THE NATIONAL ASSOCIATION OF LARYNGECTOMEE CLUBS NEWSLETTER

Issue No. 118 September 2011

Inside this issue

Macmillan Centenary Gala An Alarming Walk
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Nothing To Pay

...................3 ...............

Baseplate Not Sticking? News from the Club

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No Flight Problems Condentiality

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68

Wine Tastes Like Brillo Pads

.....4

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

All Vegetable Soup

Heres another recipe from the Soups & Puddings book produced by THANCS Group (The Head & Neck Cancer Support Group for Hereford & Worcester). Copies can be obtained for a minimum donation of 2.00. You can contact them at: THANCS Group, Hawthorne Suite, Worcestershire Royal Hospital, Charles Hastings Way, Worcester WR5 1DD. A nutritional soup that is quick & easy to make. You can use this recipe as the basis for any vegetable soup, substituting any vegetables you have in the fridge/cupboard. Ingredients 2 large onions peeled & chopped 2 carrots peeled & chopped 2 small leeks chopped 2 to 3 sticks of celery chopped 1 small butternut squash peeled & chopped 1 large potato peeled & chopped 1 red pepper seeds removed & chopped 2 pints of chicken stock Salt & pepper to taste Method Place all ingredients, except the seasoning, in a large saucepan. Bring to the boil and simmer for 20 minutes. Liquidise or rub the soup through a sieve. Season to taste. Return to the pan and reheat. Ian and Rose Browse

EXOTIC PLACES
You may well have had your holidays by the time you read this. We had ours a cruise to the Baltic over two weeks in June/ July. The weather was perfect and the sea was calm. The food was delicious and seemingly unending (though we did spot a period of about an hour one Thursday when there was no meal scheduled!) We visited so many places that were just exotic names before like Copenhagen, Helsinki and St Petersburgh. But there is always a price to pay. In my case it was about half a stone! So, why not write and tell us about your holidays? With photos, of course.

Time for a Verse

And the summer seems to have inspired you to write some poetry. We feature several poems in this issue. These are always great fun. Maybe you will be inspired to verse. If so, send them in. Because: We like poems Even if they dont rhyme. And maybe They will, next time!

Ian Honeysett (Editor)

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 has been taken to ensure accuracy but NALC cannot accept responsibility for errors or omissions.

Deadline for issue No. 119: 1 November 2011

The Macmillan Centenary Gala Monday 28 November

This year, Macmillan Cancer Support celebrates its centenary. To mark this occasion, they are holding a special evening of musical entertainment from the past 100 years. To purchase your tickets call Macmillan on 020 7840 4747. Lines are open 9am to 5pm, Monday to Friday. Ticket prices: 325 for a ticket to the show and the pre and post show party; 225 for a ticket to the show and the post show party; 35 - 65 for a ticket to the show only. Hosted by Graham Norton and featuring stars of stage and screen, this gala event takes place at the capitals most famous theatre, the London Palladium. Theyve already got Miranda Hart, Jimmy Osmond, Fearne Cotton, Liz Hurley, Edith Bowman, Rufus Hound and Donna Air on the guest list. Will you be in on the evening of a lifetime? All performers are generously donating their time to appear at the gala.

