HeadLines

distributed by American Cancer Society

Pat Sanders, Editor

Kirklin Clinic Head & Neck Cancer Support Group

Articles from our 1997 newsletters

 

 

January, 1997

 

It Isn’t All In Your Head, But Some Of It Is!                                       by Rick Rivenbark

 

In writing this article on how to deal with the effects of cancer from a psychological standpoint, I decided, after some thought, to use my own case as an example.  While each person's experience of cancer is unique in some ways, I believe there are some general principles everyone can use.  I hope these tips will be helpful for you, not only during your recovery, but long after, as well.

 

I had felt the emotional effects of dealing with cancer long before I ever got it myself.  An aunt, a childhood friend, and a favorite boss had died from it and a couple of my friends had had surgery and treatment for it.  I had even had an occurrence of cancer in polyps on my vocal cords, which I did not find out about until the surgery was done. As painful as these events were, they were nothing compared to the emotions I experienced when, nine years later, I was told I had cancer in one of my vocal cords and that I would probably have to have a total laryngectomy. Later, after an evaluation by a second  doctor, I was told I might get  by with a  partial  laryngectomy. 

 

What first went through my mind was that it was the worst possible place for me to have cancer.  I made my living teaching, lecturing, and doing psychotherapy.  I could function pretty well with an arm, a leg, or even a lung missing, but without a good voice I was done for.  Even some of my favorite leisure time activities, acting in community theater and singing, were lost.  Furthermore, neither my medical nor my disability insurance would cover me because I had had the previous cancer.  I experienced spells of  fear, anger, depression, and a hopeless/helpless paralysis of mind and emotions as severe as any I had treated in my practice.

 

Fortunately, after going through a few days of this, I got my thinking back to a more rational level. I began to use some of the techniques I had been teaching to my clients and patients. A basic part of my therapy technique is to help people see that their thoughts affect their feelings and actions, and that by changing the way they think about something they can significantly change the outcomes. As Shakespeare wrote, "There is nothing either good or bad, but thinking makes it so."  I had fallen into the trap of irrational thinking - catastrophizing the bad and ignoring the possibilities for making things better. I had to remind myself that the mind has great power to promote healing and well being if we will only use it in the proper way. 

 

¨       Don't catastrophize.  An example of this is to imagine the worst case scenario without evaluating the actual probabilities of it happening.  In my case, I was ignoring the probability that I would not die from my cancer, which would be the real worst case. Also, I had not yet been evaluated by a cancer surgery specialist, so I did not know what my options were.

 

¨       Realistically evaluate the most likely consequences of your situation.  A total laryngectomy would indeed mean a great change in the way I practiced my career. However, I would likely come out of the illness with my mind as well as most of my body intact and healthy.  I would likely have a lot of medical expenses and delinquent bills to cover.

 

¨       Examine and evaluate your goals. What do you really value? What do you really “need” as opposed to “want”, to make your quality of life acceptable?  I “wanted” things to stay as they were, but what I “needed” was a way to make a living using as many of my current skills as possible.

 

¨       Utilize resources for information, help, and support.  There are usually resources available we have not thought about or used before, because we didn't need them. Wonderful friends and family members searched out some of these for me.  Vocational Rehab agreed to help with my medical expenses.  I was referred to a woman who had gone through total laryngectomy and she was able to help my realistically evaluate my post-surgery possibilities.  The library had a wonderful book on laryngectomy "Why Me, Lord?" by William Gargon. (Those old enough may recall he was a radio and movie actor.)  The American Cancer Society told me of support groups such as TOUCH and Lost Chord.  Nowadays, you can get on-line with a computer and find cancer support forums with people all over the world to communicate with.

 

¨       Develop alternative ways of getting your goals.  What do you need to do to get back on track towards your goals?  I needed some ways to "do Psychology" without a lot of oral communication.   Through the Independent Living Center I found out I could learn sign language, and that there was a great need for psychologists who could work with the deaf.  As it turned out I was able to get by with a partial laryngectomy and did not need to utilize sign language, but I did learn some and have found it useful.  I also discussed doing some articles and even a book with my colleague.

 

¨       Keep your thoughts focused on healing and success.  Research is showing that positive thoughts and attitudes, especially when combined with frequent positive visualization of goals, can significantly speed healing and improve chances of success.  I used my skills in self-hypnosis  and positive visualization  to both recover from the surgery  and to restore a  passable level of oral speech. (It took nearly a year.)  You can learn  these skills from a variety of sources, ranging from books to classes to therapists trained in the technique.

 

¨       Learn to enjoy the things you still have and can still do.  This may sound trite, like the homily  of making lemonade if life hands you a lemon, but it is still true.  I greatly miss doing community theater acting and singing, but I could still help with lighting, sound, set construction, etc.  Sometimes you need to develop new hobbies or interests, and you may, as a result, find things you never would have enjoyed otherwise.

 

¨       Be innovative, be flexible.  "The way I've always done it" is not the only way, or even the most satisfying.

 

 

February, 1997

 

SHOULD WE  BE ORGANIZED?                                           By Charles Lamar

 

Lately, much of the news on television, in the newspapers, and national magazines has been about AIDS.  They reported the number of people infected and the number who have died from this horrific disease. Surveys told of the geographic areas, race, sex and sexual orientation of those infected.  The amounts of money that have been and are being spent to find a cure staggers the mind and no cure has been found yet but definite progress has been made in that search.  The effort to find a cure, the outcry for research dollars, the support of the victims and their families have resulted in a demand that a cure be found. All facets of the people involved with this disease have come together and are ORGANIZED.

 

As a cancer victim, I asked myself, are we ORGANIZED?  Do we get the research dollars?  Do we get the public outcry for a cure?  It has been estimated that some 540,000 people will get some form of cancer in the U. S. each year.  More people die from this disease each year than the combined totals of those that have died from AIDS.  Where is the outcry for more dollars, more research, more support from the news media, more support from the entertainment industry, more support from the public health agencies which are funded by our tax dollars?  I, personally, do not believe it is there.  Where are our ribbons, our parades, our pleas to our Congressional representatives for more research money?  It has been estimated that cancer research gets 10% of the moneys that are dedicated to finding a cure for AIDS.

 

Ladies and Gentlemen, it is time that we, the cancer victims, survivors, family members and friends get ourselves ORGANIZED, write our congressional representatives, contact our news media, demanding more coverage. We need to coordinate with the American Cancer Society to have a national Cancer Awareness Day.  We need to be heard as a unified cry, not as fragmented voices crying out in the wilderness.  We are beginning to get some national publicity as shown by the program recently on ABC featuring Sam Donaldson and Judd Rose.  We need more.

 

We here at the Kirklin Clinic Support Group can be the beginning of something great and wonderful.  Our newsletter can be the focal point to get this movement started.  Through the local chapter of the ACS, it can be sent to all other ACS chapters for distribution, it can be put on the Internet, and through the various on-line computer forums.  Let us get ORGANIZED on a local level, a regional level and a national level.  Let us find a cure for cancer!

 

Videos from American Cancer Society

 

ACS has a free video, demonstrating how to perform CPR on a laryngectomee. You need to order this for your family to see, for the paramedics at the local fire department, and your Red Cross chapter to use it in their CPR classes.  The video is only 16 minutes long and should be shown to everyone taking a CPR class.  One of these people may be the one to save the life of a laryngectomee, because he will know what to do.  It could be you or me!!  Another video is available on voice restoration and will be of interest to the newer laryngectomees who are considering different methods of speech.  ACS also has available  First Aid Cards for Laryngectomees to carry with you and have in your car.  You may have them laminated in plastic for durability. You may order the videos by calling your local ACS or 1-800-227-2345.  The titles are:

·         Check The Neck,  ACS Code: 4534.05

·         Speech After Laryngectomy, ACS Code 4536.05


Communication
, AGAIN!!!                                            By  Pat Sanders

 

Communication is our problem, so we must constantly seek ways to make it easier for people to understand us.  I was reminded, the other day, that the main responsibility lies with us, since we are the ones who have the problem.  That does not mean that someone should not watch us when we speak and try to understand, but it does mean that it is not their responsibility to remember to do so. 

 

One caretaker spouse tells me that her husband loves music and listens often to his stereo system.  All well and good, except that he will turn and talk to her and expect her to understand.  Not many of us have the voice volume to overcome background noise.  It should not be up to her to remind him to turn the volume down if he wants to communicate with her.  That is his responsibility.

