Having to use a peg tube (feeding tube) is not something usually associated with someone having skin cancer. There are times, however, when this alternative feeding is necessary; such has been the case with me.
My squamous cell carcinoma originated in the skin on my neck, traveled inward and oral, affecting my throat.
In 1990 when I had my bilateral neck dissection, it was necessary for the doctors to place a peg tube (feeding into my stomach) through my nose, down my esophagus and into my stomach.
They started feeding me with a liquid nutrition called Osmolite. I lived off this during and following my duration in the hospital. The Osmolite was poured into a plastic bag and pumped slowly into my stomach several times a day.
Just before leaving the hospital the original feeding tube was removed from my esophagus and a PEG tube (Percutaneous Endoscopic Gastrostomy) placed directly into my stomach.
Not having that tube in my nose made life much easier for me.
After being released from the hospital my wife began to cook healthy foods of our choice and then puree them in a Blender instead of the Osmolite.
I was following a macrobiotic diet consisting of specific whole grains and vegetables recommended for my particular condition by several macrobiotic counselors.
To counter the ill effects of conventional medicine on my body, healthy whole foods aided in the healing process tremendously. It brought much relief to my mind to see myself recovering so quickly.
In only 2-3 months I was able to have the peg tube removed and swallow foods again. Swallowing was not quite the same, but at least I was able to manage it.
Needless to say, I was happy to be done with the tube feeding.
I continued on that diet quite rigidly for about 8 years.
Then, due to some circumstantial changes in life, my wife needed to take a job. When that happened, our diets also began to change.
We started eating out in restaurants for convenience. There were usually one or two health food restaurants in town, but it was not always convenient to go there.
From that point, it became a matter of picking and choosing the healthiest restaurants and making the healthiest picks on the menu.
As our diets changed, our health changed.
I started having a lot of headaches, allergies and bad cases of the flu.
The most damaging thing was that I started having pneumonia every 2-3 years and it was taking its toll on my lungs.
To learn exactly why I was getting pneumonia, Click Here.
It was because of the recurring pneumonia I made the decision to have the peg tube installed again, as suggested by my doctor, this time permanently.
By having the peg tube installed, it greatly minimized the chances of the pneumonia recurring. Again, I’ll tell you more about the pneumonia and how the feeding tube helps to prevent it On This Link.
So for now, let’s stay focused on life with a peg tube and how it really doesn’t have to be negative or depressing.
No doubt, some things are missing.
I have to admit that at first it was very VERY difficult to not put any food in my mouth. So much so, that I cheated probably once every day for the first 1-2 months.
On one of my doctor’s appointments, a nurse asked me if I was having any food through my mouth and I said, “Yes, a little bit almost every day”.
I have to give credit to that nurse because she warned me of the consequences of repeated pneumonia and really rang my bell!
From that day forward, every time I got hungry and wanted to bite into something, I went for 2 cans of Osmolite for my meal. I poured them down my tube, my belly was full and I got some nutrition.
When I realized this made my hunger go away, I could take my mind off tasting anything and go on without a problem. I found I could do fine without tasting and chewing.
In fact, I started feeling like I’m saving a lot of time that can be spent on something else I want to be doing.
One of the first things that bothered me was using my feeding tube in front of other people.
We’re all made different, so this may not bother everyone, but it sure did me!
While tube feeding in the hospital you’re in an environment where one expects to see patients in this condition.
But now, being home, out in normal life …on my job …driving around and doing things I normally do, it presented a certain challenge to me.
I felt like my feeding needed to be completely private.
I didn’t want to lift up my shirt and start feeding in front of anyone.
With my wife, of course it was easy.
With my daughter I felt uncomfortable the first few times. It really took a while to just do it around anyone. As some months passed by I realized that no one else seemed to have a problem with it, just me.
It was then I decided I didn’t really want to let the situation dictate when I can feed and when I can’t.
So I started to take control of the situation my self and became more comfortable in situations where I hadn’t before.
It was just a matter if DOING IT ...and not letting myself go hungry!
I think I now have a good balance between not wanting to be up in someone’s face with my feeding tube and simply finding a comfortable way for me to do it in different situations.
After all, I am up and about every day. I’m not just sitting at home; me and my feeding tube.
When driving around places, I just pull over, park somewhere and spend about 10 minutes feeding through my peg tube.
Recently, I and some family members went to a six hour seminar. In the parking lot I filled up on food before entering. Then, about three hours later, during an intermission, I just said, “I don’t care” …to myself and started feeding right there in my chair.
That was a first!
My wife had carried my “feeding stuff” into the seminar in her handbag, so I was all set; it was just up to me and I decided `who cares, I’m hungry` and did it. After the seminar we went to the car and I filled up again.
I’ve never been much of a `social gathering person,` but I definitely make sure that I do not deprive myself or anyone else of my presence at some of these events.
For the last few years I’ve cooked the Thanksgiving turkey and most of the vegetables to go with it.
I enjoyed the family, the company and it was a pleasure to see them enjoy the food.
Sometimes we have cookouts and I like to be the grille man. My specialties are Mexican Carne Asada and Pollo Asado.
They tell me I’m the best around here!
I’ll sometimes take my wife and daughter out to eat. All I have to do is fill up before going in, then I’m comfortable for some conversation and fun.
Sometimes we get invited out by others and I go. It can be a little challenge sometimes, but usually I’m glad I went.
When I first had the feeding tube installed permanently my wife would make me some blended meals from whole grains and organic vegetables. I also supplemented with the Osmolite and sometimes Ensure.
For the first several years I was able to tolerate a lot of Osmolite and Ensure and that gave me the liberty to be able to do a lot more things like traveling. No cooking, no blending, just open a few cans and there’s my meal. I was ready to go!
I reached a point where I could not tolerate any more Osmolite or Ensure.
It gave me constant diarrhea, bloating and gas. For a while I was able to help it with enzymes and probiotics, but that started not working anymore. I knew I had to start feeding with some `real food` to fix this problem.
Making my own food helped tremendously, but I think from time to time, I’ll always have some kind of digestive problem going on. It’s a matter of what I eat. But hey, …most people walk around without a peg tube and they have some far worse digestive problems going on than I do.
One thing that always helps or eliminates stomach discomfort is supplementing with enzymes and probiotics. This will help anyone’s digestive problems, whether you have a PEG tube or not.
Sometimes the indigestion can cause some discomfort with my peg tube, but mostly it hasn’t.
I don’t know all the whys and why nots, but I have learned to take the most control I can over my own health. The best answer is not always more drugs.
Sometimes in life it takes some things like this to make you take control and appreciate what you do have.
I’m so happy to have such a great wife, an absolutely wonderful daughter and the very best stepfather/son relationship I could have. He and his wife have given me two beautiful young grandsons that never fail to put a smile on my face.
Life is short; each one of us has certain things we must deal with, so why shouldn’t we take control and enjoy to the best we are able?
Links related to Peg Tube
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Updated July 1, 2015
"MELANOMA : “NO BIG DEAL ” IT'S JUST SKIN CANCER!
Hi! My name is Nick and I’m 56 yrs. old and this is part of my story. Let me tell you, I was like a lot of people out there and I had no idea that skin cancer was anything bad. I had Basal cell back in 2007, but that was no big deal and it was removed and that was the end of that. No one told me that it was a type of skin cancer (I looked it up on my computer). But still no big deal, it would not kill me.
But I did know the word "Melanoma"....." --by Nick
Scared to Death!!! - by Shelly
Our Cancer Stories are so similar, mine and Gary's! - by Valerie
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