An Alarming Walk
Clifford Hughes gave an update on the Chinwags Club of Kircaldy at the NALC AGM which included the following account of an alarming walk hed made: Recently, Alistair Lawson, representing the Scottish Rights of Way Society, gave an illustrated talk entitled Walk a little, talk a little to encourage us to explore the beautiful Scottish Countryside using the comprehensive, well-maintained, clearly marked network of footpaths. Our first corporate effort will be not on a footpath but a towpath. There are barges available, free of charge to disabled people, which move along the canal from Ratho on the western edge of Edinburgh. We could sit in the barge going out, and walk back along the towpath to refreshment at Ratho Inn. Weve enjoyed a number of fund-raising raffles and 50/50s which provide funds to supply helpful aids for larys SOS Talisman Bracelets a pre-recorded message SOS capsule a mini dictaphone which speaks for you if you are unable to speak for yourself. This reminds me of a predicament in which I found myself on a walk with Alistair. The viability of the track from Callander to Comrie needed to be assessed. We parked the car halfway. I would walk downhill to Comrie and set up the first round in the pub. Alistair would do the more arduous leg to Callander, return for the car and join me. Unfortunately my track disappeared in some soggy woodland where I thrashed and splashed about in ferns and bracken up to my ears! I passed a dead sheep. The water Ruchill, which drains Glen Artney and runs into Loch Eavn, was in full flood and a twenty foot drop on my right. I splodged gloopily around. Ooops! Theres that dead sheep again. I was getting anxious. I couldnt call for help. As a neck-breather I cant whistle. There was no signal on the mobile. And then, with huge relief, I heard chattering female voices approaching. Angels of mercy? Well, actually a ladies walking club. Six of them. They caught up with me, sustained me with some high-octane water, and, most importantly, traced the track out of the wood into the open. Alistair, on his way to effect my resce, met me smiling from ear to ear escorted by my female entourage. In the pub, over a pint or so, I explained my predicament. My fear the potential danger to one who is unable to make himself heard. Right, he said. Next time you carry a rape alarm! Clifford Hughes, Chinwags Kirkcaldy , Fife

Four In Ten
The following was featured in the Plymouth Club Newsletter and is by Adam Brimelow, BBC News: Rising cancer rates mean four in ten people in the UK get the disease at some point in their lives, Macmillan Cancer Support says. The figure has risen significantly in the past decade and poses a massive challenge for the NHS. Ministers in England say they are working to improve cancer survival rates and the quality of life after diagnosis and treatment.

which concluded that at the end of 2008 there were two million cancer survivors in the UK and that the figure was rising every year. Macmillan also looked at recent cancer incidence and mortality statistics for the UK, indicating that 310,000 people were diagnosed with cancer in 2008. About 157,000 people died from the disease, and 89,000 who had been diagnosed with cancer died from other causes, making a total of 246,000 who died with cancer. The charity says this accounted for 42% of total deaths in the UK... which stood at 580,000. Macmillan says the increase is partly down to an ageing population... older people are more likely to develop cancer. It says lifestyle factors, such as diet and exercise, and improved diagnosis have also contributed to the rise.

Macmillan Cancer Support says a decade ago about a third of people, or 33%, developed cancer at some point in their lives. The charity says that figure has risen to more than 40%. The estimates are drawn from projections published two years ago in the British Journal of Cancer,

The Wish List

Web Whispers (www.webwhispers.org/news/aug2011.asp) have asked readers "What would you like to do, within the next 5, or even 10, years?" Here are some brief extracts from the responses they received (with the date of their laryngectomy). Why not tell us about your Wish List? Jim Harris - 2008 I would like to live the next 10 years. I recently had a surgery and they told me I had about 4 years. I got out of the hospital, ordered an electro-larynx, and went back to work as a drilling consultant. I love life and I love my work. I haven't given up much of anything except trying to order food through the outdoor drive up mike. I am one of the most efficient consultants in the field and my boss likes me and my work ethic. Mike McQuade - 2008 Soon to be 72 I get up and sing Karaoke and I swim and dive under but before my time comes I would like to SKY DIVE!

