Whispers on the Web - May 2012May 2012
Name Of Column Author Title Article Type News Views Pat Sanders
Caring Goes Both Ways News & Events VoicePoints T W Cavanagh,
M.S.,CCC-SLP, BRS-S Tracheostoma Education-Med Between Friends
Donna McGary Adult Onset Asthma Commentary Speaking Out Members
Family Reaction To Cancer Opinion Nuf-Sed Bob Keiningham Our Ace In
The Hole Commentary Travel With Larys Dorthy Lennox Before The
Cruise Travel The Speechless Poet Len A Hynds Wonders Of New Life
Prose & Poetry WOTW Editor Ron M - James P - Patricia Letters
Comments New Members Listing Welcome News & Events
Caring Goes Both Ways Caregivers and Patients comprise most of our
sizable membership and, last month in Whispers on the Web, we asked
for some of you to write about your caregivers when you first
became a cancer patient or a laryngectomee. We had 11 very good
answers, 10 of them from men, and most of those gave full credit
for help to their wives, although they mentioned others who were
also there.
It made me stop and think of our men members who had loving care
from their wives through the lary surgery and
It made me stop and think of our men members who had loving care
from their wives through the lary surgery and rehabilitation but
now have a role reversal. I know and have the greatest admiration
for the men larys in our organization who are now caring for wives
with different types of illnesses: heart problems, cancer, MS,
diabetes, Alzheimer's. This is to take nothing away from the wives,
but, I grew up in a generation and ethnic background that expected
that. The woman was the caregiver and learned with dolls, as a
child, and helping around the house… often by seeing the way Mother
did it.
My father grew up in a German household in Chicago, born just after
his parents and older brother had arrived in America. There were
eventually 6 children, who lived, and they were cared for by his
mother, the 4 boys, trained to be carpenters by their father. His
father ruled the household and insisted that German be spoken at
home. My dad had moved on to the West and then to the South and was
married when his mother passed away, before I was born, so I never
knew my grandmother. I have a faint memory of my grandfather, who
became an invalid and lived for about 7 more years after his wife
passed, and who were the caregivers? His two daughters. I
understand he was not an easy patient!
My father could fix anything, could build a new house from the
ground up, which was his kind of caregiving but I don't ever recall
seeing him cook or clean or do laundry!
So, I see these guys here on WebWhispers who have become caregivers
in their later years, a role most had not been prepared for, and I
admire them greatly, those who are caring for their
caregivers.
Enjoy, Pat W Sanders WebWhispers President
Tracheostoma Attachments Trish W. Cavanagh, M.S., CCC-SLP, BRS-S VA
Medical Center, San Francisco Chief, Speech Pathology Section The
Tracheostoma
When an individual undergoes a total laryngectomy, the larynx is
removed and the person is left with a stoma (or
When an individual undergoes a total laryngectomy, the larynx is
removed and the person is left with a stoma (or hole) at the front
of the neck. This stoma leads directly to the trachea or "windpipe"
and is the only orifice through which the person can inhale and
exhale. The laryngectomized individual is no longer able to breathe
through their nose and mouth and air does not even pass through the
throat.
Before the laryngectomy, the nose, mouth and throat worked to
increase the temperature, humidity and filtering capabilities as
well as resistance for breathing. All these aspects are lost when a
patient breathes through an open stoma. A laryngectomee who is
breathing through an open stoma is likely to be breathing drier,
colder and less filtered air than before his/her surgery. Also, the
person is likely taking more shallow breaths compared to before the
laryngectomy surgery because the nose and throat are no longer
providing resistance to the air that is being inhaled.
If a person with a laryngectomy breathes cold, dry and unfiltered
air, the airways will respond by producing more mucus in order to
warm, moisten and help clear any debris that is inhaled. The
individual's quality of life will be affected by the need to cough
out this mucus through the stoma more frequently and in larger
amounts.
Heat and Moisture Exchange Devices
There are products available to help the laryngectomized person
increase the heating, humidifying and filtering capabilities lost
after the total laryngectomy surgery. These products are called
Heat and Moisture Exchange Devices (HME). HMEs are sold by several
companies and vary in subtle ways, but, in general, each one has a
cassette with a foam filter inside which does the work of retaining
the heat and moisture from an EXHALED breath to be put back into
the next INHALED breath. The foam filter traps particulate debris
so that it does not enter the airways. The foam filter also
provides resistance to breathing which causes the user to breathe a
little deeper.
In order to maximize the benefits that an HME can provide, it is
very important to ensure that every breath the user takes goes
through the foam filter. This requires that that cassette with the
foam filter inside be placed in a housing that is airtight.
Housings
A housing is the term used to describe the product that the HME
user "snaps" the HME cassette and foam filter INTO, so that it
stays in place in front of the stoma. The housing is the part that
creates the airtight seal, which in turn, allows every breath the
person takes to go through the foam filter that is being held in
the center of the housing.