 

I have just returned from a vacation at the Alabama coast.  I had not been there since my laryngectomy and looked forward to this trip with unbelievable eagerness.  This was my first vacation and my first time to spend a night away from home (except in a hospital) in two years.  We stayed right on the beach and the sound of the surf, which I had always loved, was a constant roar.  With the doors and windows open, the surf allowed no competition from regular human voices and certainly my nice, new, soft voice was no match.  To add to this problem, my friend has a hearing problem and wears hearing aids in both ears.  The constant breeze added to her discomfort with a whistling noise.  Needless to say,  the difficulty in communicating was irritating to both of us since it caused any number of misunderstandings.  While it didn’t totally spoil our vacation, it damaged the fun of a nice relaxed time.   To correct as much of our problem as we could, we closed the doors when we wanted to sit and talk.  I used my Servox during particularly noisy times and my friend changed the batteries in her hearing aids.  I would rap on something to attract her attention when I wanted to speak, so that I would not have to say it twice.  At one point, in an effort to make it clear that we had been having a problem, I separated my words and enunciated carefully and tried to make a point.  My friend became angry because she said I was talking to her as though she were an idiot.  Certainly not my intention!  Now, if I and my friend, of long standing, cannot share a place for a short while without this type of misunderstanding, then, what about you who live together all the time? 

 

I brought this up at the January meeting and had a good bit of response.  Later, I received the following from Charles Lamar to include in this article as a further effort to help us:

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Yesterday as we went around the table giving our names and when we had our surgery, along with some of the problems that we and our caregivers had experienced, it reminded me of a conversation that my wife and I had at the breakfast table just a few hours earlier. We were finished with breakfast and were drinking our second cup of coffee when we talked about what we would need to do regarding the major problem of her mother. For those of you who do not know, on December 14th, it was necessary to have my mother-in-law move to our home. She is 94 and physically is in as good a shape as one could expect to be, but mentally she is a victim of Alzheimer’s.

 

I do not talk well in the mornings and it takes me a while to get my TEP warmed up. I have to strain to talk which puts a strain on my face, which makes me look mad and gives my wife the impression that I am fussing at her.  Well, when this occurred during the course of our conversation, she told me not to get mad at her and not to fuss at her!  I told her that I was having a problem talking and that I was having to strain to utter my few words and that I was not mad, nor was I fussing, it just appeared that way to her.  This immediately changed the whole tone of our discussion.  For the first time, I think that she understood something that I was going through but had not explained to her.  We had always felt that we had the lines of communication open but neither of us realized that they were not always as open as we thought.  From now on, when I am having a problem with this, I will tell her.  This morning, as we continued our discussion of the decisions we might face, I had the same problem, again,  but now she understood what was going on.  This incident certainly opened my eyes that we laryngectomees do not always communicate our difficulties to the one person who is most dear to us, our caregiver.

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Charles has offered some good advice about sharing our problems with those close to us.

 

Another problem we need to approach is openness with others.  One friend has mentioned that people, with whom you socialize, will often pick a restaurant that is noisy and he has to sit quietly because nobody will be able to hear him.  A hostess will put on background music as a nice touch but it overrules our voices.  Large groups are no longer fun or interesting , unless you are part of an audience, where you are not expected to participate. 

 

If some of you have found other difficulties or solutions to any of these, please let me know and we’ll put them in the newsletter so that we may help each other. Keep on talking!!!!

 

March, 1997

 

ANATOMY OF A FIRST GROUP MEETING

A  Caregiver’s Perspective                                

 

We all filed in. The room was large but grew smaller as all the chairs were filled. I had not expected so many to attend.

 

First, I sensed expectancy.  From all chairs, EXPECTANCY.  Some people were peaceful, seeming to be readying for an exchange, a communication.  Others, looked expectant, with anxiety lacing their edges. What will happen?  Will I be expected to contribute, to actually Speak?

 

Then, as All the chairs were filled, and the meeting got underway,  SORROW came to sit on my shoulders. Crushing me down until tears squeezed onto my cheek.  A deep breath, now two.  The moment has passed.  The sorrow is replaced with

 

INTEREST. What was that gentleman saying? Yes, yes, we've experienced that. And what?  Oh well, maybe I could make a suggestion,  no,  not yet,  it's too soon, but yet

 

I see the anxiety pooling away to the floor.  Faces relax, eyes make contact.  OK.  These people may cry, like me.  But, they are fighters and survivors.   Now I sense STRENGTH.

 

And RELIEF.  It is over, until we gather again to lay the pain on the table and build a LIFE.

 

 

 

My Daddy Doesn’t Have A Beard                                                 by Jenny Dixon

 

Steve is 41 years old. On December 5, he was diagnosed with throat cancer. A couple of weeks later we learned he was sporting a level 4 tumor along with cancer in his lymph nodes.  Well, Merry Christmas!!

 

People who have never been in this kind of situation cannot imagine the range of emotions that accompany such a diagnosis. As for me, his wife, I felt such an overwhelming fear. Fear of everything - fear of losing my partner, fear of seeing him in pain, fear that I      wouldn't know how to help him, fear of financial burdens.  The list goes on and on.             

 

But, since we are a fairly young couple, one of our primary fears was  how to guide our

children through this crisis.  We have two daughters, ages 5 and 8.  All through Christmas, we tried to keep everything as "normal" as possible. They knew their Dad would soon be going into the hospital for surgery, but we fed them small bits of information at a time in order to keep them from being overwhelmed with fright and worry. The day finally arrive for Steve to be admitted.  Saying good-bye to the girls was difficult for him but, of course, our children did not understand.

 

When Steve was brought to his room from SICU, I stood watching him.  He lay still, eyes closed, inert.  Suddenly, he opened his eyes and to my great surprise, grinned and gave me a sassy wink. I was so relieved to see him.  I cried, because he opened his eyes and was the same Steve I'd always known.  Being a cancer patient doesn't change who you are.

 

After his surgery, Steve had many things to deal with: pain, confusion, being unable to speak.  But after about 9 days in the hospital, we both knew he was improving to the point of being able to go home.  He had a longing to be there, but it was also accompanied by fear.  As if the man returning home was not the same one who left 9 days before.  On the 10th day, the doctors said he would be going home the next morning.  The time had come.  Steve, his mother, and I were all feeling anxious about his first meeting with our girls.  Would they go to him?   Would they cry?  Would he?

 

We decided to let the girls come to the hospital that afternoon after school.  I already had told them some of what to expect.  My parents brought them to the hospital later that day. Slowly, they eased open the heavy door to the hospital room. Eyes round and wide, they shuffled their feet and inched forward. For Steve, the meeting was overwhelmingly emotional.  But it wasn't long before our 8-year-old was right up in the bed with him. Gingerly moving about and snuggling in close, she was glad to see her “Dad”.  But our 5-year-old, Madelyn, did not want to go near him.  She clung to her grandfather and hid her face.  A hurtful time for all of us but, sometimes, it is necessary to let children come of their own accord.  I was beginning to despair that, maybe, this had not been such a good idea after all, when our Madelyn shyly said, "My Daddy doesn't have a beard!"  Oh my goodness, of all the scars, pain and differences  that could have been frightening, all that bothered her was that Daddy had a hairy face!

 

Everyone laughed then, and we knew it was going to be OK.  That very night, Steve and I found a razor and, oh, so carefully, shaved his prickly face in preparation for going home. The next afternoon, Steve was home when the girls came in from school. They both greeted him, lovingly and cheerfully, and then ran on to do their usual afternoon doings. Maybe he would have liked for them to be a little more affected by the fact that he was home.  As for me, I was glad to see them doing normal activities.  It showed me that their Dad was at home and, for them, their world was  back in order.

 

The people who love you offer reassurance that you, as a cancer patient, are still the same

person you've always been.  The children in your life will confirm it for you.

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How’s your percentage?                            By Pat sanders

 

I received an e-mail from a new laryngectomee friend,  who asked, “How is your acceptance of what you've been through and your lifestyle after two years?  Does it           still occupy 100% of your thoughts?”. 

 

NO WAY!!!  Perhaps 10%, since I am still learning to use the TEP, dealing with mucous, and  changing the prosthesis.  I’ve added another chore or two to the normal morning and bedtime routines, and have learned to check my voice on the way to answer the telephone to make sure it is clear.  But this becomes automatic after a while and you don’t think about it.  There is a little kit in my handbag, so I can do my prosthesis care when I am away from home, just as you might carry a folding toothbrush just in case you needed it.  I  keep noise to a minimum so I don’t have to try to talk over radio and television. The day-to-day maintenance care has become part of the business of living and it's time to let go of the illness and accept these things as part of  my new lifestyle.

 

Acceptance is the end part of the process of suffering any loss and the removal of a voice certainly qualifies as a major loss.  Getting to acceptance requires going through disbelief, anger and depression.  We can linger in each of these stages varying lengths of time, sometimes with anger and depression see-sawing back and forth.  Everyone is different in the way they handle their losses and some tend more toward depression than others.  We all eventually get to the level of accepting the loss, and going on from there. If you are flexible enough to craft and accept a new set of expectations based on reality, you’ll come through in great shape.

 

Once the pain and suffering is gone, those of us, who are optimistic by nature, can find a few good things to be pleased about.  I remember the weeks of miserable sinus infections I had twice a year, every year.  Have not had one since the surgery, and my friends don’t complain about theirs, since they know my standard answer is, “I have a perfect cure for that!”.