Nothing To Pay
You all know Len Hynds our laryngectomee poet. He used to be a policeman and has sent CLAN this story from the old days
I had been doing traffic point duty at the Oval, when on being relieved, I was called to an accident outside The Horns Public House, where a car had driven into the rear of a lorry. A young mum in her mid twenties, driving the car with her two small children in the back, was not injured, but the car was smashed in at the front, headlamps, wings and radiator, and the car undrivable. Fighting back the tears and trying to be brave, she told me that the previous evening, at her isolated cottage outside Ripon in North Yorkshire, she had received a visit by a P.C. from Ripon station, to inform her that her husband, a travelling salesman, had been involved in an accident in Cornwall, but had died before reaching hospital. The police in Cornwall needed somebody to identify the body which was now in Bodmin Mortuary. She had no relatives who could do this for her, and in her isolated cottage no-one to leave the children with. So she had set out in this very old car, with the children in the back, with only enough money for petrol each way, and some snacks for the children. To say she was distraught would be to put it mildly, and now she was stranded in London, and just didnt know what to do. I had her car towed into his garage by Charlie Valiant of Sutherland Square, and the station van to take us into the station, where they were comforted by our wonderful old matron, and had a wash and tidy up in her room. George Howard was Station Sergeant, and he took them all down into the canteen and bought them breakfast. I phoned Charlie Valiant, and he told me how much all the replacement parts would cost, and I said that she had no money and explained the circumstances, and that I would try and raise the money through the lads on duty. Charlie immediately said, "See what you can do, Len, I wont charge anything to do it." said that he would start work on it immediately. When he asked how she was going to continue the journey, I told him that we would take her, and after a discussion with the other P.C.s as I had the best car (an old Wolseley), it would be me. He said that it was a round trip of about six hundred miles, and after working out how much the trip would cost with petrol terribly dear at half a crown (15p) a gallon (4 litres), he insisted I took the petrol money from him, as he guessed I had already emptied my pockets. So we set out at about mid-day and they were all soon asleep in the back. There were no main roads in those days, and motorways were unheard of, so it was winding narrow country lanes all the way to Cornwall, which took nearly nine hours and the Bodmin police opened up the mortuary for us, and I stayed with the children outside whilst she went in to identify him. It was 10pm when we set off back again on that long journey, with her in the back cuddling the children telling them that their daddy had been such a good man that he was now with Jesus. There was a lot of crying in that car, but they all eventually fell asleep. We arrived back in the station yard at 7am, and Charlie had just delivered the car, and all were standing around it looking at his handiwork. He had worked on it all the previous day, and all night non-stop. I am sure that he had done extra things without telling anybody, such as brake linings, and adjustments. After George took them into the matrons room for a morning wash, he bought them all breakfast again, and eventually they were back in their car ready for the long journey northwards. We all stood around the car saying goodbye to the children in the back when, from the driving seat, she said to Charlie, "You know I can't pay you now, but let me have the bill so I can send it to you." "Nothing to pay love, its all been taken care of," Charlie replied She looked amazed, and then another Sergeant stepped forward and put a brown envelope on the seat beside her. "Thats for petrol and food on the way back home." I saw her eyes fill with tears, and then she wept openly, and looking at this hard bitten bunch around the car, she said, "You are all such kind wonderful men." I have often wondered how that poor young woman got through that difficult time. Life can be so hard for some.

No Flight Problems
The following letter from Greg Joss appeared in Still Talking the NSW Newsletter: It may reassure those contemplating a long flight.
For those larys interested in travel, I am delighted to report that I had no flight problems. I had my laryngectomy end of July last year. Up until only a week ago, I was still having problems with stenosis of my stoma if I slept without a trachy tube fitted. Over the last week, I have not worn a tube except for 20 minutes some mornings to check size and conformation only to find that it inserts nicely, is loose and easily huffed out. I am now sleeping many hours without the previously usual need to rise every few hours in order to clear out and clean the stoma. As a result, I have had some mucus crusting around the stoma rim which I clear with a wet cotton bud.

As Good As Could Be
I was anticipating some problems in flight with humidification etc but effectively had no problems at all. We flew 14 hours to Abu Dhabi; had a seven hour stopover during which we did a return trip to Dubai in the Etihad shuttle bus; 1.5 hours each way; then six hours to Heathrow (where the passport control queues were horrendous!). We found the flight, seating, food and service with Etihad as good as could be expected on an economy ticket and would be happy to use them again. I booked the flight less than a month ago wanting my stoma to stabilise before committing to an extended trip. After booking, I immediately became quite anxious about my ability to cope. This was somewhat assuaged by a flight to Cairns and an eight day stay with a old friend near Bramstom Beach, an hours drive south of Cairns. The fading of the stenosis also helped my confidence. I was well prepared with the usual lary paraphernalia, medications etc but have not needed more than a good supply of tissues and drinking water. I did find that the anti-swelling pressure travel socks that my wife bought me and insisted I wear worked beautifully. I had had significant problems with swollen and weeping legs during my hospitalisation but arrived in London without any swelling. So I am happy to report that my laryngectomy has so far continued on page 5

