The recreational eating is something I don’t get. Without knowing it is happening, and with no sensation of it, people who have compromised swallowing, usually from physical and neurological radiation damage, will develop silent aspiration and some liquids and food particulate will end up in the lungs while eating and drinking. While the body can clear minor amounts of this, it ultimately causes aspiration pneumonia. This is different than regular pneumonia as it carries additional bacteria into the lungs, from oral sources. This requires different antibiotics to deal with. If it happens and is treated often enough, people will develop antibiotic resistance, and the pneumonia will become intractable and deadly. A famous example is Director Bruce Paltrow who continued to eat while this was happening. He ultimately died in Italy. There is no indication that the doctors there understood the difference in aspiration pneumonia, and it is possible, but unknown if his pneumonia worsened and seemed unresponsive because of the antibiotics chosen. Nevertheless, this is not something to mess around with.

I wanted to eat real food for as long as possible. I had had a PEG tube for a year during and after treatment long before IMRT and when the collateral damage and pain from the treatments was significant. Years later I was eating relatively normally, but in an 18 month period I was treated, and then later hospitalized for aspiration pneumonia three times. That last time was a very difficult battle with IV antibiotic cocktails to get rid if it. It was clear that the next time I might not survive it.

I got a new PEG, and became NPO or nothing by mouth. No water, no food, no smoothies, nothing. I have been that way for 4 years now. I’ve learned a lot about PEGs and have selected a new design that doesn’t dangle, and I’ve learned to blend a highly nutritious diet of real food which pretty much is the same every meal. It’s chosen for nutrition, as taste is no longer an issue. It has a pretty weird combination of things in it you would never put together in your mouth. The reasons for that in another post. My cardiologist could not be happier about what this diet has done to my blood work combined with routine exercise.I can add weight, lean body mass, even at my older age.

For this post I will just caution about the aspiration issue. I know several people who have died this way because they were stubborn and could not accept their fate. Recreational eating is an oxymoron. You have no sensation that you are aspirating anything. Why would you risk it? B

Hi Tristeve here again. I just read the recent posts and yes, these long term side effects truly stink! I have had a PEG for 18 months now and it is truly a life saver. I must have has aspirated pneumonia 6 times. Then a doctor told me if I don't get a PEG, I will die. Hard truth. These days I am "OK". 95% goes through the PEG. I try to eat and drink a little bit every day, but that may stop in the near future. BTW, as Brian suggests, I do blend my own food, more nutritious, better for me. So I am OK with being a "Tubie" what I really hate is my speech. One on one, in a closed quiet place I am OK, but forget it in a group and I really struggle on the phone. Often just impossible. All that being said I remind myself what my ENT said......it bears the alternative!!!! So, yes, my life has changes so much, but I am still moving and trying to accept the New Normal