Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
Pat Sanders, Editor
Recovering Slowly By Jim Rice, The Villages, Florida
I had just retired and moved to Florida, in the Leesburg area. I had noticed a sore throat on and off for the past year and I now realized that I was losing my voice. A visit to my doctor revealed a diagnosis I did not want to hear. They suspected cancer and I was sent to Shand's Hospital in Gainesville for a second opinion. A group of four doctors confirmed the diagnosis and gave me two options for treatment.
The first was radiation with a 60% probability of success, and the second was removal of the larynx followed by radiation with an 80% probability. I was already experiencing difficulty breathing and, without hesitation, opted for the surgery, which we scheduled for January 10th 2002 before leaving the office that day.
I was nervous and apprehensive until I went into surgery at 8AM. I awoke in the Intensive Care unit at about 10PM. The first words I heard were "My name is Bob and I am here to make sure you continue to breath". With that I fell back to a deep sleep.
Experiencing the sensation of not being able to talk was frightening and something difficult to get used to. I spent ten days in the hospital with my wife continually there for support. While I was thrilled to go home, I was totally dependent on my wife. There was a feeding tube through the Tracheoesophageal Puncture. A swallow test had revealed that I had a pocket in my throat that would catch food so I was waiting for a decision from the Doctors and SLP as to what could be done about the defect. In the meantime, a voice prosthesis (TEP) was installed in the puncture and a feeding tube was installed in my stomach. Continuing to have trouble swallowing, I used the feeding tube through my 30 days of radiation.
I was experiencing a down that I never felt before, was losing weight, and could not get enough from the feeding tube to gain weight. Mentally, I was a mess. I was told that I would keep the feeding tube until I demonstrated that I could maintain/gain weight by taking food orally. This went on for nine months by which time I was dependent on the feeding tube and was afraid to eat for fear of losing it.
I was experiencing pain in the back of my neck between my shoulders. According to the doctors this was probably due to the neck dissection that was done as part of the surgery. I could not raise my right arm above my shoulder and again this was due to the surgery. I would continue to exercise this by lying in bed on my left side. With my right arm laying straight down my side I would try to lift it straight up in the air. I felt helpless, but finally I could slowly bring it up. To this day, I still have difficulty, but it has improved somewhat.
My weight was still down having dropped from 190 to 139 lbs. and I was afraid I would not be able to take enough food by mouth to get off of the feeding tube. On the other hand, I had developed a dependence on the feeding tube as a crutch when I got tired of trying to chew food and swallow.
At this time, I was filled with self doubts, especially about being able to talk reasonably well on the telephone or to be understood by another person. I was having trouble using the TEP with any kind of efficiency or good sound. I was afraid of losing my friends in that they would not really care to socialize with me and definitely felt that people would not accept me. I had hit a bottom, I was not feeling well physically and mentally I was not at all happy and was terribly discouraged. I needed help.
Then, gradually, things got better, a little bit at a time. As time passed, I started to realize that my recovery had to be physical as well as spiritual. When I say spiritual, I do not mean religion. For me. That means: knowing who I am, knowing what I am, and being OK with that. Once I accepted that, most of my concerns went to the wayside and I slowly began to feel better both physically and mentally.
I chose one item at a time to master, cleaning my stoma, cleaning my TEP, suctioning my stoma and above all eating. I would search and try different foods learning how to swallow again. My last accomplishment is the changing of my own voice prosthesis. I had to let it happen rather than fighting it. I regained the weight and, even though I still have some difficulty in swallowing, that is OK. I can still swallow.
This was gradual and my recovery to the point I am at now took about one year. Now I can do anything I used to do except go swimming and can even talk when there is a lot of background noise, such as at a party. My favorite foods have changed and my tastes are very different, but at least I have found foods that I enjoy.
I know it is not easy, but I will not give up. Things will get even better, it just takes time. It has been a year and nine months now and I do occasionally get down or feel sorry for myself. When I do this, I have to remember that I am alive and life is good. I can communicate and still have my friends, people that are real friends and not acquaintances. Acquaintances have gone by the wayside and that is OK. When I am with people, I smile, that tells them that things are OK and that I enjoy their presence. A smile is an open invitation that draws people nearer.
There are those that are not comfortable with my condition and that is OK. I just try to live and let live. It is not my problem or concern. I let them go at their own pace. Life is different now, but it is good and it will get even better.
Sometimes Nurses Learn From Us by Jane Varner
Sometimes interesting possibilities come out of adversity. I was recently hospitalized for a kidney infection, and I found that many on the nursing staff, and even some other patients, were more interested in my stoma than my high fever.
A couple of nurses asked me why I wasn't wearing my collar. I wish I could have come up with a snappy answer on the spot, but I simply told them that virtually all of us lose the collar at some point post-op in favor of a button or simple stoma nudity with a covering.
The first night crew was especially concerned that I wasn't cleaning my stoma properly or that I had too much mucus. I reminded them to take my temperature (103+), and I got their minds off my stoma. I did ask for one of their trach kits because I needed the brush out of it.
My ENT doctor happened to be in the building the next day so one of the nurses asked him to stop by and see me. He laughed when I told him about the nurses concerns. "A little mucus never hurt anybody," he said. He ordered them to put a humidifier in my room and told them to call the respiratory people if they had any major concerns but, otherwise, not to worry about me. I could take care of myself.