Raised Enough
Within half an hour by seeing everybody in the station, I had raised enough for Charlie to purchase a new radiator, wings, front bumper, headlamps and side lights, with everybody contributing from the Chief Inspector downwards. With P.C.s wages then about 10 a week, I knew that many had completely emptied their pockets. I took the money round to Charlie, and he

Wine Tastes Like Brillo Pads

The Daily Mail recently featured an article on Radio Celebrity Danny Baker who has just announced he is clear of cancer of the mouth and throat. Here are some excerpts: Pre-cancer, Baker would have celebrated the end of each show with a couple of bottles of wine, but not now. White wine tastes like Brillo pads. I managed four spoonfuls of lasagne today, he says triumphantly. Off air, he speaks faster, with more of a Cockney accent. It's amazing how he keeps going, without the saliva. There are very few things I can eat, he says. Anybody whos had that kind of cancer is suddenly made aware of the machinations of your mouth. You think, well, I must be able to eat that if my appetites still up, and you put it in your mouth and it just turns to stone. Your tongue is pulverised, all the muscles are dry, you cant swallow, you cant manoeuvre things in your mouth, and youre rushing to bins to spit it out. Before he was ill, his life pretty much revolved around food. God, my wife is one of the great gourmet cooks, says Baker. Shes got seven sisters and theyre all like that. Does his throat hurt? No, not at all. Its healed tremendously well. Feel my neck. He directs my hand to it. Just generally how soft it is, because all the radiation makes your skin slough off. It melts. You get up and think, Im all wet. And its not blood, and you think, Oh God . . . ' You radiate your head and everything goes your taste buds, saliva glands, everything is cleared out. Boom! Anyway, he says, enough with all the miserable stuff. Now it's time to get on with living, dreaming up more crackpot themes for his phone-in shows and

having fun. You know, Ive had tremendous fun for the last 30 years. He says, It is an enormously absurd way to earn a living and you can never lose sight of that. And when you get cancer for eight months, its a drag, but all you want to do is get back to the goofy wonderland in which you rattle around.

Never Smoked
When I think of throat cancer, I say, I think of John Diamond (Nigella Lawsons writer husband who died of the disease). Well, yeah, you can say that, but there are many less publicised cases of people whove survived. John was a lifelong smoker, too. Ive never smoked in my life, so theres no rhyme or reason to it. It just happens. And your mind can race to horror stories, but I aint built like that. It was a horrible time, but it was bound to be. I didnt find it life changing. Ive had no Damascene moment. Ive not come out of it a different person. Was he bored not working? God no, he says, he didn't have the strength to be. No! I was ill. I was very ill. I barely had the energy to heave myself over in bed. They told me: The good news is the prognosis is optimistic, the bad news is that, other than bone marrow, its the most gruelling of times. And thats how it proved. My head had to have the radiation. If its in your body, its fine, but if its in your mouth, you cant talk or eat and there are various other disgusting conditions that come with it.

Confidentiality
The basic aim of our Laryngectomy Clubs and/or Head & Neck Cancer Clubs should, in my opinion, be to provide a support for our fellow patients. To support each other in whatever way we can. The social side of our clubs and the entertainment they provide does form part of that support. However I believe that our primary support to each other should be in the form of listening, encouraging, morale boosting and confidence building, without being overpowering! I am not talking about professional counselling here but simple fellow support! And yes, I am aware that Macmillan Cancer Support provides training for those who wish to dig deeper into the subject. It would seem, however, that sometimes our hands are tied by Confidentiality. This is one of those modern-day terms riding on the back of the Health & Safety at Work Act and the Data Protection Act and all sorts of other Acts! Dont get me wrong, I do understand that these Acts are there for the protection of us all, but they can at times be restricting, and what we might call common sense is not always permitted to prevail. The medical staff closest to us, usually those in our ENT Outpatients or in in-patient wards of our hospitals, have their hands tied by Confidentiality. They are not permitted to let our Clubs know when one of our Club Members is in hospital, about to be released or anything else. Its literally more than their job is worth for them to do so. This often results in our members being in hospital or even having an operation without anyone in the Club knowing. Of course, some dont want support, and some might not appreciate a hospital visit. But then I do know that some would! So where is the support? As Secretary of the Plymouth Laryngectomy Club I would very much appreciate hearing from Clubs or individuals as to how they deal with the subject of Confidentiality so as to better the support they provide to their Members. Do please email me on: saudigeoff@yahoo.co.uk

