The Plymouth Laryngectomy Club (PLC)

A Charitable Support Group for Plymouth Cancer Laryngectomees

The Voice of PLC

June - July 2011
Address: c/o 80 Warleigh Avenue, PLYMOUTH, PL2 1DH, Devon, UK Mobile: 07745819828 (text only) Email: saudigeoff@yahoo.co.uk Website: http://plymouthlc.webs.com

FOREWORD BY THE SECRETARY

Written by Geoffrey N. Read Dear Friends & Supporters! We had a very successful Club Meeting in June with four guests in attendance; three from the Speak Easy Club in Cornwall and one of the Vice-presidents from the National Association of Laryngectomee Clubs (NALC) who had travelled down from Sunderland. Ive lost my voice for a while and am awaiting yet another dilation prior to having a new valve fitted. I can hear you cheering from here...Im not deaf you know! But no eating, drinking or talking for ten weeks or so is beginning to become a nuisance! It was for this reason that I was unable to report everything at our June 2011 Meeting but I think Ive covered most things in this newsletter. If not... then Im sure one of youll let me know! Best Wishes Geoff

GREETINGS!

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ANY Happy Returns to Mr. Peter STOCK for his th Birthday on Friday, 24 June 2011. Peter is a new Member of PLC. Welcome Peter and Happy Birthday! APPY Birthday to Martin FISHER for his birthday on th Saturday, 25 June 1011. All the best Martin!

EST Wishes to the Secretary of PLC, Geoff READ, for th his birthday on Sunday, 10 July 2011.

ANY Happy Returns to Ms. Rosmarie STEPHENS for th her Birthday on Saturday, 16 July 2011. Rosemarie is a full Member of PLC. Happy Birthday Rosemarie! And finally...

EDITORIAL COMMENT

NTERNET Links. If youre reading this on-line and come across words with blue lettering that are underlined, then you can click on these links and be taken directly to another site for more information on that particular topic. Put your cursor over the link, hold down the Control (Ctrl) Key and click! Ed.

APPY Anniversary to Christine and Jim REID for th Sunday, 10 July 2011. Congratulations to you both!

The Plymouth Laryngectomy Club (PLC) is an Affiliated Member of: The National Association of Laryngectomy Clubs (NALC) In Association with Macmillan Cancer Support Registered Charity Number: 273635 Our Funder: Macmillan Cancer Support A Member of The Plymouth Third Sector Consortium (PTSC) Patrons & Medical Advisors : Mr. W.M. BRIDGER, FRCS - Consultant ENT Surgeon, Mr. Tass MALIK, BSc FRCS (Gen), FRCS (ORL H&N) - Consultant Otolaryngologist, Head & Neck / Thyroid Surgeon, Derriford Hospital, Plymouth.

PLC MEETINGS

HIS is just a reminder that in accordnace with our Constitution, the Secretary does record and produce minutes of all meetings held by the PLC. However, these are not generally distributed and the salient points are always included in these newsletters. That said, should any member wish to have sight of any of our minutes then please contact Geoff.

THE PLC JUNE 2011 MEETING

UR June 2011 Meeting (pictures on the right) took place at the Mustard Tree Cancer Support Center at Derriford th Hospital on Monday, 6 June 2011 at 11 a.m. There were 13 individuals in attendance including four guests: Bert CULLING. Bert is one of the NALC Vicepresidents who had travelled down from Sunderland to give a Talk about NALC and its ongoing Educational Project. Ted presented Bert with a Thank You Card and a set of Plymouth Lapel Badges as a small token from PLC. Ron & Rose WILLS, and Val FROST. Ron is Chair of the Speak Easy Club in Cornwall. It was a delight to host these three from over the River Tamar as our two clubs are beginning to build up quite a good rapport in trying to help each other. Val has given Geoff some invaluable information regarding Goody Bags... a project whereby new Laryngectommes receive a bag of useful goodies. The Speak Easy Club had recently donated 100 to the PLC to help the Club with its postage costs. This was extremely welcome and Ted passed on the thanks of all members of PLC.

Geoff and Jean hosted all four at the Jack Rabbit Inn afterwards. Other members were too busy to attend!