 

I don’t think that it is unique to me, among laryngectomees, to feel normal.  I do not consider myself to be “handicapped”.  I am not shying away from the idea.  It just doesn’t occur to me.  I have found a word that expresses what I do feel….. “inconvenienced”.  I can deal with that.

 

April, 1997

 

TIP OF THE MONTH

Bothered by all of the pollens?  See if this helps.  Irrigate, wear a stoma cover and/or  foam filter.  Dampen them to catch more pollen before you breathe it in.  Don’t add insult to injury by wearing perfumes, shaving lotions, hair sprays, and stay away from smokers.   Happy breathing!


Great
and Wonderful                                                 by Charles Lamar

 

The other day, while sitting at the breakfast table, I answered the portable telephone and it was a call for my wife, Jeanette.  Now, she is old fashioned to the point of not wanting to talk on a walk-around phone, so she went to the one on the wall in the kitchen. While she was getting there, I continued to chat with her friend and she asked how I was doing and feeling.  I gave my usual answer, “Great and Wonderful, just glad that God let me have another day!”.  After my wife had finished her conversation, she came back to report that her friend always enjoyed talking to me because I had such a positive outlook.  Her friend had also said that it did her good to talk with me since it boosted her morale and made her whole day better.

 

Another similar experience happened shortly thereafter when we were interviewing agents in order to select one to list and sell Jeanette’s mother’s house.  On the telephone, as I was making the appointments, I had explained to each that I am a laryngectomee and if I started talking too fast for them to understand, let me know and I would slow down or repeat.  I didn’t have any problems communicating, but one of the agents was the daughter of a doctor and immediately was interested in how clearly I was able to speak and asked how I was getting along. She got my standard answer.  Later, when we met, she said she had been down in the dumps that day and I had made her feel so much better.

 

We, who have had cancer, have had a serious health problem that has changed our lives and the way we live.  That is no reason to walk around feeling sorry for ourselves and dragging everyone else down with us.  It’s so much easier to show a positive attitude, like being Great and Wonderful, and make others have a better day.

 

E-MAIL & CONVERSATION

Received the following thoughts and suggestions in an e-mail from Scotty  Chandler (slightly edited by Pat Sanders):

I realized that in our discussions, we (I, at least) tend to forget that the newer members of our group have not experienced many of the things we talk about, thus it is all “Greek” to them.  Just like I was, with trying  the low pressure TEP,  and even though you explained it well, now that I look back at that e-mail, I wasn’t sure if I understood it or if I was scared to death to try anything new.  I guess the words “apprehensive to try” is a better way to say it.  I know, when I first had my laryngectomy, I was scared to death and wouldn’t  attend the meetings for quite a few months until I just happen to have an appointment the same day.  I wouldn’t even go out much around the house in public because I couldn’t talk as good as I wanted and then I said very little.  Everyone knew I was a jabberbox before!  Ha!  Still am now!!  I know some of the people are afraid or embarrassed to ask questions thinking they may sound silly, like I thought at first, so I think we need to urge them after getting into the meeting or ask them to write their questions down and try it that way.  I know I write down questions that I have or problems I need to discuss with the Drs. each visit and also make notes to myself for our meetings on things I want to either bring up or ask about.  Just a thought and suggestion if you think it will help.  I know with each person being in a different stage of recovery and with different health problems that seem unique only to them, it will be hard to get them to open up.  Then, again, maybe they think it should remain Doctor-Patient information.  I will gladly stay around after the meeting to answer any questions I can or will try to get the answer for someone ASAP. I was down in the dumps for a good long while and even afraid to ask the Dr. questions thinking it silly or that maybe I should have read it in the Blue Book or other literature. I’m not the bashful type either to have slipped back that way.

A little side note and a laugh on something I did with the head of the Anniston Emergency and Rescue Squad.  I had talked to the other men and women about  CPR, mostly one on one or with a small group, but this was the first time I had caught the head knocker even though he knew what I was doing and I had met him on several occasions before. He, Benny Hulsey, is also the Coroner for Calhoun County.  I told him I was glad that we could meet under such favorable circumstances as a Laryngectomee and a Head of Paramedics instead of his other title to which he started grinning , then laughing.  I told him I had no need for his other services as yet and for  a few years to come, I hope.  We had a good discussion and he knew quite a bit about laryngectomees already. I found out that the man who founded the A.E.&R.S. is a Laryngectomee himself (small world, huh?!).   He is still alive and working for the Anniston Land Title Co. at the approximate age of 75. I forget his name right now but plan on making a visit to see him soon.  He had already found out about the video and is going down soon to view it.  He still uses the Servox to talk (never had prosthesis operation) and presses it to his throat. He visits the rescue squad about once a week.  Age 75 now!  I found out a lot myself as well as having a few good laughs and coffee with the coroner whom I prefer to have “no use for”.

 

May, 1997

 

Wonderful Women!!

 

Went to Temple Emanu-El recently.  The ladies there have a sewing club that has been in existence since WWI and has been meeting in the same room for 50 years. There were about 7-8 ladies around a big long table with all kinds of projects like, little stuffed animals for the children in the hospital and small knitted throws to fit people in wheel chairs.  Some were cutting, some stuffing, and all hands were busy.  Then they took me back to the other room where they had 4 or 5 sewing machines with a lady at each one making head covers, colostomy bags, big bibs with pockets for feeding the mentally impaired at one of the homes.  I can't even tell you everything I saw and they were so welcoming...tried to recruit me! They wouldn’t have if they knew what a crooked line I sew! Then I met with Carol Reese,  the generous lady who crochets the stoma bibs for our use and donates them to the American Cancer Society here in Birmingham. We looked at the samples I brought  and decided to  keep some like she is making now but add 2 smaller sizes that are a  plainer design.  She is going to do some to do some in cream or beige as well as white which will be a nice change.

 

This was such a delightful visit and so inspiring to meet these ladies, who give so much of their time in order to help others.  We are blessed to have them.

                                                                                                             Pat Sanders

 

 

EATING GOOD FOODS,  STAYING HEALTHY                 by Pat Sanders

 

As cancer patients and survivors, we want every chance at good health that we can provide for ourselves.  We get most of our nutrition, that will build our immune systems, by eating the basic three times a day, but there are some foods that are better for us and help to keep us in good health.  We have to count snacks and drinks, which for most of us add calories and fat and not much else. Let’s see if we can get what we need and not too much of what we don’t.

 

Early on, we have been on a liquid diet due to surgery, radiation or chemotherapy, so let’s start with some help for people who are doing that now.  You may have a liquid drink that the doctor has prescribed. The worry is getting enough nutrients for your body to have strength to regain health.  The blender is the handiest tool in the kitchen for this time. Milkshakes can be made with powdered protein supplements, which you can buy at the drug or health food store, added to the liquid diet, milk, ice cream, or yogurt. Do NOT add raw eggs since uncooked eggs often harbor salmonella and you don’t need a stomach upset from that!  Most likely, citrus fruits will irritate, but there are juices that are not so acidic, such as pear, black cherry, grape, apple or apricot, that you might tolerate well and some juices can be added to a milkshake to cut their acidity.  Clear broth is available, chicken, beef or vegetable.

 

Hopefully, you will soon reach the stage of swallowing very soft foods.  The first of these should be foods that slide down without much effort.  Egg custards, puddings and even gelatin, which has a low nutritional value, will taste good and swallowing will be easy.  Cream of wheat or similar cereals can be thinned with milk and be almost liquid.  Try mashed potatoes with milk, butter and sour cream and mashed baked sweet potatoes. Applesauce, avocado and yogurt are smooth and nourishing.  Some like baby foods as their first semi-solid food and can get a good variety at the super market.

 

The next step follows easily with the addition of bananas, peanut butter,  ripe melons, cottage cheese, canned fruits, soft scrambled eggs, oatmeal, grits, creamed soups and macaroni & cheese. Melted cheese can be added to eggs, grits or soups.  Vegetables should be cooked to the point of softness and mashed with a fork.  You can use a blender for creaming if you’re not ready for a little chewing. 

 

Baked fish or chicken should be the first meats to try because of the texture.  You can start with very small bites.  A sauce or gravy helps if you have a dry mouth. Most vegetables are fine, if cut very small and cooked to the point of softness.  Baked potatoes, pasta and well cooked rice with whatever flavorings you wish can be tried and you will find out which are the best for you.  If something is hard to swallow, try mashing,  blending, or cooking longer. 

 

Now that you are eating more and more of a regular diet, it is time to quit thinking of,  “What can I swallow?”,  and start thinking of. “What is good for me in what I swallow?”.

 

When you have cancer, beating the disease is the first concern and you don’t count calories because losing weight can be a problem and keeping your weight up is regarded as desirable.  As I was recovering from cancer, it was the only time in my life that a doctor congratulated me on gaining several pounds.  When I made this comment to the doctor, he laughed and said, “It means you’re eating.”.

 

It is not necessary for most of us to change our diets completely.  Let’s take one step at a time and reduce some of the things we know are bad for us while substituting things that are good for us. 

