Eastern RegionLaryngectomy Conference16th March 2012 10.00am – 4.00pmShelford Rugby Club, Cambridgeshire

We are hosting a LaryngectomyConference. The purpose of this event is togive patients and their families/carers theopportunity to meet others, to provide anupdate on new developments/productsand treatments available. We are hopingto attract around 200 attendees fromacross the whole of the Anglia region. Forfurther details, contact: Sarah Pilsworth on01223 216200.

Inside this issue

A Year Since a LaryngealTransplant . . . . . . . . . . . . . . . . . . . . . . . . 2

What on Earth Happened to My Thyroid Gland? . . . . . . . . . . . . . . . 2

Swallowing . . . . . . . . . . . . . . . . . . . . . . . 3

Poetry . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

To the Land of the Midnight Sun . . 5

News from the Clubs . . . . . . . . . . 6–8

Plus lots of other news, thoughts,poems, letters and views

T H E N A T I O N A L A S S O C I A T I O N O F L A R Y N G E C T O M E E C L U B S N E W S L E T T E R

HISTORY IN THE MAKINGAbout a year ago, Brenda Jensen from California was only thesecond person to get a full laryngeal transplant and our ownMartin Burchall was involved in the operation. You can readMartin’s account in this issue.

If the country is in the grip of snow and ice when you read thisthen turn to Ken Glaze’s account of his trip to the Arctic Circle.And if you’re already shivering then a trip to Spain might help.We’ve had several items in the past on the Laryngectomy Choirof Leon in Spain. Reader Geraldine Thorne wondered if it was

true and has managed to track them down on the internet. So read her item and youwill be able to hear them sing. And even buy their CD!

30 Years – Nearly!Our next issue will be number 120. So we need to celebrate 30 years! Have any of youbeen CLAN readers from the very beginning in 1982? If so, let us know. How havethings changed for you over those 30 years?

And now – let’s celebrate Christmas!

Ian Honeysett (Editor)

Issue No. 119 December 2011

President’s ChristmasMessageOnce again I am surprised that it is thattime of year to be writing my Christmasmessage, time goes so quickly thesedays. Must be my age!

May I take this opportunity to remindclubs that if your club would like a visitin the next year from one of the NALCofficers to keep your club up to datewith what NALC are doing or offer anyassistance we can, please contacthead office and this will be arranged.

On behalf of all the NALC Officers,Vivien and Kerry, at head office may Itake this opportunity to wish everyone,Laryngectomees, Carers, healthprofessionals and all our many friendsa very Happy Christmas and above alla Healthy New Year.

Ivor SmithPresident

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For all items for Clan:Ian Honeysett (Editor), 53 Combe Road, Farncombe, Godalming, Surrey GU7 3SL email: Honeysett@btinternet.com

For all other matters (including requests to be added to or removed from the mailing list): Vivien Reed (Association Secretary), NALC, Lower Ground Floor, 152 Buckingham Palace Road, London SW1W 9TR Tel: 020 7730 8585 Fax: 020 7730 8584 Email: info@laryngectomy.org.ukWebsite: www.laryngectomy.org.uk

The views expressed by the contributors are not necessarily those of the Editor or NALC. Great care hasbeen taken to ensure accuracy but NALC cannot accept responsibility for errors or omissions.

Deadline for issue No. 120: 1 February 2012

One year ago this month Brenda Jensen, a lady from a small townin California, was the second person to receive a full laryngealtransplant. Since illness in 1998 which required her to have a tubein her throat for a long time, scar tissue had filled her larynx makingit impossible to speak normally. She was effectively a‘laryngectomee’ with her larynx still in place and young enough forthis disability to shape much of her adult life. For some years, I hadbeen communicating with doctors at the University of CaliforniaDavis in Sacramento, to whom she presented in 2007. Dr PeterBelafsky, knowing my interest in the potential for laryngealtransplantation, gave me a call and we decided to explore whetherthis might be an option for Brenda, especially as she was alreadyon immunosuppression medication following a kidney andpancreas transplant in 2004 (immunosuppression is arguably thebiggest ethical and practical barrier to laryngeal transplantation).Over the next two years, we planned, built a multi-national teamand practised the operation. Brenda was counselled about thesubstantial risks involved as well as the potential gains, and wasvery clear this was something she wished to do.