The above photographs are all by courtesy of Ron WILLS, Chair of the Speak Easy Club from Cornwall. Taken either at the Mustard Tree or at the Jack Rabbit afterwards. Thank you, Ron! You can view the slide show at: Photobucket.com

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OMMITTEE Meetings. We are well overdue a meeting but this is because Geoff is currently unable to talk! Hopefully Geoff will recover his voice soon as a lot of items have had to be shelved! The more items that the Commitee can resolve means less time spent on them at our normal monthly Club Meetings! OMMITTEE Member. Organising our meetings and social events is taking up more and more of Geoffs time and he does have other commitments! Members agreed therefore that the Committee should have a fourth member: An Entertainments Member to organise the Clubs social diary. Although Members were in favour not one volunteered! Interested? Then do please contact Geoff!

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UNDING. PLC has been fortunate in receiving a grant from MacMillan Cancer Support and a donation from the Speak Easy Club. However, we need to firm up our spending policy and assess whether our Club needs to bid for further funding. Does any Member have any suggestions on how we should be using our funds or do you have any suggestions for why we need further funds? Please speak to Geoff! UNDRAISING for Macmillan Cancer Support. Geoff was in the process of setting up meetings with South & West of England Macmillan Involvement Coordinator and the North Devon, Plymouth & Tamar Valley Fundraising Office of Macmillan Cancer Support at Launceston to ascertain how best PLC can best get involved with Macmillan. Unfortunately Geoffs voice has let him down and discussion will continue just as soon as the miracle workers restore it!

XETER Head & Neck Cancer Support Group. Geoff is in contact with Mac M. whos setting up a new support club at Exeter and it was thought that it might be a good idea if our two clubs became affiliated. However, our discussions have had to be postponed until such time as Geoff has regained his voice... soon we hope!

Contact The Voice of PLC Newsletter Editor Geoff Read on (01752) 563800 or 0774581928 (text only) or email: saudigeoff@yahoo.co.uk, or go to PLC website at http://plymouthlc.webs.com

ACMILLAN Grant. A question was raised at the May 2011 Meeting asking what restrictions had been placed on the expenditure of the Macmillan Grant and whether the funds were to be considered as Restricted or Unrestricted funding. In other words, did PLC have any degree of flexibility on how the grant could be expended? PLC has since received official advice: We do require groups to spend the grant breakdown confirmed in the Award Letter. recognised that circumstances often change procedure for requesting an amendment breakdown. based on the However it is and there is a to the grant

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AFFLE. 11.50 was raised on the Raffle. Eileen won one the first prize and proceeded to win the next prize but put it back! Bert and Rose also won but both very kindly donated their prizes to the next months raffle! Maggie won some chocolates when she was out of the room! As the winner, Eileen will be running the raffle at the July 2011 Meeting. UBSCRIPTIONS. We took a comparison between the Speak Easy Club and PLC. Members then agreed at the May 2010 Meeting that our subscriptions should remain as they are now until after our AGM in September 2011. Our current subs are: Joining Fee. Monthly. A mandatory one-time payment of 5 per Member. A voluntary subscription of 1 per month per attending Member.

UEST Speakers. A further question was raised (by a visitor to our Club) concerning the legality of paying for gifts or fees to Guest Speakers by PLC from money awarded by a charitable institution such as Macmillan. We have since received the following advice: Its fine for the group to spend the grant award on speaker fees or a small gift as long as this is what part of the grant was awarded for. If you were awarded funds for something else and have now decided to attribute these funds to speaker fees / gifts, you will need to fill out a grant amendment request form.

THE PLC FORECAST OF EVENTS

ULY 2011 PLC Meeting. Monday, 4 July 2011: The PLC Club Meeting starts at the Mustard Tree Cancer Support Centre at 11 a.m. After the meeting therell be a Talk by Ulla ROHRBECK from Heimomed UK.