 

FATS -  Cut back on animal fats.  Trim the fat from roasts. Don’t eat the skin of chicken.  Drain fat before making gravy.  Substitute liquid vegetable oils for meat fats where some fat content is needed.  Use bouillon cubes for flavor instead of bacon drippings in beans or greens.  Use a lower fat milk and try some of the low-fat or no-fat products like salad dressings, yogurt, cottage cheese, sour cream, ice cream, or frozen yogurt.

 

SWEETS -  Use one spoon of sugar instead of  two in your tea or coffee.  Cut down on desserts or make them with less sugar.  Substitute water, herb teas or fruit juices for colas.

 

SALT - Since most of us lose some of our taste capabilities, we tend to use more salt.  Try using a “Lite Salt” which tastes the same but has less sodium content.  A dash of flavored vinegar or a squeeze of fresh lemon can add taste without adding salt.  Herbs and spices used freely while cooking can replace salt or fats.  Many people believe onions and garlic are cancer fighters and they certainly won’t hurt you, so load up on both of them.

 

VEGETABLES -  You can double up on most of these if they are cooked without Fats, Sweets or Salt.  Eat them raw or cooked in salads, but watch the salad dressing.  Roast them in the oven, steam them on stove top or in the microwave.  Go back for a second helping and cut back on meat and dessert.  Especially recommended are the orange and dark green vegetables.  They are well known as ……

                                                         the cancer fighters

 

 

 

Frequently Asked Questions

FAQ       Why does my nose run all the time after my laryngectomy?

                     Is it a cold or a sinus infection?

 

Answer:       Your nose runs after a laryngectomy because you no longer breathe through your nose but through your stoma.  Because there is no longer any air flowing through your nose the tissues lining the nasal cavities become engorged with blood and do what they are supposed to do--make mucous.  This is a self-limited process and requires several weeks for the body to get adjusted before the condition improves.  You should avoid taking any anti-histamine medications, particularly if you have had radiation, as this can make the dryness from the radiation even worse.

                                                                                              Glenn E. Peters, M.D.

 

Tip of the Month:  Irrigation does not require a saline solution.  You can use plain water, or if you have well water that you are not sure of, just use bottled or distilled water.  No need to worry as long as there is good faucet water!!!  If it is drinkable, it is OK for irrigation of the stoma.

 

June, 1997

 

Exercise Is A Must!                                                By Scotty Chandler

 

As with any neck injury or surgery such as a laryngectomy, exercise, in a modified form, is necessary to get the muscles and nerve endings back to a somewhat normal condition. Each of us have different health and physical problems besides the laryngectomy so the following list of exercises should be done only to the extent you feel comfortable and after a talk with your doctor(s).  How much or how often you do them depends on whether you are a recent laryngectomee or one of the “Old Timers”.

These exercises can be done autonomously or in a practice situation.  I do most of them while stopped at a traffic light when driving or when riding in a car or while watching TV. Any of them if done too fast can cause a dizzy feeling so be careful.  Repeat each, slowly, until you are used to them.  Recent laryngectomees, especially, take care with all of them.

 

·         Exercise #1.  Lean the right ear toward the top of the right shoulder. Bring head back to vertical, then lean the left ear toward the top of the left shoulder. Kind of like a pendulum motion but watch out for dizziness if you do them fast!

·         Exercise#2.  Touch the chin to your chest then “try” to touch the back of your head to your back. Repeat these slowly.

·         Exercise #3.  Do exercises #1 and #2 in a four(4) count motion: right ear to right shoulder, chin to chest, left ear to left shoulder, then back of head to your back. (Notice: this can cause a tingling in and around the stoma area in the throat and may help to excrete mucus.) 

·         Exercise #4. Turn your head facing the right. Hold to the count of 5.  Then to the left as far as possible. Hold to the count of 5

·         Exercise#5.  Again, turn your head facing the right. Tuck your chin down and look toward the floor, then raise your chin and look upward. Come back to straight ahead position. Turn your face to the left and tuck your chin down, then raise and look up.

 

Note: When you are doing any of these exercises, if you feel a burning sensation, tightness  or any other discomfort, such as a cramp or “charlie horse”, stop.  Sometimes that can mean a pull in a muscle or over-exertion of a muscle!   Rest and start slower next time or skip that exercise..  Don’t push it.

Doing these or some form of exercise for the neck will tell whether you can “LOOK” to the right or left better or whether you have to turn your body to see things to your side.  It can also ease the aggravation of backing your car.  You can use the mirrors or just turn your head!

Now!  Ready for the shoulder exercises!!!?  Coming Soon!

 

 JKLKJKLKJ

 

 

Changes and Compromises                               by Nova Lacefield

 

 

When my long time friend, Pat Sanders, asked me to write something from the caregiver's point of view I was a bit taken aback, as I have never considered myself a caregiver. However, I have lived with the changes and compromises necessary to continue a rich relationship that I wanted to keep. Rick had his second bout with throat cancer more than 14 years ago.  The partial laryngectomy was early morning and I spent the rest of that day and night in his hospital room.  Neither of us was prepared for what was immediately ahead.

 

Rick was strangling and I buzzed for the nurse.  She helped him with whatever was making his breathing difficult.  She also helped several minutes later with the same type problem.  The third buzz was not immediately answered and the struggle for breath was so bad Rick was on his hands and knees in the middle of the bed before the nurse finally arrived.  After calmly walking into the room and assessing the situation she said,  "Mr. Rivenbark will soon learn to take care of himself.".  She waited there for a minute or two until Rick did what he needed to do to breathe again.

 

Rick lived and breathed through the night and the next morning when Dr. Maddox, the surgeon, arrived I had a dozen questions for him.  I was informed with a minimum of politeness that these were not my problems and he immediately turned to Rick and asked if he had any questions.  Rick scribbled a few lines on a notepad.  The surgeon answered Rick's question and left after telling me I could not spend another night in the hospital.  He also said, "If Rick needs any help, our nurses are the best in the business."

 

Rick and I were not married at that time, and I had two teenage sons at home.  His mother came and stayed for several days after he left the hospital.  She is squeamish about blood and mucus and I know Rick learned very quickly to take care of his throat and wash his own bibs.

 

I have since made some accommodations to Rick's inability to talk much above a whisper.  In large gatherings of people I always wear bright colors so he can spot me in the crowd. Also, when we are driving with a third person, I always insist that person sit in front so Rick can be heard  without his having to project his voice over the back seat. Rick has had to make some concessions also.  He likes music when he is driving, and I cannot hear him above the noise.  He has learned that when I am in the car with him the radio cannot be playing. 

 

As the doctor and nurses made plain to us shortly after the surgery, a laryngectomee should always remember that he or she is the one with the problem, and try not to make one for the caregiver as well.  From the caregiver's point of view, it is necessary and possible to compromise, but the major burden for changes rests with the laryngectomee.

 

If life gives you a lemon don't just make lemonade - use the best recipe you can possibly find.

 

Tip of the month

 

If you are having trouble swallowing bread and solid foods because of mouth and throat dryness,  here are a few things you can do to help until time takes care of the problem and moisture slowly returns.  Stay with foods that have a lot of natural liquid.  Take smaller bites and chew well.  Replace the natural saliva by sipping liquids to help make dry foods easier to chew and swallow.  Club soda with lots of fizz will create a fresh feeling but some prefer a hot drink.  Hot or cold liquids react differently so test to see which helps you the most.

 

July, 1997

 

Been There, Done That!                      by Charles Lamar

 

Several months ago, I had the opportunity to visit a new laryngectomee in another medical facility.  While I was talking to him, the speech pathologist came in with a mechanical larynx for the patient to try.  It had been in a storeroom somewhere in the facility.  It did not work and she did not know how to make it work.  I introduced myself and we discussed other artificial larynx devices, including the Servox.  She was a new BS graduate and this was her first job.  She knew she had a lot to learn, starting with how well I could talk with the TEP.  Both the speech pathologist and the patient were invited to attend our meetings, as I knew both could benefit from some “Been There, Done That”.

 

Last Sunday, I was outside grilling the steaks.  My wife, Jeanette, in the kitchen preparing the rest of the meal, knocked a large jar off of the counter and it hit her knee, which started to swell and we used ice packs but, by night time, she could barely walk.  Having had arthritic knees and having the surgery to replace one of them, I know well how it feels and I still cannot sit for long periods of time without getting stiff.  Her knee was somewhat better on Monday and the doctor said it was a deep bruise so keep up the ice packs.  She said to me, “I really did not know what you and others have gone through, since I had never had the problem, but I have a much better understanding now.”  Unfortunately, she learned  with a painful experience.