Housings are available in two basic styles. An external housing is
a round or oval adhesive "donut" which the user sticks to his/her
skin AROUND the stoma. The hole of the "donut" or disk is where the
HME cassette is "snapped" into so that it is directly in front of
the stoma. The very important, and sometimes tricky part of using
the external housing is to assure that the adhesive seal against
the skin is complete and airtight. Difficulties can arise when the
surfaces of the skin around the stoma or peristomal areas are
irregular. The irregular "topography" of the skin will make
achieving a complete adhesive seal a challenge. To give yourself
the best chance of using an external housing, it is recommended
that the skin around the stoma is clean and dry prior to placing
the adhesive housing. Users may also find it helpful to use a
silicone skin barrier, such as Skin Prep, along with extra
adhesive, such as Skin Tac, before placing the adhesive
housing.
The second general type of housing is called an intraluminal
housing. These types of housings have a portion that is placed
inside the stoma and generally do not rely on an adhesive component
to create an airtight seal. The airtight seal is accomplished by a
well-fitted intraluminal housing. The length and diameter of this
type of housing should be determined by a Speech Pathologist or an
ENT to assure a good fit. Some intraluminal housings will still
require a small adhesive component to keep it in place, but many do
not.
Attachments
Once the laryngectomized person has established a housing that is
well-fitted and airtight, there are a number of attachments that
can be placed into that housing in addition to the HME. There are
valves that allow for hands-free speech for voice prosthesis users,
several types of shower guards that can fit into all housings
allowing the user to take showers without having to worry about
water running into the trachea. Even laryngectomees who have need
for a whistle can attach a special whistle into a housing.
If you or someone you know is having difficulty getting a housing
to fit well, a speech pathologist knowledgeable in the care of the
laryngectomy patient can be very helpful. There are many products
on the market to help in this area and as an SLP working with this
population, it is our job to know the products that can help each
of our patient's unique needs.
Adult Onset Asthma
According to the AAAI (The American Academy of Asthma, Allergy
& Immunology), in 2009, approximately 24.6 million people in
the United States or 8.2% of the population had asthma. Apparently
I was one of them but I didn’t know it.
Many adults who develop asthma don’t recognize the symptoms at
first and therefore don’t seek proper treatment or learn how to
effectively manage this potentially fatal condition. An estimated
300 million people worldwide suffer from asthma, with 250,000
deaths annually attributed to the disease. More than 12 million
people in the United States reported having an asthma attack in
2008 ( the last year statistics are available), accounting for
217,000 emergency room visits and 10.5 million office visits.
After my latest visit to the emergency room in February, which
resulted in a 3 day hospital stay, I decided it was time to get
more information about this new (to me) condition. The first thing
I learned from the Asthma Educator/ nurse was that adult onset
asthma is on the rise and allergies seem to be the culprit. The
second thing I learned was that I should never again wait that long
to seek “medical attention”. The third thing I learned was how to
monitor my symptoms. Since I can’t effectively use a peak flow
monitor because of my tracheostomy, we must rely on my experience
and medical history.
My situation is obviously complicated by a tracheostomy. I am not a
laryngectomee. However, because of extensive radiation damage and
scar tissue I have a totally non-functioning airway and vocal
cords. I breathe exclusively through my stoma and my vocal cords
are permanently fused. I had many complications from my radiation
therapy and thought for a long time that my coughing and excess
mucus anytime I exerted myself was simply another side effect,
since I had had severe radiation bronchitis.
I am not so sure anymore. Years before I had cancer I had started
to notice that I would have terrible coughing spells any time I
went outside in the winter to shovel my walk and driveway. It would
subside once I went inside again, but it was quite dramatic. Then I
started to notice the coughing and shortness of breath during
exertion. My doctor diagnosed asthma and I started a rather
lackadaisical treatment since it didn’t seem all that serious. I
really thought I was just out of shape. A few months later I landed
in the ER thinking I was having a more serious asthma attack and
learned instead that I had a tumor blocking 80% of my airway.
Asthma was considered a misdiagnosis for nearly a decade until the
shortness of breath re-appeared. CT scans revealed no new tumors
and to my new pulmonologist, the symptoms were unmistakable. I had
some type of allergic asthma, exacerbated by breathing through a
trach without the benefit of a nose filter.
So we started fiddling around with meds that could be administered
through a nebulizer and with some “puffers” for
So we started fiddling around with meds that could be administered
through a nebulizer and with some “puffers” for when I wasn’t able
to use the nebulizer. Most of these, including the nebulizer were
eventually covered by Medicare Part B. I started to feel better and
got back out into the garden and then WHAM! Three trips to the ER
in as many months and I was on a whole new regimen of drugs and had
a list of possible triggers I needed to watch out for.
Once again, I started to feel better – not great, but better.
Waking up in the middle of the night short of breath I attributed
to allergies and those pesky dust mites. I told myself having
difficulty bringing the laundry up from the basement or keeping up
with my grand-daughter at the playground was just because I was
overweight and out of shape. I was wrong.