Geoffrey N. Read Plymouth Laryngectomy Club

Baseplate Not Sticking? Try This!

My father, Ronald Greenwood, had a laryngectomy in August 2009 at the age of 83. After three tough months in hospital, he finally returned home and looked forward to attending speech therapy to learn a new way to speak. However, Dads physical neck anatomy proved difficult. His stoma is oval-shaped, set quite deeply between tight, protruding neck muscles. He found it difficult to cover it completely with his thumb and adhesive baseplates would come unstuck, allowing air to escape when he tried to speak. Dad was feeling frustrated and rapidly losing hope. Even the speech therapist found his case challenging. The initial breakthrough came through a simple solution. My mother, Barbara, tied soft material around a ball of cotton wool, with a handle, forming a mushroom shape. Dad learnt oesophageal speech by pressing the bundle of soft material over his stoma to stop air escaping and he found his voice!

Deadline Extended
The deadline for submissions from doctors, patients and carers of treatment uncertainties has been extended by the Head & Neck Cancer Research Setting Partnership to November 30 2011. In September, all clubs will receive details of some of the suggestions submitted so far and further advice about how to get involved in this important project. In the meantime any club or individual can make a submission using the form sent out already or the web link provided. Please contact Vivien Reed if you need more information.

This was an encouraging start but Dad felt it wasnt ideal to carry his homemade material mushroom everywhere with him. Mums next experimental discovery was that a standard HME, usually worn with a baseplate, also fits into the plastic trachea tubes. So now Dad first puts a Kapi-gel around the stoma. (This is a jellylike doughnut shape which acts like a spacer.) The plastic trachea tube sits snugly on top of this, held in place with the Velcro neck band. Then Dad simply fits a standard HME into the end of the tube and talks! We wanted to share this idea as perhaps other laryngectomees find difficulties with adhesive baseplates too. Hopefully some readers might find this alternative to be a solution.

Malcolm Babb NALC Vice President

No Flight Problems
Continued from page 3
proven not to be a reason to stay with the security and comfort of home which I had come to value particularly and rely on over the last year. Apart from the usual effects of ageing (I was 71 last January) it is still possible to enjoy life. The support gained from attending the LANSW meetings and involvement with the website have contributed tremendously to my recovery, confidence and wellbeing.

Anne Greenwood

Macnews
Have you seen the online Macmillan magazine for Summer 2011? Its packed with interesting features & news (including video clips). You can find it at: www.macnews.macmillan.org.uk/summer_2011

A small boy is lost so he goes up to a policeman and says: Ive lost my dad. Whats he like? asks the policeman. Beer and women replies the boy. (from NSW newsletter Still Talking)

Shoulder Dysfunction
The following letter was to Still Talking the NSW (New South Wales, Australia newsletter):
Your article has reminded me of my own experience. By 2000 I had developed Cancer of the tongue which ended up at Stage 4 by diagnosis that December. During the preceding winter months, I discovered pain similar to that described. Initially, I thought the problem was that my mattress needed an urgent replacement as the pain occurred when in bed. However, I learnt that as the cancer spread it had paralysed a nerve (Spinal Accessory?) leading to the failure of a muscle (Trapezius?). It was too late for me to have surgery so I had Chemotherapy and Radiotherapy. When treatment was completed, being concerned that I had the same limited use of my arm, I consulted a physiotherapist. I learnt that the nerve and the muscle were still able to function but would benefit from

