HEADLINES
Head & Neck Cancer Support Group
Kirklin Clinic – Birmingham, AL
distributed by American Cancer Society, edited by Pat Sanders
March 2002

ME AND MY TUBES

By

CAROLE RABIN and DEBRA RABIN ABRAHAM, MSN, RN, C

Living with a feeding tube for any length of time is difficult and put limits on my life, mainly because of the fear of the unknown or of going out and worrying about what might go wrong when the feeding tube got clogged. It happened 3 times so I was justifiably nervous. It was definitely easier to take care of myself at home, or where I was comfortable and could take care of any problems that might occur. Going out could wait.

I started out with an NG (Nasogastric) Tube. Since it fell out the day after I was discharged from the hospital, the physician was called and he told me to go on liquids to see how I tolerated them. This lasted about a week and due to lymphadema, swelling in the throat due to fluid retention, everything backed up and was coming out of my nose and mouth. I was very sick then and had trouble breathing so back to the hospital I went and after suctioning all that could be suctioned out of the stomach, using a tube that went through the nose and down the throat, I was admitted and a PEG Tube was inserted. This was done by endoscopic means with the use of floroscopy to pinpoint the area of the puncture and guide it into the stomach. I was given sedation and was not awake for this procedure. The Peg Tube is held in place with either a flange or a few stitches. My first one had a balloon flange, which had to be deflated upon removal. The second was held in by a few stitches. There are many different kinds of tubes. I was taught how to care for this one, how to use it, and what to do if problems should arise.

I never had any cravings for food as I was just too ill to even think about that. It was difficult enough to get the proper amount of feedings in because of being so sick. But I did it, knowing how very important it was to getting my strength back, and being able to heal. I was on a supplement called Respalor which was very high in calories and rich in nutrients to aid my recovery. After 4 weeks or so, I was put back onto liquids and then soft foods, all the while flushing my feeding tube several times a day. About 4 weeks later the PEG Tube was removed.

This eating odyssey lasted for about 2 weeks post the removal of the tube, when I started to bleed from my nose, mouth and stoma. Back to the hospital I went. They did testing, packing, 4 blood transfusions, and, of course, another PEG Tube. I had developed Cellulitis and 2 fistulas. Therein lies a very major problem. The Cellulitis was in the area of the neck where the surgery was, as were the fistulas. I was cauterized, and packed up the nose and in the back of the throat and wherever they located bleeders.

At this point, I was weak, so weak that I could barely stand up, so frightened of everything, that I did not know how I was going to come through this.

I was on the feeding tube for about 4 or 5 weeks post this hospitalization, when I started liquids and soft foods again. About 2 weeks later, my neck appeared red and felt hot, and I did not feel well. I went to a hospital nearby as an emergency. My family doctor checked me for Cellulitis, which is exactly what it was again. He also ordered a Barium Swallow Study, which revealed another fistula. I was then transferred to my surgeons’ care at the hospital where all of my procedures had been done.

You guessed it, back onto the feeding tube, which fortunately, was still in place. After another 4 or 5 weeks, and 2 Barium Swallow Studies later, I was healed and on the road to recovery, finally.

My daughter Debbie, who was my caregiver, my nurse, and co-author of this paper, gave me the strength, her expertise, and the love and caring to help bring me to this time in my life. I was very fortunate to also have the support and love from my 2 other daughters as well as my sister. In fact, from my entire family and my friends.

I am now 7 months without a feeding tube and hopefully all will stay that way. If it doesn’t, I know that I am able to handle whatever comes my way.

PEG TUBE (PERCUTANEOUS ENDOSCOPIC GASTROSTOMY)

TIPS FOR SITE CARE

(Be sure to check with your MD/Nurse regarding specific procedure for you)

CLEAN AND CHECK AT LEAST TWO TIMES A DAY

  • Clean around tube at insertion with soap and water
  • Rinse and pat dry
  • Check the area for any changes such as redness, swelling, discharge, warmth or soreness.
  • Notify your MD or Visiting Nurse. (It is important that you are familiar with your insertion site and the area around it. You will then be able to detect if something is not "normal" for you. Never treat the inflammation yourself).
  • Cut a 1 1/2" slit in a 4x4 gauze sponge
  • Place gauze on abdomen and around tube. Secure with tape.
  • Coil feeding tube and secure with tape
  • Be sure to leave 4-5" free as this will make it easier to access

FEEDING TIPS FOR PEG

(Check with MD/Nurse for your specifics)

  • Flush before feeding (Minimum of 60cc of tap water before and after feeding. I used 120cc for each flush. Use large syringe or run through feeding bag).
  • Make sure roller clamp is closed (down) on the feeding bag.
  • Put formula in bag
  • Prime tubing to purge air if needed (place end of feeding bag tubing over sink or trash can. Open roller clamp and allow formula to come to the end. Close clamp)
  • Connect feeding bag tubing to PEG Tube
  • Open clamp and administer feeding as ordered.
  • Flush feeding tube after feeding.
  • HINT-Rinse feeding bag and tubing with water and allow to air dry.