In October 2010, I flew with my colleague and pioneering thoracicsurgeon Paolo Macchiarini (now at the Karolinska Institute inStockholm) to Sacramento. With the tremendous support of theGolden State transplant authorities, and with extreme goodfortune, an ideal donor was identified a week later at a hospital inthe same town. After 48 hours of preparation, an 18-houroperation was performed involving seven surgeons in twooperating theatres. This was the first laryngeal transplant in whichan attempt was made to make the muscles work usefully, byusing new techniques of nerve transfer.

Brenda had a stormy post-operative course due to high

variations in her blood pressure,but was eventually discharged afew weeks’ later, having spokenher first words (these can be heardon You Tube: www.youtube.com/watch?v=kaq0I4qTTtM ) in 12 years.A ten weeks, there was already aflicker of movement in the vocalcords and she was able to talkreally well. This progress in hervoice has continued and today shehas only a very small tracheostomytube, which can even be blocked off from time to time, as herairway is so good. Her swallowing, as with Dr Marshall Strome’sfirst laryngeal transplant patient in Ohio in 1998, has taken a longtime to come good, but is now making rapid progress.

Brenda Jensen is a remarkable lady, and the circumstanceswhich permitted her successful operation were highly unusual.However, we have learnt a lot from this experience and fromwatching her subsequent progress and this may pave the wayfor similar operations in years to come, hopefully here in the UKas well as overseas. Whatever the scientific and ethical debates,however, Brenda is a very happy lady. Her children andgrandchildren can all converse with her normally and ‘peopledon’t hang up on (her) no more’. At the press conference inJanuary this year, she said, “I don’t know what the future holds,but it sure is better than what I’ve left behind.” I’ll leave it at that.

Martin BirchallProfessor of Laryngology, University College London and

Royal National Throat Nose and Ear Hospital, London

First, the thyroid gland is shaped like abutterfly and lies in a position adjacent tothe larynx and trachea. There are twolobes, one on each side of the larynx andtrachea. These lateral lobes are connectedby a narrow isthmus, which crosses thetrachea just below the larynx.

In doing a laryngectomy, we try to saveas much of the gland as possible.Usually, we can save both of the laterallobes, which means you are left withessentially all of your thyroid tissue.However, sometimes it is necessary toresect half, or even all, of the thyroid inorder to remove adequately the cancer.When we remove the larynx, we dissectthe portion of the thyroid that we aregoing to save off of the larynx andtrachea and leave it lying in the neck oneither side of the oesophagus.

This means that your thyroid gland isactually in two halves, one on each side ofthe oesophagus and slightly above yourstoma. The problem with thyroid functioncan come in several scenarios. The firstone is obvious with the need to remove all

of the thyroid tissue. You will be on thyroidreplacement medication before you leavethe hospital. (By the way, you will also beon calcium and vitamin D replacementbefore your discharge as well.)

More SubtleThe other two scenarios are more subtle.The first involves leaving some thyroidtissue but compromising the blood supplyin doing the laryngectomy. What happensis the thyroid slowly gives up the ship anddies. The last and probably the mostcommon thing to happen is radiationtherapy. The radiation causes the smallblood vessels in the gland slowly to stopup so you end up with a small scarredgland with poor blood supply andinadequate function.

Does everyone who has radiation to theneck need to be on thyroid replacementmedicine? The answer is, No. If you arehaving the symptoms of becomingfatigued easily, low energy level, weightgain, etc., and if you have had radiation,then you should have your thyroidhormone levels checked with a simple

blood test. Replacement medicine canthen be given on the basis of those results.

Glenn E. Peters, M.D., F.A.C.S.Director, Division of Otolaryngology –

Head and Neck SurgeryUniversity of Alabama, Birmingham USA

What On Earth Happened To My Thyroid Gland?

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A year since a laryngeal transplant

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Brenda Jensen, Jan 2010

Not Enough Hands?If you’ve ever wished you had three handsfor the job of valve cleaning, you mightfind this idea useful. Here is my mumBarbara cleaning my dad Ron with aheadlamp torch shining light directly intothe stoma – leaving both hands free forthe cleaning tools!

