Head & Neck Cancer Support Group
Kirklin Clinic – Birmingham, AL
distributed by American Cancer Society, edited by Pat Sanders
GOD HAS A PURPOSE Charles Lamar <firstname.lastname@example.org>
The longer I live, the more I have come to understand that God has a purpose for each of us. This was once again proven to Jeanette and me over this past week-end.
Several weeks ago we got a call from Jeanette's first cousin who said they were having a marriage in the family and wondered if we could come. We were surprised by the call and were wondering who was getting married. It was his youngest son who at age 40 decided to make the trip down the isle. We made plans, got some dressy clothes which we needed and had put off far too long in getting, made hotel reservations and left this past Friday for Mobile. We had an invitation to the rehearsal dinner which we attended on Friday night.
God’s purpose started to unfold on Saturday morning. Jeanette called a dear friend from her Birmingham days – won't tell you how many of those days have passed- and learned that her husband was in the hospital having had laryngectomy surgery. She told Jeanette that he had not talked to anyone and really did not want any visitors except immediate family. She told us where he was, gave us his room number and told us to come on, this was after we explained to her friend that I was a laryngectomee also. We arrived at the hospital and visited with him. The greeting we got from him and his family was truly heartwarming. He heard, for the first time, a lary talk with a Servox. He had had extensive radiation and it will be some few months before he gets a TEP as his Doctor want him to fully recovered from the radiation and surgery. We visited for over an hour, and he saw that there was an alternative to being a mute and that life went on after the surgery and that there were just a minor few things which he would not be able to do which he did in his ‘former life’. We got ready to leave, he got up from the bed and hugged me and mouthed to me "thanks you", His wife walked to the lobby of the Hospital with us and she was so glad that we had come and she felt that our visit had given him a much needed new outlook on life.
Had we not gone to Mobile, had we not made the telephone call, Bill would never have known about WebWhispers, have shown an interest in getting a computer, etc. He is scheduled to go home on this coming Monday, I will have in the mail to him, the last issue of Headlines, a brochure on WW, and the book which we had for sale at Myrtle Beach. We mentioned to him that the next convention in 2003 would be in Atlanta and both seemed excited with the idea of going to it. HE does have a purpose for us - convinced of that.
BATTERIES & CHARGERS
Pat Sanders tooted my horn to get me, as an Electrical Engineer, to write an article for her next issue of HeadLines with advice about batteries. My wife tells me that other than my love for her and our family, I love best to take things apart and figure out how they work so let's take this apart.
Let's talk about electricity, that helper we all use. There is nothing mysterious about it. It is simply the movement of matter called electrons through a conductor (copper or aluminum) that is covered by a material that is not a conductor (usually plastic or rubber). In electricity the current (amperes) is the movement of the electrons in the conductor, the voltage (volts) is the amount of pressure that is pushing them and the power (watts) is the amount of work it is doing. Lost you yet? Stick around a little longer.
What is this AC-DC stuff? Simply stated DC means the electrons always go in one direction or Direct Current while AC means they continually first go one way and then reverse, hence Alternating Current. The speed of reversals is called its frequency and is measured in cycles per second. In the good old USA we use 60-cycle power. In Europe and many other countries of the world 50 cycle is the norm. A lot of our appliances will work on their power but will eventually burn out. They make frequency converters that allow us to use our stuff overseas.
P=IxE is a simple electrical power formula that we will need to use, which stands for power equals the product of the voltage times the current. Changing any one will change the others. This is important when I speak of charging your batteries.
Charging at home, all house receptacles are 110 volt AC and usually your charger works at 9 or 12 volts DC. The manufacturer builds in a voltage converter or transformer to drop this voltage and convert it to DC to what ever the nameplate tells you it is. Lets assume you plug a 9-volt battery into a 12-volt charger. The value of E is larger, henceforth the power will be greater and you are on your way to burning up your battery. Obviously it will charge much faster but one must remember they are made to only accept so much wattage or power. What if we do the opposite, plug in a 12-volt battery in a 9-volt charger, no problem. It will definitely take a lot longer for a charge, remember we only have 9 volts of pressure when we need 12.