My wake-up call started when Kayleigh (my grand-daughter) got a
cold this winter which turned into "the croup". Then I caught her
cold and it turned into nasty bronchitis. I saw my pulmonologist
after the worst, I thought, was over but he still put me on a round
of antibiotics, just to be safe. My lungs sounded fine and we both
thought I was out of the woods. I had a relapse with a bad
breathing episode a few nights later but I managed it with my
nebulizer meds. The next day I felt much better, told my son
everything was okay and then I crashed. I started having breathing
problems that night and no matter what med combination I tried, I
got only minimal relief. By 6AM that next morning, I knew I was in
trouble and had to wake my son up (he lives next door) to call 911.
I could barely walk or talk.
In the ER, they put me on an IV drip with prednisone, set up a
constant nebulizer with meds, ran x-rays, an EKG and discussed the
possibility of bronchoscopy or intubation. I was admitted to the
ICU and learned only upon release three days later that my
diagnosis had been “imminent respiratory failure”. The
pulmonologist on call dryly commented upon my release, “It is our
consensus that your asthma is not nearly as well managed as you
think and you should never again wait that long to seek medical
treatment.” He got no argument from me!
I met with my own pulmonologist the next week and we tweaked my
meds once again. I take two kinds of “maintenance” medications
twice daily using a nebulizer. One is a long-acting corticosteroid
medicine, Pulmicort (budesonide) that reduces inflammation. The
second is a long-acting beta-agonist (LABA), called Perforomist
(fomoterol fumarate), which opens up narrowed airways and reduces
swelling. Essentially they both do the same thing but from
different approaches. LABAs are not without risk but in asthma that
is not well-controlled using just a corticosteroid, they can be
very useful. For those who have seen TV ads for Symbicort, that is
the same two medications combined in an inhaler but it is not
available in nebulizer form, so we get the same result this way. It
just takes longer to administer. I allow for about 20 minutes
morning and night on the nebulizer. My pulmonologist also added
Singulair (montelukast), which is a leukotriene receptor antagonist
(LTRA). They work to block the action of substances in the body
which cause the symptoms of asthma and allergic rhinitis. It is
also used to prevent bronchospasm during exercise. I take that in a
pill form at night. Those are just my maintenance meds.
I also have two types of “rescue” inhalers, administered with a
“puffer” directly into my stoma, which I carry with me when I go
out. I have those same meds available in nebulizer form, should I
start to have a serious attack at home. The fast-acting
bronchodilator (rescue) drug of choice is albuterol, usually in
combination with atrovent. I don’t tolerate albuterol very well. It
makes most folks shaky and elevates their heart rate, but it is
much worse for me. An alternative, Xopenex, is better, but way more
expensive and Medicare won’t cover it. Thankfully, the respiratory
therapist at my pulmonologist’s office found a pharmacist who
managed to get me a bag of the respules for my nebulizer at minimum
cost. I didn’t ask how they did it– I was just grateful. These
medications are very expensive. Even with Medicare D coverage, I
pay over $200 a month just for the three maintenance meds and the
inhalers are another $150, although I don’t need them every
month.
I say all this for two reasons. One, there have been several
questions about asthma on the list lately and I bet I am not the
only one who needs to get better educated about this chronic
condition. Second, asthma is tricky. It can be expensive and
time-consuming to get under control and keep it that way. But like
many other chronic conditions, the goal is management. In this
case, that means being asymptomatic. The asthma education materials
these days use a “traffic light” model.
• Green zone is under control: you have no symptoms and asthma
doesn’t get in the way of work, activities or sleep. Keep taking
your maintenance meds.
• Yellow zone is caution: you are starting to show some symptoms
such as tightness, coughing, wheezing and shortness of breath. Take
more medication, such as quick relief, as directed. Get away from
triggers right away.
• Red zone is medical alert: You are having a flare-up. Take action
now. Symptoms include constant cough, wheezing, trouble breathing.
Waking from sleep due to asthma symptoms. Take quick relief and
other meds as prescribed. Call your doctor and if breathing doesn’t
improve, seek medical help.
I know now that I was living my life mostly in the yellow zone for
quite some time. The new plan, which seems to be working, is to
take my “quick working” meds, 15 minutes before exercise or when I
know I will be in areas with environmental triggers, which now that
it is spring here in Maine, is pretty much every time I step
outside my door. I also take them when I feel the first sign of a
cold coming on and continue taking them 4 times a day until the bug
passes. Respiratory infection is one of the major triggers of
flare-ups. I also have in my arsenal a filled prescription for
prednisone (the super hero of anti-inflammatories). Should I get to
the red zone and find that my nebulizer xopenex and atrovent are
not giving me relief, I can start on 50 MG of it before I even head
to the ER. Prednisone takes about 6 hours to work, so my doctor
wanted me to have it on hand for emergencies.
I must admit that between keeping my trach tube & stoma area
free and clear and my lungs and bronchial tubes open and relaxed, I
often feel that just to breathe is practically a full time job.
