THE NATIONAL ASSOCIATION OF LARYNGECTOMEE CLUBS NEWSLETTER
March 2017
Inside this issue
The Shrinking Stoma
New Artificial Voice Box . . . . . . . . . 2
Notes From The President . . . . . . . . . 2
Travelling & Driving as a Lary . . . . 3
Benefits of Robotic Surgery
..............
5
My Story . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
......8
Patient Safety Initiative . . . . . . . . . . . 8
Unhealthy Lifestyle & Cancer . . . . 11
News from the Clubs . . . . . . . . . . . . 12
Plus lots of other news, thoughts,
poems, letters and views
To make a donation please complete and
return this form to: NALC Suite 16,
Tempo House, 15 Falcon Road, Battersea,
London SW11 2PJ
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and enclose a cheque payable to NALC.
Welcome to our first issue of 2017. As you will see
inside, NALC is still urgently seeking new sources of
funding as previous funding reduces. So please
continue all your efforts and do let us know of any that
have been particularly successful so that other clubs
might follow. We are also asking for your feedback on
how far, if you‘ve been in hospital recently or have had
to call an ambulance, your needs as a laryngectomee
have been correctly identified? Was an oxygen mask
placed correctly over your neck stoma or was it put
over your mouth and nose by mistake? Was a sign put
over your bed to show you were a neckbreather?
Lag Effect
We also learn that, although smoking rates, which cause 65% of oral cancer cases,
have dropped dramatically, oral cancer rates continue to rise – possibly due to the ‘lag
effect’ of all those who started smoking 50 or more years ago only now seeing an
effect. But hopeful news too of a new method of care for laryngectomies which helps
prolong the life of replacement voiceboxes. To learn more, though, you’ll have to read
on. So relax and enjoy another bumper issue of CLAN!
Ian Honeysett (Editor)
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email: [email protected]
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Name
The views expressed by the contributors are not necessarily those of the Editor or NALC. Great care has
been taken to ensure accuracy but NALC cannot accept responsibility for errors or omissions.
Deadline for issue No. 141: 1 MAY 2017
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Issue No. 140
New Artificial Voice
Box
Notes from the
President
An artificial ‘voice box’ has provided longterm relief for a throat cancer patient in
France. The 56-year-old man can now
speak with an intelligible whisper and
breathe normally, said lead researcher
Nihal Engin Vrana. The patient, who lives
in Alsace, received the implant in 2015. He
has lived well with it for longer than 16
months, said Vrana, vice president of
Protip Medical, the French company that
created the artificial larynx. “This is the first
time a patient has had the implant longterm and resumed certain functions such
as breathing and voice, thus considerably
improving his quality of life,” Vrana said.
The patient also has a fully restored sense
of smell, which had been compromised
by removal of his larynx, researchers said.
Financial
Update
The Larynx
The larynx serves two main functions. It
contains the vocal cords necessary for
speech. The organ also features an upper
valve called the epiglottis, which closes off
during swallowing to keep food or drink
from entering the windpipe.
Removal of the larynx is common in
treatment of laryngeal cancer, according
to the American Cancer Society. There are
about 13,430 new cases of laryngeal
cancer in the United States every year. The
artificial larynx consists of a rigid
titanium/silicone structure that replaces
the larynx in the throat, as well as a
removable titanium cap that replicates the
function of the epiglottis, Vrana said.
“This is a very new thing,” said Dr Mark
Courey, Chief of Head & Neck Surgery for
the Mount Sinai Health System in New
York City. “People have talked about being
able to put something in that could
perform this function, but I don’t know
anyone has done it until these
investigators,” Courey said.
Most Successful Yet
The researchers first implanted an artificial
larynx in a patient in 2012. This latest case
report reflects their most successful effort
yet. The patient had his larynx removed
during treatment for throat cancer. He also
has received radiation therapy and
chemotherapy, Vrana said. The only
problem that has not been solved in the
device involves the cap that functions as
the epiglottis.
The patient occasionally coughs on food
that accidentally goes up his windpipe.
2
“No episodes of pneumonia, infection,
discharge, difficulty breathing or
blockages were observed after 16 months
of daily use,” Vrana said. “This implant is
constantly evolving and the next patients
will
benefit
from
substantial
improvements” to improve the passage of
food down the throat, he added. Patients
who have had a total laryngectomy…
removal of the entire larynx… are the
ideal candidates for this device, Vrana
said. However, following surgery, they still
must have the base of their tongue, to
help preserve swallowing function.
Dr Randal Weber is Chief of Head & Neck
Surgery at the University of Texas MD
Anderson Cancer Center. He said the
implant would be a “significant departure”
from the current procedure done to
restore speech in laryngectomy patients.
Right now, surgeons punch a hole and
insert a oneway valve that allows air to
pass from the windpipe… the trachea…
into the oesophagus. “The wall of the
oesophagus creates vibratory sound that
is articulated by the tongue,” Weber said.