Charging in your car. All automobiles have an alternator, which makes AC, but it is converted to 12-volt DC voltage because of your car battery, which requires DC voltage. Piece of cake, we have 12 volts DC and we need 12 volts for charging. Same principal applies, to charge a 9-volt unit your charger must have a voltage "limiter" to protect your battery from damage. Any reliable electronics shop (Radio Shack) will carry a charger with a cigarette lighter on one end and the fitting for a 9 volt battery on the other and off you go into the woods all set to charge all of your lary equipment.
Buying a charger is like buying any other item; you get what you pay for. The more expensive ones have a lot of safety features built in. The cheaper ones will ruin a battery if left on for a long time while the better ones have a charging protector that cuts off the charge when the battery is up and ready to be used. Many of the better ones allow you to leave your battery in the charger; it will stay charged and kept ready because the charger is putting out a trickle charge. This a very small amount of power, just enough to keep it from going to a discharged state. This is a very nice feature; you will always have a spare ready to go. You can also get a multi-voltage unit that automatically adjusts the charge to match the battery voltage required. Big bucks but you will have a charger for all your rechargeables, regardless of voltage. Be sure to read the information pamphlet that comes with it. If it does not have one, ask, ask, and ask more questions. Tell the sales person what you want, do you want to leave your battery in the charger all the time, do you want a multi-voltage unit, do you want an auto unit or just for your home etc. One more helpful hint, always run your battery to a completely discharged state. Useable but partially discharged units that are put on a charger shortens their life. For your Servox, use the charger that comes with it and it would be wise to take the batteries out of the charger when fully charged. Protecting the contact tips is also an excellent idea, loosely putting one in a pocket or purse is not a good idea. A key or coin could short it out and as the Chinese say "So Long, oooo Long", that's the end of a good battery. Put them in a protected case, like a plastic film canister, for carrying with you. They can and will generate a lot of heat, enough to burn a hand if shorted out. There are recorded cases of starting a fire in a ladies purse, catching a tissue on fire, believe it or not.
Another falsehood, putting batteries in your refrigerator or freezer. If you read a notice printed on most batteries it says, "Store In A Cool Dry Place". A refrigerator or freezer is neither cool nor dry. I keep my spare dry cells in a cabinet. The key is not to buy a lot of them; long term storage tends to weaken them. I am speaking of the regular ones we use for portable radios and flashlights. The package has a 'use' date printed on it, check this to ensure you are buying a relatively fresh package.
Now that you are all qualified battery chargers and battery buyers I expect you to graduate to power plant operators in the near future. If you have a question please drop me a line.
A while back, San Francisco speech pathologist Carla Gress asked the members of WebWhispers to write letters of encouragement that she could show to her new patients. I thought it was a good idea, and wrote the following, which I have included in our club’s visitor packets ever since. I’ve updated it, and present it here.
AN OPEN LETTER TO A NEW LARYNGECTOMEE
Hi! My name’s Ron Langseth.
If you’re reading this, I assume you’re in a hospital, or possibly at home, recovering from a laryngectomy. It’s been over seventeen years since I was where you are now, but I remember the experience well. I remember the stiff, sore, weakened neck that would hardly support my head. I remember that strange hole in my throat that the doc said I’d breathe thru from here on in. (Took some getting used to, but now I don’t think anything of it.) I remember feeling that things just ain’t gonna get any better. Well, I want to tell you up front that things will get better. And probably pretty quickly.
Less than a week out of the hospital I was out helping my brother restore a motor home. I remember working on the headlight wiring, with my head propped against the front tire, and thinking, "My God, less than a month after surgery I’m out doing things I didn’t know if I’d ever do again."
I wrote notes for a while. Frustrating. I used an instrument called a Cooper Rand for a while. (Perhaps you are learning to use it at this moment.) Better’n writing notes. I now speak with a prosthesis, and I think I do pretty damn well with it. In all, I’ve come thru my little bout with cancer and surgery pretty well, and have no real complaints.
Of course, I don’t know you personally. You may have had more extensive surgery than I. At any rate, every operation is different. But in the seventeen plus years I’ve been a laryngectomee, I’ve met literally hundreds of other laryngectomees, and practically all are perfectly normal in all respects except two – the way they breathe, and the way they speak. But they do breathe and they do speak. Some speak very well, no matter whether they use an electronic instrument, speak esophageally, or with a prosthesis. (Going in, I had no idea so many options were available to a laryngectomee.)