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EMBERSHIP Status. Our current Membership Status is shown in the table below: POSTAL 9 2 5 16 EMAIL 9 1 21 31 TOTAL 18 3 26 47

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UGUST 2011 PLC Meeting. Monday, 1 August 2011: The PLC Club Meeting starts at the Mustard Tree Cancer Support Centre at 11 a.m.. After the meeting therell be a Talk by Miles WILLIAMS from Platon Medical. EPTEMBER 2011. Sunday, 4 September 2011: This will be held at the North Lakes Hotel, Penrith in Cumbria on and will cost 15 per head. A response is needed by Friday, th 5 August 2011 so if you wish to attend this function do please let Geoff know by the time of our July 2010 Meeting. EPTEMBER 2011. Monday, 5 September 2011: The PLC Club Annual General Meeting starts at the Mustard Tree Cancer Support Centre at 11 a.m. followed by Lunch at the Jack Rabbit. After the meeting therell be a Talk by Charles HANDLEY from Countrywide Supplies Ltd. EPTEMBER 2011. Wednesday, 14 September2011: The Speak Easy Club in Cornwall has made a provisional booking at Devoran for a soup and sandwich lunch, if the PLC are able to accept their invitation for a joint meeting. The Speak Easy Club could arrange to meet anyone coming by train or bus at Truro. Geoff will require names of those wishing to attend by the time of the July 2011 Meeting.
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Confirmed Members: Prospective Members: Confirmed Friends: TOTALS:

ONTACT Details. Of the 16 Members and Friends who are not on email Geoff has only telephone numbers for four! This makes it difficult if ever we need to get in touch with them urgently for the cancellation of a meeting for instance. Geoff sent out a Form with the previous Newsletter for all those Members who are not on line to complete giving their full contact details... including their telephone numbers. Thank you to the one reply received so far!

eview of Club Membership. It has been noticed that several Laryngectomy Clubs throughout the UK have broadened their membership to include Head & Neck Cancer patients rather than just Laryngectomees. We have ascertained from the Secretary of the National Association of Laryngectomee Clubs (NALC) that this is all perfectly acceptable to them. Our Members agreed to this in principle at their April 2011 Meeting. Any actual change would first need an amendment to our Clubs Constitution and this could be done at our AGM in September 2011. Before considering further action however it might be prudent to take advice from our medical specialists. It is hoped to discuss this matter at our July 2011 Meeting.

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ALENDAR of Events. A copy of the Clubs Calendar of Events, including Future Entertainments for the next 12months or so, is available on our Clubs website. Please keep yourselves up-to-date by taking an occasional peek! OACH Trip. A trip was proposed at the May 2011 Meeting but there were no suggestions about dates, themes or destination! Any thoughts? Please contact Geoff! DEN Project. The consensus at the May 2011 Meeting was that most Members had already visited the Eden Project at one time or another but this will be discussed again if anyone shows interest. Just contact Geoff! 3

OTES Made by the Late Professor David MOREBY. David was a laryngectomee and a prominent member of Plymouth society. His notes concerning his illness are available for viewing on application to Geoff.

Contact The Voice of PLC Newsletter Editor Geoff Read on (01752) 563800 or 0774581928 (text only) or email: saudigeoff@yahoo.co.uk, or go to PLC website at http://plymouthlc.webs.com

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ACK Rabbit Inn. Geoff has cancelled all bookings due to the lack of support by Club Members.

ALK on Non-Patients: Partners & Carers. At the May 2011 Meeting it was proposed that it would be good if our Club could have a talk from non-patients such as partners and / or carers so as to give a different perspective on what they have had to experience. No decision was made and we are looking for someone to organise this? Interested? Please contact Geoff!

Julia recently advised us that one of her patients asked her to let PLC Members know that he received a good deal on his travel insurance from Barclays Premier Life Travel Insurance. The contact telephone number is 0800 158 2267. This company agreed to include Laryngeal Cancer cover in the policy.

AN ARTICLE IN THE LOS ANGELES TIMES By ITZHAK BROOK

THE NATIONAL ASSOCIATION OF LARYNGECTOMEE CLUBS (NALC)