Some Concerns
Courey and Weber have some concerns
about the long-term effectiveness of the
device, however. Courey said mucus and
secretions from the lung and nose could dry
out on the titanium cap, potentially causing
a blockage. There’s also a significant risk of
rejection, particularly in cancer patients
who’ve undergone radiation therapy and
chemotherapy, they added.
Weber also wonders about patient
comfort. “You’re inserting a rigid tube in
someone’s throat,” he said. “What
happens when they flex their neck
forward or backwards, or extend their
neck?” Vrana and his colleagues agree
that the implant needs further testing.
“This first experience with the device has
shown the feasibility of replacing the
larynx with the prosthesis,” he said. Now,
refinements need to be made before
implanting more patients, he added.
This article was published by CBS News
on 4 January 2017 and included in
The Voice Plymouth newsletter
Last year, through
the efforts of
clubs, individuals
and staff, NALC
raised
more
money than we
have ever done. I
send my thanks to
everyone who contributed either their
time or money!
Unfortunately a promised large
corporate donation never materialised.
This leaves us in a very precarious
position. We are urgently seeking other
sources of funds and have several new
directions in which to look. Macmillan
Cancer Support are continuing to
provide us with some financial support
and we are very grateful for this. Please
continue to help us as you did last year
and look out for news of some new
ways you can help us in the months
ahead.
NICE* Quality Standards
For the past nine months I have been a
lay member of the NICE Quality
Standards Advisory Committee for head
and neck cancer. By the time you are
reading this, the final report will have
been published and we will post the
recommendations on our website. I am
pleased to say that the treatment of
cancer of the larynx is included in the
four chosen quality standards.
It has been a rewarding experience to
serve on the committee. I certainly found
that NICE take the involvement of
patients and carers very seriously and
make a considerable effort to ensure
our voice is heard.
* The National Institute for Health and
Care Excellence
NALC AGM
Monday 15 May 2017
Parish Hall, St Peters Church,
119 Eaton Square, London SW1W 9AL
* 12.30pm Lunch * 1.30pm AGM
Please let NALC know the numbers
attending for catering at
[email protected] or
020 7730 8585 by Friday 21 April.
Travelling and Driving as a Laryngectomee
Travelling and driving as a laryngectomee can be challenging.
The trip may expose the traveller to unfamiliar places away from
their routine and comfortable settings. Laryngectomees may
need to care for their airways at unfamiliar locations. Travelling
usually requires planning ahead so that essential supplies are
available during the trip. It is important to continue to care for
one’s airway and other medical issues while travelling.
Driving a car can be challenging for a laryngectomee. Speaking
may be difficult while driving because of the noise produced by
the car and the traffic. Holding the steering wheel with two hands
is essential for safe driving. However, speaking using an
electrolarynnx or voice prosthesis (with a non-hands free HME)
requires the use of one’s hand. This leaves the driver with only a
single hand to steer and operate their car. Using hands free Heat
and Moisture Exchanger (HME) frees both hands to continue and
operate the car.
Coughs and Sneezes
Another potential problem is the need to cough or sneeze while
driving. The air inhaled when driving busy roads and highways is
often polluted and may cause respiratory irritation and coughing.
The sputum produced by coughing or sneezing can block the
HME cassette and prevent breathing. Laryngectomees need to
quickly remove the blocked HME to allow breathing. This requires
using their hand(s) and creates a dangerous situation.
Airline attendants are
typically unfamiliar
with the means of
providing air to a
laryngectomee, i.e.,
directing air to the
stoma and not the
nose. These steps
can be taken to
prevent
potential
problems:
l Drinking at least 8
ounces of water for every two hours on a plane, including
ground time
l Avoiding alcohol and caffeine drinks, as they are dehydrating
l Wearing loose-fitting clothes
l Avoiding crossing one's legs while seating, as this can reduce
blood flow in the legs
l Wearing compression socks
l If in a higher risk category, asking one’s doctor whether to take
aspirin before flying to inhibit blood clotting
l Performing legs exercises and standing up or walking,
whenever possible during the flight
Safer driving can be enhanced by:
l Booking a seat in an exit row, bulkhead, or aisle seat that
allows greater leg room
l Not using your cell phone (even a hands free one) while
driving
l Placing medical supplies, including stoma care equipment
and an electrolarynx (if used) in an accessible place in the
carry-on luggage (It is allowed to bring durable medical
equipment and supplies on board, even as an extra carry-on
bag)
l Pulling over to the curb when experiencing coughing or
sneezing, or when needing to speak (when using an
electrolarynx or non-hands free HME)
l Stopping frequently to cough out one’s sputum
l Using hands free HME while driving
l Avoiding direct exposure to outside air while driving by using
the car’s ventilation
l Making sure that the car’s safety belts do no impede breathing
by covering your stoma.
