June 2008

 


 

 

Name Of Column Author Title Article Type
News Views  Pat Sanders Philip & Patricia Clemmons  News & Events
VP Lisa M. Proper Pre-Op Speech Consult, Pt 1 Education-Med
Between Friends Donna McGary Hissing, Home & Hope Experiences
Practically Speaking Elizabeth Finchem Lemons Into Lemonade Experiences
A Scottish Accent Rosalie Macrae Annual General Mumbling Experiences
Tidbits Of Interest Dave Greiwe Two Legs & One Lung Experiences
Mailbox Diane Davis When Helping Hurts Experiences
Travel With Larys Len Librizzi Antarctica Experiences
New Members Listing Welcome News & Events

 

 

 

 

Philip and Patricia Clemmons took their final trip together.

 

Philip Clemmons, lary since 1990, belonged to the Support Group that met at Kirklin Clinic (UAB in Birmingham, AL) in the fall of 1995 when I first attended. He, Charles Lamar, and I all joined "Dutch's group" in the summer of 1997. Ever since that time, he has been a frequent contributor to our list in answering questions for a lot of members and was an inspiration to many new larys.

Philip had one of the best TEP voices I have ever heard and spoke hands-free. In the early days, he told stories about changing his prosthesis in the airplane rest room, blowing out the valve from his hands-free on to the table top in the middle of an important business meeting and traveling the world in his sales career. He took all of these things in his stride and made jokes about them. He encouraged people to not be afraid to go back to work and often said that being a laryngectomee made him a millionaire salesman because no one ever forgot him. He came through lung surgery beautifully with his usual good spirits and wrote about that to anyone who faced the same.

There was a beautiful article in the Birmingham News, 5/25/08 telling about Pat and Philip, who were high school sweethearts and had been married since she was 16 and he was 18. They would have celebrated their 47 years of marriage this month. They traveled together often in the last years and were in process of setting up an apartment in Canada since they spent a lot of time there with two companies they owned. Philip had been a hot air balloon pilot and had fulfilled a lifelong goal a few years ago by getting his pilot's license and his own plane, a BE35 Bonanza. They were together on the way to Canada in their plane when they crashed in Ohio on May 12, 2008.

They will be greatly missed by everyone. Their minister in their home town of Cullman, AL, said he could not think of one without the other and that there was comfort in their being together.

 
Pat W Sanders
WebWhispers President
 

 

 

VoicePoints written by professionals [© 2008 Lisa Proper]

Coordinated by Lisa Proper, MS-CCC-SLP, BC-NCD-A, BRS-S (LisaMProper@comcast.net)

 


Pre-Operative Speech Pathology - Consultation for the Laryngectomy

PART 1, PLANNING
Lisa M. Proper

 

 

A pre-operative meeting between the Speech Pathologist (SLP) and the prospective laryngectomee is of utmost importance in a patient's post-operative rehabilitation.

Something I learned early in my 25 year career as an SLP. I was extremely fortunate to start my laryngectomy training in my undergraduate studies and, then, with even more extensive training in graduate school, where we actually had a post-operative voice training clinic. Despite having this clinic, one of our patients had his surgery without having a pre-operative consultation. This unfortunate patient had his first tracheostomy training session, looked in the mirror and had quite a terrible reaction. I will spare you those specifics, but it made a major impression on me as a new graduate student who was observing a more experienced student. Not only does my early experience attest to the importance of preoperative counseling, but several studies throughout the years have confirmed this. More imperatively, patients usually state how important that first meeting was.

The pre-operative SLP consultation for the Laryngectomee is not only an information session, but it is a counseling session. Counseling training for SLP's is not always made available in university training sessions and sometimes can be an overwhelming experience for an SLP. Unfortunately, when this occurs, the preoperative session often turns into a fact filled, overwhelming, experience for the patient, which is absolutely the last thing that should occur. Therefore, it is appropriate for us to begin this article with some counseling basics.

An appropriate definition for a counselor is a person who counsels; somebody whose advice is sought or who acts as an official adviser. In the field of laryngectomee counseling, various team members qualify, beginning with the patient's surgeon, with a minimum of nursing and SLP help at the pre-operative level.

The literature suggests that there are six attributes that an SLP must possess to assist with the psychological well being of the laryngectomee & family during the pre-operative session and throughout the entire rehabilitation process. These attributes, although they may appear obvious, nevertheless are important to discuss. They include:

1. Respect and consideration for patient
2. Appreciation and acceptance of the responsibilities to the patient
3. Commitment to understanding the individual needs
4. Need to encourage and to ensure patient compliance with treatment
5. Acceptance of self feelings & willingness to express these feelings
6. Understanding of one's own abilities and limitations.

Additionally, in 1997, Stuart Gilmore, Ph.D., suggested that an SLP's counseling skills should include the ability to allow the patient to express, acknowledge, and clarify feelings & concerns, as well as the skills enabling the SLP to be able to ascertain the patient's knowledge, feelings & attitudes regarding the changes and problems. Counseling skills also should include the ability to promote the patient's own problem solving skills. Assessing, providing, and evaluating what information is needed, as well providing support for both the patient and spouse/family, are extremely important tools to be utilized during the pre-operative consultation. Determining what the patient already knows, with regard to the surgery and rehabilitation, is of particular importance. The SLP may be the first person the patient is actually hearing when explaining the surgery and its ramifications. Many times when the patient is first told by the surgeon, they just hear the word "CANCER" and do not listen or comprehend the information regarding the specifics of the diagnosis and treatment because they are still dealing with the term "CANCER". It is important to remember this and present your information as if this is the case with your patient until you know otherwise as the session occurs. As SLPs, we all know we should never assume anything about our patients, especially what the patient knows! If you must assume, assume the patient doesn't know and just apologize if you are providing some repetitive information that they may have already heard.

