HEADLINES

Kirklin Clinic Head & Neck Cancer Support Group,  Birmingham, AL

distributed by American Cancer Society

Pat Sanders, Editor

September 2004


Hang Your Clothes on the Hickory Bush

and don’t go near the water

                                                        

by Bill Barnes

 

Thinking of the old days, that’s before I heard of laryngectomees, I loved to go to the beach, dive in the waves, and frolic the time away.  Then at the turn of this century, a new and strange world found me – the world of stoma, prosthesis, mucus, and speech therapists.

 

After a few showers minus a shower guard, I discovered it was not a really acceptable idea to permit water to freely enter the stoma.  Hence, I used some scientific reasoning and decided that swimming was out of the question. I’d better just hang my clothes on the bush and feel sorry for myself, knowing that I never would be able to swim the English Channel nor swim from New York to Paris.  These thoughts from one who had to stop midway across the pool to catch my breath.

 

Then one fine day, I saw a photo of our Pat Sanders in a bathing suit actually standing in a swimming pool.  This gave me the idea that I, too, could take to the water again.  I tried out the idea on the cruise last year - with a towel around my neck.  Talk about being brave.

 

The next step on my journey was at my step-daughter’s lake house when I borrowed a life jacket and actually walked into the lake.  The jacket kept my stoma up out of the water. I could kick my legs and, using one arm, propel myself through the water.  I was, at last, swimming.  Of course, I was under observation all this time, which is an excellent idea for us laryngectomees when we venture into Neptune’s realm.

 

My next step will be to see what the seashore has to offer but now I know I do not have to hang my clothes on the hickory bush and not go near the water.

Last Minute Shopping Spree 

by Herb Simon

 My wife Sally and I attended the IAL Convention in Anaheim this year.  I recognized a man whom I met at our very first convention in Indianapolis in 1998. We spoke to each other at the ’Meet and Greet’.   His name is Bishop Duncan Mgobo.  I don’t think he remembered me from Indianapolis.  I saw him in passing on several other occasions during the convention.  We had the pleasure of Duncan’s company at our table at the IAL Banquet on Saturday night.  He didn’t sit next to me, so we still didn’t get a chance to speak in-depth.  We shook hands and said good bye at the end of the evening.  I gave him one of my business cards. 

A week later, I received an email message from Duncan.  He said he was still in America and was traveling to the East Coast.  He said he’d be visiting friends in New York and then in Baltimore.  Because I live in Maryland, he wondered if perhaps we could get together before he returned to his home in Kenya, East Africa.  I responded and told him to call when he arrived in our area. 

 

When he called, I found out that he was staying on the north side of Baltimore, with friends from Kenya.  He was 70 miles from where I live in Silver Spring, a close-in suburb of Washington, DC.  We made a date for me to visit with him on August 4th.   When I arrived, we sat and talked for about an hour  He was flying out of Baltimore-Washington International Airport the next day.  I asked what he’d like to do, offering to drive him somewhere.  He said he would like to go a Wal-Mart store to buy gifts for his children.  He also wanted to go to a Goodwill store to buy clothes for himself.  I didn’t know my way around this area at all, but had noticed a small shopping center, a few blocks from where Duncan was staying.  We drove to the shopping center.  I asked a man in the parking lot if he knew of a Goodwill store and/or a Wal-Mart store in the area.  He didn’t know of a Goodwill store, but he did know of a Wal-Mart store that was only a few miles away.

 

This was a first for me, because I’d never shopped in a Wal-Mart store before now.  When we arrived, I asked Duncan what items he was looking for.  He wanted to buy a watch for each of his daughters, an electric razor for his son, a scale for the family, which is something they are only able to use when they visit a medical facility.  He also wanted to purchase a humidifier.  We spent quite a bit of time looking for and purchasing most of these items. Because of the large size of the humidifier and the fact that Duncan wouldn’t be able to take it on the flight back, he decided to try to purchase one on-line, after returning home.