Laryngectomees who use an electrolarynx need to be careful if
they are stopped by a policeman. The electrolarynx may be
mistaken for a weapon by the policeman. It is advisable not to get
hold of it until one can explain to the policeman that they need
the electrolarynx to speak. This can be done by handing over a
written explanation.
Flying
Taking a flight (especially a long one) on a commercial airline
presents several challenges. Several factors can lead to deep
vein thrombosis or DVT. These include: insufficient hydration (due
to low moisture in the cabin air at high altitude), lower oxygen
pressure inside the plane, and the passenger’s immobility. These
factors, when combined, can cause a blood clot in the legs that,
when dislodged, can circulate through the blood stream and
reach the lungs where it can cause pulmonary embolism. This is
a serious complication and a medical emergency. In addition,
low air humidity can dry out the trachea and lead to mucus plugs.
l Informing the flight attendants that one is a laryngectomee
l Communicating with flight attendants through writing if the
noise during the flight makes it difficult to speak
l Inserting saline into your stoma periodically during the flight to
keep the trachea moist
l Covering the stoma with a heat and moisture exchanger
(HME) or a moist cloth to provide humidity.
These measures make airline travel easier and safer for
laryngectomees and other neck breathers.
Itzhak Brook MD is a Professor of Pediatrics and Medicine at
Georgetown University School of Medicine. He is a
laryngectomee and the author of My Voice, a Physician’s
Personal Experience with throat cancer and
The Laryngectomee Guide.
686,000
The number of PEOPLE
DIAGNOSED with Head & Neck
GLOBALLY
cancer
376,000
The
number of attributable
DEATHS
THE GLOBAL BURDEN OF HEAD AND NECK CANCER
3
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Need To Call 999 But
Can’t Talk?
There may come a time in everyone’s life
when you need to call the emergency
services, but it might put you or those
around you in even more danger by talking.
When you call 999, an operator asks which
service you require. If you remain silent and
it’s an emergency, you’ll be asked to cough
or make some other audible sound without
speaking. But what are you supposed to do
if making any noise at all might alert an
attacker to your presence and so you need
to remain silent?
The Shrinking Stoma
When your laryngectomy was done, part of the reconstruction was to create your stoma.
This was done by suturing the cut end of your trachea to the skin of your lower neck.
Under ideal circumstances we want the stoma to be at least as big as the diameter of
your trachea, but actually hope that it might be slightly bigger.
So why do they get smaller with time? Several factors at work. Any time we create a
surgical wound, and the stoma is certainly a surgical wound, the body responds by
laying down scar tissue as a natural part of the healing process. Scar tissue is very
dense and tough, much more so than surrounding normal tissue. Scar tissue has one
tendency that will ultimately affect the final result and that is Contracture. That’s right, by
their very nature, all scars get smaller. Usually that’s not a problem for linear scars on the
skin but when the contracting scar involves a round opening, then the possibilities
become quite obvious. The opening will get smaller.
There are several things that contribute to a small stoma. These include not removing
enough skin from the lower neck during the surgery, compromising the blood supply to
the cut end of the trachea, putting in too many sutures, too much tension on the tracheaskin suture line, poor nutrition, prior irradiation to the neck, and infection. Also, some
folks just simply have a smaller trachea from the start so their stomas naturally will be
smaller.
Solutions?
The answer is to dial ‘55’
Emergency services have previously
announced that if they receive a 999 (or
112) call but hear nothing on the end of the
line, they won’t automatically investigate
it. But they’ve recently reiterated how
those in an emergency can alert the
police without making a sound. The
correct procedure is called Silent Solutions
but very few people know it exists. If after
calling 999 you haven’t been able to
signal to the operator that your call is an
emergency by coughing, you’ll be put
through to an operating system. What you
then have to do if you're in danger is dial
‘55’, otherwise the call will be ended.
Alert the emergency services without
putting yourself in any more danger.
A police spokesperson said: “Please do
not think that just because you dial 999
that police will attend.
“We totally understand that sometimes
people are unable or too afraid to talk,
however it must be clear that we will not
routinely attend a silent 999 call,” he
explained. The reason is that the
emergency services don’t know whether
the call was made accidentally, perhaps
after misdialling. It is hoped that by
spreading awareness of the procedure,
the emergency services will be able to act
more efficiently and save lives.
Published in The Independent by
Rachel Hosie @rachel_hosie on
Thursday, 12 January 2017 and included in
The Voice Plymouth newsletter
So how do we (as surgeons) manage the stoma and try to reduce the risk of shrinkage
or stenosis? Well, the first thing we try to do is to avoid or correct those things I
mentioned above. The second thing we try to do is control the scarring and shrinkage
process that we all know will occur as you heal. This includes vigorous stomal hygiene to
cut down on crust formation and infection. Humidification is important as well. We will
also place a small stoma vent that can be worn after surgery which will hopefully cause
the shrinking scar to mature in an open position. This vent can be removed for cleaning
and inspection of the stoma.
Ideal Size?