Before initiating a discussion regarding the specifics of the preoperative consultation session, I believe it is important to briefly touch on the aspect of grief. In all stages of laryngectomy rehabilitation, grief will be experienced, not only by the patient but also by the spouse, a fact that unfortunately is sometimes overlooked by medical professionals. A recent patient of mine was doing well with his rehabilitation but his spouse wasn't as well adjusted, and I needed to provide her with some additional counseling time and additional literature written just for the spouse. I always wonder what I could have done differently in previous sessions that may have prevented this difficulty. The SLP needs to keep in mind the 5 stages of grief that may be experienced. The first stage is generally denial and the feeling of isolation. The next stage is anger. I find that patients in the denial and/or anger stage may be somewhat more difficult to accept the necessary pre-operative information. The denial patient may not "hear" what you are saying or the angry patient may record the session trying to get you to say something that he/she can prove wrong later. In either case, you will most likely need to present all the information to these individuals again post-operatively. And that recording? Don't worry about, it was a stage of grief and they probably won't ever listen to it. The third stage is bargaining, we all know what this is and everyone has done it! The next stage is depression. This is normal, but it is also important for the SLP to be aware that depression may progress beyond normal. Should one believe this to be the case, the patient's surgeon should be consulted. The last stage is acceptance, easier for some than others. However, the information you impart, your counseling skills and knowledge, may just be the key to making this "easier" for your patients. Not all patients will pass through all five stages, nor may they necessarily pass through the stages in the order presented, but there will be some stage of grief for all patients. Therefore, it is imperative that the SLP remember the stages of grief and try to summarize what stage the patient might be in, then customize your pre-operative consultation information and style to meet the individual needs of the patient at that particular time.

Each individual SLP providing pre-operative consultation MUST be knowledgeable. An SLP without knowledge providing incomplete or just flat out wrong information may do more harm then good. Don't address what you do not know. If you are asked a question that you don't know, say you don't know or are not sure. But don't drop the ball there either. Get the answer - and provide the patient with that answer. Chances are you will be asked that question again by another patient anyway. If it is a specific surgical question, feel free to defer that question to the surgeon. Write down the questions you cannot answer for both you and the patient and be sure you organize how the answers will be addressed before surgery. Remember just a "little" knowledge can be a dangerous thing and it will be your patient who pays the consequences for your lack of knowledge.

When, Where, Who, How, and What for the Consultation:

When: The pre-operative laryngectomy consultation should ideally be accomplished several days or more before surgery. Timing the consultation in this manner, allows the patient to call and ask questions which may arise after they leave your office and allows time to schedule any additional consultations which may be deemed warranted as a result of the consultation. Additionally, if the patient wasn't "hearing" you, this time frame will allow for an additional consultation.

Where: The consultation should occur in your office, consult/conference room or "day" use room. One should definitely avoid using "surgical holding" or the surgical waiting room. If the consultation occurs in the hospital where the surgery and immediate post-operative care occur, I find that the patient greatly appreciates a visit to the floor and nurses station that they will be transferred to post-operatively. Not only do they get to see the physical surroundings, which provide comfort, but more importantly, they get to meet some of the staff who will be taking care of them. The prospective laryngectomee will get to speak and voice with their caregivers, an empowering ability, that the patient appreciates not only pre-operatively, but even more so post-operatively.

Who: Who should be present with the patient during the consultation? Spouses, significant others; close family members and any individual the patient may be staying with immediately post hospital discharge. I would like to say "the more the merrier" but unfortunately there are limits. The number of individuals should not exceed the number which fits comfortably within the consultation setting. Having too many individuals may become unmanageable and not allow for the necessary information to be imparted, in the way it needs to be shared, with that particular patient. Another distracting factor may be a toddler or infant. Younger children may or may not be distracting depending on the child's attention span and/or what they are given to do while in the session. It may be necessary to ask that the younger family members not attend. This may cause problems if there is no one to watch them and may also hurt someone's feelings. Be tactful but also remember that young ones don't need the information that will be imparted and that this pre-operative session is all about the patient! Remind your family members of that if necessary. Despite our best efforts, sometimes our little folks will need to be present, if so, give them something to play with, if they didn't bring anything, and be sure to seat them in a position which will not be distracting to the patient. What can be done if there are more members wanting to attend the session? Or what should be done if there are family members that are not present during the session but still want or need the session? If time permits, have another session. The patient may or may not be present. However, one of the most beneficial options is to ask the patient if he/she would like the SLP to meet with non-present family members while they are in surgery. This is usually a comfort to the patient but also provides the family with something to do during the hours of surgery as well as a feeling that they are helping their loved one during that time. It is recommended however, that you do not take the family away from the surgery area. You should be able to use the surgical consultation room usually located within or next to the surgery waiting room. This option, unfortunately, is only available to those SLPs who work in the hospital setting. Unfortunately or fortunately, having too many family members present for the pre-operative consultation is not a problem that occurs frequently and is actually a very good problem to have. The biggest problem I see with regards to who should attend the session is when I find the consultation to occur with only the patient. Therefore, the staff ordering and scheduling the pre-operative consultation, should inform the patient that it is best to bring someone with them for this visit. When a patient does attend this session "solo", it may be indicative of a weak support system.