Asthma certainly complicates things, but it is manageable. Just
last weekend I worked outside in my garden most of the day, pulling
weeds, transplanting and generally cleaning up from the winter. As
I finally relaxed at the end of the day and surveyed my progress
with a nice glass of wine, I realized that my breathing had been a
complete non-issue. It was my poor arthritic hand and knee that
were paying the price for all my playing around in the dirt, not my
lungs.
That’s progress and reason for hope.
How did your family react when you were diagnosed with cancer? Who
was your biggest supporter?
When I interviewed the laryngectomees of Costa Rica for my
documentary I was a little surprised at the detailed explanations I
received. The President of the Costa Rica Laryngectomee Association
completely broke down and couldn't even speak. His total lack of
support was devastating to him and probably the foundation for his
desire to help others. Jack
John Hendrix - Aug 2011
This is a great question and one I am sure you will get some very
good answers. My biggest supporter was easily my wife. We live in
GA and went to MD Anderson in Houston to have the TOTAL done. We
thought we would be out
there 2 to 3 weeks tops, but it turned into a 3 month
adventure.
After the surgery, my wife did everything for me. She cleaned in
and around my stoma for weeks and weeks. I was so
After the surgery, my wife did everything for me. She cleaned in
and around my stoma for weeks and weeks. I was so down, I would not
even look at the hole in my neck for the first week. After I was
released from the hospital, it was a very slow healing process. I
stayed on a feeding tube (through the nose) for 2 months and she
made sure I had all the food (if that is what you want to call it)
and meds I was suppose to have each and everyday. She would wash my
hair, take taxis to everywhere to get what we needed, just pretty
much ran herself to near exhaustion. Since I was not eating real
food, she let her diet slip because she felt guilty eating good
while I was on formula. I could go on and on what all she did for
me.
One last thing I should mention is she took all my frustration that
I threw at her and everyone. She was not pleased with me sometimes
but she did not let it faze her like it would a lot of folks. I
still have my frustrated moments, may always have them as things
still have not settled down but I am only in the 8th month of
post-op. I would also add both our employers were so kind and
generous. Mine paid me pretty much my full salary each week while
we were in Houston. My wife’s let her go on FLOA and held her job
for her while continuing her benefits. I am on her insurance plan
as it is much better than mine.
I have so many who have been there for me but my wife by far has
been my biggest supporter. I honestly do not know where I would be
today without her. We both said for better or for worse when we got
married, I hope this is the worse part. I could go on and on but
will leave it at this. As is so often stated on this web site,
thank you Webwhispers staff and members for all your stories and
advice. It definitely makes us feel that we are not in this
alone!
Joe Hilsabeck - 2009
The first time for cancer was just a state of numbness, when I had
a kidney removed and showed bladder cancer in less than a week. I
was so blessed to have my wife and two grown children, who live
close by my side all the time.
Tried radiation, which lasted 2 years before "up jumped the devil",
almost overnight. Went in for emergency trach and then
laryengectomy soon after. My children were with us all the way, but
my dear wife was my rock, nurse, soul mate, secretary, accountant,
and you name it, which got me through it all and continues each
day.
I am so blessed.
Carl Strand, Mystic, CT - Feb 1993
My wife was my biggest supporter, closely followed by my children.
At first my wife was devastated, but since she had experienced two
rounds of breast cancer, both she and I had some inkling about what
was to follow. I don't think either of us quite understood the
issue of loss of speech. However, I had a primary TE puncture and
was fitted with a voice prosthesis four weeks after surgery. As a
result, I was speaking with both the electrolarynx and TE speech
very soon after surgery.
I'm going to take the question a bit further. I was very open with
my church family about the diagnosis. From the outset they were
very supportive of both my wife and me. I tried to resign as the
chair of two volunteer organizations. I was told by both that they
wanted me to continue and I chair both organizations to this day.
My employer was also supportive. I was back to work as an engineer
in an industrial power plant six weeks after surgery.
My initial diagnosis was in March 1991, followed by laser surgery
and radiation therapy. My laryngectomy and modified radical neck
dissection were performed two years later, after the cancer
returned.
Tom Olsavicky, Grafton, VA - April 1, 2008
Of course, the whole family was shocked at the news because I had
never been a smoker or a drinker. I had been hoarse for two years
before cancer was found under my right vocal chord, so we all knew
something was not right. My wife was my biggest supporter because
she had been a registered nurse and knew that I should take the
necessary steps to have it removed as soon as possible.
What also made it an easier decision for me was that she had breast
cancer, ten years before, and I gained a lot of respect for how she
handled her mastectomy to eradicate the cancer. Don't get me wrong,
I was still scared and frustrated that it had to happen but my 4th
grandchild, who was the first to carry my family name, was due to
be born a few days before my surgery and I wanted so badly to see
him grow.
a few days before my surgery and I wanted so badly to see him
grow.