exercise. A muscle on top of my left shoulder had collapsed and muscles leading from it likewise. The left pectoral was sagging as if the muscle had collapsed to under my armpit. (Man-boob would be an appropriate description to apply here.) Ill health caused a premature end to that and a following series of appointments with physiotherapists at the same practice. A third was started later but only after my laryngectomy and commencing at a second practice was I finally able to lift my arm normally. Last year I commenced treatment with another therapist and the programme I commenced then still needs to continue. My main problem now is my appearance the dreaded manboob! I will never work as an underwear model again unless I succeed in exorcising it. And I fear attending the local swim centre, changing to my Speedos and being scorned by all the Chicky-babes! Oh, my dismay!

Raymond Chappelow

News from the Clubs

Speak Easy, Cornwall
From their newsletter: This month, Jack Pagett, Brenda Salter, Di Helyer, Ted and Barbara Barlow, Peter and Pat Clark, Ron and Rosemary and Jan were treated to a magical boat trip on the Helford River followed by delicious afternoon tea courtesy of the Budock Vean Hotel thanks to Ted and Barbara. Our thanks also to Phil who took us on a guided journey up and down the many beautiful creeks, where we saw egrets nesting and cormorants taking flight alongside the boat, into Frenchmans Creek (for Daphne du Maurier fans), and then past multi million pound properties, some owned by famous people. This was followed by an informal meeting at the hotel. A warm welcome had been extended to Ron, Rosemary and Val by Plymouth Lary Club at their recent meeting (which was attended by Bill from NALC) and Speak Easy would be happy to go up to Plymouth again. Ron told PLC members that they are welcome to join us at Totnes Littlehempston for the steam train journey (details below), and of course we look forward to seeing them at Devoran in September for a soup & sandwich lunch.
Here is an account of their recent trip by steam train: After quite an early start for those taking the train from down West, seven of us met up with Miles from Platon for an enjoyable, scenic trip back in time on the Buckfast Steam Train from Totnes to Buckfastleigh. We had two hours to spare, so after lunch some wandered into the town, but there were several attractions around the railway at the butterfly farm we saw one emerge from its jewel-like continued on page 8

Chinwags, Kirkaldy
On 27 June 2011, 13 (laryngectomees, Speech Therapists, family & friends) made their way to Ratho. They were going on one of the barges on the Edinburgh Canal (Seagull Trust Cruises). The crew were very helpful and entertaining. There were three crew members all volunteers who gave them a lot of information as they went along. Tea and biscuits were served. Before their return journey, they stopped at the picnic area. As it was raining, they all stayed on the barge. They all enjoyed the Marks & Spencer picnic hamper, crisps, drinks etc which Christine (the Speech therapist) kindly organised and picked up. She also organised the booking of the barge (for which many thanks). The Seagull Trust is free for people with special needs or disabilities. The crew are all volunteers. Donations are welcomed. They returned with Christine steering them part of the way back. They all bought souvenirs (pens, fridge magnets, small bears, postcards etc) to remind them of the occasion. They arrived back at 5.30. They all had a lovely afternoon (despite the rain). It was very peaceful and calming. The photo shows the group beside the barge.

THE LOVE AFFAIR

How could she expect me to love it, a bright pink, convertible car. It was a ladies car, or for funny young men, not a copper who was manly by far. My poor old Charlie was no good for the wife, so to that heaven, he had to be sent. A really true friend, in many moments of strife, Such sadness, when cruelly bent. But late one night, as I was driving home, in my effeminate looking car, I spotted a smash and grab, in that gas-lit gloom, and the bandits as they sped off afar. I gave chase along that silent street, with headlights and hooter blaring, hoping a police car, that I might meet, with such noise and all lights glaring. We did many miles at eighty, with me close, right up their tail. They thought it was the CID, to take them off to jail. At last my colleagues stopped them, those villains looked in dismay, at my litle pink marvel, racing gem, which had really spoilt their day. And then I realised it was Charlie, his spirit had been reborn. a true coppers car, my Charlie, Id never leave you, he had sworn. So now my little pink Zodiac, is known by all the nick, what gives those villains heart attack. There quite glad when hes off sick.
Len A. Hynds