How: After we introduce ourselves, how do you introduce the subject? This is commonly reported by less experienced SLPs as awkward and they worry they might get it wrong and lose the patient from the start. There is no right or wrong way and the SLP must modify this to fit the individual's needs. The introduction should be done in a manner in which the SLP feels totally comfortable and portrays genuine concern for the patient. Do recall that the patient has already heard and understood the word "cancer" and this may be a starting point for your introduction.

I have used many introductions and do not have any set protocol, but I am very comfortable with the information and can allow for what the situation presents to determine my introduction. Some suggestions reported in the literature include something like the following statement: "Dr XYZ has told me of your diagnosis and he also has told me what he is planning and has asked me to talk to you about it". It is important to tell the patient of your direct consultation with the surgeon or with his surgical staff which the patient has already had contact with. Another suggestion is to introduce the topic with something such as "I am sorry that you have been given some bad news.... "

What: What information should be included in the pre-operative consultation session? The session should begin by telling the patient that the goal of the session is to provide information. The patient and attending family members are told that they are free to ask questions any time and in fact are highly encouraged to do so. I can't stress enough how important it is to have this open atmosphere of conversation throughout the session to ensure a successful interaction. While avoiding the direct question of, "Do you understand?", it is important to frequently ask indirect questions to assess understanding.

 

PART 2, CONSULTATION will continue in this column next month.

 

 

 

 

 

On Hissing, Home and Hope


They say “familiarity breeds contempt” and I have no doubt it can be true. That is why it was only after much soul searching that I embarked on my latest adventure. I sold my cute little condo with its neatly manicured lawns and tidy, if somewhat unimaginative, landscaping, not to mention two bedrooms, two baths and a nice garage and invested the proceeds in a large addition to my son and daughter-in-law’s home. This project includes my own private apartment which I have designed from the floor joists up. I have a great kitchen planned for my loft style, light filled aerie and a sunny library complete with cozy window reading seat to serve as a buffer between my place and my kids and their “soon to be kids’” bedrooms. Close enough for the “nanny granny” to help out and be a part of my expanding family’s life and private enough so I (and they) have our own space. Plus, I can just pack up and hit the road when this old gypsy wants to take a road trip (and not worry about my cats or the plants). Sounds pretty good, doesn’t it?


I have no doubt it WILL be…"will" being the operative word here. As I write this, I am sitting on an inflatable air mattress in an attic two days away from a tear down, with practically all my earthly belongings in storage. My dream apartment is tantalizingly close…I can visit it in its bare stud walls/no windows state (they are being delivered tomorrow)… if I want to climb a ladder or crawl through the attic window.


It turns out that even in this dismal market, my condo was appealing and it sold unexpectedly fast to someone who needed to take immediate occupancy. We hadn’t even broken ground yet, due to Maine having its worst winter since 1971 and then, of course, Mud Season. I was OK staying in the kids’ semi-finished attic during construction and then we all got a bad case of the “might as wells”…known to all of you who have ever tackled home improvement projects. “I suppose, if we are going to this now, we might as well do that, too”.


So, after reviewing plans with our builder and our checkbooks, we all took a deep breath and decided sooner rather than later. Consequently, I have been booted out of the attic (the rest of my stuff and all their stuff has been hauled into ANOTHER storage unit). I’m off to their RV in the side yard while we raise the roof to make proper bedrooms for the children my son has finally determined he better get working on if he doesn’t want to be my age when they are teenagers!


I have decided that when his brood reaches adolescence, he can buy me out, turn my apartment into a family room/office/retreat/whatever. I’m moving to Portland and buying a high rise condo overlooking the harbor, where he and the teenagers will be “by invitation only”. My long-suffering and beloved daughter-in-law can come anytime. I have done adolescence twice (mine and his) and I didn’t enjoy either one of them. I am NOT doing it again.
All these plans are well and good but I have to keep my eye on the prize, because I am living in the middle of a construction and destruction zone. What we all need right now is a vivid imagination and courage…although Cori’s front flower garden is lovely, everything else is just unfinished lumber, Tyvak, dirt and rubble. The new roof shingles look nice, so there is hope.


So, has all this familiarity bred contempt? Not really, although I suspect I am not alone in having mad muttering moments of “What WAS I thinking?” People who know me have often asked about my darling babies (AKA the kitties) and I am happy to report that all the animals (theirs and mine) seem to have settled into a semblance of the Peaceable Kingdom. Although there was a whole lot of hissing going on the first few days! All of it from the cats and none of it from the women, I might add. My son and I have growled a few times but it is more show than substance.
When I was studying gerontology one of the issues we explored was why some people seem to age better than others. Not just medically or physically, but psychologically and emotionally. One of the more intriguing possibilities was their history of adaptability. The theory goes something like this. Age brings with it many changes, some of them natural and inevitable, others caused by age-related disease. These physical and mental changes can lead to loss and limitation. How individuals adapt to these losses and/or limitations depends largely upon how they have adapted to changes in their past. People who have spent a lifetime adapting to the world around them as opposed to insisting that the world adapt to them seem to fare much better.


