Internet Laryngectomee Support
Hawaiian Conference a Success
by Wayne Baker
Of the 70 people pre-registered for the conference, just eight were no-shows despite the fact that the conference came just one month after the tragedy at the World Trade Center. We had representation from New Zealand, Australia, Hong Kong, Japan, Mexico and Israel, vendors from Sweden and England, and a faculty member from the Netherlands.
The relatively small attendance was beneficial from the standpoint of the attention that was given to individuals.
The faculty was truly outstanding. Carla Gress put together a great bunch of people including Minnie Graham, Merle Irvin, Jan Lewin and Corina van As.
The last minute replacement for Alison Perry from Australia was also fortuitous. Jackie Gartner-Schmidt gave some of the best presentations that I have ever heard, effectively tailored to reach all levels of technical expertise.
The conference was hosted by California Association of Laryngectomees and the Hui Olelo Hawaii club. Hawaii provided some excellent adjunct speakers and put together "goody" bags and manned the registration table. They also made arrangements for a medical facility at which hands-on instruction was given for demonstrating insufflation tests, changing TEPs, etc.
The "adjunct faculty" of radiation oncologist, surgeon, physical therapist and a professional addressing social concerns were all at the doctoral level. The radiation oncologist was outstanding, and the surgeon was probably the best I ever heard. He had great visuals, a very personal delivery, and made clear some very complex issues related to laryngectomy.
All of the comments that I have heard, firsthand and secondhand, from faculty, vendors and attendees were very favorable. Several "old timers" said that it was the best conference that they ever attended.
Coughing and Coughing
by Pat Sanders
In the WebWhispers e-mail list and at our local support groups, more complaints are heard on coughing than probably any other problem except mucus. Often, they are the same problem. Coughing starts early and may even be one of the symptoms that sends us to the doctor before laryngectomy, but it certainly comes into play after the surgery.
When I call on new laryngectomy patients in the hospital, my heart goes out to them as I see them start a racking cough that brings tears to their eyes. While they are catching their breath and cleaning up or trying to suction the mucus, I usually tell them that I remember how the coughing hurts and while I still cough sometimes, it doesn't hurt now and they, too, will get past that part.
Only occasionally have I called on a new patient who didn't cough a good bit. Almost all new laryngectomees have a powerful cough. The exposure of the inside of the trachea to the outside air and to bits of dried mucus or blood, causes an explosive release of air from the lungs to try to rid the body of whatever is bothering the trachea. This is a protective reflex to keep the air passage clear just like pre-lary days.
I remember when I was a kid and would breathe in at the same time as I tried to swallow, so food would go down the "windpipe." As I coughed, my dad would pop me on the back and say it had gone down the wrong pipe. Well, the "wrong pipe" still is sensitive to having anything in it but a coating of nice thin mucus, and clean, warm, humid air.
Here is where the catch comes. Pre-laryngectomy, if you had a tickle in your throat, the cough not only worked for clearing the trachea "pipe" but also for the top end of the food "pipe." A good strong cough could dislodge sinus drainage or a bit of displaced food from your throat and you could cough it up and spit it out. Post-lary, you may find yourself coughing from an irritation in the throat, but nothing is dislodged because the air all rushes out the stoma and doesn't touch or move whatever is causing you to cough. You can still cough out irritating bits of blood and mucus from the trachea, but for the throat, probably the best way to clear the problem is to drink something. Perhaps a hot drink like tea with lemon or honey but some people like icy drinks. See what works for you. I like a fairly hot drink since it seems to thin the mucus and relax the throat.
When I first started to eat again, I would fix some food that looked so good after my short period of abstinence and the first bite would hit a spot that was either a stitch or a raw place that was just healing. It would sting a little, activate my cough reflex and I would start. I hated the coughing but most of all I hated that I had to wait to eat! Once the coughing spell was over, usually with the help of some weakened down hot coffee, which I sipped often at that time, I was able to eat, but it seemed that first bite would get me every time.
Another reason for coughing can be breathing in smoke, perfume, hair spray, aerosols, chemical odors from cleaning products, environmental pollution or pollens, and very dry air, especially if there is no rain to clear, clean, and moisturize the air. A quote from MedlinePlus, "smoke (including passive or secondhand smoke) destroys the cells in the lining of the breathing tubes so that mucus cannot be expelled normally, leading to a chronic cough," so when we fuss about all that mucus, part of the problem could be a leftover problem from our own or secondhand smoke that damaged the lining of the breathing tubes. In addition, if you are allowing people to smoke around you now, you could be doing further damage.