The next day, a respiratory therapist arrived and wanted to use a suction device on me or a suction catheter. When I explained that neither was necessary at this time, she left in a huff, saying she would send two people around the next day to see if I had changed my mind.
I am not opposed to suction devices per se. Many larys need them and many others may find them useful in certain climates or at certain times. I've not been one of them and I didn’t need one at this point.
Meanwhile, some of the nurses were interested in the kidney problem, and my fever, while fluctuating, was coming down.
My overall impression was that the nurses thought I was much too casual about what “they” thought I ought to be doing and wondered how I could get away with this button instead of the collar and trach tube. Many nurses may never see a lary post-op on their floor or wing, so if you run into one, don't let them treat you like a newbie. Instead, educate them.
One RN acted proud of me and told the LPNs "She takes care of her own stoma," as if this was some big deal. I laughed.
On the WebWhispers site, http://webwhispers.org, there is a large section full of information from prior needs for those who are facing laryngectomy to after surgery. The information ranges from the most important that we can tell you to the trivial and that includes references to other sites and our own ability to laugh at what has happened to us. This section started as hints from our members to help new people but we have found even the long term lary can learn from reading and many will write in with additions because we have not included their favorite hint or something that person has learned from experience.
You may find the Information Library by going to the home site and following the link or by going to http://webwhispers.org/pages/library/InfoLibIndex.htm
INDEX OF TOPICS COVERED
INTRODUCTION - GENERAL
Facts & Figures
What is Larynx Cancer (Links)
Acronyms and Definitions
Free for the Asking
Foods, Nutrition, Recipes
SS, VA, Medicare, Medicaid
Recommended Reading & VoicePoints
Stoma Care Advice
Stoma Care Equipment
HME (Heat/Moisture Exchange)
Stoma Covers and Patterns
HOW WE LIVE
Travel - Near and Far
Local Laryngectomee Support Clubs, etc)
Newsletters - Reading Materials
Sources of Help
Each of these topics contains varying numbers of suggestions, hints, and references. Some are new and we are working on them. We are always looking for additions in every category. To give you an idea of the kinds of information we have available there, I have selected just a few examples from the category of OTHER TREATMENTS/Radiation: WHAT TO DO ABOUT RADIATION BURNS
When I got radiation after my surgery at MD Anderson in Houston, a nurse in radiation recommended RadiaCare Gel, for which I needed a prescription. But a nurse or other non-MD health professional can prescribe it. The manufacturer is Carrington Laboratories, Irving TX. website is http://www.carringtonlabs.com. Phone 1-800-358-5205 or 1-800-527-5216; the first is on the package, the second on the web site. Not all pharmacies stock it, but they should be able to tell you where and how to get it. I found it helpful in taking some of the sting out of radiation burns and in keeping the skin from drying out completely. It is a water-based gel, NOT petroleum based like Vaseline, which is not a good idea for burns. You have to wash it off before radiation sessions. Your skin should be free of goop before each treatment. But it feels pretty good afterwards.
Seems like I was given a different med each week by the Oncology dept where I had my radiation.. I also found that aloe lotion from Crabtree and Evelyn( which my granddaughter gave me for Christmas and it smelled good) was as effective as any. I remember being told by the technicians to have the skin clean and clear of any lotion or medication at time of treatment. The Home Health Nurse had told me to put on some cream around the stoma to keep it soft but I found out that was a definite no-no!
I began using Aquaphor before the radiation burns began just to keep my skin moist. Of course, it had to be washed off before the treatments. I found that it helped reduce the effects. I still had signs of skin darkening, but I had no discomfort.
I've used Aquaphor around the stoma area when needed, the nurse has free samples. Ask.
Many of us have found the Aloe plant very effective against radiation burns. You can cut off a leaf, slit it open to get the gel and smear it on the skin. It is almost instant relief for a burn of any kind and is well known as the "Burn Plant" that many of us keep in the kitchen window for fast use on a burn when cooking. Be careful of lotions that "contain" aloe since the other ingredients may not be good for your skin. You can find 100% aloe juice at the health food store in bottles. Some people swear by swallowing a spoonful to coat and soothe the burn inside the throat and it is made for oral consumption.
Pat Wertz Sanders
I am a firm believer in aloe vera—from a health food store, in dark brown glass bottles. My favorite brand is Lily of the Desert. Aloe Vera is proven, in the real scientific meaning of the word, to boost the immune system. It is also proven to help wounds heal without scarring and decrease swelling. You can get Aloe Vera in gel form or in juice form but don’t use it internally unless it is approved for that. I like the gel because it can be put on the neck and stay there easier than juice and I have the mental image of it sticking to the inside of my throat better. I would take two ounces morning, noon, and night—from a shot glass, I would just ‘shoot’ the first one, and then let the second one dribble down my throat and ‘coat’ it. It will cause diarrhea is you take too much. I also would put some on the outside of my neck when I got back from my radiation—it kept the burn and swelling down quite a bit. I have great belief in the benefits of Aloe Vera, and the long term effects of green tea. but tea is another post.
ALOE GARGLE - To stop the throat and mouth burn from radiation, three times a day I sipped 1 oz of 99% pure Aloe Vera gel to 2 oz of water and the burn went away after one and a half days, never to return. If you are able to gargle do that and swallow the rest. Do not spit it out. You can also try 50%-50%, but the taste was a little strong for me.
HeadLines Newsletter: Pat Sanders, 205-980-8416; firstname.lastname@example.org