Author Topic: Irrational But Real Fear of Feeding Tube - Help!
Joanna
"Above & Beyond" Member (200+ posts)
Member # 41

 
Here's the deal. I sat without batting an eyelash while the surgeon described in great detail the peeling back of my cheek to get to the bone. All fine. However, I just read the detailed procedure for the insertion of the PEG feeding tube that has been ordered and I am bouncing off the walls, thinking of changing my name and leaving town, and other assorted ill-advised actions.

Will someone who has experienced this please tell me it is not the medieval torture I have worked myself up to believe it is? It is not the idea of having it that freaks me out, but the getting of it.

I know, I know, I have far greater problems than this, but this is the sticking point.

I will very much appreciate any assistance in getting my poor, addled brain back on track.

Joanna the Unraveled
Posts: 160 | From: Pacific Northwest | Registered: Mar 2002  | 
Brian Hill
Administrator
Member # 4

 
Of all the things that I was put through during my treatments, this was the least discomforting procedure. It took all of about 15 minutes. I can't believe that I had such an apprehension of what turned out to be a really simple deal. I think that the part I found the most disconcerting, (before it was actually done) was that having a tube and a bag that attached to it when I wanted to eat, was....how I imagined really sick people to look. Is that dumb or what? Here I am with stage three cancer, and I'm thinking about looking like a really sick person. Unbelievable! Perhaps it was the visual confirmation that I WAS really sick that bothered me. It sounds really weird to think that you are going to have this moveable tube in the front of your body, but once it was there, most of the time it was just under my shirt and out of sight. When it was time to pour in my 3-4 cans of Ensure, (three times a day) the bag went on and I hung it up on a nail by my easy chair in front of the TV....that was it. By the time I had the tube put in, (by the way, this thing is smaller than a pencil in diameter), I had gone weeks struggling painfully to swallow things. I couldn't even get down canned protein drinks by the time my doctors said, "that's it, no more weight loss." And 11 months later when it was time to take it out, (I was living in Santa Fe, far away from MD Anderson) I just snipped a little thread in it, and it pulled right out. Freaked my wife out! She wanted me to go back to Houston to have the stupid thing removed. Totally painless, didn't bleed, I didn't leak all over the place like I thought I was going to...it was just no big deal. Believe me, compared to everything else, this is a cakewalk.

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Brian, stage 3 oral cancer survivor. OCF Founder and Director. "The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant."
Posts: 364 | From: Laguna Beach, CA | Registered: Mar 2002  | 
Joanna
"Above & Beyond" Member (200+ posts)
Member # 41

 
Thank you, Brian. I appreciate your response. I shall proceed, then, with the idea that it is a cakewalk. You may expect to hear from me if that proves not to be the case (grin).
Posts: 160 | From: Pacific Northwest | Registered: Mar 2002  | 
Brian Hill
Administrator
Member # 4

 
While all people's tolerance of things is different, radiation sickness was one of the worst things I've ever been through. Come to think of it, that neck dissection was pretty low on life's list of pleasures as well....... While I know that you are just joking, it's all relative. But I have yet to talk to someone who wasn't glad that they had the tube in retrospect. Given all that, the one thing that is completely subjective, but universal at the same time, is the fear of the unknown.

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Brian, stage 3 oral cancer survivor. OCF Founder and Director. "The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant."
Posts: 364 | From: Laguna Beach, CA | Registered: Mar 2002  | 
Joanna
"Above & Beyond" Member (200+ posts)
Member # 41

 
Must have been something in the water; I'm okay with the tube thing today. HOWEVER, would you care to expand upon your comment regarding neck dissection? I may have failed to mention the new, egg-sized lump on my neck that prompted the "d" word from the surgeon. Not a cakewalk I would guess? (Have you given any thought to charging by the hour for hand holding???)
Posts: 160 | From: Pacific Northwest | Registered: Mar 2002  | 
Brian Hill
Administrator
Member # 4

