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

PLENTY TO READ!We hope you’ve all had a good start to the year and areenjoying not being cut off by the snow any more! Our hensdefinitely did not enjoy it. Perhaps as a token of theirdisapproval, one of them laid an egg outside the henhouseright in the middle of a pile of snow. It still tasted good though.And the new NALC website is now fully up and running too. It’spacked with useful information and links. It has all the backcopies of CLAN you could ever wish for! So you need never runout of things to read. Especially as there are lots of usefulpublications you can download too. (This all assumes you’ve

internet access of course. If not, we’re still available in the paper version!

Benefit ChangesThere’s some useful information in this issue on changes to the benefits system on 8 April2013 when Disablity Living Allowance (DLA) is being replaced. If you are 65 or over andalready have a DLA award you will continue to receive it for the foreseeable future. But Ifyou are under 65 and applying for the first time you will be assessed for a PersonalIndependence Payment (PIP) instead of DLA. So do read the article. There’s also an itemon Cruises which invites those who have cruised to share ideas on what you need to takewith you if you’re a Lary about to go on a cruise. We’re off on yet another cruise in July so,who knows, we may bump into more Laries as we go sailing around Iceland!

Ian Honeysett (Editor)

Issue No. 124 March 2013

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 Website: 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. 125: 1 May 2013

Inside this issueWORDSEARCH . . . . . . . . . . . . . . . . . . . 2

Benefit System Changing . . . . . . . . 3

Not Lost For Words . . . . . . . . . . . . . . . 4

Swallowing After TotalLaryngectomy . . . . . . . . . . . . . . . . . . . . 5

Research Studies . . . . . . . . . . . . . . . . . 6

Charlie’s Voice . . . . . . . . . . . . . . . . . . . . 6

News from the Clubs . . . . . . . . 7 – 8

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

The New NALCWebsiteThe new NALC website is up and running!Go and take a look if you have access tothe internet. It’s at:www.laryngectomy.org.uk But, if you’venot got internetaccess, here is abrief guided tour:

Here’s the Homepage welcomingvisitors. As you cansee, you can nowdownload present &past issues of CLAN.

The other pages are shown on the right.Just click on them and there’s a hugeamount of information on all sorts ofsubjects. The News tab. For example, tellsof a new London Laryngectomee Club atUCLH in Euston Road, NW1.

Then there’s aPublications tablisting a wide rangeof pamphlets &DVDs:

There’s also a list ofClubs, an A-Za b o u tLaryngectomy and

details of Laryngectomy developmentssuch as laryngeal transplants. So why nothave a browse and see for yourself. Andwhat better way to relax than to read allthose back issues of CLAN?

PS There’s also the NALC Facebook pageat: www.facebook.com/pages/National-Association-of-Laryngectomy-Clubs-NALC/258664087522564

Ron Mattoon - Jan 2010“When I got cancer, I started thinking aboutmy physical healing and it taught me to thinkabout things a day at a time. I nowconcentrate on what I need to do each dayto beat this new challenge. Learning to dealwith each new thing was just another goal.Get through the radiation and chemo. Dealwith swallowing and the lack of smell. Learnto make my tongue work again and anotherway to talk. Although this was new to me,many others have gone through it and I candeal with it too. A day at a time and I canbeat this. Through WebWhispers, I have metso many great people who have gonethrough it all. You give me hope and rolemodels that show me how to do this, andmy family has been there to give me the

strength and support I needed.”

Bob Keiningham – 2008“My Daily goal: To organise each day for thethings I ‘Must’ do, then add one or two of thethings I ‘Should’ do, and fill the timeremaining with the things I most ‘Want’ to do.That’s my first thought every morning, andthe last each night.My Weekly goal: To review the week aheadand organise it to ensure I’m prepared to getthe ‘Must’ do’s out of the way as quick aspossible and select a few specific ‘Should’do’s for the coming week, so I can havemaximum time available for the ‘Want’ todo’s.”

