Deb,

Sorry, just kidding about the yanking part. I thought everyone would recognize the dark humor.

I didn't have the Peg or a ND and I fought my docs daily on the Peg issue as I lost a ton of weight but I did survive in spite of myself and I also have never had swallowing issues. So I kind of push the swallowing issues more with people that went the Peg route because they do have the ultimate fall back position just in case the swallowing just can't, at all costs, be done. Unfortunately I read about many that just use the Peg because it's there and then they talk about post Tx swallowing issues that MAY have been eliminated by swallowing more. Just trying to help, that's all.

David,
I am laughing because I know you ARE half serious, half kidding!
Believe me, the idea is appealing.....but I am afraid she would waste away in front of me.
A little of the fight seems to have left her for the moment, I think that is what upsets me. I think it is the discomfort, the fatigue and feeling a little alone since the daily treatments have ended-the daily support of the RAD department and other patients has ended. We will just continue to be there for her and get her back on track..

Liz

Liz,

Believe me this is the worst of the worst for her right now. We all felt like death was right around the corner the 2 to 3 weeks post TX and a lot of us were admitted to a hospital for a day or two but the ironic thing is one day soon she will wake up and know that she has just walked thru that dark tunnel and her recovery will begin it's long journey. That said, it is extremely important to get as many calories in her stomach so her body can fuel it's recovery. So more fuel vs less Peg first and more swallowing vs less Peg second.

Liz - you hit the nail on the head when you mention the alone feeling that comes at the end of treatment. This happens to a lot of us and to caregivers, too! At the end of treatment the previous "normalcy" and routine of the trips to get Rad Tx and the support of people who had become familiar have all gone away and you are left with that "what now?" feeling. It's a change and any change even if it's for good carries a lot of stress with it. It can lead to depression, but if CG and survivor can keep in mind that there is a turning point towards a new normal just around the corner, it can make things less stressful. Be sure to notice any improvement no matter how slight and celebrate the event loudly! When my son was first able to swallow two grains of rice with his chicken broth I jumped up and down and yelled hurray!! That light is coming soon, soon! Keep your eye on it! (and push the swallowing.)

OK, David...I mostly thought it was just a momentary, throw it out there comment....I have those moments on the board...but most of the time, my thoughts are so sharp, I would get kicked off if I wrote them (my worst peeve...people who newly post asking questions without taking time to read/research the content of the OCF website and this board.)

I do see where the PEG can become a crutch..Bill still talks about just not being hungry at all, ever, during treatment. At his worst, I would give him a small bottle of Gatoraid Rain and tell him that it needed to be empty at the end of the day...that was my way of seeing that he was swallowing something! He was a good patient and, for that, I am grateful.

Kudos to all you caregivers...it's a delicate dance but ultimately you have to be tough for the best results.

Deb

I think you lot are expecting a bit much at two weeks post tx.

Robin had rads to both sides of his mouth and the floor.At two weeks post tx he had not one cm of lining in his mouth,that wasn't fried to a crisp, infected inch wide furrows down both sides of his tongue,thrush,sleeping 18 hours a day,and on more medication than i could fit in the cupboard.You all told me this was normal and would get worse before it got better,which it did for the next three weeks.I took complete charge of his nutrition and hydration via his PEG,and on some occasions he didnt even wake up when i gave him his feeds.Dead skin sloughed off his mouth,the grooves in his tongue started to heal,and the thrush cleared up.When all these issues were redressed we started on the eating and drinking.
A PEG at two weeks post tx isn't a crutch its a life saver if things are very badly burnt and you have had rads from all sides,so i would have to say that its too soon to start bullying,that justs puts stress in to the mix which you don't need,and can do more harm than good.

For those who managed without the PEG,i admire you and can only say that you were very lucky for those who cant i would say dont push too hard too soon it can be very counterproductive.

Hi Liz,

You're right too, that is why I put the question out there- I need to hear it from all sides. It IS still early, sometimes you just want your friend to get better quickly, and you forget the physical trauma that they have endured.
Mary's mouth is still somewhat raw and swollen, luckily no infection at this time. My concern was that her lack of swallowing not only had to do with the discomfort, but was also fear-based. I just want the best possible outcome, realizing there will probably always be residual side effects.
I see my role as supportive only, and I would never want to cause any more stress, there is already plenty of that-impending surgery, long recovery, etc...
Thanks for another viewpoint.
LIz

Liz(Cookey),

Since I was the one using the word "crutch," I want to clarify my position on the PEG tube. I definitely don't consider it a crutch at two weeks post treatment - it was a godsend and a very welcome asset to Bill's overall outcome.

I merely meant that long term, for some, without hunger, it would be easy to just use the tube and not eat.

So....don't include me in the "lot"....I am a PEG advocate and I believe in being an involved and yes tough caregiver and that this can be achieved without being a bully. I think, if you asked my hubby today, he would say that he never felt bullied or stressed by my attention to all details of his care.

Deb

Oh dear, i seem to have fallen in to the written word not conveying the intended feelings.All i was doing was trying to put forward another point of view,and looking at things from my own personal experience.
As is usual in answering these questions the only experience we have to draw on is our own.Luckily the person asking the question seems to have understood that there is no set rules for recovery and is receptive to everyones different slant on things.
I would guess that is why she posted the question in the first place.

I neither said nor meant any personal criticism,and i apologise if any was taken.
liz

No apology needed Liz...I just wanted to clarify my position and not be included in any "anti-PEG, suck it up or else" group. When I reread the entire thread..I really think that we all just agree that getting a little something by mouth as soon as possible is a good idea (unless there are restrictions against it for aspiration problems and such.)

Your viewpoints are always welcome to me, I appreciate your candor and obviously, if I have issues with something will say so.

Deb