 
If I got paid by the hour for this, I would just about be ready to retire in Tahiti.... Unfortunately, my $1.00 per year salary from the foundation this year won't allow it. Believe me, I am really happy to help, hand hold, or whatever to assist you in making good decisions and coping with the uncertainties when they come up... Also realize that I am only giving back what someone did for me. Something you too might do for another behind you in this process, somewhere down the road. When I was in treatment, and particularly afterwards when I seemed to be getting worse instead of better for so long (actually a normal recovery), there was a person who answered my tons of questions and emails diligently, thoughtfully, and patiently.....even when I was so depressed and frustrated my tone and attitude would have made a lesser mentor turn tail. I am forever grateful to that person. We are all, like it or not, in a big club. The more we help each other, the easier it is for everyone who is a member of this unfortunate band to get through this crappy place, and onto the rest of our lives. No one gets through this alone, and no question or insecurity is unimportant.

Regarding the neck dissection. Between the radiation and the surgery, it was defiantly the lesser of the two evils. It didn't require a daily "dealing with it" like the long recovery from nuclear medicine. I went in one day and went to sleep, and that night it was over. Two weeks later, most of the discomfort from the procedure was over. Although I was definitely pushing that self-dosing morphine button by my bed like crazy the first two days. (Of course they don't tell you that it will only give you so much per hour, regardless of how many times you push it.) I almost wore the paint off of the damn thing in the first 48 hours. On the third day I went home. Yes, with enough staples in my neck to look like I had a zipper running around it, but out of there and home. I might add that for as bad as I thought it looked then, the scar isn't any big thing now, and isn't that noticeable. There were about 4-5 months of having a weirdly lumpy neck, as the lymph fluids which no longer had a place to go, built up in the surrounding tissues. (See the pictures of this in the people section, founders story.) They eventually found new pathways out of there, and I settled into the look that I have now. While I am missing a pretty good chunk of the right side of my neck, most people don't notice at a casual glance. Besides, I'm at an age now where my vanity is waning.I'm just glad to be here, and enjoying life.

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Brian, stage 3 oral cancer survivor. OCF Founder and Director. "The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant."
Posts: 364 | From: Laguna Beach, CA | Registered: Mar 2002  | 
Joanna
"Above & Beyond" Member (200+ posts)
Member # 41

 
Now see, Brian? That is EXACTLY the kind of thing I need to know -- the swelling due to trapped lymph. And you can count on me running my mouth (fingers?) if it will help anyone following me. That is but one aspect of the Grand Surgical Adventure, but one which would have occasioned wasted worry time had I not known about it in advance. Scars? I don't give a grand hoo-haw (quaint regionalism) about those. At this point I will settle for the side of the grass that's green, with all margins clean. Thank you, AGAIN!

Joanna, Reassured
Posts: 160 | From: Pacific Northwest | Registered: Mar 2002  | 
Ilene
Supporting Member (50+ posts)
Member # 116

 
I was also totally freaked by the idea of the PEG tube. When I was having my tongue and neck surgery (actually 4th surgery but that's a long story for another time) I told the doctors I didn't think I could deal with the possibilty of not speaking or eating again. As it turned out I was able to do both after surgery turned out to be less extensive that feared. However, I had the worst case of radiation burn from that treatment that any of my local docs had seen. I refused the PEG tube for many weeks and was hospitalized on IV nutrition until I was so ill that the docs told me I had no choice but to take the tube. Of course for me it was major surgery because I'd had previous stomach surgery. However the surgery went fine and didn't even add a new scar because the used the old one running down my middle. I had the tube 3 months - I didn't like it but I will agree it was necessary. As usual for me the removal was not as easy as the one described in another message but still was a fairly simple office procedure (I guess I do have one new scar - the small indentation where the tube was).
Posts: 50 | From: Duluth, Minnesota | Registered: Apr 2002  |