Lillian Parra – 2001“I’m a pretty simple person; I’d like to sit on

the terrace of Nepenthe Restaurant in BigSur, CA and just take in the wonderful viewof the ocean, sip on something yummy andenjoy the redwoods. I hope I can moveback to Hermosa Beach, CA, from whence Icame, for the remainder of my days (thesooner the better for the move), but mostimportantly, I want to be right with Godwhen my time comes, so I try to talk to Himeveryday and make sure my heart is rightand that I'm doing my best to treat peopledecently.”

(From WebWhispers)

Many thanks to Kerry in the NALC office for the following Wordsearch. Can you find theselary-linked words?

STOMA, NECKBREATHER, NALC, CLAN, LARYNGECTOMEE, LARYNX, VALVE, PROSTHESIS,SPEECH, CLUBS, THERAPIST, VOICE, ASSOCIATION, LARYNGEAL TRANSPLANT, NECK, HEAD

2

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WORDSEARCH

My Cancer TreatmentIs a new patient website that providesaccess to detailed reports for thousandsof clinical teams across England. Theclinical team refers to the multi-disciplinary team (MDT), composed of agroup of doctors and other healthprofessionals with expertise in specificcancer types, who together discuss andmanage an individual patient's care andplan the options for best treatment.

The reports are based on assessments ofthe clinical teams that have taken part inthe NCPR quality assurance programme.My Cancer Treatment is the only resourcethat provides the public with access todetailed information about the quality of acancer service at the clinical team level,specific to tumour site. The tumour sitescurrently covered include Brain and CNS,Breast, Colorectal, Gynaecology, Headand Neck, Lung, Sarcoma, Skin, Upper GIand Urology. Chemotherapy andRadiotherapy services are also included.

In the next stage of the websitedevelopment Acute Oncology, Children’s,Teenage and Young Adults,Complementary Therapy, Psychology,Rehabilitation and Specialist PalliativeCare services will also be included. Thisinitiative was driven by the NCPR NationalUser Steering Group (NUSG), a group ofcancer patients and carers who workclosely with NCPR and have emphasisedthe need for this information to be readilyavailable to the general public.

How does it work?In up to three easy steps, you can searchby: location, cancer team and hospital, tolocate and compare NHS cancer servicesby reading the reports which detail thequality of the services.

The reports available on My CancerTreatment are based on the most recentassessments for that clinical team. If youwould like to know more about the IOG,please visit the NICE websitewww.nice.org.uk/guidance

Experiences of Laryngectomees

3

On 8 April 2013 the system is changing.Disablity Living Allowance (DLA) is beingreplaced.

If you are 65 or over and already have aDLA award you will continue to receive itfor the foreseeable future.

If you are under 65 and applying for thefirst time you will be assessed for aPersonal Independence Payment (PIP)instead of DLA.

If you are under 65 and already receiveDLA, from October this year theDepartment of Works and Pensions (DWP)will be contacting you to inform you thatthey are withdrawing your benefit. You willthen be given the opportunity to apply forthe new benefit (PIP).

Attendance Allowance will remain thesame for the foreseeable future.

We strongly advise those under 65currently receiving DLA to be prepared forthe change by making enquiries in yourlocal area about how to proceed.Although the contacts with people alreadyreceiving DLA will begin in October 2013the DWP has now realised that thenumber of people affected will take amuch longer time to process thanoriginally thought so we cannot tell youwhen your particular call will come or howlong the waiting time will be. We assumethat those DLA awards due for re-appraisal around that time will becontacted first with information about theirposition.

Our Priority

NALC’s priority is of course to look at howthis situation will affect our laryngectomeecommunity and we have spent a lot oftime and effort in attempting to protecttheir particular needs by taking part in allthe consultations and reviews that thegovernment has instigated. Themanaging of the situation is not helped bythe fact that the claim forms for PIP are notyet available, even to the professionalsworking in the field and our volunteershave even less chance of getting access.We will obtain a copy of the relevantdocumentation as it becomes availableand circulate the details to the best of ourability.