Anne Greenwood

Thank-You, LindsayVery sadly for the South DevonLaryngectomy Club, our Speech andLanguage Therapist, Lindsay Doidge, willnot be working with us any more. She isbeing replaced by a MacMillan Speechand Language Therapist. Lindsay hasworked for the laryngectomees in theSpeech and Language TherapyDepartment since 1983. During that timeher patients have spanned a large areaof South Devon from Teignmouth, NewtonAbbot, Totnes, Torquay, Brixham, Paigntonand as far south as Kingsbridge.

During this time she has helped everyonecoming out of surgery without any voicefrom croakers to wheezers. She haspatiently made us make all sorts ofsounds from vowels to words and beenvery successful with so manyoesophageal speakers. She has alsospent so much time with Servoxespressed against our necks (when manywould have given up) and has also gentlycoaxed people with prosthesis into betterspeech.

Not FlinchedLindsay has always been there to adviseus on breathing/healthy diet problems.She has witnessed the aftermath of somepretty horrendous head and neck surgerybut has not flinched in any way and hasalways been there not only for thelaryngectomees but to advise and helptheir families for it is also very stressful forthem. Having Lindsay there has alwaysbeen a blessing for her dedication, adviceand guidance which have gone beyondthe boundaries of any career expectation.

The South Devon Laryngectomy Clubwithin the NHS Trust has virtually been runby Lindsay for several years. We wish hergood luck in the future. A very big thankyou to someone who has always given usthat EXTRA CARE.

Shuvaun Freed

SwallowingWebWhispers (www.webwhispers.org/news/oct2011.asp) is an excellent websitefor laryngectomees. Here are someextracts of what people have to say ontheir experiences of swallowing after theoperation (date given after their name):

Swallowing after laryngectomy is aconstant discussion issue on WW. If youhave had swallowing problems pleaseshare with us how they were or are beingdealt with and the effect it has had onyour life:

Sheila Bogulski - 2007I have a rebuilt oesophagus from the skinon my forearm. I take my time eating andeat slow, sit up straight, and take a littleliquid after each bite. It takes a while to eatand many times it doesn’t go down like itshould. I cough it up so I don’t choke; Idon’t eat steak or any hard meats or anyfood that isn’t soft enough to swallow. I doeat hamburgers and hot dogs (takes awhile and I eat carefully).

I need a dilation at least once, sometimestwice a year, to stretch the oesophagusand it usually really helps. I never eat outin public like a restaurant, I will go to haveconversation and meet people there butnever eat, in case I can’t get the fooddown. I also can’t speak right after I eatuntil everything goes down, so out sociallyor publicly I don’t want to have a problem.

Doing a swallowing test helps if you arehaving trouble swallowing. Sometimesleakage in the Provox (prosthesis) is causedby food backing up from the oesophagusand this is also a good reason to have adilation. My doctor told me recently she isgoing to show me how to do my owndilation, looking forward to that (not). I nevertry to eat fast or the food sticks.

Ginny Huffman - 2005I have a dilation done under anaesthesiaevery four-five months. My oesophaguswon't stay open longer. It was graduallystretched over the years and I've beendoing this for six years. When I began thedilations, I had them once a month.

I tried a bougie at home which is a hardrubber tube and the process is to insertthe smaller end down your throatmanually. Mine was a 36 French. I had

very poor results but others havemastered it. Either my Doctor or I created afalse channel using it and so I gave up myefforts.

I have the dilatation done at the MayoClinic in a surgical room and it is stressfree and doesn’t cause any discomfortthat can’t be handled with a throatlozenge. I am under anaesthesia for theshort process and my gastroenterologistgives me steroid shots directly to theoesophagus during the procedure to aidin keeping it open.

I can tell when it is closing because myswallowing becomes more difficult. I ameating and swallowing much better astime goes by and hope to stretch it longerbetween treatments.

Pat Sanders - 1995I have never had a dilation but I do bidemy time when I eat. I was always a sloweater and that was exacerbated by beinga fast talker! When my biopsy wasperformed, before laryngectomy, thedoctor said my epiglottis was very smallas was the oesophagus and trachea, socutting out the part where the larynx isattached made the oesophagus evensmaller. I learned, from the very first, thateating or drinking had to be done slowly... small amounts and let it go down easy.If I rushed it, and took a sip of a drink,there was no place to go when I tried toswallow but UP... to the back of the nose.

I found certain foods that go down fasterand easier, like an omlette, mashedpotatoes and gradually learned to cutmeat small. When I had dental work doneand couldn’t chew properly, I even used amini food blender to chop up meat.