MEDICATION FEEDING TIPS FOR PEG TUBE

  • Get supplies together (syringes, medications and tap water for flushing)
  • Crush medicines that are not in liquid form. If capsule can be opened, empty contents in small amount of water and do the same to crushed pills and let dissolve. (Use pill crusher or mortar and pestle to crush pills)
  • Flush, put liquid medications into syringe and then put into the feeding tube, flush again

NOTIFY MD/NURSE IF:

  • You cannot *flush tube
  • You see formula leaking from insertion site
  • Formula will not flow through tube from feeding bag

*(Flush – use warm water and large syringe. Make sure syringe fits securely at the end of tube. Gently push and pull plunger in syringe)

  • Redness, swelling, warmth or discharge at insertion site.
  • Fever

Carole Rabin Elorac1212@aol.com

Agent Orange Class Settlement

There is an Agent Orange Law Suit that has been reopened against DOW chemical which has nothing to do with the VA. It would benefit any Vietnam Veterans who had throat cancer and think it could be due to Agent Orange to join this class action law suit and possibly get some money. From Jack Henshaw <TunnelRat8@aol.com>
http://www.soft-vision.net/ao_vets/survey/ is the site to check for information.

A Change of Attitude!

I am writing some of this from memory, I did not start keeping a ledger until just prior to my surgery to remove all my speaking stuff. Back in 1995 I started to get a raspy voice that was not quite as strong. I started to cough more, but elected to ignore the warnings. I kept burning the cancer sticks at a rate of about 2 to 3 packs a day. I simply could not kick that damnable habit; I was really hooked.

My voice was slowly getting weaker and more raspy. My family bugged me to the point I could not stand it any longer so I saw an ENT specialist in the spring of 1997, he took a growth off my larynx and it tested positive. I started 6 weeks of EBR, no longer had to shave my neck. I simply loved that steel table and being anchored with the plastic mask so I could not move. Oh yes, I almost forgot, I got two free tattoo’s on my neck. The little dots that they can aim the Buck Rogers ray gun at. I still have them, they do not wash off, I even tried Bon Ami and they are there to stay.

I was strongly advised to quit smoking. Who are they to tell me cutting back wont be just as good? I lasted until April 2000, I was smoking about 1 to 2 packs a day, closer to 2 than 1. At this point my speech was just about gone, my original ENT referred me to a surgeon. I expected his diagnosis, major surgery. He did his best to prepare me for what I would look like and how I would have to learn to communicate. He explained the procedure about me getting a stoma. I also had a short session with a very young, brand new, SLP that knew just a little more than I did.

I did not talk to or see another lary. This to me would have been the most important part of my decision making. I had no idea about all the things I had to learn to do differently, the mucous, the moisture and the many, many other things that changed my life and my lifestyle.

When I woke up I was as depressed as I have been in my entire life. I had a hole in my neck, a tube sewed to my neck that went through my puncture into my stomach and no voice. I certainly was not prepared for the feeding procedures that were coming. I definitely was not prepared for any of this and thought I did not care to live under these circumstances. I had hit rock bottom!

I wrote a note to my wife and told her to tell the rest of the family to leave me alone and not to visit. I asked her to keep my children away as well as all my close friends. I just did not give a damn and could not and would not accept my condition. I found out later this wrecked my family but I just did not care anymore.

For the next 3 or 4 days they kept coming to see me and I ignored them. I did not try to communicate with them but they would not stay away. It was about this time another lary came to see me. I heard him speak with an EL and it changed my attitude. I had a loaner but had not even try to learn how to use it.

Shortly after he left my Priest came in to visit. We had a long talk or I should say we had a long write. I am sure my wife and children were responsible for his visit. While he was there we got out my EL and between the two of us we tried or I should say I tried it. I did not do a very good job, but for the first time he understood the majority of what I was trying to say.

I think this is when my attitude did a complete flip flop. I stopped feeling sorry for myself and considered the fact that I can still see the sun come up every day and look down at the grass. I practiced for a few hours with my EL and got up the nerve to make some phone calls. I called my wife and she understood what I was trying to say. I told her to get dressed and get her butt up here and by the clock she walked into my room in 35 minutes. That was a record. It usually takes her longer than that to just decide what makeup to put on. I got the biggest hug and the wettest kiss I can remember in years. I took hours to get the smile off her face.

I also called all three of my daughters and they all showed up with most of my Grandkids. My oldest granddaughter was senior in high school and when I used my EL she said " Poppi, you are great using your Cancer Kazoo." Everyone had a great laugh, even me. I could not make that sound but I was laughing on the inside. That was the very first time I had even thought about a laugh since my surgery, it broke the ice even more.

April 15 is my two year anniversary and I have learned a lot and have been doing a lot of things. I know how important it is to see a lary and talk and ask about what is going to happen prior to having it happen. I have contacted several ENT surgeons and they have been calling me to speak to patients who will join our group. I guess I am up in the twenty to thirty people I have talked to. I also have been very active in talking to middle school students. I have been keeping a count and am just over 3000 kids I have spoke to in the last 18 months.

In summation, has my life changed? You bet your bippy! Do I live like I did before, you can bet your bippy again. I now have extra hygiene to perform, cleaning and caring for my stoma. Running a humidifier in my house, keeping an extra stoma cover in all my vehicles, not catching a big chunk of mucous requires a clean one if I am not fast enough to get a tissue and get the cover out of the way.

Of course you are well aware of all the things we had to learn to do differently. To say my life has not changed is not truthful. Am I living a full and happy life? (Here comes that bippy again.) You bet your bippy I am!

Ron Gillette. . . .Another-Hole-In-The-Neck-Guy < Poppi8@aol.com>