So what is the ideal size for a stoma? The answer varies for each patient. The opening
should be large enough for adequate airflow so you don’t experience any shortness of
breath at rest or with exercise. It should be large enough to allow you to remove crusts
and secretions with ease. The kicker comes in with the insertion of the speech prosthesis.
Since the prosthesis itself takes up some room it will reduce the cross-sectional area of
the stoma. Therefore, we generally like to see a stoma at least 1.5 to 2 cm in diameter
before entertaining doing the TEP.
So what do we do for a small stoma? There are several schools of thought here. There
are a number of surgical procedures, which have been developed for the correction of
stoma stenosis. The problem with more surgery is what? That’s right. More contracting
scar tissue! Therefore, I have started dilating or stretching small stomas with
progressively larger stoma vents. This takes longer to achieve your desired goal, but
avoids the vicious cycle of surgery, scar, more contracture.
Article by Glenn E. Peters M.D. Director, Division of Otolaryngology – Head and Neck
Surgery University of Alabama at Birmingham, Birmingham, Alabama, USA and
included in Still Talking, the NSW Newsletter, November 2016
Alcohol & Cancer
Alcohol-related cancers will cause about
135,000 deaths and cost the NHS £2bn
over the next 20 years in England, unless
concerted action is taken to highlight the
dangers of drinking, health campaigners
have warned. Cancer Research UK, which
commissioned Sheffield University to
come up with the figures, said the
government urgently needed to counter
public ignorance about the link between
drinking and cancer and introduce
minimum unit pricing (MUP) to prevent the
number of deaths reaching 7,100 a year
by 2035. The majority of alcohol-related
cancer deaths in 2035 are expected to
come from oesophageal cancer (3,697),
followed by bowel (1,369), other mouth
and throat cancers (887), breast (835) and
liver cancer (333).
Earlier this year, the government lowered the
officially advised maximum weekly alcohol
consumption by men to 14 units, bringing it
in line with the existing limit for women.
(Article in The Guardian and included in
The Voice, Plymouth)
5
My Story
My name is Shrenik Shah, aged 64, Indian and a businessman into global marketing, I
am a Cancer Warrior in my 20th year and currently live in London until April 2017. I have
travelled to 33 countries, promoting Dyestuffs & Chemicals.
I spoke normally until I was 44 but, in 1996, my voice gradually
became a whisper and I was examined by several Doctors and
ENT surgeons but they couldn’t find anything remarkable. I had
never smoked or used tobacco nor drank alcohol. I was travelling
abroad around 7 or 8 trips every year for 10 years in a row, from 2
weeks to 5 weeks each time. In 1997, I started having breathing
problems and was unable to sleep on my back. I also gradually
lost weight: 10 kgs in 3 months.
Bleeding
In August 1997, suddenly I started bleeding in my sputum and my
family physician asked me to see a cancer surgeon. I had a
throat endoscopy and biopsy and, at the same time, a
tracheotomy was done as I was hardly able to breath. I was
diagnosed with vocal cord cancer during the endoscopy and
same was confirmed from pathological report of biopsy stage IV
A. There was huge tumour on my windpipe opening and a hole
was discovered, which was as small as the tip of a pin.
The surgeon performed a tracheotomy in the first instance so that
I could breath and then performed a total laryngectomy with the
partial removal of my thyroid gland and another 56 nodes
together with the muscle of my neck. I was discharged after 1
week and then I had 60 RT shots and, in less than 3 months, I
was back to work.
I was then advised to use an Electrolarynx, which I got used to in
about 2 weeks. Since December 1997, I have been using a Sevox
Inton/digital Electrolarynx to communicate in person, over the
phone and in public
forums. I lead a fully
independent, active
life including all my
global
business
travel.
A Blessing
To me this robotic
voice is like a
blessing in disguise.
It has given me a
unique and vibrant identity and I have never needed to announce
my name when I talk to anyone for a second time.
As regards my experience pre and post cancer surgery in 1997,
when the cancer was diagnosed and the Doctor said my voice
box was to be removed, my answer was very simple: “I know I
am at the right place, so please do whatever is required to be
done.” Since then, I have never remembered I had cancer.
Ten years after my cancer surgery, I started motivating cancer
patients in hospitals, spreading cancer awareness in corporate
industries especially during World Cancer day and No Tobacco
day. For the last six months, I have been visiting cancer hospitals
on a regular basis to meet OPD and IPD cancer patients and help
them fight cancer and lead independent active lives. I am also
actively connected with the Memorial Slon Kattering Cancer
Centre, NY, USA and I attend their webinars.
New Book
During the month of July 2016, a coffee
table book, ‘10/10 Immersive Narratives of
10 Cancer Survivors’, was launched
describing the real life stories of 10 cancer
survivors under the head and neck
category, who have lived more than 10
years of whom I am one of those lucky
ones. You will find my real life story as a
cancer warrior in the first chapter, under
the heading ‘I am going to stay’.