 

Because Duncan and I both speak with Servox Electro-larynxes, the folks in Wal-Mart were in for quite an earful --- and they got it, too!  It was great to watch Duncan in the store.  His excitement reminded me of a child in a store at Christmas time.  Besides all the items he was specifically looking for, he also purchased some camera cases, a backpack and several other items.  As we were leaving the store, the security system went off.  This happened because, supposedly, a security tag had not been removed from one of the items Duncan purchased.  We stood around for what seemed like an eternity (about 20 minutes), while they checked everything he bought and had receipts for!  After checking each item individually on a security tag machine, it was decided that the security system went off for no apparent reason.  The nice lady who was checking each item finally said: “oh, just go ahead and leave, it’ll be all right!”   It was like a practice run for the airport the next day!

 

Because I had a 4 pm business appointment in the Washington area, we didn’t have time left to look for or go to a Goodwill store.  Duncan was elated to have accomplished the main part of his goal.  When I dropped him off, he was very thankful and happy.  He was also looking forward to finally returning home to his family in Kenya, after being away for almost a month.  I thoroughly enjoyed our day together.  It was a unique and wonderful experience for both of us. 


Discovering Life after a Total                         by Harry Miller


I was told on July 11, 1997, that I had larynx cancer and would need a total laryngectomy immediately. When I was released from the hospital, I was so totally terrified, scared and alone that I did not know if I should even go home. Thank goodness the fear ended for me quickly. I was not online then so I went to the library and started reading about how to cope with my new life. This was in the fall of 1997. While I was at the library, I saw an old schoolteacher friend of mine and she was telling me about a relation of hers who was having a lot of trouble like I was. This relative of hers had her laryngectomy recently and was not having a good home recovery but she had it in her mind that there was no hope. I am a fighter and intended to do all I could.

 

I started the long period of radiation. Those months were difficult and all of us who have had those treatments remember. I did have a very hard time swallowing but fortunately when the treatments were done I slowly but surely started to be able to swallow and eat and take my medications normally. That period was my silent time, also. I had an Inhealth Indwelling but my throat was in a lot of pain during radiation so I could not start talking yet. I started talking around Christmas 1997. It was over 4 months of silence for me and that had been depressing.

 

I used to go to cancer support groups when the radiation was over and that is what brought me back to life again. I started talking and I have to tell you about the joy I was feeling inside. In groups like that your inner strength comes out so I am glad that I attended those meetings. Someone there suggested that I might be interested in speaking to groups about the dangers of smoking and I did agree and the next summer, I started to go out into the world and talk to people about my experiences.  At first, it was children I was speaking to. I went to my old high school and spoke there and then a few more schools.  Then I realized that maybe I should try to talk to adult groups and see what happens. Since I enjoy watching TV talk shows like The Montel Williams Show and Ricki Lake, I wrote to the TV studios and got tickets to be in the audiences. I went to as many of those shows as I could, Montel and Ricki but I also went to TV shows that are not aired anymore like The Sally Jesse Raphael Show and Forgive Or Forget. I got around I can tell you and the audience people and I got along just fine. I used to love to go online at my brother’s house and participate in chats in places like MSN which has some cancer chatrooms. They are good only when you don’t have people abusing the different chat areas so I did not keep that up too long.

 

The summer of 2000 I bought my own computer and went online at home. I did a lot of cancer research then and I did learn a lot. Right around that time I was starting to feel that the care I was receiving was wrong. The computer showed me a lot of things the doctors were not doing for me and for that I was getting angry. I did not even realize that after a total laryngectomy, we larys not only need the best ENT's but we also need SLP's. I did not have one because they did not have anyone with lary experience. I then discovered the Mount Sinai Medical Center in New York City where I met my SLP, Jackie Mojica M.S.,CCC, and she opened my eyes.  I allowed the medical staff at Mount Sinai to take over all of my medical needs, which they are well equipped to handle. I have been going there ever since. Lot of times I would get there early. Sometimes I would have a bit of time to kill so I would see and talk to new patients just coming in about to find out whether they have larynx cancer. I could see that I was doing a lot of good because like me a lot of those folks were scared of the unknown. By talking to them, I was helping to take away some fear. I did that for a while and still did my speaking to groups at the TV shows and went to the schools.