It may explain why after medical advances in maternal care in the first quarter of the 20th century substantially reduced the number of women dying in childbirth (until then, the number one killer of women of child-bearing age), women have steadily out-paced males in life expectancy and survivorship after losing a spouse. Certainly life-style factors play a role, but I do not think we can rule out the psychological importance of life-long skills of adaptation, fostered by cultural expectations and societal constraints.


You can argue that adaptability may not account for gender related aging differences. It is just a theory, albeit an interesting one. I maintain, however, that adaptability, as a distinct and measurable coping strategy, is highly effective in managing and surviving difficult and unwanted changes and even thriving despite them, whether they be the infirmities of old age, trauma, misfortune or sickness. We are, truthfully, not equally adaptive; even the adeptly adaptive are not consistent. We all have our good and bad days.


So as I sit here in my ever dwindling space…talk about down-sizing…I have to draw on my adaptability. It has served me well in the past. Cults, contrary children, careers, cancer, construction…change is cool.
Does that mean I find my son’s penchant for fast, noisy and frequently broken machines annoying or that my darling daughter-in-law’s dithering drives me to distraction? Absolutely. Does it mean I love them any less? Absolutely not.
I am eccentric, flamboyant and I talk funny. Nevertheless, they proudly introduce me to their friends and think I will make one helluva grandmother. We are family. We love each other in spite of our faults.


And this is my theory of how you get through the messy business called life. Families breed love and love breeds freedom. Freedom breeds adaptability.

 

 

 

 

 

Turning Lemons into Lemonade

 

Goal setting is a very practical approach to getting through a new situation. Whether the topic is moving your household, developing a garden, or the need for pre or post-op counseling for laryngectomy surgery and rehabilitation, it takes some preparation to obtain the optimum results.

Since the first organizational meeting of the International Association of Laryngectomees well over 50 years ago, the total rehabilitation of laryngectomees has been the foremost stated mission. The base strength of local clubs is their contribution to this goal by offering ”Visitation Training” for those well rehabilitated laryngectomees who wish to visit the newest laryngectomees in the hospital and in their homes. The object is a face to face meeting that offers hope and information. This is often done by a “team” of trained laryngectomees who leave literature and sample products for the patient and family to peruse when they are ready.

We recognize that there is a lot of new information, a new vocabulary, the shock of the diagnosis for some, and a sudden laryngectomy that may be even an emergency procedure. For some individuals this becomes a state of denial, or NO MEMORY. It seems to me this is like our computer telling us there is no file set up for this information so our attempt to save it is “invalid”. There are some preliminary steps to take as they enter this new territory to guide them along the path to recovery. Set up a “file”, hang out the “welcome” sign, and we are there to help when invited.

Recently, some of us saw a TV program, and …once again the media got it very wrong because somebody didn’t do the research before airing a story. My concern is twofold: this type of reporting dismisses all the hard work of those who have gone before us, and it may discourage someone from taking the risk of laryngectomy surgery to save their life.

My efforts since viewing the recent program have been five-fold:

1. Offer the same support to a new laryngectomee that we always do (IAL, WW & local).
2. Move away from the tone that was set “On Air”.
3. Prevent any possible scam that may be afoot.
4. Get the subject & family in touch with the appropriate agencies that are already set up to help address such situations.
5. Turn this lemon into lemonade for all with good press/media. When we give interviews for an article, whether it is a newspaper or TV, we must review it for content and accuracy. That is a condition the interviewer should welcome.

In this particular case I know the local club and president well enough to trust they knew what they were doing. They have used the Visitation Training Manual, by Shirley Salmon, PhD, Loma Linda University Medical Center’s staff for their training and certification classes, and have set up a model of communication with the Medical Center, doctors and ACS that works well.

Here is a sample of the postcard they use to obtain all the information they need. Follow up information, visit approval by professionals and patient involved in the visit, is recorded. When mailed to the club it is kept on file for reference. Please note that the patient must also initial the postcard, which is important for any future claims that the patient wasn’t told, when perhaps they just forgot the experience.

 

I hope you’ll agree that The Inland Empire Nu-Voices Association has played an important role in the training of Visiting Laryngectomees, and working with the professionals who serve the newest of our laryngectomee community. They did their job well recently, as they followed their planned program. If you would like more information about their approach to training and management of visiting new patients please contact Don Layton, President, at: nuvoiceclub@pacbell.net

Elizabeth Finchem
Tucson,

 

 

 

 

Annual General Mumbling


by  Rosalie Macrae
 

It was a fascinating experience the other night to be silent in the company of larys, just a spectator and lip-reader and not a very good lip-reader, I must confess ; not jumping up and down as usual to make  suggestions to appear in the next  report.  Often a silly, un-researched ego trip  on my part and a lot of tosh.  I empathised  with members of the Great Ordinary people  out there (GOPs).   I often dismiss them  as probably brain challenged because they can't read my  eloquent lips.   What rubbish they would access at times!

 

It was the  Annual General Meeting at my local  branch. With all the usual minutes, and fal-de-ral  set in stone at meetings everywhere -  parish church ,parliamentary committees, or recovering stag hunters , it is like any other meeting really. Our  booze cabinet is unlocked for longer, the coffee is stronger, Blue Mountain maybe, and the caregivers, bless them, bring even higher mounds of goodies...totally impossible  for this lary to tackle.  It is almost a status thing. Our own little May Harvest Festival. The chilliest, creamiest,  fruitiest, curry-est contributions.  Because of my tiny, delicate tum I bring  mashed avocado special,  with extra dip in a  crystal jug for fans who dip their honest wholemeal bread in it.    No ciabatta in this no-nonsense neck of Essex, UK,  grazie.  Unless you  are lucky enough to know an Italian fish-and-chip shop family where they bake their own in the upstairs sanctum beside the little  altars, bleeding hearts, fading sepia photos and mammoth television sets.  A culinary coliseum away from the ready-sliced Mother's Pride  bread wolfed  down by customers  with their thick chips and strong black tea.  Food of the gods.