Y TURN: Touched By Another Human's Touch. A doctor diagnosed with cancer discovers the power a hug can have on an ailing patient. Itzhak BROOK is a paediatric infectious disease physician at Georgetown University. I was deeply shaken to learn I had hypo-pharyngeal cancer. As a physician, I had access to my hospital's laboratory results, so I took a shortcut: Rather than wait for my surgeon to call me, I looked for my name in my hospital's pathology laboratory log book. After my name, the log book stated in no uncertain terms: "mildly differentiated squamous cell carcinoma." I could not believe my eyes. Was this possible? Could it be a mistake? In spite of the hopeful questions that permeated my mind, I knew it was not a mistake: Right here, in front of me, in black and white... my own death sentence. Still, to be convinced that the diagnosis was real, I had to view the biopsy specimens under the microscope myself... and there it was. In that very instant, my whole world changed. I had always had a sense of invulnerability. Now I was left with uncertainty about my prognosis and future. I was in a state of desperation and disbelief when I left the pathology laboratory and walked into my internist's office to break the news to him. He slowly rose out of his chair without uttering a word and gave me a big, supportive hug. It felt so good to know that he deeply cared for me beyond our professional relationship. His embrace moved me... made me feel that I was surrounded by those who truly appreciated my pain and distress, and who shared my personal tragedy. It meant much more at that moment than a thousand words of support or elaborate explanations. It was the power of a caring, human touch. I knew that I was not alone in my future struggles, that he would be beside me all the way. I had never been hugged by a medical caregiver. Nor had I given a hug to a patient: I always believed in maintaining a professional distance between them and me. Yet at that moment, I learned there may be situations in medical practice where the power of a hug eclipses everything else one can offer. In the realm of modern medicine, where machines and tests often substitute for close patient-physician contact, this fundamental art is often forgotten. Even a simple pat on the shoulder or a warm handshake conveys genuine care and concern.

NNUAL General Meeting: Monday, 16 May 2011. Geoff READ represented the PLC at the meeting held at The Hallam Conference Centre in London. This picture shows Geoff (left) meeting other delegates.

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Photograph courtesy of Ian HONEYSETT, CLAN Magazine

View the slideshow at Photobucket.com.

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NNUAL Report for 2010. Geoff has one copy of the Annual Report and if any Member wishes to have sight of it they should contact Geoff. Surprisingly this wasnt sent to us by email nor is it available on the NALC website! LAN Magazine. Copies of the June 2011 edition have been received and issued to PLC Members. If youre a PLC Member and you already receive a copy direct from NALC then do please let Geoff know so that he can give your copy to someone else! Its good to see that our Club received a mention here and there!

RAVEL Insurance for Laryngectomees. Good advice can be obtained from: The Mustard Tree Cancer Support Centre leaflet The Macmillan Cancer Support Website

Important: The companies listed in the above outlets have been recommended by at least one person with cancer for giving them a reasonable deal on their travel insurance. Inclusion of a company or broker below does not mean that the or PLC recommends them.

Contact The Voice of PLC Newsletter Editor Geoff Read on (01752) 563800 or 0774581928 (text only) or email: saudigeoff@yahoo.co.uk, or go to PLC website at http://plymouthlc.webs.com

In fact, there is scientific evidence that human touch can generate oxytocin and endorphins, which ameliorate pain and create a feeling of well-being. Unfortunately, I had to undergo a total laryngectomy to have my cancer removed. The period after my surgery was very physically and emotionally trying, as I battled numerous medical problems and also struggled to regain my ability to speak. What eased those difficult months was the knowledge that my otolaryngologist's door was always open to me and that he would act immediately to assist me in any way he could. His dedication, emotional support, sincere care and friendliness helped me overcome many of the difficulties and problems I encountered. They were indispensable on my road to recovery. I sometimes went to his office several times a week... often just to talk with him and tell him how I was doing. I always felt welcomed. He greeted me with a big smile and hugged me every time I left. This simple act created a bond of intimacy between us and made me feel that I had a friend. My personal experiences changed my attitude toward my own patients. I am less concerned now about maintaining a professional distance or avoiding a caring touch or hug when appropriate. I have learned that such gestures can significantly deepen the healing relationship between patient and physician. As a laryngectomee, I have found that speaking is often difficult and challenging. So I am fortunate to have discovered that the "power of a hug" can convey so much more than the spoken word.
Itzhak BROOK is the author of the 2010 book "My Voice: A Physician's Personal Experience With Throat Cancer." He is also a registered Friend of PLC! More at dribrook.blogspot.com; contact Brook at ib6@georgetown.edu. My Turn is a forum for readers to recount an experience related to health or fitness. Submissions should be 500 words or fewer, are subject to editing and condensation and become property of The Times. Email health@latimes.com. Read more at latimes.com/myturn.

