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The Windpipers, Blackpool @ A ? @ A A ? ? A A A @ THE NATIONAL ASSOCIATION O@F LARYNGECTOMEE CLUBS NEWSLETTER Issue No. 123 December 2012 Inside this issue Emergency, Emergency . 4 I Love My Stoma . 7 Skegness Charity Bike Ride . 5 News from the Clubs . 8 New NALC Website . 6 Larry Support on Facebook . 2 Plus lots of other news, thoughts, Boom in Voice-Lifts . 3 National Cancer Support . 6 poems, letters and views @ President’s Christmas Message @ It is that time of year again when I sit down to write my FOOD FOR THOUGHT Christmas message. It seems to me a @ Don’t you find Christmas comes around so quickly once you’re retired? (If very short time ago that in 2005 I sat you’re not yet retired, you’re probably still paying for last Christmas!) This year, the family has new Christmas jumpers so we’re ready for anything! down to write my first President’s We’re sure that many clubs will have had their Christmas meals and Christmas message and I am now hope they went well. Talking of food – the Editor and wife have recently writing my last Christmas message as returned from a three week cruise of the Mediterranean (don’t worry – it I am standing down as president in wasn’t on expenses!) so we have enjoyed a considerable amount of fine May. Before you all start cheering, you dining. One passenger we met had been on a 74 day cruise and admitted to putting on are not getting rid of me. I will still be over three stone in weight. He said he had had to buy new trousers to cope! We also very involved with NALC. May I take heard the familiar sound of a Servox and discovered a laryngectomee, John, with his wife, this opportunity to say a heartfelt thank Shirley. You can see the photo inside. you to Vivien, Kerry, the officers and all our members and friends for their New NALC Website support over the time I have been On our return, there was a visit to NALC HQ for the launch of the new, improved NALC President. It only remains for me to website. From now on you can download copies of CLAN and email them to friends, family wish everyone a very Happy and enquirers as you wish. They ran special computing classes on the cruise and many Christmas and above all a Healthy people enjoyed getting to grips with the new technology for the first time. If you haven’t yet New Year. cruised the internet, why not give it a go? Many libraries now advertise classes for beginners. Our local library allows you to borrow books and read them on your computer. @ Ivor Smith President So we hope you enjoy this issue of CLAN and have a wonderful Christmas and New Year. And don’t forget to send us news of how your club celebrated! Christmas Crackers Ian Honeysett (Editor) At a Propane Filling Station: For all items for Clan : Ian Honeysett (Editor), 53 Combe Road, Farncombe, Godalming, Surrey GU7 3SL “Tank heaven for little grills.” email: [email protected] For all other matters (including requests to be added to or removed from the mailing list): At a Radiator Repair Shop: Vivien Reed (Association Secretary), NALC, Lower Ground Floor, 152 Buckingham Palace Road , “Best place in town London SW1W 9TR Tel: 020 7730 8585 Fax: 020 7730 8584 Email: [email protected] Website: www.laryngectomy.org.uk to take a leak.” The views expressed by the contributors are not necessarily those of the Editor or NALC. Great care has Still Talking NSW Newsletter been taken to ensure accuracy but NALC cannot accept responsibility for errors or omissions. Deadline for issue No. 124: 1 February 2013 @ @ ? A @ A A By a Thread Laryngectomy Support on Facebook: Suzanne McEvoy met Alex McGuiggan at A unique way to give support the Laryngectomee Information Day in Belfast in October and mentioned her When I started a Laryngectomy Support method of securing a stoma button to group on Facebook in 2009, I did not the wearer’s clothing as twice her realise the powerful impact the group husband had managed to push his would have. The Laryngectomy Support button down into his trachea – and once group started in September 2009. Having down into his lungs. She said hers was had some experience with managing not an original idea but she found it in a online support groups, I thought Facebook book and then refined it. The idea is to would be an ideal location for an secure the thread from the stoma button international Support Group. The goal of to a piece of material rather than directly the group is to get people affected by laryngectomy together; to provide support to a safety pin. The photo explains all. other useful resources. This way of to each other and exchange ideas and conversing in the setting of Facebook has tips. taken laryngectomy support to a new I started by inviting a few clinician level. colleagues (people I knew could spread One thing that surprised me about the the word to their patients). The first few group is the mix of membership. There is months went by and… nothing much a proportion of young members of the happened. Then, slowly I started getting group who have a parent or grandparent requests to join the group. This support with a laryngectomy. It is great to see that group has now grown to 165 members these young people who have concern for and is currently the biggest support group their parent or grandparent can get free for Laryngectomees on Facebook. We get support in such a setting. There is also a Hear, hear? about two requests per week from other proportion of the membership who are people who want to join. The group is truly Doctor: “What seems to be the friends of persons who had a international, with members from all over trouble?” laryngectomy (a group of people who the world. Patient: “Doctor, I keep getting the have traditionally not received much in the feeling that nobody can We have a few renowned members, for way of support or information). Of course hear what I say.” example Dr Itzak Brook, who has written a the largest proportion of the group Doctor: “What seems to be the book on laryngectomy; and regularly consists of people who have had a trouble?” gives talks at international conferences laryngectomy, or their partners. It is and meetings. We have members who refreshing to see such a variety of ages give regular updates on their condition and reasons for joining the group. It is a and members who just want to read the reminder of how laryngectomy affects not Goodbye Sandy tips that other members give. We have only the person but also everyone who Sadly we said goodbye to a dear friend people posting on the ways the knows that person; and that support and and fellow 'lary', (Alexander) 'Sandy' laryngectomy changed their lives, education is needed on many different Robson whose funeral was held at positives and negatives. levels. I think this is truly an inclusive Loughborough Crematorium on Tuesday, group; something that results great 31st July. 'Sandy' joined our unique 'club' Familiar Faces discussions on the forum. in 2005 and certainly lived life to the full Visiting the group is like visiting family. You for the next seven years. see familiar faces, and you get to hear 300 Target His wishes were that people donated to what happened in other members’ My aim for the group is to continue ‘20-20 vision of VOICE’ Cancer Appeal journeys through life. You get to offer excellent support to our members and to instead of ‘wasting money on flowers’ and advice and support; and when you need increase membership to 300 people by his generous wishes have raised in an answer, you can just pose a question the end of 2013. I believe that the support excess of £655 for the appeal. 'Sandy' to the group and you will get a multitude group will become a new platform for wanted to help those of us that are to of responses back. Sometimes topics are people affected by laryngectomy all over come, for he knew that the vital very serious, and other times about less the world. We will be able to support equipment we are aiming to buy will serious, more general topics. Often members and their local efforts with possibly save future head and neck members bring humour to the group. international drive and in a very special cancer sufferers from losing their voice. Through the postings you truly get to know way. Thank you to all the group members the personalities of the group members. for your willingness to share your ideas We send our sincerest thanks and and tips with the world, and to provide condolences to his wife Phyllis and his Facebook has a unique way of allowing amazing support to each other. Welcome children Mandy, Annette and Martin. members to view each other’s comments to all future members, the sky is the limit! Thank you, Sandy, may you rest in peace and reply in a conversational way. my friend. Regularly, a topic gets discussed in detail, Louise Pothier Phil Johnson with people adding links to YouTube and [email protected] @ ? @ @ 2A A A Boom in 'Voice-Lifts' Proton Beam This article was published in the Daily Mail Diagram: It involves injecting the folds of Therapy on Monday, 17th September 2012 by Fiona the vocal cords with fat removed from the Proton therapy is a type of radiotherapy Macrae stomach to bulk them up and boost the that stays focused on the tumour shape strength of the voice.
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