I can say that my whole family was very supportive during my
rehabilitation. Immediately after surgery, when I had to write
everything they acted like it was okay and did their best to wait
on what I wanted to say. When I was learning to use the EL with the
oral adapter, they did their best to try to understand. Now that I
have become proficient with the TruTone EL, I find that they forget
that I haven't always sounded this way. I have since had a 5th
grandchild, who will also carry on the family name, and since
neither of the boys have heard me talk any other way, they
understand me very well and accept me for who I am.
I am now 68 years old and four years out from the surgery and could
not have asked for a better outcome. I look forward to many more
years with them.
Dave Ross, Edgewater, FL - 2005
I can not identify who my “biggest” supporter was. Every family
member, friend and acquaintance gave me absolute 100% positive
feedback.
Frankly, I suspect that Dutch Helms and WW may have played a major
role in the scenario because I had undergone lung surgery in 1997,
radiation for laryngeal cancer in 2001 and had come through all
with no adverse effects on my life and relationship with others.
Then, in 2004, when I started getting hoarse again, I found WW and
for the full year prior to my laryngectomy in April of 2005, I
received a complete education and positive outlook on what I was
about to undergo. I believe this outlook was portrayed to everyone
I knew and was “absorbed” by them.
Dutch, I know you see this and all I can say is THANKS!!!! I must
also give great credit to my surgeon John Werning, M.D. and Brent
Baldwin, SLP, both with Shands Medical Center at the University of
Florida because due to their outstanding services I was speaking
with a great TEP voice two weeks post surgery.
Debi Austin, Los Angeles - 1992
Wow, fantastic topic. After 19 years I remember driving back to
work sitting in my car thinking of a line from a David Bowie song,
"ground control to Major Tom..."
My mom and two sisters were great, they never allowed me to believe
that very many things would change in my life. My neice and I
learned how to talk together, although she gave Elizabeth less
argument than I did.
My so called friends and the people in my life apparently thought
cancer was contagious, so they fell off the face of the earth. When
I ran into them in later years and they wanted to "get together" I
had better things to do.
This is one of the reasons local support groups are so important,
to support you there, now, live and in color, face to face. They
probably won't have all the info WebWhispers or the IAL has almost
at your fingertips. But you can touch someone that has been on that
road and make an amazing connection.
Terry Duga - partial 1993 - total 1995
When I first told my parents that I had been diagnosed with cancer,
my mother got all emotional and panicky (My older brother had
recently died of throat cancer.) I told them I was sorry that I had
called them. This got her very angry. They got over it and they
were helpful, but, later, when I had the total, I told them to stay
in Florida. I could handle the operation, but not the fear that
they could not hide.
But that is me.
Bob Keiningham - Sep 2008
Interesting topic! In my case my family and friends were terrified
when they thought I was going to die from Prostate cancer about
twelve years before my Larynx surgery ... but I survived. Then they
were scared when I had cancer removed from my left vocal chord a
couple of years later ... but I survived. Then they were concerned
when I went through radiation and chemo for lung cancer a couple of
years later ... but I survived.
So, by the time Laynx surgery came our way, all of us had moved
from terror to fear to concern and arrived at a "business as usual"
attitude that allowed us to laugh and joke our way through the
surgery and recovery period. I suppose "Practice makes Perfect"
describes our experiences.
My clearest memory of the deal is that my youngest grandchildren
were scared of my new voice, but I solved that by making a game of
taking each of them on my lap and showing them how to push the Lary
button in my neck to make those funny sounds themselves ... with
peals of laughter all around.
I love all of them without measure, but my biggest hero remains the
little girl who agreed to make this journey with me fifty-three
years ago and we celebrated the anniversary of that miraculous
event just yesterday!
Jim Olcott, Bakersfield, CA - June 2010
My biggest supporter was and is my wife. My entire family has been
extremely supportive along with my friends. I have also received
tremendous support from the medical community. I am truly
blessed.
Len Hynds, Ashford, Kent, England ( Speechless Poet) - June
2004
The consultant Mr Sharpe looked up as I entered his room, every
inch an English gentleman, and my life as a detective at Scotland
Yard, gave me the ability to read body language, especially in the
eyes.
Although he tried to smile I knew that the result of the biopsy was
not good. His nurse Theresa by standing beside me with a sad look
on her face, and gently placing a hand on my shoulder, confirmed my
fears.
"I'm afraid it's Spindle Cell cancer, which is a large tumour far
advanced." I had half expected this news, so had prepared myself. I
returned home to tell the wife and she wept, but then fought
against it saying, " I don't believe them. You have not got cancer,
and you are not going to die."
When I saw the Consultant Surgeon after a week of wasted radio
therapy, although I knew he was a very clever man, when he said, "
There will be danger in this operation, as you have metallic heart
valves, a pacemaker, and other replacement parts," my fears of non
survival were confirmed. I later heard junior staff talking, and
heard that in my case there was a 40% chance of getting through it.