One aspect of the changes that gives usgreat concern is that system beingintroduced for claiming PIP expects the

use of the telephone as a means of bothgiving and taking of information. The firststep in making a claim is to telephone theDWP who will take the basic details andcarry out a preliminary interview over thephone.

For the laryngectomee it may be difficultand stressful to attempt to contact DWPthemselves over the telephone. In anyevent if they are able to sustain anadequate voice through the conversationthis may undermine their claim, much ofwhich may involve communicationproblems. Call centre staff will have littleknowledge of the variability oflaryngectomee voice and the episodeswhich make speech impossible.

Making a ClaimWe are told paper forms will be availablefor those claimants that are unable tomake the claim by phone. Therefore weneed to stress, that someone other thanthe laryngectomee needs to make thetelephone contact and arrange to havethe paper forms delivered.

NALC asks that every professional workingwith laryngectomees attempts to getacross to all laryngectomee patients theimportance of obtaining the paper PIPclaim forms with the help of anotherperson. Similar difficulties will apply in theappeals process.

Disclaimer: Information about precisedetails of the changes is taking a longtime to appear and in some cases iscontradictory. The information above is thebest available to us for the date this item iswritten. The prediction of an individual’sentitlement needs a full consideration ofall their circumstances. This news item isoffered only to warn laryngectomees ofsome significant changes ahead.

The Benefit System Is Changing! ExquisiteTina Rykens-Weirrecently attended apre-Christmas craftfair and wasimpressed by theexquisite handbeaded necklacesmade by Lorraine Hodgkinson. Tina hasattached some photographs and feelsthat our female readers may be interestedin them. They are all available for under£15 each. Lorraine can be contacted asfollows:

Lorraine Hodgkinson17 Culverton Hill, Princes RisboroughBuckinghamshire HP27 0DZTel: 01844 347230Email: ddrhodgkinson@btinternet.com

Just CruisingWould you mind putting a call out for allinformation from experienced larycruisers as to what I need to take with me,what to be prepared for etc as my wifeand I are going on a 12 night cruise inSept/Oct this year and have no idea whatmedical stuff (apart from nebuliser ofcourse) to take with us. We are going fromSouthampton to Portugal to the Canariesand return, so all English speaking andwe have already sorted out travelinsurance. Please e-mail advice toadmin@2020cancerappeal.org or post toPhil Johnson, 37 Windley Road, LeicesterLE2 6QX. Thank you all, in advance, foryour help.

Phil Johnson, Leicester Club

The Editor writes: I asked John and ShirleyJones for their ideas and they gave theones below. But you might have otherideas too?

The list of 'must take' items are:

Antibiotics from my doctor in case of achest infection;

Sufficient laryngectomee protectors;

Ointment such as Germolene in case ofexternal soreness around the stoma;

If using a Servox machine, remember totake spare batteries and the charger. NB:check that the ship has a facility forrecharging batteries.

How is it one careless matchcan start a forest fire,

but it takes a whole box to start a campfire?

4

Not Lost for WordsRev. Gunter Helft has sent CLAN a copy ofhis book entitled Not Lost for Words. Hewas born in 1923, spending his earlychildhood in Berlin where he witnessedthe beginnings of Nazi brutality. Broughtup as a Marxist atheist in a Jewish family,he was only as an adult to learn that hehad been adopted as an infant and he writes with feeling about adoption andparenting. With his parents he fled to England, with no knowledge of the language, anddescribes his assimilation at a London Grammar School, his exploration of Judaism anddiscovery of Christianity and his ordination and work at an Approved School, as aMission to Seafarers chaplain in Japan and the Sudan, his involvement in variousaspects of education, ultimately as Head of a very large Comprehensive school.