 

Earlier this month, as I sat in our support group meeting, my mind wandered a little as I thought about the difference between our group and another I have attended on an irregular basis in the past.  I deeply feel that our group, although supported by Kirklin Clinic, is run by us, the members of the group.  The other, supported by a well known medical and cancer center, is run by professionals, who designed it according to their needs and backgrounds rather than the needs of the survivors who attend.  While there is some relationship to the healing process, it seems to be more of a social affair with refreshments provided by one of the goods and services vendors, than for the purpose of giving and receiving *support*.  I feel very strongly that, while the support and encouragement of health professionals is necessary, they do not know what it feels like to go through what we have to do in the healing process.  We have “Been There, Done That” and they have not.  They can relate only what they have studied, read or what we have told them. That is why our support group is so wonderful.  We understand better than anyone else what others are feeling about the cancer and the whole process of learning to live and talk again.  I am deeply grateful to each of you for your support and input as I went through the long transition from normal speaking person to laryngectomee with a new voice.  You made my trip easier.
 

Ask the Doc???

Hey Doc, ever since my laryngectomy I seem to have trouble with constipation every once in a while and I really haven’t changed my diet.  Why is that?

 

Answer:  In order to have a natural bowel movement you need to strain a little.  Normally straining is done by closing the vocal cords and increasing the pressure in your chest by exhaling against the closed vocal cords.  The same thing happens when you strain to lift a heavy object.  Without a larynx you can’t strain normally because your stoma will not allow you to restrict the outflow of air from your lungs.  The solution then is to eat a diet which will provide a large amount of bulk to your stool  as in a diet high in fiber  …your basic old healthy fruits and vegetable diet along with grain products that don’t have all the “good” refined out of them.  You also want to stay very well hydrated with plenty of water, juices and liquids.

                                                                                                 Dr. Glenn E. Peters

 

 

E-mail Report!                                                             By Pat Sanders

 

E-mail from my friend, Joanne Goldberg, who came here from Boston just in time to visit our last meeting, said to tell everyone how much she enjoyed meeting them and how much she learned from the experience.  She wrote, "Imagine about 10 patients sitting in a room, none of them in possession of a larynx, and all of them chatting away through the wonders of technology, speech therapy, and a triumph of the human spirit!"

* * * * * * *

A few weeks ago I received an e-mail from Philip Clemmons and I thought you might enjoy seeing his schedule.  He wrote:  “Just so folks can know you keep on living after cancer, here is my itinerary for the next two weeks:Leave Birmingham Sunday at 6:10 PM for Atlanta, then Atlanta to Los Angeles.

Arrive LA 11:05 PM. Leave LA 1:35 AM Monday morning, arrive Taipei 6:20 AM, Tuesday morning.Take a train to Taichung, Taiwan, and then car to Chunghua. Next day back to Chang Kai Shek airport same way. Leave Taipei 1:00 PM on Wednesday to Singapore, arrive5:10PM.

Thursday and Friday business meetings in Singapore. Leave Singapore Friday 3:15 PM for Kuala Lumpur, Maylasia. Arrive 4:05 PM.Business meetings in Kuala Lumpur Saturday - Tuesday.

Leave Kuala Lumpur Tuesday 1:35 PM. Arrive Hong Kong 6:50 PM. (will change planes in Singapore.)Work trade show - exhibition - in Hong Kong Wednesday - Saturday.Leave Hong Kong 9:45 PM Saturday. Arrive San Francisco 7:10 PM same day (cross date line over night). Leave San Francisco 9:50 PM Saturday. Arrive Atlanta 5:19 Sunday. Note: second red eye flight.Leave Atlanta 8:35 AM Monday, arrive Birmingham 8:16 AM Monday morning.Work all day Monday inCullman.

 

Not bad for someone who had cancer.”

* * * * * * * * *

I also received an e-mail from Brenda,  the daughter of Barbara Paschal of Enterprise, telling about her Mother’s new job and that she just celebrated her one year anniversary of her laryngectomy on May 13th.  Barbara did a cancer walk in the middle of May and had a great time.  Brenda writes,  “She has been doing some things with the Cancer Society and some of the people were there at the walk and remembered her.  Mom, my brother, and his girlfriend went to Dothan to hear a guy speak who had throat cancer and they were all encouraged by what he had to say.  They sang Amazing Grace at the end, and she said there was not a dry eye in the house.”

* * * * * * * * *

Tip of the Month

 

Servox batteries are very expensive and it is wise to conserve.  Batteries, not in use, should be placed in a film canister or plastic case to keep them from touching metal.  Your keys or loose change touching the battery will damage it.  A spare battery can be kept longer if stored fully charged in the refrigerator, but let it warm to room temperature before using.   Remember that if the kids play with the buzzer, you are using up your voice power!  Also, controlling the volume will help your battery to last longer.  The louder you set it, the sooner your battery expires.

 

August, 1997

 

SUPPLIES, SUPPLIES!!!!

Hardly a week goes by without someone asking where to get supplies.  While there are other suppliers listed in the Blue Book, most of us use the following companies, who will be happy to send a catalog. 

INHEALTH TECHNOLOGIES

1-800-477-5969

BIVONA

1-800-348-6064

MEDIC-ALERT

They keep your medical information on file, plus membership includes the MedicAlert bracelet, with your personal ID number, so that medical personnel will have immediate access to your medical history.  Cost is $35 to join for the first year and $15 a year thereafter to keep the records updated which you can do as often as needed.  Call and they will send all information. 1-800-432-5378 One of our members just joined and chose to have “neckbreather” instead of “laryngectomee” engraved on his bracelet., since so many people do not understand that we do not breathe through our noses.

 

SUGGESTION FROM NANCY LEWIS:

Supplier for Stoma Bibs (3 different kinds):

RoseAnne George

1-800-454-7778

 

AMERICAN CANCER SOCIETY

Stoma bibs at no charge, made by volunteers.

Women’s wigs at no charge if you are losing your hair due to Chemotherapy.

 

SUGGESTION FROM PHILIP CLEMMONS:

On TEP Supplies that he uses, he says : I think the standard tape discs and the valve housings that Bivona has are far superior to the ones InHealth carries.  I order part number BTAP60 on the tape, and BHSGV1 on the valve housing. I also buy their foam discs, p/n  BTAPFM.

 

The best glue remover I have found is UNISOLVE.  It is made by Smith & Nephew.  I talk to a lady named Mary Alice and always order two 8 oz cans, which will last about two months. I buy it through:

Alabama Medical Services Inc., 4300 Narrow Lane Road, Montgomery, AL 36116,

1-334-284-4499,1-334-284-9141 fax ,1-800--264-9078 

 

SUGGESTION FROM DORCAS O’BRIEN:

Dorcas buys thin washcloths by the dozens (Sam’s used to sell them 48 to a package) and uses those damp instead of tissues.  They facilitate clean up around the stoma, have no lint, wash in the machine, and can be used over and over.

 

Blessings                                                  by W. A. (Shorty) Smith

 

Only those, who are very close to me, know that I can’t cry from pain or sorrow.  I lost a brother, my Dad, and my Mother, but wasn’t able to shed a tear.  So when you see me cry, you know that I am rejoicing.  My wife and children apparently forgot this, so when they saw me crying, they thought I was depressed.

 

After having my larynx, esophagus, and some of my tongue removed twelve days earlier, I was headed back to surgery.  I had not been free of pain in those twelve days except when the pain medicine had me knocked out.  Doubts crept in. While in this downcast state of mind, it seemed everything, that could possibly go wrong, went wrong.

 

We had just been told that I would be carried to surgery shortly.  Then it came.  The answer to the unspoken prayer and I began to cry blessed tears of rejoicing.  The thoughts that culminated in the following poem came so fast that they kept “outrunning” my pen.  By the time they came for me, I had written the first two verses and the others were in my heart.  I remember, being wheeled into surgery, wiping away the tears.  If there is anything in this life any sweeter than losing consciousness while communing with the Savior, I have not been blessed to experience it.

 

I am sharing these very personal things with you hoping that, if any of you are ever faced with like circumstances, you may be able to draw some comfort from them.

 

BLESSINGS

 

The road to sweet recovery must pass

thru fervent prayers,

and we must always remember

our Master really cares

 

He cares for the tiny sparrows and so

much more for us

He can soothe with His presence, His

voice, His smile, His touch

 

I must bear these light afflictions, but I am

guilty, you see

My Lord was completely blameless and He

died upon the tree

 

With whatever I have left I must serve him

He will help me bear the pain

For His Grace and perpetual Mercies

Oh, praise His Holy Name                          

October 15, 1996

 

TIP OF THE MONTH

Do not worry about a ‘little’ bleeding when you change your TEP prosthesis.  It is normal to have anything from a pink stain to some red drops, which looks like more than it is!  Flush your trachea with a little water (as in irrigating) and drink a little cold water to clear the esophageal end.

 

 

Ask the Doc??

 

Ever since my laryngectomy food just doesn’t taste the same.  You didn’t operate on my tongue (Did you?) so why is it that I don’t taste as well as I did before surgery? 

Taste is a complex special sense.  What we know as “taste”, particularly the more delicate tastes, is really smell.  The subtle tastes of eggs, certain cheeses, fruits, wines and the like depend on an intact sense of smell for their discrimination.  Smell relies on our ability to move air containing certain molecules into the highest recesses of our noses.  When we eat, the air with the odor bearing molecules goes behind the palate up into the nose.  Following your laryngectomy, you no longer breathe through your nose but through your stoma.  This results in less air reaching the smell part of your nose.  The bottom line to all of this is that with a decreased sense of smell, it naturally follows that your sense of taste will be less as well.