Although agreeing with my dear wife, I secretly made arrangements
for my departure.
The news of my cancer spread, and my family was devastated, with
many friends just not knowing what to say to me. People I had known
for many years sent me messages of hope, including many criminals I
had dealt with over the years, which surprised me, and prayers were
said in churches of every denomination.
Throughout all this, my eldest son hardly left my side, in spite of
being the head of the High Tec Crime Unit, of great help to his
American colleagues during their troubles. My daughter concentrated
on looking after my wife, who still had every confidence I would
survive.
I did!
Bill Rose, Perth Western Australia - Mar 2009
I have been incredibly lucky in my laryngectomy journey over the
past 3 years (Full pharyngectomy flap surgery 14 hours etc ). The
support I have had from my family, in particular my wife, has been
overwhelming. I was in hospital for approximately 32 days and she
was there everyday along with children, as well. You are probably
all aware of the isolation you feel without a voice and I didn't
speak for around 6 months and you wonder if you are ever going to
get out of the doldrums but support gets you through in the most
bizarre way.
out of the doldrums but support gets you through in the most
bizarre way.
Prior to my operation I had planned to go and watch an Australian
rules football game in Melbourne as my home team of Fremantle was
playing there, a distance of around 3400 miles return. After the
operation I said that I would have to cancel the trip, but my wife
and her sister (a nurse) said, lets go, and dragged me along. My
head was still about as round and as large as a basketball and I
was still eating jevity through my stomach plug and I wasn't sure
how I would go on the plane but all worked out well. During the day
they would just take me aside lift my shirt put the syringe in the
tin and then squirt it into the stomach plug. I am sure some people
thought I was real weird junkie! Unfortunately, my team lost but we
had a great time and I would never had done that if they hadn't of
supported me.
The nurses at the hospital were fantastic as well and really went
out of their way for me, one nurse I now call a friend and invited
her and her partner to my recent 60th birthday party. I would never
have met her without having the Op. which is so ironical.
Other support has been from my workmates, one in particular who
continually emailed me and kept me in the loop at what was
happening at work. I never thought I would get back to work but my
friend assisted my recovery there. I started back at two days and
now have been full time for about two years and enjoy it. All of
that support gives you back your confidence and provides a sense of
belonging which is essential for a happy life.
PS. I didnt mention Webwhispers in my story but that support by
just being there goes without saying!! (Bill also didn't mention
that he and his wife came to the IAL last year and we were
delighted to meet them. P.S.)
Our ACE in the Hole
That “A.C.E.” is our A-ttitude, C-apablities, and E-ffort, that we
all possess for playing any hand that life deals us. Some folks
claim that a good attitude is all we need to sail through life, and
perhaps it is, but I’ve come to believe that developing and
maintaining a great attitude is just a vital starting place for
overcoming any problem or grasping any opportunity we choose to
deal with.
I believe that we each possess a different set of capabilities that
can be turned into genuine abilities only by generating massive
amounts of personal effort. The greatest attitude in the world
cannot overcome an innate lack of capability and the greatest
capability on earth will never become a genuine ability without
that great effort that stems from a great attitude.
from a great attitude.
Playing our “A.C.E.” in the hole can lead us to unending
achievements once we learn that it involves a never ending circle
of personal activity.
Our attitude is a product of our goals. Without specific goals the
world around us tends to shape our attitude. Our capabilities
should determine our goals. Why beat ourselves up creating a great
attitude towards the pursuit of something that we are not capable
of achieving regardless of the time and effort we give it? Why not
select something that we know we could achieve with enough new
knowledge and experience! Effort, sheer personal effort is how we
gain that new knowledge and experience. It is an exercise in
applied physics.
Sir Isaac Newton gave this secret to the world when he wrote, “It
takes more force to set a body in motion than is required to keep
it in motion and an equal and opposite amount of force to stop that
body once it is in motion.”
Once we set a new goal based on our capabilities, and condition our
brain to accept it as being important to us, we should apply
Newton’s law to the pursuit of that goal everyday of our life until
we become so swept up in the activity that we forget everything but
its achievement. We should “time-frame” the effort because “better
is the enemy of good” when it comes to throwing ourselves into that
pursuit. We need to muster all the force we can with a “ready or
not, here I come” attitude. Then, stick with the effort until our
deadline for that day approaches and we have just enough time left
for a maximum effort.
Some of our greatest ideas and discoveries on the way to a goal
will occur when we are running out of time. Some of our greatest
defeats in pursuit of a goal will occur when we decide to wait for
the effort until we are “better” prepared. Some of our worst
battles with our attitude will occur when we fail to set bold new
goals.
Nuf-Sed Bob Keiningham
Before the Cruise - a visit to San Diego
Before the Cruise - a visit to San Diego Dorothy Lennox As I read
your notes in the list about the 2013 Panama Canal Cruise, I just
wanted to send you some of what we plan, in case you might want to
add a little of it to your San Diego notes or send it to some of
the other people that have signed up for the cruise. Other people
in the cruise group might want to go to San Diego early as Tom and
I are planning to do. We are going to go early - hopefully just
after Christmas and stay in the Holiday Inn (quite a nice one)
right across from the cruise boat dock. For boarding, on January
3rd, 2013, all we'll have to do is check out and wheel our luggage
a few feet across the street.