Believe it or not, doors were opened to me because of my laryngectomy. For instance, I love to write. To date I’ve written scripts for three laryngectomee-related videos (four, if you count the one that didn’t get made). I’m starting my fourth year as editor and chief writer of CAL Voice, the newsletter of the California Association of Laryngectomees. I wrote and directed the Fun Shows for the last three conferences of the International Association of Laryngectomees. (Why do our organizations have such long names? CAL and IAL for short.) I talk to school kids about tobacco and visit new patients when I can. (Both very satisfying activities.) So you see, in my case there really have been positive aspects to my having become a laryngectomee.
I returned to work for thirteen and a half years after my surgery. I worked in construction, and although dust and fumes presented a hazard, the physical labor was little more to me than good exercise. The surgery had limited my abilities very little. I skied and bowled. I’ve fished for marlin. I knew others who played golf and baseball, and many who still swim and enjoy water activities. I knew a woodsman who chopped down trees, a skydiver, a balloonist and a surfer. Lots of motorcyclists. Laryngectomees, all.
A while back an English gent on the Internet told us about the time he attended a cancer "fair" and heard a lady telling an audience all the things a laryngectomee couldn’t do. (Couldn’t blow out candles, blow a whistle or his nose, sing, lift heavy weights, etc., etc., etc.) "When she was done," he said, "I got up and did ‘em all."
Dr. Stuart Gilmore, a renowned speech pathologist I’m proud to call friend, was fond of saying, "If a laryngectomee should walk into my office and announce that he could fly, I’d put my back to the wall and give him room!"
My friend, you have all the room you need!
Godspeed your recovery!
CHANGE YOUR OWN PROSTHESIS? HOW OFTEN?
By Pat Sanders
If you have a TEP, you have probably asked your doctor, your SLP, and your laryngectomee friends, "How often do I have to change my prosthesis?" You probably didn’t get very satisfactory answers and that is because nobody knows. It varies with time, stability, placement, your personal health care habits, diet, and certainly whether or not you have yeast problems.
Most of the larys I have talked with had a similar experience to my own, but don't make book that yours will be the same. I had a secondary TEP, meaning I had TEP surgery after I had already had a laryngectomy (primary TEP is done at the time of the laryngectomy), and my SLP started me with a Blom Singer Low Pressure 16 Fr 22mm (3.0) length. It was long but usually they will insert a longer one than needed rather than chance getting one that is a little short. The swelling from the surgery is usually still there and sizing can be difficult.
I gradually came down in length as the swelling receded and the tissues became accustomed to the puncture and prosthesis. Your size should be checked every week or two at first. I dropped to an 18mm, and later to a 14mm. I changed my prosthesis every week according to my SLP's instructions and then it became every other week. I remember when I went 3 weeks, I felt really guilty. Several years later, length of prosthesis having dropped several more time, I still changed my prosthesis about once a month. And then I decided that the reading I was doing about others wearing the same prosthesis for longer periods made good sense. The theory being that you do more trauma to the puncture removing and reinserting a prosthesis regularly than you do if you just leave it in until you have problems with it.
We have learned how to clean the prosthesis in place, with special brushes and flushes, so when there is a leak, you can usually stop it by cleaning (all this has been written in detail in other articles). So I lived dangerously, I thought, and left my prosthesis in for 2, then 3 months. I was not having any problems and was able to eliminate the leaks by cleaning, but I began to fear I might have scale forming on the outside of the shaft and that can stretch the puncture so just to take a good look at what was happening after 3 months, I pulled that prosthesis and had a good look. Nothing at all wrong. The one I had inserted was a new one, so I relaxed, marked the calendar, and didn't worry. I had several trips coming up and I thought each time about changing the prosthesis before I left and then I rationalized that if it ain't broke, don't fix it. I passed a year's anniversary for this prosthesis in February this year and just changed this treasure on April 3rd, well over a year after insertion. It looked dark as they do get stained but after I washed it off, there was no scale and no yeast. Since I would not be reinserting this one, I soaked it overnight in some weakened Clorox to get the stain off so I could see it better. If I didn't know how long it had been worn, I could have put it back in for rotation.
I most likely will not go that long again since it is wise to head off a problem. A Warning: there is no way that anyone should try this unless they have been dealing with their prostheses for a while and know how to clean and care for them, know what to look for in a leak, and know how to recognize a problem. Little episodes of taking an antibiotic may give you a case of yeast and a prosthesis that needs changing. It takes some years to be knowledgeable and comfortable enough to experiment without getting into trouble.