Back to the AGM.  It is the only occasion when I have to use my hearing-aid.  I hate it passionately as it is one more thing to lose.   Last Wednesday I forgot it after rushing back home to add some Tabasco to my avocado brew. The hearing aid was located eventually today , behind the Daddy's Sauce.  This brown stuff  is still the favourite weapon used by our armed forces to camouflage the taste of canteen cooking when they try to go upmarket and French.
 
Right, sorry, AGM.   As at all AGMs, there is a top table.  Ours is brown and highly-polished. You only get to sit there after constitutional elections  as laid down in the Magna Carta  in 1214.  The Pilgrim Fathers probably took it across the Atlantic wrapped in vellum.   Even  presidents and  kings and dictators do  not have the power to turn over  the decisions of an AGM.  In terms of seniority, achievement, brains , or at least the ability to sound as if you have them in abundance, you are , for the duration of the meeting, up there with the creme de la creme .  This is why there are often blood  feuds between members for a place at the table.  The Essex Sopranos.  New Jersey is small potatoes.
 
Lionel is our chairman.  Lionel is a true hero. He has been a lary for 25 years. He is known as Mr. Santa Claus in his town because he chops down Christmas trees from his large garden and sells them cheaply for cancer charities.  His EL voice is great for doing Ho Ho Hos.  He is just back from crewing a yacht-load of disabled people round the Caribbean, and then went off to fish a secret river in Connemara in Ireland.  A broth of a man, a generous man.   BUT,  Lionel economises on batteries.  He speaks so softly with his Servox, pressed closely into the hollowed sweet spot in his neck, that it is impossible to know what on earth he is on about at meetings. His wife Jean told me what he said the next day.  He can't be heard on the phone. In a hurricane, no problem.   Up the mizzen.
 
Bryn is the secretary.  He writes the minutes and is Lionel's stooge.  They do a good comedy double act at the top table.  If you can hear them.  He has a very cultured, soft Old Etonian prosthesis voice. He says not to be fooled.  It was very loud when bossing his men around in the Guards where he was a captain until  he found he was losing his voice.  His is a real tragedy.  It was discovered not long  after the laryngectomy that the voice removal had been totally unnecessary.  Bryn is a another hero and accepts his “rotten luck” with Welsh stoicism.   He never complains.  Occasionally, after a couple of vinos he mentions the  six months he spent in total silence , somehow managing to hold down an office job.  Marie, his beautiful partner, has hair as white and shiny as his own.   They have at least ten children between them.   I have had lots of political discussions with Bryn.  He is maddeningly polite but definitely anti-establishment.  Being an Army officer does that for you or you become a clone.  But a few yards away from the top table you can't hear  their wit.  I remember that before my operation he spent hours just sitting there quietly by my bed, assuring me that he and Marie would always be there.
 
Marie, too, told me what I hadn't missed. It had all been downbeat, deciding as they always do to give it another year to see if more people turned up; and what  bad form it had been to stay away because of the European football cup final in Moscow. Had they not heard of  videotapes?  I told you we were behind the times here. 
 
Number three at the top table is the treasurer, Alan, who belches for Britain, brilliant esophageal speaker.  I was able to actually hear Alan.  But my interest waned when it came to the £40 petty cash spent on photo-copying and stamps and envelopes.  I thought of Ken, my  daughter's father-in-law, a dedicated accountant who once spent an entire holiday tracking down one missing penny in a golf club's accounts.  Alan would just have given one of his wheezy laughs and said we'd know the fraud squad had caught up if we didn't see him at the next meeting.
 
And number four of the Big Yins - as Billy Connolly would call them - is vice-chairman David.  Another place and time away he lived in an Elizabethan hall house across the village street from me.  He bound rare books people sent from all over. He repaired my first edition Mrs Beeton, falling to bits, for a mere bagatelle as our daughters went to the same  little school.  We  lost touch and let out a mutual OMG when I was helped into my first AGM three years ago.  It was just six weeks after the laryngectomy when I was told sternly by the speech therapist Maggie to go to the AGM, even if it killed me.   David, who speaks all three ways,  told me he always knew I would get my come-uppance by writing for the gutter press.
 
From where I was sitting at this AGM  I could see his legs and arms in constant agitated tremor under the table and I felt sick.   He was very quiet. I didn't phone the next day. David lives alone.  He dashed off to watch the last of the football he said.  Until he decides otherwise  I will ask no questions.

From where I was sitting at this AGM I could see David was all impatient to dash home to watch the last of the football. He cruelly remarked on the way out that I was like one of these Texan Fundamentalist wives..and here was me thinking I looked a bit different in a long blue denim frock, black boots, hair slicked up. All the wives look lovely and feminine and flowery. This is why they are wives and I am a widder woman with no Clints on the horizon. So I too dashed home to watch the last of the football. I changed into a feminine and flowery housecoat for the game dammit. Pity they couldn't have seen me like that at the AGM

 

 

 

Two Legs and One Lung - A Story of Success

 

 

To All WebWhispers --

 

On May 15, I will be celebrating 10 years of life since my total laryngectomy in 1998. Just last week, on May 6, I celebrated an even more remarkable milestone .. 9 years since my right lung was removed, in a desperate effort to stop the 'terminal' spread of cancer. There has been much to be thankful for since then, but for now, I would like to share one story in particular.