While we're there, we'll visit Tom's old ship, the Midway, an
aircraft carrier which is now a museum just a short ways down the
street. He belongs to the Midway Magic group that is restoring and
operating her. We can go aboard any time we want and he also gets
several free tickets every year to give to friends and relatives.
We get a kick out of being in San Diego and talking to a family
with several kids that wants to go and giving them a couple of
tickets so they don't have to spend as much as they expected. Tom
would LOVE taking anyone from WW who wants to go on a tour of the
ship. He's really very good at explaining things and would like to
live there part time and be a docent but that isn't in the cards -
at least not right now. Anyway, when we went aboard for the first
time and he was telling me about the catapults and arresting gear
and signal flags and plane elevator and etc. on the deck, a whole
crowd collected to follow us around. We've been there about a dozen
times since it opened a few years ago and he has been able to look
over all the places he didn't get to see while he was aboard
(because you don't go where you have no business being on a ship)
so he can give a really good tour. For those who want to go on
their own, there is a very good tour with earphones that is
included free with admission and it is excellent. There is a choice
at each stopping spot of having just a short description or of
adding the actual voice of a crew member who worked in that area
telling something about his own experience there. There are benches
on the hanger deck for resting and an outdoor lunch area on the
fantail and, I think, another lunch area on the mess deck. And
there is an elevator from the dock up to the hanger deck entrance
and from there up to the flight deck for those who have a problem
with stairs. And there are great views of lots of San Diego from
the flight deck.
As well as the Midway, there is also an old steel hulled sailing
ship to tour and a sub and another ship or two, and harbor tours to
take. "Old Town," which is the original Spanish settlement area and
a Victorian settlement area right near it, are about 3 miles away,
and Balboa Park where the zoo is located, is only about a mile or
so from the waterfront.. Even without the zoo, Balboa park is a
fabulous place to visit. See below taken from Wikipedia.com
"Balboa Park is a 1,200-acre (490 ha) urban cultural park in San
Diego, California. The park is named after the Spanish maritime
explorer Vasco Núñez de Balboa. It was the location of the 1915
Panama–California Exposition and 1935 California Pacific
International Exposition which each created architectural landmarks
for the park. The park's site was placed in reserve in 1835, and so
is one of the oldest sites in the United States dedicated to public
recreational use. In addition to open space areas, natural
vegetation green belts, gardens and walking paths, it contains a
variety of cultural attractions including many museums, several
theaters, and the world famous San Diego Zoo. There are also many
recreational facilities and several gift shops and
restaurants.
Balboa Park, and the historic Exposition buildings, were declared a
National Historic Landmark and National Historic Landmark District
in 1977, and placed on the National Register of Historic
Places.[1][2] Balboa Park is managed and maintained by the
stewardship of the Parks and Recreation Department of the City of
San Diego."
My notes again: If you haven't already, you might want to look up
Balboa Park on Wikipedia. There is a lot more detailed information
and at least a couple of good pictures. I didn't have time to look
all the way through it. The ornate buildings from the 1935 event
were put together quickly, we've been told, with the hurried help
of set construction people from the early Hollywood era, with with
spit and plaster, never meant to last - but they are still there -
with an incredible collection of really interesting stuff. And
there is a new Air and Space museum with a middle glass roofed
rotunda used for meetings, classes and entertainment, that is on
the direct flight path of planes into San Diego Airport. Planes
landing in San Diego come in right over the city - and very low!
Over Balboa park - and the air museum in particular - they are only
about a mile or so away from touchdown. From some of the areas
outside you see the planes "floating in" between buildings. I never
fail to be surprised and amazed when I see a plane at night gliding
by "Fat City," a restaurant on a hill above the ocean front, all
lit up in bright neon.
The waterfront area has fish restaurants and other boats to look
at. Just past the Midway is Seaport Village - a great little
town-type layout with restaurants, specialty shops and a carousel.
Across the bay is Coronado with it's wonderful old Hotel del
Coronado that was once the vacation spot for movie stars and the
Duke and Duchess of Windsor.
Tom and I lived in SD when we were first married and he was
stationed there after he spent 8 months on the Midway
Tom and I lived in SD when we were first married and he was
stationed there after he spent 8 months on the Midway which went
into dry-dock up in Bremerton, WA to get one of the new angled
decks put on. At that time they called it a "canted" deck but
somewhere over the years it became an "angled" deck. Maybe too few
people understood the word canted.
Anyway, we love itin San Diego and try to visit every chance we
get. We hope that some of the cruisers who haven't been to the
Midway or some of the other places will want to join us.
Spring and the Wonders of New Life I composed this for my
great-niece, Lucy, who is expecting a second child.