I can eat from a normal menu or maybehave become so accustomed to knowingwhat I can eat that I automatically orderthe foods that have gravies or sauces. Ido eat more cooked vegetables and lovesalads, but no big raw chunks of veggies.Even apples need to be cut small. Soups, Ilove, and can keep up with anyone at thetable! I surely do not starve but I don't talkas much!

When I eat alone, I have a book-holderthat I use so I can relax and take mytime... and read.

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You have probably heard of You Tube? It’s now owned by Google (but, then, what isn’t?).It’s a website that allows individuals as well as media companies to upload videos onjust about every subject under the sun. So we decided to see what videos are currentlyavailable on the subject of laryngectomy. And the answer is, there are a great many.Here are just a few :● www.youtube.com/watch?v=AYydnhu6NbU: Tony, a laryngectomee, demonstrates

just how versatile the TruTone speech aid is. It was uploaded in 2008 and has beenwatched over 46,000 times.

● www.youtube.com/watch?v=v2-bYxb1530: This video presents Mr Zwaan (from theNetherlands) talking about his life after a total laryngectomy.

● www.youtube.com/watch?v=qQg1CTr8IqI: Ralph Wach, a laryngectomee,demonstrates how he can still play the harmonica after his operation. This wasuploaded in 2010 and has been seen 840 times.

● www.youtube.com/watch?v=YE-n8cgl77Q: Dr Itzhak Brook’s presentation for healthcare providers on Rescue Breathing for Laryngectomees. This was uploaded inJanuary 2011 and been seen over 1700 times.

● Finally, Dr Brian Shute, a Speech Pathologist, sings “Old MacDonald had a farm”using a Tru Tone speech aid. This was uploaded in 2009 and has been seen over9000 times. It’s at: www.youtube.com/watch?v=-cIndHbzLMY

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Cup CakeShe approached with hesitation anduncertainty.Still attractive at 73, despite the ravish ofcancer That had unmercifully destroyed herspeech.Her eyes reflected the fear and despair Born from the pain of silence, darkened bysadness,Quietly pleading for encouragement andhope.Like most survivors she had many fears,But most of all she wanted to talk.

Pen and paper were kept in hand, asubstitute for speech.In her purse, an electric device thatsimulated voice,A lingering source of embarrassmentThat constantly reminded her of the loss.She joined the others that had precededherAs she silently moved from the solitarydarkness.The long journey to self esteem hadbegun,But most of all she wanted to talk.

The assault on silence beganWith that mechanical voice she sodespised.Alien sounds tumbled precariously fromher mouth,Until the words started to slowly flow,

But the loneliness of silence had bred adeep depression.With trembling lips and tear filled eyesThis newly acquired voice declared, "I can speak, but most of all I want to talk."

Her lips drew taut, with a quiveringtremble,As her chosen quest was explained stepby step. The discipline to succeed, and thedisappointments That rage in dark fury were examined.Her jaw drooped slightly from the weightof doubt, But her eyes darkened with determinationwhen she declared,"I can do it, I know I can, Because most of all I want to talk."

The quest began with a search for sound,A simple Ah would be music, a word asymphony.Scotch was repeatedly whispered untilfinally spoken,Next came "Cup Cake", two words strungtogether In a beautifully raspy voice, clearlyunderstood,She repeated, Cup Cake, Cup Cake, overand over,Until her eyes filled with pride and joy.Because most of all, now she could talk.

Jack Henslee (from the IAL website)

Poetry for the Mind and Soul Pea Soup with HaddockAnother recipe from the Soups andPuddings book produced by THANCSGroup (The Head and Neck CancerSupport Group for Hereford andWorcester). Copies can be obtained for aminimum £2.00 donation from THANCSat: Hawthorne Suite, Worcestershire RoyalHospital, Charles Hastings Way,Worcester WR5 1DD.

Pea Soup with haddockFrozen peas give this soup full flavour sodo not be tempted to substitute fresh peasfor frozen. If you do not like smokedhaddock, you can use cod or salmon.