 

Immediately following my pneumonectomy, I underwent 12 weeks of doctor-ordered pulmonary rehab at the local hospital. These sessions helped me so much that I took advantage of a voluntary, continuing program that meets 2 times per week. I've found this program (mostly aerobic exercise with weight training) to be an absolute godsend and, over time, have managed to increase my treadmill exercise to one full hour at 3.5 mph, at maximum (15%) incline.

Our daughter Susan (who was just graduating high school ten years ago) is an RN living in Indianapolis, and for my 58th birthday last August, she signed both of us up for the Indy 500 Mini-Marathon, scheduled for May 3, 2008. As I soon learned, the 'Mini' is the largest half-marathon in the United States and is, overall, the eighth largest running event in America. I was comfortable walking 3.5 miles, but 13.1 miles? And, could I function in the sold-out, full capacity, field of 35,000 runners and walkers? This was to be Sue's third year in a row of walking in the event, but the previous two years had been with friends her own age, all of whom had two lungs and strong voices that could be heard in a crowd of 35,000 other voices. I warned Sue that I might not be able to do this, but she seemed to have more confidence in me than I did, and assured me that there were lots of emergency vehicles on stand-by, just in case.

It was not without apprehension (and moments of stark fear) that Sue and I lined up near the rear of the pack, in the chilly, pre-dawn gloom of 'race day'. Participants were staged into 26 different 'corrals', A through Z, and aligned across all 4 lanes of blocked-off Washington street, in the heart of downtown. Luckily for me, we were in corral Z, so I could see only the backs of a few hundred people in front of us, and another few hundred smiling (and noisy) faces behind us. It was not until later, when the local TV station posted photos, that I could see the starting line, and the sea of humanity that was 35,000 strong. As one who avoids crowds, I was happy that I didn't see this photo before the race!

From the starting gun at 7:30 AM, it took us just over a half hour to inch our way to the starting line, which meant that the top runners were already half finished before we even started! An electronic chip on our shoe lace triggered our starting time, and incredibly, the crowd spread out quickly, and we were able to walk at a fast (but comfortable) pace, as we bobbed and weaved past slower walkers (yes, there were slower walkers, lots of them!). We hadn't traveled a quarter mile when an unexpected cough caught me off-guard, and made a mess of the new filter in my hands free valve. Ordinarily, I am a very discreet 'cougher' and always use the privacy of a restroom or my own office at work, so this early set-back had me especially worried. Armed with two pocketfuls of Kleenex, it didn't take me long to realize that even in this crowd, people had better things to do than stare at me, and besides, I'll never see these people again! Our pace slowed only slightly as Sue noticed my difficulty, and allowed me to nonchalantly make the needed repair without breaking stride. It took a couple attempts, but I finally had the filter clean enough to resume normal breathing, and away we went, careful not to make that same mistake again.

The gloom of the early morning gave way to a beautiful blue sky, white billowy clouds, and the most pleasant breeze anyone could have hoped for. The route included a lap around the 2 1/2 mile oval that is the Speedway, residential areas and, eventually, returning in the direction of the impressive skyline of Indianapolis. High school bands, rock bands, country-western bands, and even square dancers and cloggers lined the route, such that we were not out of earshot of one before approaching another. Even in the neighborhoods, folks were sitting on their front porches, cheering and waving, and wishing us all well. It was an atmosphere that was so unexpected, that it is almost indescribable. To be among that many people of all shapes and sizes, and from all walks of life, and each one smiling, laughing, and offering encouragement, was an experience I'll never forget.

Three hours, 14 minutes, and 14 seconds after crossing the starting line, Sue and I finished, hand-in-hand, tired but not exhausted, and with a feeling of accomplishment I had not felt in a long, long, time.

Officially, 30,082 people actually finished the 13.1 miles. Sue and I finished 25,032 and 25,034, respectively, and averaged just over 4 mph. The stats were further broken down by gender and age, and I finished 779 out of 932 males in the 55-59 age group. Those statistics probably aren't too impressive to most people, but for a guy who wasn't expected to walk out of the hospital 9 years ago, I am totally elated.

The 'Mini' has had a surprising and almost profound effect on me, due in large part to my initial worry and apprehension, but then followed so closely by a sense of accomplishment and exhilaration. It has also demonstrated to me, in a very real way, the value of regular exercise, and of trying something that you have been afraid to try. Add to all of this the beautiful weather, the friendly crowd, and the company of one of the people I love most in this world, and it could not have been a more perfect day.

Thanks for reading to the end, and may God bless all of you, as He has blessed me!

 

Dave Greiwe
 

 

 

 


 

When Helping Hurts...but is so Worth the Pain


It’s taken me almost three months to find a way to be able to put into words my first experience in helping, with one-on-one support, those just going through what many of us have been through in one way or another. I thought I was more than ready, as I was already supporting our local clubs, but found that I was ill prepared for the other journeys for which I had volunteered. I was blessed to be allowed to participate.