The book contains an interesting review of educational developments in the 1960s. Hesuffered throat cancer and discusses the peculiarities of cancer. He had to learn again tobe ‘Not Lost for Words’. With a mastery of oesophageal speech, he was able to exercisean active retirement ministry in church and education in Worcester. More recently hismobility has been much impeded by a stroke and he continues to be supported by hiswife of 59 years.

His autobiography is available on Kindle as well as in traditional form from Amazon etcpriced £7.19. The photo is of Gunter and his wife, Diane.

Now Read On…Here’s an extract: “Before my laryngectomy operation, I had a visit from the speechtherapist to explain how the operation would take away my voice and how she wouldafterwards be able to teach me to develop ‘oesophageal speech’. At the time it was allpretty academic and deep down I believed neither her prognosis nor the hope she heldout. As I have said, one cannot imagine oneself without a voice while one still has it. I amnot alone in having sometimes tried to imagine what blindness must be like by shuttingmy eyes for a while; but, of course, blindness is so much more than that, and those of uswith sight cannot imagine it. So it was with my perception of voicelessness. When SylviaPaine, the therapist, re-visited after the operation, I began to understand what I had lost,but not yet how I could acquire something in its place. “

“At this time I also received visits from two former laryngectomee patients. I was sograteful that they took the trouble to encourage me in this way. It was, on the other hand,good to see how these men had learned to communicate again, to progress from silenceto the ability to make themselves heard. On the other hand, their visits provided my firstencounter with this very different kind of speech and I found it ugly and frightening. I havetried to be sensitive to both aspects when I have myself since then visited laryngectomeepatients before and after their operations. It is encouraging to learn there is life after theoperation, but a shock to find that one is going to sound like that.”

Never Lose HopeCLAN’s friendly correspondent in Uganda,Emmanuel Bychance, has sent us thefollowing message for 2013: I am sograteful to welcome my fellowlaryngectomees and members of theCLAN in wonderful new year 2013, forthose whom we have lost may their soulrest in peace. As for us with life, I stronglybelieve that together we can reach ourgoals. Once you take God at heart, "Nomatter how poor you are and whatchallenges you have faced in life”, God stillremains our light forever in our life. Onequestion that I asked my doctor before myoperation was: “If you remove my vocal

cord and I have tobreathe throughneck, will I survive forsome good years?”

The doctor replied: “Iwill do my part andthe rest will be toGod.” Well I hadhope and trust that God still is with me. Sofar it is now five years since my operationand I am still doing well. My message tolaryngectomees is to be firm in everythingand a promised life is still there. Wish youall the best and also thank you for yourencouraging news you send in yourmagazine.

From Shock and Fearto Acceptance andJoyThe IAL Newsfeatures an articleabout KathyTurbucz Poirier andher laryngectomy.Here are a fewextracts:

30 March 2012: Myfirst visit to thecancer centre in London, Ontario, Ialready know I have a tumour but I’mfeeling good. They will just take thetumour out, give me some radiation andlife goes on. WRONG! This is the day Ifound out that I would be having a fulllaryngectomy with a possible removal ofmy oesophagus and a stomach pull up. Isat in the office and I was numb. I feltnothing. I had been diagnosed withAdenoid Cystic carcinoma, a rare form ofcancer with no known cause. I also have10-15 undetermined spots on my lungsthat will have to be monitored. Surgerydate is set for 20 April 2012 and we(husband, Claude) go home.

It wasn’t until later that night that reality hitme, I was going to lose my voice forever, Icried like I have never cried in my life.What was I going to do? Was my husbandstill going to love me, find me attractive?So many doubts played in my mind.

Next Morning

The next morning I was determined to bepositive that everything was going to beOK. I went to the store and boughtrecordable story books, nine in total, andrecorded three for each of my kids.

20 April: Surgery starts at 8 am, we get tothe hospital at 6, our daughters meet usthere. We hug and start the longest butshortest walk of my life in silence. No onespeaks, we are lost in our own thoughts Isuppose. I don’t know to this day whatthey were thinking, but I was thinking itwas the last time I was going to see them.I was terrified, I wasn’t sure if I was goingto make it and, if I did, did I want to? Wesaid our goodbyes and I was whiskedaway to the operating room. I rememberlying down on the table, having my IVstarted and not much else.