Diary Dates
Wednesday 14 September Laryngectomy Conference Ireland Wednesday 19 October Welsh and

Western Patient Day in Swansea For further details please contact Head Office on 020 7730 8585 or info@laryngectomy.org.uk

The Windpipers, Blackpool

At their May meeting, they welcomed Ulla Rohrbeck from Heimomeb, a German company, who demonstrated their products for laryngectomees. They had a very informative evening and were very impressed with the Larkel swimming aid. Ulla distributed free samples to all the members and they had a very pleasant evening. Some of the members attended the Hacketts Hotel for their usual luncheon and it was nice to meet up with other groups from the North West. The Easy To Swallow cookbooks, which the club had purchased for laryngectomees, have been passed to Jo Ashton for distribution. A trip to the Lakes is anticipated for August and, of course, the NALC Lunch is on 4 September in Penrith.

News from the Clubs

Oxford
Many of the club members turned out at the Churchill Hospital, on Thursday 19 May 2011. The occasion was the presentation of diagnostic equipment to the hospital and also for the naming of the room in honour of Ken Whiley. Kens family were well represented. His sister Grace, brother Peter and wife Annette, son Keith and Keiths partner, Kay, were there. Although Ken himself was unable to be there in person, he made a speech, which was delivered by his son, Keith:

Lothian Club
A club member, Jim Thomas, has written to CLAN with a poem by George Robertson. It was prompted by a request from a laddie about 6 3 and about 16 years old who asked me to get him fags. I told him my wife had told the shopkeeper not to sell me fags. I didnt tell him Id stopped smoking 27 years previously. I showed him my stoma by lifting my Kapitex Bib. At that time I didnt use a lary button. Ive never seen him since!

Firstly, I would like to say I am sorry that I cannot be there in person. I am very honoured having this unit named after me. I feel the room is honouring not only me but also the work carried out by the Oxford Laryngectomy Club. For those who dont know I would like to tell you a bit about the history of the club. The laryngectomy club in Oxford goes back a long way. I formed the club a few months after my operation in 1982. I had heard about similar clubs elsewhere and felt that this was something badly needed for the Oxford area and it certainly was needed. In my 25 years plus with the club we gained many members those who were about to have operations, their families and friends. Members came, from people in Oxford and from miles around. The club went from strength to strength not only helping those affected with information who were about to have an operation but also as a social club and fundraiser. I remember many enjoyable lunches and dinners. These were great for meeting members and their families but also raised money through various raffles. That was apart from bring and buy sales and other events run by myself and other members. Substantial amounts have been raised and this has been used over the years to help the consultants buy much needed equipment, helping individuals affected and refurbishing a relatives room in the hospital to name but a few. I know since I moved to Essex the club has continued to raise money and arrange various lunches and dinners. So in conclusion I would like to repeat how deeply honoured I am to have this unit named after me and would like to thank you all for coming with a special thanks to the consultant, Mr Cox. Thank you all. Ken Whiley

The Lesson
Mister, mister, can you do me a fave, Im a lad who is a nicotine slave; I need a draw, I need a drag, Desperate for the kick of a fag. Mister, mister, Im out of my mind, Twenty please, if youd be so kind. Im going crazy, Im in a rage, The shop wont serve me, Im underage. Listen lad and listen good, Please dont think Im being rude. Before you board this smoking boat, Have a wee look at my throat. So go away, just turn and flee, Learn a lesson shown by me. Do you still want this mans fave? I didnt think so! Not that brave.