Some patients learn how to “sniff” a little air up into the nose to enhance their sense of smell.  Another tip is to add a little extra spice or cook with pungent herbs to help the job that your tongue is doing for you.  This may make your food a little more enjoyable.  Bon Apetit.

                                                                                                      Glenn E. Peters, M.D.  

 

September, 1997

 

FROM TEACHING TO LEARNING!                                                              BY LAVERNE SHANNON

 

I have always enjoyed an active life- - working in my flower garden, sewing, needle crafts, refinishing and restoring antiques, dancing, singing- -just anything that kept me busy.

 

After retiring from teaching in early 1993, I had to put all plans on hold when laryngitis turned out to be cancer of the vocal cords.  Extensive radiation treatments took care of the cancer, and I spent the next three years having regular examinations with favorable results.  Then, over the period of a year, my voice deteriorated until I could not speak above a whisper.  In November, 1996, I was told by my radiation oncologist that I was still clear of cancer.

 

Over the holidays, I decided to go back to my ENT doctor to see if he could possibly help in restoring my voice with treatment or medication.  Instead, in January, because I had cancer earlier, he decided to do a biopsy.  The appointment with Dr. Peters at Kirklin Clinic was already set when he called me with the news that the cancer had returned.  I was not unduly alarmed for I thought I would have another round of radiation and be fine.

 

At Kirklin Clinic, Dr. Lowery examined my throat, checked the biopsy report and notes.  When he told me Dr. Peters would be in to discuss *the surgery*, I went berserk!!  I had no intention of having surgery!!  I would have been out the door had my daughter not stopped me and started to ask  questions.  Dr. Peters had the right answer.  The alternative to surgery was to perish.  I didn’t like that alternative.

 

From that point, everything happened so fast.  We were given with the “Blue Book” to study. Nancy Lewis returned from vacation to find a hysterical woman and her large, concerned, family to contend with.  Her cool demeanor and Dr. Peter’s reputation as “the  best” calmed my fears a bit.  My family gathered around but they couldn’t do it for me and nothing could have prepared me for my hospital stay after surgery.

 

Pat Sanders visited me- - she was the only lady I had ever seen with a laryngectomy.  She was patient, understanding and helpful to all of us.  Nancy and Pat made sure I attended the support group in February, wheeled over from the hospital bed!

 

Many of my questions have been answered in HeadLines, at the group sessions, and by individuals.  I realize I still have “far to go” to be comfortable with my condition, but I do appreciate the good fortune to have access to Dr. Peters, Nancy Lewis and the others in our group.  I am now faced with my next challenge, having to start over again with another TEP.   Another opportunity for learning!

 

Ask the Doc:

By far and away, the question that I am most frequently asked is “Doc, did you get it all?”  I thought I might just explain this concept and let everyone know that the “get it all” really doesn’t apply to cancer , i.e. malignancies.  Let’s start by reviewing just what a cancer is in the first place.  A cancer is a lesion that has the capacity to act in a lethal fashion and ultimately result in the death of the patient.  Cancers come about when a group of cells, for whatever reason, looses their normal control mechanisms and begin to grow out of control.  As a result of this growth and loss of regulation some groups of these cells take on new genetic characteristics and become further programmed to carry out certain specialized functions.  One of the most important new functions is the ability to invade the surrounding lymphatics and blood vessels and ultimately spread to other parts of the body.  Therefore, cancers are programmed to spread.

The ability of a cancer to metastasize or spread to other organs can occur at any time during a lesion’s development and growth.  We usually see this happen with larger tumors, but even the smallest and earliest cancers possess this genetically programmed ability to metastasize.

Surgery and radiation therapy are designed to take care of the tumor that exists locally in the head and neck area.  Unfortunately, at this time, there does not exist any form of therapy that can address cells that might get out and set up shop at other sites.  The best we can hope for is early detection of any new sites of possible spread.  That is why a program of close and careful follow up and surveillance is so important.

So, in summary, we hope to eradicate tumors in the head and neck area with surgery and radiation.  Most times we can get everything, that we can see and feel, out.-  But does that mean that we “got it all”?  Most times it does indeed mean just that—but remember that we are dealing with a disease that by its very nature is designed to spread.  So adopt a healthy life style and keep those follow up appointments.  

                                                                                                    Glenn E. Peters, MD


Taking care of ourselves
                                                     by Charles Lamar

 

 

Some months ago, I had a problem with a piece of food stuck in my throat. While I had no  problem breathing , I still had a most uncomfortable feeling and nothing I tried got that food to move.  I live near a Fire Station with a Rescue Squad, so I went there hoping they could dislodge the piece of meat. No such luck!  They wanted to send me on to the hospital in an ambulance; whereupon, I informed them that I had driven myself to them and I could drive on to the hospital.  After all, I was breathing fine.  I was thinking, “Thank God for being a neckbreather!”.

 

When I arrived at the Emergency Room, I explained the problem to the nurse, at the desk, who wasn’t too concerned and spent some time getting a little history, checking my blood pressure, etc.  Next was the Admissions Clerk, who had to get all of the paper work.  Finally, I was escorted back to the Exam Room, where, after a short wait, the ER Doctor and Nurse were told my situation.  A longer wait, this time, before they came with a wheel chair to take me to Endoscopy, where things moved a little faster.  At least it seemed so, after they gave me a shot, because, shortly thereafter, the doctor showed me the piece of meat held in the forceps.  I was relieved that this was finally over and was ready to go home.  I was told that I could not drive myself.  I objected and asked for an AMA form and they would not give me one, so I was driven home by one of the Security Guards.  For background, I had worked at DCH Regional Medical Center as Director of Personnel and Security for 31 years and had retired from there in 1993.  I knew each of the people involved in taking care of me in this incident.

 

Not long after this, someone at our group meeting at Kirklin, mentioned a problem he had experienced and that people in the emergency rooms were not aware of how to handle laryngectomees.  When I got home, I decided to question DCH as to the inservice (training) that ER personnel received in the care of laryngectomees.  I wrote to the VP of Patient Care Services, and received NO response!  Later, it was brought back to mind when I volunteered there during a blood drive.  At that time, I mentioned to the VP that I had written and there had been no answer.  She was somewhat embarrassed by that, probably even more so upon learning that I was a retiree after serving 31 years!  Two months later, I received a letter from her that the Inservice Education Coordinator had inserviced the personnel on  laryngectomies and on first aid for these patients using materials obtained from ACS and IAL, so that laryngectomees could received proper treatment.  Progress!!

 

Since then, I have spent an hour at the West Alabama EMS office and talked with one of my nurse friends there.  The Basic EMT book contains 1  1/2 pages on the Laryngectomee and this showed three pictures.  While there, I talked to one of the Basic Instructors and she did not realize that we do not breathe like normal people and when something was said about mouth to mouth, I nearly fainted!  She did promise to go back and read the material and, also, attempt to get one of the new doctors to come and address our needs.  I volunteered my time to talk to the classes.  Perhaps, looking at and speaking with one of us in person would help to educate these people.

 

There is more to be done since DCH owns hospitals in Northport and Fayette.  I am in process of writing to see that the ER staff in each of these receives the training.  It is a slow process, but each of us need to write, call, or visit our local medical facilities  (include the Emergency Medical Services), to which we might be taken in an emergency, to be sure the staff has been trained to treat a laryngectomee.  I encourage you to be an advocate and get involved.  It can mean our lives!!

 

October, 1997

 

Home from the hospital                                                   by Carolyn Chenault

 

On my way to Birmingham to spend the first week home from the hospital with my friend Pat Sanders, I worried. What if I poured the liquid "food" too quickly and strangled her?  How could I help her if she got strangled?  Before going to be with Pat, I had talked with my daughter, a nurse, who had warned me to be very slow in pouring.. My mind was racing with "what if" thoughts and how I could best react if one of my "what if" worries  actually happened.  I was bringing her the gift of a brass bell to ring when she needed me but suppose I slept through it?

 

To start with, just looking at the feeding tube hurt ‘me’, not Pat.  I wanted to remove it, it was foreign and unnatural.  It had to hurt!  When Pat, at home, had her first meal in the tube going through her nose, I almost froze with horror. I had not seen her being fed this way in the hospital.   To my amazement it flowed down easily, she did not get strangled. we needed no help!  Except she did get hungry and what in the world could we push down that tiny tube?  When you become a mother you acquire an instinct to feed and, even though my children are all grown, that urge remains strong within my being.  I even entertained such wild thoughts as: could we put a steak, potato and salad in the blender, puree it  and pour it down?  Before I had mastered my plan, several days had passed and it was time to go in for a follow up with Dr. Peters.  He removed the tube!!  One of the happiest moments for both of us was that day. Then, one more day on liquids to be sure there was no leakage, and, much to my relief, she was able to eat a very soft scrambled egg and "watery" grits.  Her bite or two turned into several.  The woman was starving to death!!  A friend had made some wonderful potato soup. Next,  Pat tried a few spoons full of the liquid contents of the soup. And then bits of the soft potatoes along with the liquid contents.  She was feeling better.  My, what food does for one! And I was happy, too!