Guess what? I woke up! I wasn’t sure if Iwas happy about that or not at first, I wasso sick. Great news!

Swallowing After Total LaryngectomySwallowing problems (dysphagia) can occur after total laryngectomy. The dysphagiamay be temporary or long term. Risks of dysphagia include poor nutritional status,limitations in social situations and reduced quality of life.

The laryngectomy procedure involves complete surgical separation of the respiratoryand gastrointestinal tracts. For this reason, the laryngectomised individual does not riskaspirating swallowed material. Instead, dysphagia following total laryngectomy is mostlycharacterised by problems with propulsion of material through the ‘new’ post-surgicalswallow passage (sometimes referred to as the neopharynx).

The nature and degree of surgical closure used with total laryngectomy is unique foreach patient. As a result of the surgical closure, some patients may end up with a fold oftissue (pseudoepiglottis) at the base of the tongue. The pseudoepiglottis may form apocket or pouch that can collect food or liquid, resulting in effortful swallowing when thepatient attempts to clear pocketed material. If the pouch is large enough, anothersurgical procedure might be needed to fix the problem. Effortful swallowing might alsooccur as a result of the overall tightness of the surgical closure. Patients require removalof different amounts of surrounding tissue during surgery. For patients requiringsignificant tissue removal, the surgical closure will need to be tighter and swallowingmay subsequently require more effort. In severe cases, the narrowed passage mightresult in backflow of swallowed material all the way up to the oral cavity or nasalpassages. Liquids might be the only consistency the patient can swallow. Anotheroutcome from surgery may be the development of scar tissue which can create astricture or significant narrowing in the swallow passage. Sometimes this problem canbe temporarily relieved with stretching procedures (dilatation). This is only done underthe care of a physician. In some cases, a surgical procedure might be necessary torelease the stricture.

CriticalVideofluoroscopic evaluation of swallowing conducted by a qualified speech pathologistis a critical component of post-laryngectomy rehabilitation. Not only does this dynamicradiographic procedure provide objective evidence regarding swallow function in thisunique patient population, it affords the speech pathologist opportunities to introducecompensatory interventions. For example, alternating food and liquid consistencies orswallowing multiple times for each bite of food might be effective strategies for somepatients. Patients experiencing backflow of material might benefit from using a headrotation to assist with opening up a narrowed area in the swallowing mechanism. It isonly during the swallow x-ray that these types of interventions can be evaluated forusefulness. Diet consistency recommendations and potential for other treatments canalso be addressed during the evaluation.

For patients undergoing radiation treatment after total laryngectomy, another potentialproblem is lack of saliva (xerostomia) which can greatly impact oral manipulation andpropulsion of food. Diminished sense of smell is also very common after totallaryngectomy since transnasal airflow has been removed as a result of the surgery.These factors can impact appetite and result in reduced food intake and poor nutritionalstatus during a time when optimal nutrition is necessary.

For speech pathologists, it is critical to discuss potential for dysphagia during the pre-operative counselling session ahead of total laryngectomy. Speech pathologists mustalso advocate for the videofluoroscopic evaluation of swallowing post-operatively whenindicated. For patients, close attention to the act of swallowing is crucial for relaying anynew or persistent problems related to ingestion of food and liquid (including weight loss)to the appropriate health care professional so that appropriate evaluation andinterventions can be initiated as soon as possible.

Carol Blossom Stach, MA, CCC-SLP, BRS-S and Michael E. DeBakey VAMedical Centre, Houston, Texas

From: www.webwhispers.org/news/Feb2013.asp

5

Odd Sign: “Bottomless Pit – 65 feet deep”

Hippopotomonstrosesquippedaliophobia: Fear of long words.

Hey Presto!