Ingredients

½ medium onion – peeled and chopped1 small potato – peeled and chopped1 leek – trimmed and sliced25 g or 1 oz butterGarlic clove – peeled500 g frozen garden peas2 litres vegetable stock2 tbsp chopped fresh mintSalt and pepper to tasteApprox 150 g smoked haddock

MethodTo make the soup, melt butter insaucepan. Add onion, potato, leek andgarlic clove. Fry gently until soft for about10 minutes. Add peas and vegetablestock. Bring to boil then simmer for 15minutes. Remove from heat and stir inmint. Puree until smooth then add theseasoning. Poach the haddock in water

for 2 to 3minutes. Oncecool, remove theskin then flakethe fish removingall bones. Placea quarter of thefish on top of thesoup. Serves 4.By Wendy Owen

CREMATE MEA businessman on his deathbed calledhis friend and said, “Bill, I want you topromise me that when I die you willhave my remains cremated.”

“And what,” his friend asked, “do youwant me to do with your ashes?”

The businessman said, “Just put them inan envelope and mail them to the InlandRevenue Service and write on theenvelope, ‘Now you have everything’.”

Plymouth Club Newsletter

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The compass needle in my head ispointing north. Norway is on the horizon.My two previous cycle tours of Norwayhad been from Bergen but for this tour Iwanted to go much further north into theArctic Circle to the land of the midnightsun. Timing was important, too early andthe roads on the high passes could beclosed, early spring there would still be iceon the lakes and snow-coveredmountains. Mid May to mid June seemedthe best time to go.

With my bike stripped down and wrappedin a plastic bag I caught the 6.40 am trainto Manchester airport. There I met up withEddie, my cycling companion for the nextfour weeks. Eddie, like me, is retired, and amember of the Rough Stuff Fellowship. Afterchecking in our luggage we waited for ourflight. There are no direct flights to Bodø; wehad to fly to Copenhagen, Oslo and finallyBodø. Flying time is usually around sixhours but with delays we arrive in Bodø at11.30pm. It is our intention to sleep in theairport but some jobsworth says we can't,so we assemble our bikes and go and finda camp site, erect our tents and crawl intoour sleeping bags. It is 2.30 am!

After a late start we cycle to Bodø to buyfuel for our Primus stoves and five days’supply of food. Where we are going shopsare few and far between. Next day, earlystart, the wind is coming off the snow-covered mountains and it is quite cold.Stunning views over Skjerstadfjorden, wecamp at Fauske.

Breaking camp we take the mountain gritcovered road across several fast flowingrivers. Very remote but fabulous! We find awild camp site for a peaceful night. Nextday we join the main road and start thenightmare of the mountain tunnels – eightin total. These tunnels are very narrow andquite low ranging from 400 yds to half amile in length. The noise is deafening andthe air is foul.

Having finally negotiated the tunnels, wefind a wild camp site and wash the foulsmell from our bodies with ice cold water,cook a big meal and turn in. I sleep like alog.

More tunnels the following day, includingthe Sorfjordmo. Due to its length, walkersand cyclists are not allowed to go through,so we take the old mountain road,climbing for about five miles, have lunch,then up on to the plateau. Snow is downto the road and the lake is still frozen. Withthe sun shining it is winter wonderland.We sat down and absorbed nature'sscenic bounty. We camp at the side of thelake in glorious solitude.

Away early the next morning our nextpass is a climb of around nine miles. Theroaring we can here is coming from awaterfall that is full of snow melt andthunders beneath us on the road.Reaching the plateau again the snow isdown to the road and the lake is frozen.We can see Ptarmigan that have partlychanged from their white winter coat tobrown summer plumage. The plateauwent on for miles descending thenclimbing, exhausting but exhilarating. Wefind a camp site that is not fully open butthey allow us to camp. After a hot shower Iopen my emergency food pack which Icook for my evening meal (poor value).

For my breakfast I have the last packet ofsavoury rice. Still hungry we pack our tentsand move on. Thankfully the passes are

not very hard and at long last we find afood store at Sagely. Stocking up withfood, as the weather is very cold, the ladyin the shop allows us to eat our lunch at atable in the corner of the shop. That nightwe had high wind and rain which hadceased by morning and we woke to alovely day.

We have been cycling north for over aweek and we are now some 1000 milesnorth of Bergen. We turn west and headfor the ferry at Skulvik that will take us thetwo and half hour crossing to Svolvaerwhere we will start our tour of the LofotenIslands. There is a camp site not far fromthe harbour so our next day’s ride intoSvolvaer will be an easy ride without ourheavy panniers.