 

Pat’s first night home from the hospital I was anxious about going to sleep.  My "what if" syndrome sat in again.  What if she needs me and I don’t hear her?  What if she chokes and can’t call out to me?  And the list of "what ifs" continued through the night.  None of which occurred. She had the bell she could ring if she needed me and I listened for it all night long.  Pat had rested well and she wrote to me the following morning that it was always nice to be home and in your own bed.  I was worn out with "what ifs", but the next night, I turned them loose and I rested too... Being a caregiver does not mean you do not care for yourself and your needs.  If you don’t take care of yourself, you can’t function at 100% for the person who needs you.

 

I remember the first practice with her Servox.  She had her booklet she had been given with lists of words to practice.  To avoid tears I made my self giggle inside quietly like a little girl poking fun, " Pat’s got a Dick and Jane book!"  One turns to every and any thought, no matter how juvenile that will make you stop tears.  She practiced.  I listened, and it got easier for both of us. At one point, she realized I was reading her lips!!  I have a hearing loss in both ears and wear hearing aids in both.  So I had gotten pretty good at lip reading.  This didn’t tell us how her words were sounding with the Servox so I had to turn my back and listen to her to find out if I could understand.  Practice was better, she got better.

 

When Pat would irrigate or clean her stoma, I felt the most pain.  Although, I could not see into her throat, the stoma was my window to seeing what had happened to my dear Pat.  It reminded me, that hole at the base of her throat, that a part of her had been taken away.  That part of her would never return.  I would hold the light and mirror so she could see better and have both hands free for the irrigation.  She would gag and cough.  I would fight back tears and pray for God to help her for I could not.  All I could do was be there to hold the light and gag with her in my heart.  With each irrigation and each cleaning, she got better with it.  It became a part of her and not a strange occurrence that was happening.   She gagged and coughed less, and, though it continued to happen, it was more controlled, more natural. Or, maybe it just wasn’t as scary anymore. We were learning to live with what must be done.

 

Being a caregiver means you take on pain.  Knowing that someone you love is in pain and suffering.  In Pat’s case, it meant her entire life was being turned upside down.  I did not want this to happen to my friend, but there was no way to avoid the changes and the new life we would have to carve out for our long lasting friendship. To quote Pat,  “You do what you have to do!”..  And in doing, we outgrew the pain.  We overcame the heartaches and went on with our lives to make new memories together.  Pain of the caregiver is an okay thing.  You just don’t allow it to run rampant and get out of control.  You do what you have to do and love being able to be there for someone you love that is in pain.  How lucky one is to be a caregiver. You have the opportunity to give that pat on the shoulder, the hug,  you cry  together, and, yes, even laugh.  You heal, together.

 

(Note from Pat:  My laryngectomy was 3/31/95.  I came home 4/5 and the feeding tube and drains were removed on 4/8.  Even though I have since talked with a lot of families, I did not know the feelings of the ones that care for us until I asked my friend Carolyn to do an article telling how she actually felt watching me struggle with all of this new process.)

 

 

Frequently Asked Questions

Doc, a lady laryngectomee wrote in to our Internet group and asked what harm there was in having several glasses of wine every evening.  How about it? Can we continue to have a cocktail?

 

It is well established throughout the literature written about head and neck cancer that tobacco and alcohol are both the most common risk factors associated with the development of the disease.  Usually, we see both factors acting together to cause the problem;  however, tobacco alone or alcohol alone have been clearly identified as independent risk factors, each capable of causing cancer.

Now here is where the water gets a little muddy.  New research has been looking at the role of certain chemical compounds called anti-oxidants particularly in their roles of not only preventing the development of cancer but also slowing down the development of atherosclerosis.  One of the sources of these anti-oxidants is RED WINE.  Distilled spirits, beer, and white wine do not contain the anti-oxidant compounds.  Several studies have actually shown some health benefits from one or two glasses of red wine several times a week.  By the way, broccoli and cauliflower also contain even higher levels.

So what’s a girl to do?  Generally, folks who get into trouble (ie cancer) from alcohol and tobacco are not just users but ABUSERS of the stuff.  Around the time patients are treated for their cancers they usually quit smoking and drinking, using this time in their lives as the best possible excuse to quit.  A lot of these patients have self-control problems and cannot do anything in moderation.  That’s why we as clinicians discourage even modest use of alcohol because we worry that it will only lead the patients back to their old ways.

So the answer to this question lies within each of us as individuals.  Can we each be careful and responsible enough to limit intake while still taking advantage of the possible health benefits an occasional glass of red wine has to offer?   If the answer is “no” then don’t start even with a sip because it will only lead to trouble again.

                                                                                                             Glenn E. Peters M.D.


More Exercises from Scotty….                                
By Scotty Chandler

 

The following exercises are for the shoulder and lower neck muscles around the clavicle or collarbone area. Most of them are relatively simple but the recent Laryngectomee should have their doctor’s approval before attempting any exercises.  You will find there is a fair amount of pain at first but it will decrease as you heal. The main thing is to keep these muscles active to prevent them from “freezing” or shriveling up and becoming harder to use as you  recuperate. They also prevent the joints that the muscles are attached to from locking up or “freezing” up when you try to use your arms. The more you use them now the more mobility you will have in the future. Most of these exercises should be done in a standing position if possible, or holding on to something doing them one arm at a time.

Exercise#1 With your arms at your side, lift each arm to the shoulder level. Do this exercise  until you feel comfortable  to raise it higher a little at a time until you get the arm straight up beside your head. You may want to work on each arm separately, at first, gradually working up to both simultaneously. You may find that more effort is needed on a particular arm depending on which is your dominant arm. i.e.  right handed or left handed. Then, try moving the arm up in one steady fluid motion from the side all the way over the head.

Exercise#2 Starting from both arms at your side, raise each arm straight out in front of you up to shoulder(chest) level. Then up, gradually, straight up over your head. Gradually practice moving the arm up in one fluid motion. Now you can try moving in a swinging motion from your side to up over your head and both arms at a time.

Exercise#3  Starting at shoulder height (one arm at a time), without turning at the waist, reach as far backward as possible with palm facing forward. Try this at various heights. You will probably find about three quarters raised to be the hardest point. Remember! Don’t turn at the waist at first then gradually work your way up to both arms out in a forward to backward motion.

You can also try these exercises outside using a ball bat to add some weight to the swing of the arms. The added weight to the swing tends to stretch your muscles a little further.

Another exercise you might want to try is a golf type swing that gives you a crossing as well as down to up or up to down motion. I suppose a broom will add weight to the end for a better stretch just fine and get work done at the same time, but watch the dust!

Now, if some of you will tell me how to lose some weight short of sewing my mouth up let me know, because I exercised my arms too good, I think!! 

 

November, 1997

 

TAP INTO YOUR POWER                                                  by  Chris Poe

 

So, here you are, most likely alone, too.  What do you do to make it though the day, with a feeling of a day well done and some sense of satisfaction in life that you helped the world?

You TAP INTO YOUR POWER!   What is this?  Another weird Mexican type cancer treatment.  Nope!!.....It is so easy.......You must give away your power, no one can take it.  You must be your best friend, educate yourself, network a large group of intelligent, compassionate, caring people.

First, you are never alone.  For me, God lives in me.  The Holy Spirit.  You decide what your Power is and draw on it.  To simply have survived the cancer trip for one day is a miracle.  Find a support group.  We are your peers.  We are here for all of you.

Buy an inexpensive notebook.  Keep a journal.  Start your day with writing down 10 things you are thankful for.  Start with the simple things in whatever order they come to you and go on from there.  It may be something like this:

1.     Air to breathe

2.     Food to eat

3.     A pet that loves you

4.     Clothes to wear

5.     Eyes that can read

6.     Able to swallow food

7.     A favorite family member

8.     Just one good friend

9.     Water, which is so good when we are thirsty

10.   Able to talk (again?)

Can you fill in number 11.?_______ More?  Good for you!!!

You might be a Steel Magnolia like me.  You can’t take my power with a loaded gun..  .Fill each precious day with good works,  good memories for  the future and abundant joy.

Love one another…..Take care of each other…..Write to each other…..Talk to each other …..Just be there…..God Bless you all.