During my journey of 19 years as cancer
survivor, I have been committed to helping
heal, protect and comfort cancer patients
and care givers.
Conked Out!
They say that everyone has an epiphany, maybe even two or three… well folks, this boy has
certainly had one of them. Friday 16 Dec, 2:35pm ‘Voice’ conked out! No warning, no bang,
squeal or knocking noises, just plain old conked out! Thereafter followed 5½ days of misery
as I had no voice; I was ‘incommunicado’ until Claire (Speech Therapist) located a spare for
me. I cannot explain how demoralised I felt but I can describe the elation at being able to
speak again! The Trustees have immediately seconded my request that we purchase two of
these Electro-Larynx voice machines so that our ENT/Speech Therapy teams always have a
spare in for just such occasions.
Phil Johnson, 20:20 Voice Newsletter
6
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New Approach to
Treatment
Benefits of Robotic
Surgery
A new approach to treatment could help
throat cancer patients potentially to regain
their ability to speak. Researchers from
the University of Kent have developed a
new method of care for patients who
have to have their larynx removed that
utilises long-lasting replacement voice
boxes made from silicone. Currently,
these silicone replacements often fail after
a short time, but the team has indicated
that this may be caused by a fungal
infection called Candida Albicans. As
such, the new method involves treating
this infection as a matter of priority. It was
found that this approach was able to
extend the life of the replacement
voicebox significantly, allowing patients to
carry on speaking using the prostheses
for much longer, while also reducing the
risk of dangerous secondary chest
infections. This new method is gradually
being adopted by hospitals across the UK
and is expected to be used by throat
cancer patients worldwide in the near
future.
A new study from researchers at Henry
Ford Hospital finds an incisionless robotic
surgery… done alone or in conjunction
with chemotherapy or radiation… may
offer oropharyngeal cancer patients good
outcomes and survival, without significant
pain and disfigurement. Patients with
cancers of the base of tongue, tonsils, soft
palate and pharynx who underwent
TransOral Robotic Surgery, or TORS, as the
first line of treatment experienced an
average three-year survival from time of
diagnosis. Most notably, the study’s
preliminary results reveal oropharyngeal
cancer patients who are negative… a
marker for the human papilloma virus, or
HPV, that affects how well cancer will
respond to treatment… have good
outcomes with TORS in combination with
radiation and/or chemotherapy.
Article in Spira Healthcare and included in
The Voice, Plymouth
Where To Go?
A row of bottles on my shelf
Caused me to analyse myself.
One yellow pill I have to pop
Goes to my heart so it won't stop.
A little white one that I take
Goes to my hands so they won't shake.
The blue ones that I use a lot
Tell me I'm happy when I'm not.
The purple pill goes to my brain
And tells me that I have no pain.
The capsules tell me not to wheeze
Or cough or choke or even sneeze.
The red ones, smallest of them all,
Go to my blood so I won't fall.
The orange ones, very big and bright,
Prevent my leg cramps in the night.
Such an array of brilliant pills
Helping to cure all kinds of ills.
But what I'd really like to know,
Is what tells each one where to go!
Anon and included in The Voice,
Plymouth newsletter
8
“For non-surgical patients, several studies
have shown that positive throat cancers,
or HPV related throat cancers, have better
survival and less recurrence than p16
negative throat cancers,” says study lead
author Tamer Ghanem. “Within our study,
patients treated with robotic surgery had
excellent results and survival, irrespective
of their status.” While Dr Ghanem notes
the study’s results are not enough to
change clinical practice, it does
demonstrate that TORS alone or in
conjunction with adjuvant radiation or
chemotherapy is an acceptable treatment
option for oropharyngeal cancer patients
regardless of status.
Article by the Henry Ford Health System
and included in The Voice, Plymouth
Dr Itzhak Brook
Dr Itzhak Brook, a Professor of Paediatrics
and Medicine at Georgetown University
School of Medicine in the USA, and also a
laryngectomee, writes: “I am happy to
inform you that the American Academy of
Otolaryngology Head and Neck Surgery
made my book The Laryngectomee Guide
available for free. Paperback copies are
also available in Amazon.com . “You can
find all the links in his blog at:
dribrook.blogspot.com .
The 170 pages of the Guide provide
information that can assist laryngectomees
with medical, dental and psychological
issues. It contains information about sideeffects of radiation and chemotherapy;
methods of speaking; airway, stoma and
voice prosthesis care; eating and
swallowing; medical, dental and
psychological concerns; respiration;
anaesthesia; and travelling.
The Voice, Plymouth
Patient Safety
Initiative
NALC needs your
help!
For many years NALC has made a great
contribution to ensuring the safety of
laryngectomees when receiving medical
care, especially when on a ward other
than an ENT ward. We run an education
programme to contribute to staff training
and we are a partner of the National
Tracheostomy Safety Project. However we
still hear reports of laryngectomees
whose needs, as neckbreathers, are not
recognised in an emergency situation.