A MOTHER’S LOVE
Love usually has conditions, in one way or another,
but no conditions do exist, between a child and its mother.
From long before the day of birth, they form such natural
bonds.
That love a mother always gives, and the way the babe
responds.
Just see them when they are together, and imagine them apart.
No other love's quite like it, it can melt the hardest heart.
The love between a mother and child, is impossible to
explain.
is impossible to explain. It's just a simple fact of life,
and will always be the same.
The waitress who served me coffee was several months pregnant, and
when I asked when it was to be, she told me and became excited at
the prospect. She told me it was to be a girl and they had already
chosen a name, which was to be Lily. As I drank my coffee, I
scribed these few words for her.
THIS LILY WILL BLOOM IN YOUR HEART
Love has many faces and forms, it's the strongest emotion we
share.
Growing always, throughout life’s storms, freely given, to show
that we care.
Now a sweet babe is about to be born, your unconditional love
you'll give.
A mother from your child’s first dawn, giving love as long as you
live.
FIRST VISIT Today was my first meeting with a new laryngectomy
patient and a famly member at the hospital. It was fantastic. My
SLP went in to introduce me and we all had a great talk. When my
SLP had to leave, the patient requested I stay for
a little longer to answer more questions. We covered a lot of
subjects and they thanked me several times for coming in. They
commented how much it had helped ease their minds to have that
knowledge and answers.
This is the comment I got back later from my SLP, by email: “You
made my day and our patient's day. I stopped by his room later this
afternoon and he and his mom were so so thankful for your visit. It
went REALLY well! I am excited
his room later this afternoon and he and his mom were so so
thankful for your visit. It went REALLY well! I am excited to do it
again with future patients. It is an invaluable service to offer
them.”
I really enjoyed it and felt that I was able to help. What a good
feeling. They live up in Alaska so I told them a lot about
WebWhispers and how great a resource it will be for them in a
remote area. I guess he is really good on computers so he was
excited to get signed up when he gets home.
I do want to say that I will always feel that your help and
WebWhispers are what make this possible for me. I have a whole new
aspect to my life that I did not have just a couple of years ago
and I am a better person because of it.
Thank you so much, Ron Mattoon March 2012
COMMENTS ON HEALING ARTICLE I read the article "The Other Side of
Healing" by Kimberly Unger LMSW. (Mar 2012, WotW). I have to say
its the best, shortest, most complete description of what we go
through I have ever seen or heard. Thanks for that.
2004 for me at M D Anderson, I don't remember her from that time.
Although I spent 6 weeks there after my nightmare surgery when it
came apart literally a few days after my Laryngectomy. To this day
I don't believe even my wife really gets it. Im just not the same
person I was. I'm sure, except for my Nurse Practitioner daughter,
no one else even has a clue. I'm well physically along with family.
Thank you God and to people like Kimberly. I have 2 Grand kids now,
one 9 months, and one 4yrs 3 months, both girls. I hope you and
yours are doing well. Life goes on or so they say. I still have
good days and bad. I believe I always will. I was a out door
sportsman type person who's life was turned upside down. I find if
I reflect to much or do not stay busy it allows to much reflection.
I despise pity from anyone. Especially from me. Lord knows there
are so many who are much worse off than I will ever be.
I would like to say thanks for the very thoughtful insightful
description. She has truely found her calling.
Thanks and be well, James Posey, class of 04 Dec 28th COUNTING THE
YEARS
Thanks for all your work on WW. My heroes, you and your support
staff!
Bob reached his 10th anniversary today! Another ten will get him to
77 – that would be a bonus of seven, given we are allotted three
score and ten!
Each and every subscriber on this site is an inspiration for me,
just the carer and partner.
May God bless you all. Pat(ricia) Queensland, Australia
Welcome To Our New Members:
I would like to extend a "Warm Welcome" to our most recently
accepted laryngectomees, caregivers, vendors, and
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 41 new members who joined us during April
2012:
Dave Aitchison Espanola, Ontario, CAN
Molly Bates - (Caregiver) Chatham, IL
Tania Bernier- (Caregiver) Tampa, FL
Sheila Binion Cantonment, FL
Linda Bohart Norcross, GA
Derek Chaplin Hemet, CA
Billy Chappell Dickson, TN
Leo Compliment Evergreen, CO
Tom Cooke Summerville, SC
David Dodge Raymond, ME
Phyllis Espinos Clarksville, VA
Lupita Garza Donna, TX
Sue Hord Redmond, WA
Nancy Krovitz - (SLP) N. Andover, MA
David Mathews Cape Town, S. Africa
Bob Meister Arlington, TX
John Perkins Aylett, VA
Virginia Solomon Jacksonville, FL
Jim Thompson Speedway, IN
Darlene Welker Houston, AR
Gerald Wethington Mason, OH
Katie Westfoff Chatham, IL
Janet Wilbanks Martin, TN
Mark Quigley Port Saint Lucie, FL
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