AN IMPORTANT NOTICE

RITISH Red Cross in Plymouth. Whilst undergoing a Pre-operation Medical Assessment at Erme Ward the other day, the Sister-in-Charge asked if I had heard about the Transport Service that the Red Cross offer to inpatients in certain circumstances. Apparently, all you have to do is to telephone them on (01752) 788791 and tell them times that you need to be at the hospital for your operation and they come and pick you up. This apparently also only applies to the Plymouth area. I could find nothing on the internet about this but will test it out as soon as I know the date for my next op! Watch this space! Submitted by Geoffrey N. READ

NEWS & CURRENT EVENTS

DISCLAIMER Please note that the views and opinions expressed in this section are not necessarily those held by the PLC Committee nor its Members.

ITY 'Ahead of the Game' on Healthcare Reforms. This article was published in the Plymouth Herald on Tuesday, th 14 June 2011: PLYMOUTH is already "ahead of the game" on NHS reforms, says a city doctor as a report of recommendations was released. The Future Forum yesterday unveiled its findings after carrying out consultations in the progress of the controversial Health & Social Care Bill which would see the planned abolition of primary care trusts (PCT). The wide-ranging report called for a requirement for consortia to consult other health professionals during commissioning. It also said plans to increase competition in the NHS must be scaled back. In Plymouth, Sentinel... which is run and owned by 44 GP practices... was last year chosen as the body to take over the city's health budget after the planned abolition of the PCTs. Dr. John PICKARD, who is the Chair of the local medical committee, said: "Sentinel was started from grass roots GPs and will emerge as the commissioning group for Plymouth. Sentinel's commissioning board is already very inclusive... we have two consultants and medical directors as well as a chief nurse and a lay member. To read the full article click on this link.

HUMOUR IN MEDICINE

WO Doctors.

Best friends graduated from medical school at the same time and decided that, in spite of two different specialties, they would open a practice together to share office space and personnel. Dr. Smith was the psychiatrist and Dr. Jones was the proctologist; they put up a sign reading: "Dr. Smith and Dr. Jones: Hysterias and Posteriors". The town council was livid and insisted they change it. So, the doctors changed it to read: "Schizoids and Haemorrhoids". This was also not acceptable, so they again changed the sign. "Catatonics and High Colonics"; again, no go! Next, they tried "Manic Depressives and Anal Retentives"; thumbs down again. Then came "Minds and Behinds"; still no good. Another attempt resulted in "Lost Souls and Butt Holes"; unacceptable again! So they tried "Analysis and Anal Cysts"; not a chance. "Nuts and Butts"; no way. "Freaks and Cheeks"; still no good. "Loons and Moons"; forget it. Almost at their wits end, the docs finally came up with: "Dr. Smith and Dr. Jones - Odds and Ends". Everyone loved it!

OUNTRYWIDE Supplies Ltd. Geoff has received a hard copy of the latest 2011 Product Catalogue listing all available Laryngectomy and Tracheostomy Prescription Supplies. You can obtain a copy by telephoning 0800-7831659 or by visiting www.countrywidesupplies.co.uk/stoma. Alternatively contact Geoff.

OSPITAL Pharmacy Opens. This article was published th in the Plymouth Herald on Saturday, 4 June 2011.

A NEW outpatient pharmacy has opened at Derriford Hospital. The service is next to the Outpatient Department, formerly the site of the Charity Coffee Shop run by the WRVS, which is finalising with the hospital a new location on site. 5

Submitted by Geoffrey N. READ

Contact The Voice of PLC Newsletter Editor Geoff Read on (01752) 563800 or 0774581928 (text only) or email: saudigeoff@yahoo.co.uk, or go to PLC website at http://plymouthlc.webs.com

The pharmacy, run by Lloydspharmacy, will eventually provide prescriptions to all patients attending outpatient clinics. Gemma TAMBLYN, Senior Pharmacy Technician, said: "It will make the collecting of prescriptions easier for our patients attending outpatient appointments. "The location on Level-6 was chosen specifically to allow the pharmacy to have external access and for it to be located at the heart of the outpatient department." The service does not replace the Hospital Pharmacy on Level5, which will still be responsible for dispensing all in-patient and clinical trials prescriptions. There will be a phased roll-out for outpatients to collect their prescription from the new pharmacy. After full roll-out the Level-5 pharmacy will remain open for the other medications. The new pharmacy is open Monday to Friday, 9 a.m. to 6 p.m. but is not available for use by the public for GP prescriptions.