NALC has been invited to provide a
patient voice in a project, funded by the
Health Foundation, to improve the care of
neckbreathers. They want to know of our
experiences, both good and bad.
So how has it been for you? If you have
been in hospital recently or needed to
call an ambulance, have the staff
shown that they know the needs of
laryngectomees? Have you had an
oxygen mask placed correctly over your
neck stoma or was it placed over your
mouth and nose by mistake? Was a
bedhead sign used to show you were a
neckbreather? Were you confident the
medical staff knew how to deal with
you correctly? Are you registered with
your local ambulance service?
NALC Officers have been invited to a
meeting in May and we have been asked
to share our members’ experiences. We
would love to hear from you about your
experiences and opinions on this issue.
This can be done through a letter, email or
a phone call. NALC’s contact details are
shown on the front cover. Please send
your comments to us by the beginning of
May.
The sentence "The quick brown
fox jumps over a lazy dog" uses
every letter of the alphabet.
A Sports Car Loving Grandad Remembered
Cancer patients learning to speak again after throat surgery have been boosted by equipment donated in memory of a
sports car loving grandad.
continued in next issue
Lorry driver Barry Hutchinson died from cancer of the throat in
September and fellow MG sports car owners have raised funds to
enable North Wales Laryngectomy Club to buy specialist machines.
Barry was chairman
of Llandudno MG
Owners’ Club and
was due to undergo
a laryngectomy to
treat his cancer of
the hypopharanx –
the bottom part of
the throat. However,
surgeons
were
unable to carry out
a laryngectomy - where the voice box is removed – on the 76year-old as the tumour was too close to the main artery in his
neck.
More than £5,000 was raised through the annual Snowdon run,
with around 200 MG drivers following a course around North
Wales, plus other activities.The funds have been divided between
Heulwen Ward at Ysbyty Glan Clwyd, Bodelwyddan, where Barry
was treated, and the Laryngectomy Club, which counsels and
supports those facing the traumatic treatment. Chairman Peter
Holloway and Ysbyty Glan Clwyd ear, nose, throat, head and
neck consultant Mr Hisham Zeitoun were on hand to receive four
new electrolarynx machines and eight new nebuliser compressor
systems from the MG Owners’ Club.
Electrolarynx Machines
The electrolarynx machines help laryngectomy patients speak
while the nebuliser compressors are used by patients who have
had a tracheostomy - an opening created in their windpipe - to
help them breathe and to humidify the air. Barry’s widow
Maureen said: “He was just such a wonderful man. He loved his
MG and we would go out for drives twice a week every week in
summer. He would always say his MG came first, but I knew he
never meant it,” said Maureen. “He would never miss the club
monthly meetings. We were members for more than five years
and he was the club chairman for the last four years. He really
was the nicest, wonderful gentleman and I miss him so very
much.”
She added: “I’m so pleased the Llandudno MG Owners Club
agreed to make the donation so this new equipment could be
purchased.
“A second donation
for
the
same
amount, £2,300 has
been
given
to
Heulwen Ward here
at Ysbyty Glan
Clwyd, which is the
cancer ward where
Barry was treated.”
The
couple’s
daughter Siân, lead
MRI radiographer at
Bangor’s
Ysbyty
Gwynedd, said her dad was passionate about his MG sports car
and would have approved of the donation of funds to buy the
equipment. She said: “I am sure my mum, like all the family will
gain great comfort and pride knowing that the donation will help
other patients facing the trauma of having cancer. “My dad was
first diagnosed in February 2015. He happened to mention to us
he felt something was obstructing his swallowing, along with a
sore throat and cough.
“His GP referred him urgently to the ENT clinic at Ysbyty Gwynedd,
and there he had a scope that confirmed the presence of a
lesion. Following a biopsy, the tumour was confirmed.
“Dad attended Ysbyty Glan Clwyd for combined radiotherapy and
chemotherapy treatment. The cancer recurred when he felt
another lump in his neck at the end of January 2016. “He had a
further five cycles of chemotherapy but, despite Mr Zeitoun and
Dr Soe's best intention of him being able to have a laryngectomy
operation, it sadly wasn't to be.” She added: “Dad had a
tracheostomy at the end of June following the cumulative effects
of the chemotherapy rendering it difficult for him to swallow.
“The tracheostomy was performed at Ysbyty Gwynedd and my
father was under the amazing care of Mr Hill and staff of Dulas
Ward for many weeks. “Mr Zeitoun and Dr Soe were also truly first
class, always going that extra mile in any way they could. The
treatment Dad received across the board was second to none.
“We will as a family be eternally grateful to all the teams that
provided such amazing care for my father at Ysbyty Glan Clwyd
and Ysbyty Gwynedd , as well as the care from the district nurses
at Tal y Bont surgery, who received the funeral donations of £500.
“As a family, it meant the entire world to have my father home
with us all in his final weeks and it is the district nurses and the
Marie Curie nurses that made his and our wish possible.”
