetime of swallowing problems. Nutrition and hydration is almost most important now but you have to encourage her to wean herself off the Peg ASAP.

Also tell her the 2 to 3 weeks post TX are the worst time for everybody and soon this ordeal will be behind her.

Amen! to what David said! at exactly 2 1/2 weeks post TX my son started feeling a whole lot better! Liz - it's good that you know how to be "bossy". When my son was avoiding drinking or even sipping soups, and losing a LOT of weight, Amy in the Ozarks (JAM) told me to "put my Nurse from Hell hat on" and I did and it worked!! Swallowing is painful, - my son told me it felt like sharp knives were piercing his throat. It is hard to know when to go softly or when to get "firm" but if it gets her to make progress - you can always apologize later for the bossiness.

Go ahead and be bossy. My dad's line was "this hurts me more than it does you" often followed by "its for your own good" was used for everything from telling us no to pulling a comb through our hair as he helped Mother by taking care of us.
Malka

Definitely, encourage swallowing by any means. Otherwise the throat can completely lock up. At least that's what the docs told me.

Thanks once again to everyone. I knew I had to get bossy-just needed a little push. Funny, I can be really bossy with patients-not so much with a friend. But as Anne-Marie suggested I'll put on my "Nurse from Hell" cap and get her moving!
And yes Anne-Marie, she also describes it as knives in her throat.

Liz

Maybe have her start out with a small goal, like one feeding a day she will try a cream soup or one of the carnation vhc drinks.
That is what I did in order to retrain myself on how to swallow. I was afraid to swallow anything at first. It took me a while to get those swallowing muscles working again.

I also rinsed my mouth out a lot with the baking soda/salt water solution to break down the mucous. I mixed a table spoon if each in one quart of water, which lasted me about a day.

You could always yank the Peg out and tell her to start swallowing. Just a thought.

David,

I am not sure you were totally serious about yanking the PEG tube??

Just a thought that not everyone has the same pain threshold and can push thru the pain and swallow enough to maintain proper calories. Bill has a high pain threshold (believe me, he has endured very painful things, but he was ever so grateful to have the PEG when pain was at its worst. He was able to wean off of it when the pain got better and was eating exclusively by mouth at three weeks post treatment. He was also encouraged by Moffitt to keep the PEG until his first scans were OK...just in case.

As you can tell, I am a big advocate of continuing some type of swallowing during and after treatment but I am also an advocate of the PEG remaining until it definitely isn't needed any more.

Deb