Roy Cook from Pontefract wonders ifreaders might be interested in his ideawhich is to take the centre out of a ProvoxHME filter cassette and just leave the outerring that fits into the baseplate. Place acheap plastic whistle into the cassettehousing and secure with a fixative suchas ‘instant nails’. One deep breath and,hey presto, a warning device for next tonothing.

Avocado Ice CreamIngredients

2 ripe avocados – stoned & peeled¼ pint single cream10 fl oz double cream3 oz caster sugarJuice ½ lemon2 oz almonds – finely chopped & toasted

Method

Place avocado and single cream inelectric blender and work until smooth. Ina large bowl whip the double cream untilit forms soft peaks. Fold in the sugar,avocado mixture, lemon juice andalmonds. Place the mixture into a freezer-proof container, cover, seal and freeze.Transfer to the fridge 30 minutes beforeserving to soften. Scoop into chilledglasses to serve.

Ian and Rose Browse

Taken from Soups & Puddings producedby THANCS Group. Minimum donation(from non-laryngectomees) of £2.00 percopy. THANCS group: Hawthorn Suite,Worcestershire Royal Hospital, CharlesHastings Way, Worcester WR5 1DD.

6

Doug meets Bill at the bar after workand is once again looking down in thedumps. “What’s wrong now, Doug,”

asked Bill. Doug replies, “They called ina management team and gave

everyone in the office an aptitude testto see what they were best suited for.”“Yeah, so what’s the problem with

that?” Doug sighs, “Well, it seems that Iam best suited for unemployment.”

(Still Talking NSW Newsletter)

Research StudiesNeed You!The number of Head and Neck Cancerresearch studies and clinical trials hasincreased greatly in the past five years.Every research project needs theinvolvement of patients or carers from theplanning stage (writing the protocol andpatient information leaflet) at the start and,in the running of the study, by a steeringgroup over two or three years.

Involvement in a project will meanreading some scientific and medicalinformation. There will be telephoneconferences, exchanges of emails andoccasional meetings where the concernsand opinions of patient representativescan be raised. Expenses such as thetravel costs of patient/carerrepresentatives will usually be met.Training courses are available fromMacmillan and the NCRN on such topicsas the Biology of Cancer or the Basics ofResearch to help prepare for what maybe unfamiliar work.

In many regions there are groups calledConsumer Research Panels wherepatients and carers involved in researchcan share ideas and assist their localhospitals and universities.

If you would like to know more or thinkyou could make a contribution to this workplease contact Vivien Reed at the NALCoffice or visit the webpagewww.hnchelp.org.uk and follow the linkfor patients involved in research.

Malcolm Babb

The photo shows Malcolm in action at theNorth Trent Conference

It’s onThere are quite a few clips on youtube made by and aboutlaryngectomees. Here are three we recently found.

1. A ten minute video made in 2010 by grandfather, GrahamTaylor and grandson, Alex Ratcliffe (who operated the camera), about life as alaryngectomee. Over the months, Alex kept a video diary of his relationship with Grahamand his developing cancer. Graham clearly kept his sense of humour to the end!www.youtube.com/watch?v=Q94zKmq2fbk

2. A 2011 video about communication, specifically after total laryngectomy (surgicalremoval of the larynx). This video also highlights good communication skills and can beused in training for anyone working with the public. Produced by the South East CoastLaryngectomy groups: YakityYak in Brighton and Necks Best in Eastbourne/Hastings.www.youtube.com/watch?v=R4azcU6i2IE

3. A 2011 video about Steve, who started smoking at six years old and stopped six yearsbefore he got cancer. www.youtube.com/watch?v=PzwnO6o-V6w

from the November 2012 IAL News

News from the ClubsNews from the Clubs

7

Speakers’ Corner, Shropshire & Mid WalesTheir Newsletter notes the continuingdecline in club membership and led to adiscussion on the future of the club. Anydecisions were deferred to the AGM inFebruary at the Hamar Centre with a viewto implementation in 2014. In themeantime, members were asked toconsider all ideas to ensure specific needsor wishes are taken into account. Suchideas included: ● Ceasing to operate as a ‘Laryngectomee Club’ but to meet regularly as friends● Continuing as a club but with reduced number of meetings● Meeting monthly for pub lunches only

Their November meeting included discussion of their Festive Dinner which was to be atthe Lord Hill Hotel on 12 December. Lunch venues were The Grapes Inn, Bicton Heath,Shrewsbury in January; The White Horse, Wenlock Road, Shrewsbury in February andThe Horseshoe Inn, Pontesbury in March.