(Diagnosed 12-13-95, 33 radiation treatments at MCE Cancer Center.  Finished on St. Valentine Day, 1996.  Danced a jig with all the staff members of the Center.  They were all so precious to me and to all  the patients they treated….Chris Poe

J J J J J J J J J J J J J

 

SHADOW OF A TASTE                                BY Pat Sanders

 

Since we have lost most of our sense of smell, which affects our taste, we need to be looking out for things that will make food “taste” more like it used to.  While there are four acknowledged taste bud sensations, sour, sweet, salty and bitter, some authorities feel there is a fifth, savory (herbs, for instance), which reacts more to aroma.  The aroma moves up into the area behind the nose and thus allows a stronger “flavor”. Experiment with herbs by putting a little bit of dried herb on your tongue and nibbling at it with your front teeth and you should get a strong flavor, often too strong to be pleasant. The dried herbs taste a lot different and a lot better cooked with foods.  Chewing a few leaves of a fresh herb, such as mint or basil, will taste good and fresh herbs can be added plentifully to raw salads and cooked dishes.

 

Suggestions from other laryngectomees and from nutrition magazines have made possible the following ideas to help make food a pleasure, even with less smell and taste:

 

·         Cook freely with herbs and spices and use lots of onion and garlic. You may find that chicken is tasty again if cooked with tarragon or dill.  Italian seasonings and salsa perk up flat dishes.  Mashed potatoes with a dash of Cajun seasoning are delicious.  Grits, rice or pasta dishes made with Jalapeno cheese are very flavorful but be careful of the hot pepper until you know it won’t burn your mouth and throat.

 

·         Vary the texture of your foods.  A bowl of ice cream with a crisp cookie.  An apple with yogurt.  Have a salad “with” your meal instead of “before”, or nibble on raw carrot sticks when you are having soft cooked vegetables.  The texture of food has been part of the enjoyment all along.  We just don’t think of that.

 

·         Vary the temperature of your foods. A sliced cold tomato with hot vegetables. The contrast seemingly adds different flavors.

 

·         Add a squeeze of lemon juice, a flavored vinegar or a mustard sauce to a baked potato or vegetables.

 

·         Alternate your bites with a different flavors, temperatures or textures.

 

·         Eat slowly, chew thoroughly, and savor each bite.

 

·         Try something different. Instead of a bland salad dressing, try Caesar’s or Italian or a make-your-own vinegar and herb.  You might like a strong salad dressing sprinkled  lightly over vegetables. 

 

You will find that you like things you would not eat before and that you have more taste left than you thought you did.  Thanksgiving turkey time is coming up.  Try pouring apple juice or wine over the turkey and topping with a lot of different herbs and enjoy the aroma as it bakes.  My family loves “blackened turkey”, made by coating the turkey with Cajun seasoning and cooking long and slow.

    

Have a Good Thanksgiving!!!

This month, Dr. Peters answers one of the most frequently discussed subjects:

Coughing and phlegm are what I would like to address next. 

Are you taking steps to make sure that the air that you inhale is properly humidified?  Is your stoma bare or covered? 

The excessive phlegm production is a natural response by your lungs when they are exposed to dry, unfiltered air.  It’s their way of protecting themselves.  Irrigating your stoma with saline or clean tap water every few hours will help.  Two or three cc’s at the time is all that is needed.  Beware—you will cough like hell, but it won’t drown you or anything like that. 

Another thing you can do is to take advantage of the humidity that is leaving your body every time you exhale.  Wear something around your lower neck like a woven stoma bib or a loose fitting kerchief;  these things will trap some of your body’s own expired moisture.  Also, keeping your lower respiratory tract properly humidified will lessen your risks for viral infections  (colds) and pneumonias.

                                                                                      Glenn E. Peters, M.D.


December, 1997

 

The Doc on E-mail!!!                          (Excerpts from a message to New Zealand)

First of all, from the symptoms you describe it sounds as though you have had a neck dissection of some sort to remove the lymph nodes from the right side of your neck.  In doing this operation it is necessary to indeed cut the nerves responsible for feeling in that side of your neck.  The area of numbness likely extends from your ear down onto your neck then onto the upper chest and the top of your shoulder.  Unfortunately, the numbness is permanent to a large degree.  The actual area involved may over time decrease in size as sensory nerves grow into the numb area from surrounding normally sensate areas.

The weakness that you have noticed in your right shoulder is also from sacrificing another nerve in the neck, the spinal accessory nerve, which supplies the trapezius muscle on your back.  The trapezius muscle helps you to raise your shoulder when you raise your arm.  You have probably noticed that you have difficulty working above your head with your right arm.  This is because you have difficulty raising your shoulder.  The pain in your right shoulder is from stiffening in the capsule of your shoulder joint and also from some slight downward displacement of the shoulder from loss of the trapezius.  The only real remedy for this is a vigorous program of exercise that is designed to strengthen the other muscles that help the trapezius to raise the shoulder.

The tightness and stiffness in your neck is indeed scarring in the soft tissues.  Several factors have contributed to the development of this problem: 

1.       Radiation therapy causes fibrosis in the tissues under the skin, the amount of which can vary from patient to patient. 

2.       Surgery also can cause scarring.

3.       A  fistula and its repair can be a contributing factor.  Each of these things can lead to the problem, but when they occur together, the problem is made much worse. Use stretching exercises and massage to loosen the scarred tissue.  This is going to be a slow process,  like 6 months to a year,  but it should loosen up some if you work on it.          Glenn E. Peters, MD

                                                                                                 

When even one… is one too many!                            anonymous

 

Recently, in our Ask The Doctor segment of HeadLines,  a question was asked by a lady laryngectomee regarding the advisability of having several glasses of wine every evening.  Dr. Peters’ answer included a statement of the health benefits of one or two glasses of red wine several times a week; BUT it also included the warning that if one cannot limit intake of alcohol, then one should not even take a sip because of the troubles it will cause. This note has been motivated by the second part of Dr. Peters’ answer.

I am today a sober member of Alcoholics Anonymous. I am a laryngectomee and feel compelled to tell you that I am one of those who cannot limit my intake of alcohol..  In keeping with the principles and traditions of AA, I write to you anonymously and you will not be told of the sordid details of “my story”,  detailing  how I  arrived at this status in life. I had eight years of sobriety and, just prior to being diagnosed, I relapsed and started doing  so-called controlled drinking. The controlled drinking was no fun at all for this alcoholic;  it was a miserable experience.  But I couldn’t stop it, or I didn’t think I could.  I lied about it, and covered it up as well as I could.   I had been told many times that alcohol was “cunning, baffling and powerful” and that it was also “patient”. Now I knew the truth of these words.

As a laryngectomee, this cancer and its consequent recovery process were a special challenge to my renewed sobriety.  I had been through a very painful experience involving an infection in my spine in the early 80s which had not caused relapse. But the loss of my voice presented a different and formidable threat to my sobriety.  Throat cancer often strikes us at an older age when we may be retired or slowing down and thinking about retirement.  Not being able to speak, or not being able to speak as well as we would like, causes frustration and we may become inhibited and withdrawn.  These are danger signs for alcoholics or addictive people in general.  It was especially frustrating for me not being able to speak up at AA meetings.

I firmly believed God had saved my life the first time, and he saved me again five years ago.  Now, I am very active in the AA program,  endeavoring to save myself and to help others to stay sober.  I wish I could really tell you how grateful I am for this turn of events.  Words literally fail me when I try to talk about how happy and joyful I am to be free of the addiction (for today).  How much better the world looks,  the flowers smell, the food tastes, the music sounds, and how much more lovable I find people.

In closing, a couple of AA type one-liners:  

·        The biggest obstacle to getting and staying sober is acceptance that we have a problem with alcohol.

·        Recovery requires a spiritual approach.

·        Alcoholism is progressive;  we only get worse, never better until we stop drinking!

 

 

Tip of the month….one for the entire Winter

 

Every year, we preach HUMIDIFY.  Let’s look at several ways to do this:

Even though we don’t breathe through our noses, we still can get little sores from the dryness just as our lips do.  Same thing around the stoma if we don’t keep it moist. A major item to have for the home is a humidifier for your bedroom, which is where you spend most of your hours at home.  A problem can result from carelessness in cleaning a humidifier.  The U.S. Consumer Product Safety Commission suggests that you change the water every day, drying the tank after emptying and before refilling.  Distilled water will not leave minerals that leave bacteria friendly, white, dust.  About every two weeks, sanitize by soaking for 20-30 minutes in a solution of one teaspoon of bleach to one gallon of water.  Rinse thoroughly before refilling.  At your local hardware store, you can get a hydrometer, which will let you know the level of humidity,  which should be at about 40%, give or take a little.  You don’t want the buildup of moisture to be as high as 60%.  That level will encourage growth of bacteria and fungi.  In short, use a humidifier but keep it clean and fresh.  We have had good reports from some of our members using air purifiers, which eliminate the bacteria and fungi problem.

 

I keep a spray bottle of clean water with me when I’m not around a water supply.  Misting my stoma bib, which I wear at all times, gives me moisture to breath wherever I am.  Change the bib at least once a day.

 

Showering gets us nicely moisturized, but let’s don’t forget irrigation of the stoma keeps the mucous thinned and the air passage open.  With the proper humidity, you will not cough as much and you will breathe better for these Winter months.

                                                                                                                                Pat Sanders