 

I do not remember the exact day I discovered WebWhispers but I immediately joined. There are things out there now like the WW pages that have tons of info on them. There is WebMD and WebCrawler and Google and Medscapethat you can learn from..I started to see that I was doing the most good in my talking to the patients at the hospital so I got the idea to become a volunteer at Mount Sinai. I went to my SLP friend Jackie and sat down with her and talked about it. She and a lot of the doctors up there knew I was doing my thing in their waiting rooms and they all thought it would be a great thing to come in and talk to the patients in the hospital. I first went around with the doctors and my SLP Jackie and they escorted me through the patient areas. With their help in less than a year, I was ready to go in any area of the hospital and talk to the patients. I did take a little while to learn but I didn’t want to mess up and that is why I took my time and trained that way. I had no medical experience just  my own experience. Officially, I have been a volunteer at Mount Sinai since March 2003.

 

I was so delighted. Here I was officially a volunteer for only a few months and the greatest thing in my life happened. In June 2003, on "National Cancer Survivors Day" the Mount Sinai Hospital had a banquet. I was never invited to a banquet before in my life. There must have been about 400 people there that day. It was wild. There was an awards ceremony and I won an award. I was named Volunteer Of The Year that day and I have to tell you that was a first for me. I was told later that the hospital has been there in New York City for 150 years and has seen many thousands of volunteers and, even now, I believe there are at least 800 volunteers there. I was told that in the history of this hospital I was the first to ever win this type of award. To be the very first Volunteer Of The Year is a great honor and I was so happy.

 

That may have started something too. We are seeing more volunteers coming in with larynx cancer and I say the more the merrier. I have had several new volunteers come to me and watch what I do. I am glad that we are seeing more larynx cancer people coming forward and offering to give their. I still greet the patients with a smile and tell them everything will be alright. If they are scared, I stay with them and try to keep them calm. I always try to get up close with the patients and  help them the best I can. I always show new lary's how to survive. The nursing staff there is fantastic. I work very well with them and now I can honestly say I have a ton of great medical friends at the center. I know so many doctors and nurses now I can hardly remember names there are so many. I thank goodness I carry my pocket PDA or else I would really be lost. Quite often the night before I go to work the doctors who know my schedule will email me and ask me to see certain patients the next day and that is the way it has been for a long time.

 

I started doing my volunteer training with them in the fall of 2001 and now almost 3 years later I am still there and I guess as long as I can, I will continue. I truly owe my life to the staff of the Mount Sinai Center and this volunteer work is the least I can do. I would suggest to anyone out there and try it. For us larys the best thing we can do is go out and help new laryngectomees while they are in the hospital so that when they come out they can live the right way. It is very fulfilling and my work is not limited to larys. I see all the patients on my floor no matter what they are there for. I found a smile can go a long way when they are scared. I really am surprised by the amount of mail I get. At Christmas time I received so many Christmas cards I could not believe it.

 

I am right now trying to get a new cancer group started on Yahoo. I call it Nuvoice - Larynx Cancer & Volunteerism: http://health.groups.yahoo.com/group/Nuvoice/

 

Maybe it will be another way to reach people who need help.

 

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IAL Future Meetings

 

The 2005 IAL Annual Meeting and Voice Institute will be in Boston, MA, Aug 29 thru Sep 3.  It will be followed by a WebWhispers sponsored 7-day cruise from Boston to New England and Canada, Sep 4 - Sep 11  We will have all of the details later.
 

The 2006 IAL Meeting has just been scheduled Aug 8 thru Aug 14 in Biloxi, MS.

 

So mark your calendars for both years and plan to come meet your fellow laryngectomees while getting educated and having fun.