Head & Neck Cancer Clubs

I have heard that several Laryngectomy Clubs throughout the UK have progressed from being Laryngectomy Clubs to becoming Head & Neck Cancer Clubs. In other words, accepting Head & Neck Cancer patients as members. The NALC Association Secretary has confirmed to me that this is perfectly acceptable. As Secretary of the Plymouth Laryngectomy Club I would very much appreciate hearing from those clubs that have made this change and whether it has proved to be a bonus or a problem to them. Do please email me on: saudigeoff@yahoo.co.uk

Sans Blas 2011

Clan readers may recall news of the celebrated Laryngectomee choir from Leon. Well, the latest magazine ALLE has two photos of them celebrating the Feast of their patron San Blas (St Blaise). They sang in the Church of San Martin. We did a web search to see if they appear on You Tube so we could hear them in action. But we couldnt find them there. So just enjoy the photo.

Geoffrey N. Read Plymouth Laryngectomy Club

News from the Clubs

Plymouth
The club has its own website at: www.plymouthlc.webs.com where you can read about all that is happening. Here are a few snippets:
A copy of the Clubs Calendar of Events, including Future Entertainments for the next 12 months or so, is available on our Clubs website. The PLC Clubs August Meeting was at the Mustard Tree Cancer Support Centre at 11 a.m. There was a Talk by our Guest Speaker, Miles WILLIAMS from Platon Medical. On 5 September they held their Annual General Meeting at the Mustard Tree Cancer Support Centre at 11 a.m. After the meeting there was a Talk by our Guest Speaker, Charles HANDLEY from Countrywide Supplies Ltd. On Wednesday, 14 September The Speak Easy Club in Cornwall has made a booking at Devoran, near Truro, for a Soup & Sandwich lunch and has invited PLC Members to join them. Also in September Ted will be organising a minibus trip from Plymouth to Dartmeet for a Cream Tea. Meanwhile, Club Secretary, Geoff Read has sent this to CLAN :

Lost Chord North Staffordshire

On Tuesday 5 July the Lost Chord Club (North Staffordshire Laryngectomee Support Group) along with the Head Cases (Staffordshire Head and Neck Cancer Support Group) visited the National Arboretum at Alrewas. We arrived at 10.30 in time for those who wished to attend the 11 oclock service. Members then toured the site either by train or on foot. At 1.00 pm we departed for Barton Marina for lunch. We had an excellent lunch enjoyed by everyone. After lunch some of the ladies visited the shops around the marina. The general consensus was that everyone had a great day out!

Ashford Club
Here are two photos of their day trip on the Hythe and Romney railway, travelling from Hythe to Dungeness, with a traditional pub lunch at The Britannia Inn, where fish and chips have an excellent reputation. There were 26 in the group, the weather was lovely and all enjoyed the scenic ride, the fish and chips were very tasty and all enjoyed the summer outing. The group are now busy planning their next venture with plenty of ideas to choose from.

IF AT FIRST YOU DONT SUCCEED...

I was in and out of Derriford Hospital one week in July! First as an overnight inpatient to have my oesophagus dilated for the umpteenth time! An overnight stay. They then tried to fit a new valve the very next day but this was not to be! It just wouldnt go! I returned to the hospital two days later and had a new all-singing, all-dancing valve fitted at long last. Even though I now have a very sore throat I can manage to eat and drink again after 12 weeks abstinence! I can even talk a little! I am so grateful to all concerned at Derriford Hospital... especially for the never-ending patience of Maggie and Julia! I know Im not the best of patients but those two never seem to give up on me... even though Im sometimes getting ready to throw the towel in! Its great to know that kind of support is available to us all!

Speak Easy, Cornwall

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chrysalis, exotic specimens flying amongst tropical plants, and terrapins so static we thought they were plastic models until one or two suddenly slid into the water. From there, on to watch the otters swim and play; and for those who really only came for the trains(!) a museum and a miniature railway. Our thanks to Pat for organising the day, and to Miles who, on behalf of Platon, paid our entrance fees to see the butterflies and otters. We were disappointed that so few were able to make it, and missed those who had wanted to join us but were prevented (especially Val who boarded our train at St Austell, heard she was on a train to Glasgow, so jumped off!). We would welcome suggestions from members for outings or other social events at the moment our events calendar runs out of steam after September!
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A few members & friends attended the open air concert by the City of Plymouth Orchestra at Chaplins Superstore in Plymouth on 23 July.

The National Association of Laryngectomee Clubs 2011