Free NaturalReader 10.0

Microsoft Voice included. All functions to read aloud any text in your computer. Change speed and speaker. Mini-board to read any text in other applications. What is NaturalReader? NaturalReader is a Text-to-Speech software with natural sounding voices. This easy to use software can convert any written text such as MS Word, Webpage, PDF files, and Emails into spoken words. NaturalReader can also convert any written text into audio files such as MP3 or WAV for your CD player or iPod. What Can NaturalReader do for you? Allows students to listen to class notes, text books. etc. Facilitates education Avoids eyestrain from too much reading Learn English or other languages Make proofreading effective And so much more! For further information please visit: naturalreaders.com

HE OLDER Persons Voluntary & Community Network (OPVCN) has been refreshed and is open for membership. The network covers a range of issues affecting older persons and the organisations and groups working with older people. The network meets approximately six times a year with invited speakers and guests from public and private sector organisations. The network is used for information sharing, promoting best practice and updates on the latest changes affecting the sector and services. th The next meeting is taking place on Thursday, 30 June at: Plymouth Guild, Ernest English House, Buckwell Street Plymouth from 2 p.m. 4 p.m. The main topic for discussion is Mental Health Services for Older People. It will include changes in service provision for older people and the increasing demand for support in the community. The meeting will also explore concerns over the present services on offer and how those in need can access them. Representatives from Mental Health Services for older people have been invited to this meeting to discuss the needs, gaps and present situation of service provision. There will also be a general update from the members of the network and the work of groups across the city. If you would like to find out more about the network, attend the meeting or discuss joining please contact Carole HICKLING at befriendingpcbc@btconnect.com or telephone (01752) 221933. For more information please click on this link. Many thanks PTSC Team

Welcome to ModelTalker.com!

Weve just released beta version 1.0.0.46! Visit the Project News page for important information about this minor update and how you can obtain it. The ModelTalker System is a revolutionary speech synthesis software package designed to benefit people who are losing or who have already lost their ability to speak. It allows people with Amyotrophic Lateral Sclerosis (ALS) or other conditions to use a synthetic version of their own voice for communication, or to choose a voice best suited to represent them. The system uses representative segments of recorded speech (either from an individual who is losing the ability to speak or from a person chosen by someone who can no longer speak) to create a unique synthetic voice. This synthetic voice is virtually unlimited, meaning it can be used to express almost anything, including words and phrases not previously recorded. The voice "banking" process is guided by the ModelTalker Voice Recorder, our computer-assisted voice recording software. Once this process is finished, an individual will be able to create a synthetic voice by uploading their recordings to a voice generation site. The voice, when combined with our ModelTalker Text-to-Speech system, can then be used with any communication system that is Speech Application Programming Interface (SAPI) 5.0 compatible. Currently, the complete ModelTalker System is in the early stages of commercial development and were actively seeking beta testers. For further information please visit: modeltalker.com

Submitted by Geoffrey N. READ

The Plymouth Laryngectomy Club (PLC)

is a Charitable Support Group. PLC aims to offer support and care to the laryngectomees and their carers and families. PLC also encourages understanding and support by the public. And, just for those who may not be aware... Laryngectomy is the removal of the larynx and separation of the airway from the mouth, nose and oesophagus. The Laryngectomee breaths through the neck, a stoma. It is done in the cases of laryngeal cancer. However, many laryngeal cancer cases are now treated only with radiation and chemotherapy, or other laser procedures, and Laryngectomy is performed when those treatments fail to conserve the larynx. If youre a Laryngectomee you would be most welcome to come along on your own or with your partner and / or Carer.

PEECH Synthesis Software Packages. We all know what it can be like to lose your voice when you need it most! As Secretary of the PLC it falls upon me to make verbal reports about this and that at our monthly meetings so as to keep all our Members up-to-date. I recently lost my voice and either had to have someone read out my reports or shelve them for a later date. In future I may use one of the following software packages which are free to download:

Come join us!

Our Members and Friends meet on the first Monday of every month. Do please see our website for further details.

Contact The Voice of PLC Newsletter Editor Geoff Read on (01752) 563800 or 0774581928 (text only) or email: saudigeoff@yahoo.co.uk, or go to PLC website at http://plymouthlc.webs.com