Svolvaer became a transit harbour in 1918and is one of Norway's most importantharbours. There is a nice atmosphere, abustling harbour and a lot to see in whatis a small town. Racks and racks of driedfish (stockfish) are everywhere. It is as hardas board with nothing left to waste. Thefish heads make dog and cat food as wellas perfume and medical supplies. Thedried fish is exported to various parts ofthe world. When the Vikings made theirlong sea voyages it was this fish thatsustained them. Part 2 in the next Clan

To the Land of the Midnight Sun Part 1with Ken Glaze

The Club September meeting took place at the Mustard TreeCancer Support Center at Derriford Hospital on Monday, 5September. There were only seven in attendance including threefriends. Another member joined us later. The business side of themeeting was kept very brief with Ted simply giving an overviewon forthcoming events. Charles Handley of Countrywide SuppliesLtd gave an informative talk regarding his products. He remindedthem that before ordering something new from his cataloguethey should always remember to first seek approval from Maggieor Julia at the Club. Mr Michael W. M. Bridger, a ConsultantSurgeon at ENT Derriford Hospital, will be retiring fairly soon. He iswidely respected amongst medical staff and patients alike, andwill be missed. Members were so grateful to him for giving upsome of his valuable time to give an extremely informative talkabout his lifetime’s work on head-and-neck cancers and howtreatments have changed over the years. He was a pioneer in hisfield in his day! Mr Bridger also gave an update on whichdirection he thought treatments might go in the future, touchingupon laser and transplants.

Intrepid members met at the Roborough Tesco’s Car Park onSaturday, 10 September to go on a Coach Trip to Dartmeet toenjoy a real Devon Cream Tea. Dartmeet is set in a particularlybeautiful part of Dartmoor with rolling tors (hills) and a fast-flowing running river. The sun even managed to shine for them!The journey to and from Dartmeet meanders through some lovelyscenery and it was a rare treat for the drivers amongst them to beable to take in those views... rather than concentrating on theroad! They held a raffle during the Cream Tea that realised £8which they promptly handed over to Patrick, their driver, as his tipfor the day!

Seven members travelled from Plymouth to Devoran onWednesday, 14 September 2011. It was well worth the three-hourround trip by car. The weather was absolutely beautiful and ClubMembers, along with some from The Recovery Club in Cornwall,

were treated to alovely Soup andSandwich lunch.Afterwards theyhad a round-tablediscussion and ageneral exchangeof ideas. Onemessage that camethrough loudly andclearly from allthree clubs wasthat they must allmake a concertedeffort to attractmore members to their respective club meetings and functions. Itwas generally agreed that joint meetings should be one wayahead for us. At least it’s a chance to see new faces. But how toget to meet new laryngectomees with the constraints thatconfidentiality place upon us all? The fifty-nine thousand dollarquestion!

The suggestion of changing our clubs from Laryngectomy Clubsto Head and Neck Cancer Clubs was briefly mentioned but therewasn’t immediate enthusiasm for such an idea. However, it wasgenerally accepted that this would open up the membership rateof our three clubs.

Plymouth Club

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This was held on Friday, 7 October 2011 atThe Mustard Tree Cancer Support Centre,at Derriford Hospital. The day started withthe Club’s first AGM. That was followed bya buffet luncheon kindly provided by ourproduct representatives. The afternoonsession included a very well-receivedpresentation by Trevor Phillips, our ClinicalSpecialist Physiotherapist, who talkedabout Managing Your Chest andBreathing after Laryngectomy Surgery. Theaudience was then divided into twogroups to discuss:

● The Carers’ Perspective and ● The Patients’ Perspective

All in all, a highly informative and sociableday! So much so that the general

consensus was that we should make thisan annual event! The day was wellattended by professional medical staffs,medical suppliers and of courselaryngectomees. Our especial thanks goto Maggie Jarvis (Clinical Nurse Specialist)and to Julia Pockett (Speech andLanguage Therapist) for organising theday. And we would also like to thank theMustard Tree and its volunteers who werewonderful hosts as always and kept ussupplied with never-ending cups of teaand coffee throughout the day!

See the slideshow at Photobucket and atPLC Facebook Page at:www.facebook.com/media/set/?set=a.133268386773905.19248.111621182271959andamp;type=1 .