NALC Donation
For the second year, the staff on Ward 29 at The Royal Victoria Hospital, Belfast has
made a fantastic donation to NALC. The princely sum of £1200 was raised by holding
another successful coffee morning. We really do appreciate the hard work that goes into
organising these events, particular thanks to Daphne Riddell and Gemma Anderson and
the generosity of the staff, patients and visitors.
These donations enable NALC to continue being able to provide the support, help and
information that is so desperately needed within the Laryngectomy community. If you
know of any charity raising event that would like to help NALC, please contact Head
Office.
Alex Mcguiggan, Daphne Riddell (CNS),
Miles Black (ENT surgeon) and Gemma Anderson
(Head & Neck Secretary)
C
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Unhealthy Lifestyle
and Cancer
Mouth cancer rates have risen by more
than two-thirds over the last 20 years due
to unhealthy lifestyles. Data from Cancer
Research UK shows the disease has risen
68%, with the rise affecting men and
women of all ages. Poor diets, drinking,
smoking and the spread of infections are
to blame. Some 11,400 people are
diagnosed with oral cancer in the UK
each year including cancer of the lips,
tongue, mouth, tonsils and the middle
part of the throat. The disease kills 2,300.
Nine out of every ten cases are linked to
unhealthy lifestyles.
After taking into account Britain’s
population growth, experts calculated
there were eight cases of mouth cancer
per 100,000 people from 1993 to 1995,
rising to 13 cases per 100,000 people
between 2012 and 2014. Smoking rates…
which cause 65% of oral cancer cases…
have dropped dramatically in recent
years. But scientists think oral cancer is
still rising because of a ‘lag effect’… with
the thousands of people who started
smoking 50 or 60 years ago only now
seeing an effect. Rising drinking rates,
particularly among women, may also be
behind the trend, along with diets low in
fruit and veg. Infection with the human
papilloma virus… known as HPV…
causes about 13% of cases.
Article by Ben Spencer in The Daily Mail
and included in The Voice, Plymouth
It’s a close-up of the
human tongue!
What Is It?
The Voice, Plymouth
Humidifiers
Exercise?
Do you find your stoma going dry or
coughing up a little blood sometimes? You
could be prone to drying out, especially in
winter when heaters are on and the
humidity is low anyway. There are quite a
few strategies you can employ to maintain
moisture in the airway. The main one is to
keep the stoma covered. Stoma covers
perform some functions that used to be
carried out by the nose and mouth, such
as filtering airborne dirt, bacteria and
other harmful particles. They help in
retaining a little moisture from the lungs
that would otherwise be dissipated and
they hold a little warm air to mix with the
incoming cold air. Special Heat and
Moisture Exchangers are, of course, even
better at warm air and moisture capture,
thereby raising the temperature and water
content of air inhaled into the
tracheobroncheal tree.
As I was lying in bed pondering the
problems of the world, I rapidly realised
that it should be the tortoise life for me!
For instance:
l If walking/cycling is good for your
health, the postman would be
immortal.
l A whale swims all day, only eats fish,
only drinks water, and is fat.
l A rabbit runs and hops and only lives
15 years.
l A tortoise doesn't run and does
nothing, yet it lives for 450 years.
And you tell me to exercise? I don't think
so. I'm a senior. Go around me!
The Voice, Plymouth
Drinking plenty of water can help a little
also. A bowl of water in the bedroom can
maintain some humidity while you sleep.
An evaporator or humidifier can provide
as much humidity as you require. The
optimum relative humidity level in the
home is between 35 to 45 percent.
Unfortunately, if not properly looked after,
humidifiers can present health problems
as they can become breeding grounds for
mould and bacteria. Some types of
humidifiers can disperse microorganisms
into the air in aerosol droplets that are
readily inhaled. Humidifiers least likely to
disperse microorganisms or minerals are
the evaporative or steam vaporiser types.
A home humidifier should be cleaned
daily, emptying out any remaining water,
wipe all surfaces dry with a clean soft
towel and refill with clean water. Distilled
water is preferred to tap water as tap
water contains minerals that could
increase the development of crusty
deposits that can be a breeding ground
for microorganisms. Once a week fill with
a solution of 1 teaspoon of bleach to about
5 litres of water, soak for 20 minutes
sloshing it around the sides occasionally.
Then empty and rinse thoroughly. Remove
any crusty mineral deposits with a solution
of half water/half vinegar using a soft
brush or rag. Always refer, of course, to
the manufacturer’s recommendations.
The foregoing might have suggested that
using a humidifier is not worth the hassle.
That is not the case at all as not only will
your health benefit from an optimum
humidity level but it can prevent static
electricity, peeling wallpaper and cracks in
paint and furniture as well. However, as
excess humidity can cause a lot of
problems too, it could pay you to get a
gauge for measuring the humidity in the
area where you are using the humidifier. Do
not humidify over 50 percent and reduce
settings if moisture forms on windows, walls
etc. To help humidity retention you can seal
your doors and windows, also any
fireplaces that are not in use.