Sometimes a cough is caused by medication. ACE inhibitors are notorious for causing dry nonproductive coughs. That's bad. Guaifenesin can give you a good productive cough by thinning the mucus and allowing you to cough it up. So does water or saline solution, used to irrigate the stoma. A few drops of water while flushing your prosthesis or a little bit of the spray entering the stoma in the shower helps to clear out the trachea.
Acid reflux can wash up into your throat and cause you to cough. It can burn and sting, leaving your throat tender. If you think this is your problem, talk to your doctor. There are several one-a-day prescription medications that will help.
If you have a TEP, it can be good (helpful), or bad (part of the problem). The good is that you can take a deep breath, occlude, and blow a continuous stream of air up through the throat in order to clear out what is there. One time, I had a small pill stuck in my throat above the puncture and I was able to dislodge it and get it back up to where a sip of water took it down properly. That's good. Bad is when you have a leak because of the TEP and small amounts of liquids, food, and even acid reflux can get into the trachea from the esophagus. This causes a cough as the trachea tries to remove it. This can also lead to pneumonia if these get on down in the lungs. Leaks in TEPs need to be cared for and sometimes this can be done with the prosthesis in place and other times, the prosthesis has to be changed.
One of the most common coughs is the one we get when the heat comes on in the winter. The cough usually has little streaks of blood from broken capillaries caused by the dryness. Many larys think they have a cold their first winter but it is likely to be the drying out of the trachea that is the problem and the thick, stringy, mucus, which won't budge out of the trachea. We have written many times about the importance of adding moisture through humidifying your house, using HMEs, irrigation, wearing dampened stoma covers, taking steamy showers, and drinking extra water. Do these things as soon as winter comes and that may eliminate a major part of your problem. There is an article, "Thinning Mucus," in the May 2000 HeadLines which covers this in detail. It can be found at either of these sites:
On the other hand, it may be a flu, virus, or a sinus infection in which case you will still need moisture but also a doctor for medication. Respiratory tract infections include sinusitis, bronchitis, and pneumonia and they may or may not have any relationship to being a laryngectomee but if your mucus is discolored, that indicates an infection of some type so see your doctor.
If you already have asthma, emphysema, chronic bronchitis or any other COPD (chronic obstructive pulmonary disease) then you are or should be receiving treatment for it. I do have a suggestion for you on the Web. This site, http://copd-support.com/ , has almost 2000 subscribers for a List and Forum that could be of benefit to you. Their Forum messages are full of interesting discussions about all of the above mentioned problems.
As I watched, in horror, the collapse of the World Trade Center on Sept 11 and the ensuing mass of black smoke and matter that appeared to be chasing the survivors down the street, it was literally hard to breathe, picturing this almost solid mass going in the eyes, nose and mouth and knowing it was impossible to filter what was going between the vocal cords, down the trachea and into the lungs.
An article in the recent issue of Doctor's Guide interviewed the Deputy Chief Medical Officer with the NYFD. He was there and described it. "The sky turned black," he said. "You thought you were in a mine … with particulate matter that was so dark and so concentrated that it appeared to be almost like syrup." He knew that everyone there would have what he called an inhalation injury which would manifest itself with a dry hacking cough in addition to the drippy nose. GERD would be likely because of swallowed particulate matter such as pulverized concrete and glass. In an attempt to prevent some of the COPD problems he knew would be coming, he obtained 'inhaled steroid' samples for the firefighters and EMS personnel.
This is the first time such mass prevention has been tried and it appears to have helped. He emphasized that they are being urged to take some control themselves by wearing respirators to limit further exposure to particulate matter, but one cannot help but wonder what repercussions this will have for these people in the future. I think the terrorists have not claimed their last victim from this.
What we can learn from his advice is to take as much control as possible over our environment to limit further exposure to anything that might damage our lungs or the shortened pathway to them. Take care of the breathing apparatus we have that can be so exposed to damage.
When you have a cough, think about what may be causing it. If it doesn't go away, mention it to your doctor and explain how and when it happens. There is a difference in treatment.
Tomatoes are Still Hot!
For something which was considered to be poisonous during the time of George Washington, the tomato has certainly come a long way.