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Ted Burnett presenting a certificate to MrMichael Bridger

Photographs courtesy of Liz Burnett

Plymouth Laryngectomy Information Day

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From Still TalkingEVER WONDER......why the sun lightens our hair, but darkens our skin?...why women can’t put on mascara with their mouth closed?...why you don’t ever see the headline “Psychic Wins Lottery”?...why “abbreviated” is such a long word?...why doctors call what they do “practice”?...why you have to click on “Start” to stop Windows?

The Recovery Club, Truro in CornwallNine members at the August meeting. John Henry, their SLT, told them about severalideas that are being considered at the ENT department. Mr Adcock is getting involvedwith acupuncture treatments in order to help patients with dry mouth problems. If thistrial is successful it will continue to be offered. Some members have tried acupunctureover the years with varying degrees of success. They were invited to take part in a jointmeeting with SpeakEasy at Deveron Parish Centre on Wednesday, 14 September todiscuss ideas, ‘pick brains’ and come up with some ideas in order to get their new groupup and running. On 8 September they went to Bodmin – The Courtroom Experience inthe morning, lunch, then visited Bodmin Jail in the afternoon.

At the July meeting, BethHigginbottom, Speech Therapist,presented to the group a box ofThornton chocolates, two bottlesof Martini Prosecco and a thank-you card. This was because thegroup contributed £500 towardsBeth attending the LaryngectomyRehabilitation Course in London.Beth said that the course wasincredible and she learned somuch which she will be able toput into practice with all laryngectomee patients. The summer trip was to the Lake Districtand was attended by 15 members. The coach proceeded from the Fylde to HaverthwaiteRailway Station where they had a nostalgic steam train trip to Lakeside where theyboarded the boat which sailed to Bowness-on-Windermere. The weather had startedout sunny but then it began to rain very heavily so everyone took cover. During the boattrip, a young gentleman of 80, Tony Bright, did a wonderful recital of Wordsworth’s‘Daffodils’. He said that he and his wife Dorothy still trip the light fantastic at their local teadances. It was very busy in Bowness because of Bank Holiday but the sun was shiningand they found a super restaurant and everyone felt very satisfied being fed andwatered. Afterwards the ladies did some retail therapy.

The Windpipers, Blackpool

Their newsletter listed the followingevents: Wednesday 5 October at the Clockand Key, Trispen attended by DavidBroadhurst who was to demonstrate a“new to them” lightweight speech aiddevice with microphone which has beenavailable in other parts of the country forsome time. Miles Williams from Platonwas also giving a talk. Friday 7 October -Laryngectomy Information Day at the

Mustard Tree, Macmillan Cancer Centre,Derriford Hospital, Plymouth – for larys,carers and staff: “Managing yourchest/breathing after surgery” by TrevorPhillips, Clinical Specialist Physio, andHMEs, Julia Pockett. November – visit toRadio Cornwall. And Wednesday 14December – Christmas lunch, to beprovided from Club funds, to be held atThe Carlton Hotel, Truro.

Speak Easy, Cornwall

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He’s a Friend of MineIt was last Sunday evening (Halloween)when the front door bell rang and,expecting a friend, I did not affix theBuchanan bib around the neck. I did notput the hall light on, so I opened the doorin semi-darkness, only to find six small,seven year olds all scarily dressed withtheir faces painted in a skeletal design.Each was holding a torch to their facewhich shone a green light.

The obvious ringleader I recognised asmy neighbour’s grandson, a lad I hadspoken with on many occasions. He hadobviously said to them before ringing thebell, that in this bungalow lived a man,who spoke words out of his neck, and onshining his green torch at my neck,exposing my stoma for all to see, he saidtriumphantly, "There, what did I tell you."

Five little mouths and eyes opened wide,as they all shone their green torches onmy neck and face, at the sheer horror ofbeing so close to a real Halloweenmonster, and as one they all took a stepbackwards. Because they were so low,not all my face was illuminated in thateerie light, with my eyes and sockets inshadow, both being like the black hollowdarkness of death in a green skull.There were moans and sighs all around,and they completely forgot to say, “Trick ortreat.” As I fumbled for coins to give them,the young ringleader said, “Could youshow them. Could you make words comeout of your neck?”

I duly put thumb to throat, and wished themall a happy Halloween. They lookedastonished, with little mouths opening wideat the sheer horror and all took anotherstep back. The young ringleader’s chestswelled with pride. There is no doubt I haddone the young man a power of good thatevening. I wished them all goodnight and,as I closed the door, I heard him boastingas they walked down the path, “Of course,he’s a friend of mine. He’s very good really.Does Christmas presents.”