Wanting and needing to be helpful to them, I took the plunge. After all, isn’t that how we all start? We do our best to give back and go on from there. It’s also a great demonstration of what a network of caring laryngectomees can do to inform, to find others who can do what is needed to help, and to give to the extent that we can.

This is a story about Theresa and Gordon Hurst and their friend, Mary.

Gordon and Theresa came from Las Vegas but Theresa’s medical care was at UCLA with the same doctors that took care of me with my free flap. I could give rave reviews and assure them they were in very good, experienced, and caring hands. Speaking of caring … when we first visited them, my loving husband came along to lend support to Gordon, who would gain some needed insight from another husband/caregiver.

Not realizing that Teresa was in ICU, I was shocked at this first experience in suiting up in the yellow gowns and masks … silly me because what was the mask going to do for me?? But I was more interested in Teresa, who was so unresponsive. According to Mary, she just didn’t want to deal with the whole terrible ordeal anymore. Mary was a great friend and didn’t allow any slack from her friend and patient but, that day, nothing seemed to work.

The next Tuesday was a wonderful day for all of us. Theresa was out of ICU and on the lary floor. She was responsive and mouthed “I want to go home”. And I got a smile out of her when I told her the way to get back at Mary was to get up and around so she could kick her butt! We were all jumping up and down with glee. But our glee was short lived.

Only a few weeks later, Gordon wrote:

“Sorry that I have been slow to respond. Theresa passed away on March 13th.

The day that Diane, Mary and I spent with Theresa (Feb. 19) was the last day that we had communication with her. It was a very good day for all of us. Theresa smiled for the first time since I don’t remember when – we felt that we were on our way to recovery. The following day Theresa suffered a stroke and then in the following week she had more.

You are very special people – in our lives, if we are blessed, we get to meet people like you. We will remember and think of you always.“
Gordy

Shortly after, he sent a beautiful remembrance card that detailed Theresa’s services, a beautiful picture of her and a thank you to us. It was truly touching. Instead of flowers, Gordon wanted donations to be sent to WebWhispers! They did not even get a chance to join but it was Gordy’s way of showing his gratitude.

As painful as it still is, I’m so happy and blessed to have had the opportunity to meet these amazing and wonderful people!

Lesson for me: Blessings come in many different ways and all we need to do is be receptive and positive.

Diane Davis

 

 

 

 


 

Antarctica

Len Librizzi

 

My wife, Maryann has always had the desire to set foot on all the continents. She is the adventurous one – I am more cautious. She likes to travel and see everything – I like to travel so I can relax and get away from my chores.

 

We started thinking about going to Antarctica. Looked on the Internet to find a cruise going there. The big cruise ships could not get near enough to really see Antarctica up close and personal. We finally found a few small ships that went in and out of narrow passages and made two or three landings a day by Zodiac. The program included a staff of naturalists to give lectures and also some real adventurers who went to the South Pole following the same routes of the original explorers. Looked like it was going to be a wonderful trip. We got Peggy Byron to get more information and take care of the booking details.

Then after all the reservations were made – reality set in. Was I nuts? – a laryngectomee going in rubberized rafts in water below 35° having to jump on the raft from our cruise ship and having to get out in a foot of water and wade ashore. Then I started reading about Drake’s Passage – the area between the southern tip of South America and the Antarctic Continent. Read that it was the roughest stretch of water in the world, but that was OK if you didn’t think about it. Right – nothing to worry about – we were on a cruise ship and I’ll bring medications for seasickness. The “cruise ship” had up to 114 passengers and a crew of 75. The Corinthian II had a Length of 297 feet, a beam of 50 feet and a draft of 12 feet – just like a cork floating on the waves!

The day finally came. We set sail from the tip of South America. The rooms were excellent, but we had these metal rods in the corner of the cabin. I had no idea what they were but we would soon find out.

Had a nice Gourmet dinner and then had a lecture on the Drake Passage. We were told the elevators would not be running while we were in the Drake Passage. Then they told us about the metal rods – They were to make the cabin “Drake Proof” – when all the drawers in the furniture were closed, you put these rods through the stack of drawers so that they would not fly open and deposit everything on the floor of he cabin. On the way back to the cabin for the night – surprise – there were barf bags every two feet in the passageways.

For the next few hours we went through the beagle channel where we started spotting the wildlife. There were many birds – albatross, petrels, sags, gulls, terns and penguins (yes, penguins are birds). There were also dolphins and sea lions.

During the night the room started moving – tried to get up and go to the bathroom and was thrown into the wall. It was like running down a steep hill and when you got to the bottom you were now at the top and started to run down the hill in the opposite direction. Only two days like this going to Antarctica and then two days at the end coming back. My guess was that angle of the room was about 15°. The next day at breakfast seemed to be relatively calm and we were told the second day would not be as bad. Also were told that from a scale of 1 to 10 it was only a 4 the previous night – now I understood why all the wines and drinks were included.

The next five days were like a wonderful dream. We traveled through ice flow, close to icebergs and made many landings to visit the penguins, seals, sea lions and even some people. It was summer in the Antarctic and the weather was perfect – the sun was out every day and there was only a small period of fog and snow. Each day was above freezing. The coldest weather on the trip was when we landed at JFK in New York – 12° and windy.