It is up to you. If you find your stoma
drying out, if you are coughing up blood,
then raising the level of humidity in the air
you breathe can be the first step in fixing
the problem.
Still Talking, NSW newsletter
The more attracted you are to
someone, the easier it is for them
to make you laugh.
News from the Clubs
Speak Easy, Cornwall
They had their annual meal, by popular
request, once again at the Victoria,
Threemilestone on 11 January. On Monday
5 June 2017 they will be meeting up with
members of the Plymouth Head and Neck
Cancer Support Group (formerly Plymouth
Lary Club) who have kindly invited them to
join their visit to the Cove Macmillan
Support Centre, where they will be shown
around the facilities, after which they will
join them for lunch at the Victoria Inn,
Threemilestone. Other ideas for their
calendar are: Cornwall Aviation Heritage
Centre at St Mawgan – indoor and
outdoor exhibits including the Harrier
jump jet and Hawker Hunter, seeing
inside the cockpit of some classic aircraft
and some of the restoration work; there is
a 1950s style café. Bodmin and Wenford
steam railway trip. St Kitts Herbery near
Camelford, with much more than plants –
highly recommended by Speak Easy
members who want to visit for the second
time. Jamaica Inn – an eatery with a
Daphne du Maurier Room and Smugglers’
Museum.
PLC Plymouth
A dozen or so members attended a
Christmas Luncheon at PL1 Restaurant,
Bar & Brasserie at City College, Plymouth
on 13 December 2016. The welcome, the
service, the food, and all the Christmas
trimmings were just splendid, and
enjoyed by all who attended. Special
thanks go to Nicky Putman of City College,
and each of her staff who waited-on so
tirelessly. Then on 9 January 2017, there
was a Support Group Meeting at The
Mustard Tree Cancer Support Centre. They
had an an impromptu and informal
discussion with Ms Annie Charles, the
Manager of the Living With and Beyond
Cancer project, and then saw a short film
made by Smokefree Southwest.
Oxford
20:20 Voice
The Oxford Laryngectomy Club meets every 2nd Saturday bi-monthly, at the Littlebury
Hotel in Bicester. They met on 14 January with 16 members present including two new
larys. Their chair is Silvie Smith aka Chairman Mao who will be obeyed. Silvie and her
lary husband Terry have been tireless supporters for 12 years and also run their 100 club
prize draw raising funds for the club. As two of the members had recently been to a
presentation by local ATOS representative Gaynor Collier, they had a discussion about
the products. Gordon and Carol Vacher, again non larys who have supported the club
for many years, organised a Valentine’s Dinner to raise funds and it was a wonderful
social get together where the wine flowed freely! The club works closely with the speech
therapy department at the Churchill Hospital in Oxford with members being called upon
to support new patients through diagnosis and post operation. One of their long time
members, Isabella Manders, passed away recently and left instructions that monies
collected at her funeral should be donated to the club.
They had a delightful start to the New Year
as the Bulls Head raised £60+ from the
Christmas
Sweepstake,
Aylestone
Conservative Club also raised £75 from
their Christmas sweepstake and The
Aberdale pub raised £67.60 with their
Christmas sweepstake! In addition, the
Bulls Head collection tubs produced a
fantastic £74.05 – a new record! 20:20 also
report that they have finally placed the
order for the FVR (Flexi-Video-Rhinolaryngoscope) for their ENT department at a
cost of £13,678.51. They have had many
problems leading up to this point, not least
to finance the maintenance contract
required. But now it’s done!
With grateful thanks to her family, they received £361. RIP, Isabella.
Chesterfield Club
In November we were asked to visit a
patient facing a laryngectomy. The patient
had no prospect of having a speech
valve. We decided to help by buying them
a boogie board. This device is a thin tablet
with a liquid crystal display. You can write
on it with a stylus or a finger and wipe it
clean in an instant using a delete button.
Many find this preferable to writing with
pen and paper to communicate with
family, friends and nurses.
We have now decided to buy a couple
more boards and donate them to the ENT
ward so that any patient unable to speak
will have an easy way of communicating
whilst in hospital.
© The National Association of Laryngectomee Clubs 2017
The Promise
"To find a voice", the booklet said,
that must be something writers need.
I thought in truth my voice was dead.
So might I find one here instead.
I think a miracle I need.
"To find a voice", the booklet said,
Should I listen and take heed?
I thought in truth my voice was dead.
Can it come back once it has sped,
my shackled voice, its spirit freed.
"To find a voice", the booklet said.
Slowly by the hand be led.
Soaring freedom, with God's speed,
I prayed as carefully I read,
"To find a voice", the booklet said.
I thought in truth my voice was dead.
Len A. Hynds
Printed by The Ludo Press Ltd, London SW17 0BA