Len Hynds

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..why lemon juice is made withartificial flavour, while dishwashingliquid is made with real lemons?

...why the man who invests all yourmoney is called a broker?

...why there isn’t mouse-flavoured catfood?

...who tastes dog food when it has a“new and improved” flavour?

...why Noah didn’t swat those twomosquitoes?

....why they don’t make the wholeplane out of the material used forthe indestructible black box?

...why sheep don’t shrink when it rains?

...why they are called apartments whenthey are all stuck together?

...why they call the airport “theterminal” if flying is so safe?

© The National Association of Laryngectomee Clubs 2011 Printed by The Ludo Press Ltd, London SW17 0BA

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The Happy LarrysThey have had quite a good year this yearstarting with their Charity Night in Marchwhere they raised £750. As pictured, wealso had stalls at the Summer Fayre atAintree Hospital which made a further£280. They have enjoyed a few publunches, trips to the theatre and in August,as seen in the last picture, they had awonderful coach trip to Llandudno.

StingraysMy wife Margaret and I have beenblessed to be able to lead a relativelynormal life. We are both well into oureighties and my operation was over fiveyears ago. Without in any way trying tooutdo Greg’s contribution, I thoughtreaders might be interested in a recentexperience which I had, which showedthat larys can often do challenging things.

To get away from a cold and miserablewinter at Running Stream, we went on acruise out of Tahiti. On one day, we wentof an expedition away from the ship in aglass bottomed boat to observe a varietyof marine life at close quarters. The laststop was to observe a colony of stingrays.While these were ‘in the wild’ in thelagoon off one of the islands, they hadobviously been tamed by feeding –usually with strips of tuna.

People on the vessel were invited, if theywished to do so, to go overboard tointermingle with the stingrays at evencloser quarters. I had not takenswimmers, because in general,swimming is a ‘no-no’ for Larys. However,when I was able to observe that the waterwas only a bit over a metre deep, Idecided to ‘give it a go’. That water depthgave me a bit of freeboard [but not much]below my stoma. I had to go fullydressed.

Margaret had not realised my intentionand the first she knew, I was overboard. Inthe excitement, I had left my electrolarynx,watch and glasses on. I was able to handthem up and no damage was done.

It was a fantastic experience with thestingrays pushing against my leg like apuppy and I was able to stroke them. I donot necessarily recommend thisadventure to other Larys, but it sureseems to say to them, whatever they arecontemplating but with some concern,give it a go!

Jim Hunt(from Still Talking – NSW Newsletter)

Sans BlasLaryngectomeeChoir Geraldine Thorn was determined to hearthe Leon, Spain-based LaryngectomeeChoir that has featured in Clan on variousoccasions. She has tracked them down onthe web and you can hear them on threesongs at: www.foros.es/alle/audio.asp

You can buy their CD for 8 Euros andthere’s even a DVD for 12 Euros. Geraldinesays she will stick with “Wandering Star”.

No Funds AvailableGeoffrey Read submitted a funding bid toMacmillan Cancer Support in August 2011to purchase the Press-Don’t Panic audioalarm devices and received a rejection.The reason given is that it is a Macmillanpolicy not to fund medical equipmentunder any circumstances. Geoffreythought it would be useful to advise clubsof this policy to avoid unnecessary timeand effort in applying.

The device is described at:www.pressdontpanic.co.uk

Mac The NewsChange is in the air in Mac News. Leafthrough the Autumn edition of Mac Newsto find stories about supporters like you,as well as information on their services,events and more.macnews.macmillan.org.uk/autumn_2011/?utm_medium=email&utm_source=Macmillan+Cancer+Support&utm_campaign=Mac+News+(Supporters)+22+September+2011&dm_i=FY7,JR7G,3DDZW8,1LU1P,1

Cold CreamLittle Johnny watched, fascinated, as hismother rubbed cold cream on her face.

“Why are you rubbing cold cream on youface, mommy?” he asked. “To make

myself beautiful,” said his mother. A fewminutes later, she began removing thecream with a tissue.

“What's the matter?” asked Little Johnny.“Giving up?”

From Still Talking – NSW Newsletter

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