 

Ushuaia - The end of the world Albatross following the ship Giant Petrals fishing
     
Penguins showing off Chinstrap penquin Mother caring for offspring
     
Sea Lion Corinthean II Leopard seal
     
Penquin colony Whale bones on the beach Humpback whales
     
Seeing a glacier up close Iceberg grounded in the bay Typical sunset
     
Ice flow broken from ice shelf Seal's private ice flow Landing by Zodiac
     
Time to relax Even a seal finds time to relax Penguins living at research station

 

 

 

Welcome To Our New Members:

 

I would like to extend a "Warm Welcome" to our most recently accepted laryngectomees, caregivers, vendors, and professionals who have joined our WebWhispers community within this past month. There is a great wealth of knowledge and information to be accessed and obtained from our website, email lists, and newsletters. If ever there should be questions, concerns or suggestions, please feel free to submit them to us from the "Contacts" page of our website.

 

Thanks and best wishes to all,

 

Michael Csapo

VP Internet Activities

WebWhispers, Inc.

 
 

We welcome the 71 new members who joined us during May 2008:

 

Donald F. Aitken
Tillsonburg, Ontario, CAN
Ralph Allen Jr.
Tampa, FL
Gail L. Anderson
Lynn, MA
     
Patricia Atencio - (Vendor)
Oceanport, NJ
Bob Bauer
Hayward, CA
Tyra C. Bell Jr.
Joplin, MO
     
Sharon Campbell - (Caregiver)
Franklin, MA
Gilles Decelles
Lachine, Quebec, CAN
Sal Diana
Hicksville, NY
     
Laura J. Doty - (SLP)
Mendota Heights, MN
Stuart Russell Dunn
Mount Brydges, Ontario, CAN
Lauren Ellis, MS, CCC-SLP
Roanoke, VA
     

Riley Harris Ellis
North Fort Myers, FL

Jacqueline Ferns - (SLP)
London, UK

Michelle Freeman - (Caregiver)
Pittsburgh, PA

     
Herbert Fruitman - (Returning)
Toronto, Ontario, CAN
Thomas O. Gerstung
Loveland, CO
Amanda Gillespie - (SLP)
Washington, DC
     

Lise Mueller-Goodrum, BSN, RN
Conroe, TX

Larry Hampton
Louisville, KY

Joan Harris
Centennial, CO

     
Jack Haubenstein
Medford, NJ
Lori J. Henkener - (SLP)
St. Louis, MO
Terry Humerickhouse
Houston, TX
     

Donald Jaskiw
Edmonton, Alberta, Canada

David Jenkins
Lafayette, LA

Linda Jenkins - (Caregiver)
Lafayette, LA

     

Trevor Jenkinson
Charley Lancashire, England

Fayaz Ahmed Khan - (Caregiver)
Karachi, Pakistan

Sue Keblusek - (SLP)
Langley, WA

     
Bob Kelley
Santa Clara, CA
Dawnae Kenny
Queenland, Australia
Jerry Koller - (SLP)
Jerusalem, Israel
     
Pauline A. Mancusco
Totowa, NJ
Kay Milligan
Newark, NY
Pat Mills
Weaverville, NC
     
Larry T. Minto - (Caregiver)
Edinburg, PA
Jeanne R. Monty
Mandeville, LA
Alex Nagy
Burnaby, B.C., CAN
     
Margie Newman
Austin, TX
Martin Noone
Dublin, Ireland
Lynne Osterman
Sarasota, FL
     
John R. Peterson
Alexandria, VA
Christine Price - (Caregiver)
Denbighshire, United Kingdom
James Price
Trenton, OH
     
Laurie Price
Denbighshire, United Kingdom
Jowanna Price - (Caregiver)
Trenton, OH
C. R. Mohan Raj
Bangalore, Karnataka
     
Brenda Rice
Asheville, NC
Floyd M. Sanders
Nederland, TX
Ronald R. Schreiner
Nebraska City, NE
     
Howard Schrupp
Florahome, FL
Howard Schrupp
Florahome, FL
Naidene Shroyer
Geneva, NE
     
Thomas Shults
Tunica, MS
Melinda S. Smith - (Caregiver)
Ashville, AL
Harry T. Stewart
Charlotte, NC
     
Gary L. Stinar
St. Paul, MN
Judy Ann Sylstra
Easton, PA
Barbara A. Taylor
Edinburg, PA
     
Larry Thomson
Alberta, CAN
David Torres
Acworth, GA
Toni Turnley - (Caregiver)
Baton Rouge, LA
     
Andre Vaughan
Richmond, VA
Debra Vaughan - (Caregiver)
Richmond, VA
Naishadh Vyas
Ahmedabad, Gujarat, India
     
Susan T. Waylen
Ashville, AL
Carolyn Ward
Kennebunkport, ME
Ashley Webb - (SLP)
Glendale, AZ
     
Harris L. Yates
New Braunfels, TX
Ghulam Bin Zafar
Karachi, Sindh, Pakistan
 
     

 

WebWhispers is an Internet based support group. Please check our home page for information about the WebWhispers group, our email lists, membership, or officers.
For newsletter questions, comments or contributions, please write to editor@webwhispers.org
           Managing Editor - Pat Wertz Sanders
           Editor - Donna McGary
 

 

 

Disclaimer:
 
The information offered via WebWhispers is not intended as a substitute for professional medical help or advice but is to be used only as an aid in understanding current medical knowledge. A physician should always be consulted for any health problem or medical condition. The statements, comments, and/or opinions expressed in the articles in Whispers on the Web are those of the authors only and are not to be construed as those of the WebWhispers management, its general membership, or this newsletter's editorial staff.
 
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  © 2008 WebWhispers
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