The photo shows club members preparing the raffle at Elsie Tong’s garden party inAugust 2012.

Windpipers,Blackpool

Their Christmas Meal at the St Ives Hotel,St Annes, was enjoyed by everyone andthe overnight stay was the icing on thecake. At their February meeting, OliverMaudsley from the Dept of Works andPensions gave a presentation on thechanges in the various benefits takingplace this year. Their annual charityBowling Competition takes place on 7April at Newton Hall, Staining. And theCancer Trust Summer meal at the SavoyHotel is on 8 June.

PlymouthClub Members had a delightful ChristmasLuncheon at the Legacy Hotel at MarshMills, Plymouth on Tuesday, 11 December2012. Everyone said the food wasexcellent! Thanks go to Fiona and Ron fororganising the event. It was made evenmore special by being joined on the dayby members of the Torbay LaryngectomyClub. On 8 January at the Mustard TreeCancer Support Centre, they had a talk byEunice Halliday, the Project Manager ofthe Plymouth Foodbank. On 12 Februarythey had a visit to Plymouth City Museumand Art Gallery. And on 12 March 2013they had a talk by Annabel King ofCrossline. In April they plan a visit to theLord Mayor’s Parlour, Plymouth.

Speak Easy Club,Cornwall

Christmas lunch at the Inn for All Seasonswas a great success and well attended.They were delighted that the RecoveryClub joined them again this year, as wellas several from the hospital, which allhelped to make a joyful atmosphere. TheInn kindly donated a ‘carvery for two’raffle prize. This was followed by a shortbut very interesting talk on budgies byMaurice Roberts, who has made afascinating career travelling the globeattending World Conventions on behalf ofthe Budgerigar Society. The Januarymeeting was at the Victoria Inn,Threemilestone, when plans were madefor the coming year.

‘20-20 Voice’Cancer Appeal

Their lady supporters in Wokingham (JJand Sherry) raffled off a couple ofChristmas Cakes (thanks to M&S andTescos) and raised a magnificent £81.85for the ‘20-20 Voice’ Cancer Appeal.Thanks to Kay Wakes, landlady of the TwoPoplars Pub, for hosting the event. Thephoto shows Keith receiving his ChristmasCake. Meanwhile, in Leicester they held araffle at the Leicester Royal Infirmary

where the firstprize was am a g n i f i c e n th a m p e rconsisting ofC h a m p a g n e ,White wine,Red wine, Hamand chocs etc,

which a delighted Mr Tony Bell won.

And over at Glenfield Hospital the ‘20-20Voice’ Cancer Appeal raffled off a giant‘Gingerbread House’ kindly donated byJohn Lewis Stores (Leicester). The luckywinner was ‘Mo Birrell’.

The two raffles raised nearly £100 for the‘20-20 Voice’ Cancer Appeal. Could youstart a ‘20-20 Voice’ Cancer Appeal groupin your area? We need to be nationwide –can you help? We are alive and kicking on

Facebook for all you social networkers,drop in and see us and you can alwayscontact me on:admin@2020cancerappeal.org.

Phil Johnson, Leicester Club

Happy Larrys,Liverpool

Their January meeting was at the Queenof Martyrs Centre, Liverpool. On 18December they held their Christmas Lunchat the Prince of Wales Hotel, Southport

The photo from their website(www.happylarrys.org) shows membersswimming at the Bounty House.