Still more research is showing the benefits of consuming tomatoes, this time as sauce. An article in the Journal of the National Cancer Institute for December reports the results of a study carried out at the University of Illinois which demonstrated that tomato sauce consumption decreases DNA damage and PSA (prostate specific antigen) levels in prostate cancer patients. It has been known for some time that there is a reduced incidence of prostate cancer among people who live in cultures where the diet includes significant amounts of tomatoes in various forms.
The head researcher, Dr. Phyllis Bowen, concluded, "These data indicate a possible role for a tomato sauce constituent, possible lycopene, in the treatment of prostate cancer and warrant further testing . . . ."
Tomatoes has previously demonstrated cancer prevention and immune system protection characteristics for a number of cancers. But in the case of prostate cancer in men, tomatoes can help them put that problem behind them.
Philip Clemmons Honored
Fellow WebWhispers member Philip Clemmons of Alabama won the "Life Inspiration Award" from the American Cancer Society last year, and was selected as the banquet speaker at the award dinner this year. Philip, whose e-mails are always uplifting, has recently found still another way to "uplift" himself. He is adding flying fixed wing airplanes to his current piloting of hot air balloons. He recently soloed on his way towards getting his license.
Philip is the CEO of Elk River Safety Products which has manufacturing facilities in both Alabama and Canada. Visit his company's website at http://www.elkriver.com.
In addition to beating larynx cancer, Philip also beat lung cancer. Congratulations, Philip, on being recognized as leading a life which we know inspires us all.
Do Support Groups Work?
The short answer is, of course, they do.
Former U.S. Surgeon General C. Everett Koop, M.D., wrote last July in The Voice, “My years as a medical practitioner, as well as my own firsthand experience, have taught me how important self-help groups are in assisting their members in dealing with problems, stress, hardship and pain.... Today, the benefits of mutual aid are experienced by millions of people who turn to others with a similar problem to attempt to deal with their isolation, powerlessness, alienation, and the awful feeling that nobody understands.”
A number of research studies support Dr. Koop's observations and have demonstrated that patients benefit both physically and emotionally by participating in support groups. One study showed that women who had breast cancer and belonged to a support group lived twice as long as those who did not. Research on patients with malignant melanoma concluded that support groups can lower depression, confusion, and fatigue, and lead to increased energy and even measurable strengthening of the immune system.
Some of the benefits of support groups supported by research include:
- The opportunity to express feelings openly.
- The chance to reduce fear of treatments and pain through sharing knowledge and experience.
- An avenue to build self-esteem and speed your own healing by reaching out to help others.
Our own experience as members of our local support groups and of WebWhispers would, undoubtedly, add many additional benefits to this short list.
Many cancer patients express feelings of helplessness- - loss of control over our bodies and lives. And it is true that many aspects of cancer are beyond our control or even influence. But research has shown that cancer patients have a better result if they are involved in their own treatment decisions, and learn about managing symptoms and side effects. Quality of life has been shown to improve as a consequence of our learning about our disease and treatment, and support groups can certainly aid us individually and collectively through participation.
The "Polite Yawn"
An easy to learn procedure can help about 1/2 of laryngectomees regain some of their sense of smell. The procedure is quickly learned by most laryngectomees and involves yawning with the mouth closed; hence, the phrase "polite yawn."
The restoration of the olfactory sense (ability to smell) has received little attention in the U.S. The Europeans have paid more attention to both respiratory and olfactory rehabilitation and have included both in their concept of "total laryngectomee rehabilitation" along with speech restoration and psychological and vocational therapy which have been historically emphasized in the U.S.
The "polite yawn" research was carried out in The Netherlands and reported more than a year ago in the Archives of Otlaryngology and Head and Neck Surgery. The research team was headed by Dr. Frans Hilgers, and included Drs. Fritz van Dam and Corina van As, Saskia Keyzers, Marike Koster and Martin Muller.
The test group consisted of a group of laryngectomees with an average age of 64, and an average of 8 years since their laryngectomies. Most of those taught the "polite yawn" method learned it in one 30 minute lesson.
The researchers noted that many patients with an improved ability to smell as scientifically measured still did not think their ability to smell was improved. The reported that they still did not automatically smell odors in their environments. But the researchers noted that the laryngectomees would need to do the yawn maneuver whenever they entered a new environment. Obviously, having been taught this "voluntary" way to move air into the nose did not restore the pre-laryngectomy method where smelling was an automatic and involuntary consequence of breathing.
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