© The National Association of Laryngectomee Clubs 2013 Printed by The Ludo Press Ltd, London SW17 0BA

They concluded the year with theirbiggest ever Christmas Lunch. Membersgenerously supported a raffle and weregrateful for support from the CancerLaryngectomee Trust for the event. Theirmembership has grown over the year,partly because they welcome all headand neck cancer patients, not justlaryngectomees. Another factor has beenthe closure of nearby clubs, so they arenow trying to support laryngectomeesfrom Nottinghamshire as well as NorthDerbyshire. They have a busy socialprogramme planned and are alsoinvolved with other cancer support groupsin Chesterfield. They will be holding afundraising event towards the cost of

providing a bus service from Chesterfielddirectly to Weston Park Hospital inSheffield, where they get radiotherapy andchemotherapy services. The photo showsthe raffle draw.

Chesterfield Club, HNCHELP London Club (new)The first meeting of the Central LondonLaryngectomee Club was held on 12June 2012 at the impressive newUCLH/Macmillan Cancer Centre atHuntley Street WC1E 6DH. The event –opened with welcome speeches fromUCLH Speech and Language TherapistsSarah Eli and Lindsay Lovell, also FrancisVaz, Consultant Surgeon in ENT andHead and Neck Cancer, and LyndaFarmer and Khalda Meer, Clinical NurseSpecialists in Head and Neck Cancer –was well attended with around 25guests, including laryngectomees, theirfriends and families. Springtime eventsinclude walks and fundraising onHampstead Heath.

News from the ClubsNews from the Clubs

Being Heard I am now 51 years old and I was 40 when Ihad my operation. Since this time, I haveraised a son and he will be graduatingfrom Uni in Brisbane next month. He hastaken all that I have had to cope with in hisstride and we have a unique ability tocommunicate without the Servox.

I used to be a health professional at a localhospital but had to retire following thesurgery. I thought my work days were overbut I started my own medical transcriptioncompany and worked for hospitals anddoctors all over the world. I communicatedwith clients, staff and colleagues all overthe world using email, MSN and Skype and even then we usedinstant messaging dialogue. My professional life got bigger andmy cup runneth over as to the joy I experienced in myprofessional life.

I have spent the last few years travelling all over the world as Iwanted to fulfil my dreams of seeing the world and I foundpeople in every country to be most accommodating when it cameto my disability. In a world where we have to gain supportservices via the internet or via a telephone, communicating for alaryngectomy owner is not so easy and our role is to educateothers patiently so they can have patience to cope whenspeaking to us.

Empowering

However I think the internet has made achieving our goals lessfrustrating and it empowers us to do for ourselves and relieve ourfamily and friends of some of the burden. I still hate it when I haveto use the telephone with someone I don’t know. I find that it’s sotough to deal with their freaking out about NOT BEING ABLE TOHEAR ME. It usually takes two or three calls before they stop

freaking out and realise that they in fact have a human being onthe end of their line.

I am now swimming again. I used to love competitive swimmingand loved going to the beach. I have overcome my fears and cannow swim and paddle around to cool off. I have heard oflaryngectomy owners who have sailed the Sydney to Hobart andwe even have one here who goes surfing on a daily basis. I amnot that confident but it does make you wonder.

I keep healthy and do not go out into crowded places very often. Ifind that the internet provides me with a great outlet for myshopping needs including supermarket items. I am involved inarts and crafts projects and sell them at the Eumundi Markets.

I also love gardening and am growing veggies, tropical fruits,spices and herbs. I have chickens and, until recently, I had awonderful little dog (Timmy) but he was taken by a tick inSeptember. Tim and I communicated through hand commandsand he was able to do so many things that made our lives funand a joy. He is sadly missed.

Deb Melrose (from Still Talking – the NSW Newsletter)

Good Vibrations, East LancashireHeld their Christmas party 13 December2012 at the Peel Park Hotel, Accrington.

Here are some photos from their website:www.goodvibrationsclub.org.uk/index.asp