The Voice of PLC (June - July, 2011)


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The Voice of PLC (June - July, 2011)

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The Voice of PLC (June - July, 2011)

  1. 1. 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: Website: FOREWORD BY THE SECRETARY GREETINGS! Written by Geoffrey N. ReadDear Friends & Supporters!We had a very successful Club Meeting in June with fourguests in attendance; three from the Speak Easy Club inCornwall and one of the Vice-presidents from the NationalAssociation of Laryngectomee Clubs (NALC) who hadtravelled down from Sunderland.I’ve lost my voice for a while and am awaiting yet another M 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!dilation prior to having a new valve fitted. I can hear youcheering from here...I’m not deaf you know! But noeating, drinking or talking for ten weeks or so is beginningto become a nuisance! H APPY Birthday to Martin FISHER for his birthday on th Saturday, 25 June 1011. All the best Martin!It was for this reason that I was unable to reporteverything at our June 2011 Meeting but I think I’ve B EST Wishes to the Secretary of PLC, Geoff READ, for th his birthday on Sunday, 10 July 2011.covered most things in this newsletter. If not... then I’msure one of you’ll let me know! M 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!Best WishesGeoff And finally... EDITORIAL COMMENTI NTERNET Links. If you’re 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 toanother site for more information on that particular topic.Put your cursor over the link, hold down the Control (Ctrl) H APPY Anniversary to Christine and Jim REID for th Sunday, 10 July 2011. Congratulations to you both!Key and click! Ed. 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.
  2. 2. PLC MEETINGST HIS is just a reminder that in accordnace with our Constitution, the Secretary does record and produceminutes of all meetings held by the PLC. However, theseare not generally distributed and the salient points arealways included in these newsletters. That said, shouldany member wish to have sight of any of our minutesthen please contact Geoff. THE PLC JUNE 2011 MEETINGO UR June 2011 Meeting (pictures on the right) took place at the Mustard Tree Cancer Support Center at Derriford thHospital on Monday, 6 June 2011 at 11 a.m. There were 13individuals in attendance including four guests: Bert CULLING. Bert is one of the NALC Vice- presidents 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 The above photographs are all by courtesy of Ron WILLS, to the PLC to help the Club with its postage costs. Chair of the Speak Easy Club from Cornwall. Taken either This was extremely welcome and Ted passed on at the Mustard Tree or at the Jack Rabbit afterwards. the thanks of all members of PLC. Thank you, Ron!Geoff and Jean hosted all four at the Jack Rabbit Inn You can view the slide show at: Photobucket.comafterwards. Other members were too busy to attend!C 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 itemshave had to be shelved! The more items that theCommitee can resolve means less time spent on them atour normal monthly Club Meetings! F 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 spendingC OMMITTEE Member. Organising our meetings and social events is taking up more and more of Geoff’s timeand he does have other commitments! Members agreed 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 fortherefore that the Committee should have a fourth member: why we need further funds? Please speak to Geoff!An Entertainments Member to organise the Club’s socialdiary. Although Members were in favour not onevolunteered! Interested? Then do please contact Geoff! F UNDRAISING for Macmillan Cancer Support. Geoff was in the process of setting up meetings with South & West of England Macmillan Involvement Coordinator andE XETER Head & Neck Cancer Support Group. Geoff is in contact with Mac M. who’s setting up a new supportclub at Exeter and it was thought that it might be a good the North Devon, Plymouth & Tamar Valley Fundraising Office of Macmillan Cancer Support at Launceston to ascertain how best PLC can best get involved withidea if our two clubs became affiliated. However, our Macmillan. Unfortunately Geoff’s voice has let him downdiscussions have had to be postponed until such time as and discussion will continue just as soon as the miracleGeoff has regained his voice... soon we hope! workers restore it! Contact The Voice of PLC Newsletter Editor Geoff Read on (01752) 563800 or 0774581928 (text only) or email:, or go to PLC website at 2
  3. 3. M ACMILLAN Grant. A question was raised at the May 2011 Meeting asking what restrictions hadbeen placed on the expenditure of the Macmillan Grant R 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 veryand whether the funds were to be considered as kindly donated their prizes to the next month’s raffle!Restricted or Unrestricted funding. In other words, did Maggie won some chocolates when she was out of thePLC have any degree of flexibility on how the grant could room! As the winner, Eileen will be running the raffle atbe expended? PLC has since received official advice: the July 2011 Meeting.We do require groups to spend the grant based on thebreakdown confirmed in the Award Letter.recognised that circumstances often change However it is and there is a S 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 asprocedure for requesting an amendment to the grant they are now until after our AGM in September 2011. Ourbreakdown. current subs are: Joining Fee. A mandatory one-time payment of £5 perG UEST Speakers. A further question was raised (by a visitor to our Club) concerning the legality of payingfor gifts or fees to Guest Speakers by PLC from money Monthly. Member. A voluntary subscription of £1 per monthawarded by a charitable institution such as Macmillan. per attending Member.We have since received the following advice:It’s fine for the group to spend the grant award on speaker THE PLC FORECAST OF EVENTSfees or a small gift as long as this is what part of the grant J thwas awarded for. If you were awarded funds for ULY 2011 PLC Meeting. Monday, 4 July 2011: Thesomething else and have now decided to attribute these PLC Club Meeting starts at the Mustard Tree Cancerfunds to speaker fees / gifts, you will need to fill out a Support Centre at 11 a.m. After the meeting there’ll be agrant amendment request form. Talk by Ulla ROHRBECK from Heimomed UK. A st UGUST 2011 PLC Meeting. Monday, 1 August 2011:M EMBERSHIP Status. Our current Membership Status is shown in the table below: The PLC Club Meeting starts at the Mustard Tree Cancer Support Centre at 11 a.m.. After the meeting POSTAL EMAIL TOTAL there’ll be a Talk by Miles WILLIAMS from Platon Medical.Confirmed Members: 9 9 18 S th EPTEMBER 2011. Sunday, 4 September 2011: This willProspective Members: 2 1 3 be held at the North Lakes Hotel, Penrith in Cumbria onConfirmed Friends: 5 21 26 and will cost £15 per head. A response is needed by Friday,TOTALS: 16 31 47 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.C ONTACT Details. Of the 16 Members and Friends who are not on email Geoff has only telephone numbers for S th EPTEMBER 2011. Monday, 5 September 2011: Thefour! This makes it difficult if ever we need to get in touch PLC Club Annual General Meeting starts at the Mustardwith them urgently for the cancellation of a meeting for Tree Cancer Support Centre at 11 a.m. followed by Lunchinstance. Geoff sent out a Form with the previous Newsletter at the Jack Rabbit. After the meeting there’ll be a Talk byfor all those Members who are not on line to complete giving Charles HANDLEY from Countrywide Supplies Ltd.their full contact details... including their telephone numbers. S thThank you to the one reply received so far! EPTEMBER 2011. Wednesday, 14 September2011: The Speak Easy Club in Cornwall has made a provisionalR eview of Club Membership. It has been noticed that several Laryngectomy Clubs throughout the UK havebroadened their membership to include Head & Neck Cancer 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 bypatients rather than just Laryngectomees. We have train or bus at Truro. Geoff will require names of thoseascertained from the Secretary of the National Association of wishing to attend by the time of the July 2011 Meeting.Laryngectomee Clubs (NALC) that this is all perfectlyacceptable to them. Our Members agreed to this in principleat their April 2011 Meeting. Any actual change would firstneed an amendment to our Club’s Constitution and this could C ALENDAR of Events. A copy of the Club’s Calendar of Events, including Future Entertainments for the next 12months or so, is available on our Club’s website. Pleasebe done at our AGM in September 2011. Before considering keep yourselves up-to-date by taking an occasional peek!further action however it might be prudent to take advicefrom our medical specialists. It is hoped to discuss thismatter at our July 2011 Meeting. C 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!N OTES Made by the Late Professor David MOREBY. David was a laryngectomee and a prominent memberof Plymouth society. His notes concerning his illness are E 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 discussedavailable for viewing on application to Geoff. again if anyone shows interest. Just contact Geoff! Contact The Voice of PLC Newsletter Editor Geoff Read on (01752) 563800 or 0774581928 (text only) or email:, or go to PLC website at 3
  4. 4. J ACK Rabbit Inn. Geoff has cancelled all bookings due to the lack of support by Club Members. 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.T ALK on Non-Patients: Partners & Carers. At the May 2011 Meeting it was proposed that it would be good ifour Club could have a talk from non-patients such as partners The contact telephone number is 0800 158 2267. This company agreed to include Laryngeal Cancer cover in the policy.and / or carers so as to give a different perspective on whatthey have had to experience. No decision was made and weare looking for someone to organise this? Interested? Please AN ARTICLE IN THE LOS ANGELES TIMEScontact Geoff! By ITZHAK BROOK THE NATIONAL ASSOCIATION OF LARYNGECTOMEE CLUBS (NALC) M Y TURN: Touched By Another Humans Touch. A doctor diagnosed with cancer discovers the power a hug can have on an ailing patient.A th NNUAL General Meeting: Monday, 16 May 2011. Itzhak BROOK is a paediatric infectious disease physician at Geoff READ represented the PLC at the meeting held Georgetown The Hallam Conference Centre in London. This picture I was deeply shaken to learn I had hypo-pharyngeal cancer.shows Geoff (left) meeting other delegates. As a physician, I had access to my hospitals laboratory results, so I took a shortcut: Rather than wait for my surgeon to call me, I looked for my name in my hospitals 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 thePhotograph courtesy of Ian HONEYSETT, CLAN Magazine pathology laboratory and walked into my internists office toView the slideshow at break the news to him. He slowly rose out of his chair without uttering a word and gave me a big, supportive hug.A NNUAL Report for 2010. Geoff has one copy of the Annual Report and if any Member wishes to have sightof it they should contact Geoff. Surprisingly this wasn’t sent 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 appreciatedto us by email nor is it available on the NALC website! my pain and distress, and who shared my personal tragedy. ItC LAN Magazine. Copies of the June 2011 edition have been received and issued to PLC Members. If you’re aPLC Member and you already receive a copy direct from 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 wasNALC then do please let Geoff know so that he can give not alone in my future struggles, that he would be beside meyour copy to someone else! It’s good to see that our Club all the way.received a mention here and there! I had never been hugged by a medical caregiver. Nor had I given a hug to a patient: I always believed in maintaining aT RAVEL Insurance for Laryngectomees. Good advice can be obtained from: professional distance between them and me. Yet at that moment, I learned there may be situations in medical  The Mustard Tree Cancer Support Centre leaflet practice where the power of a hug eclipses everything else  The Macmillan Cancer Support Website one can offer. In the realm of modern medicine, where machines and testsImportant: The companies listed in the above outlets have often substitute for close patient-physician contact, thisbeen recommended by at least one person with cancer for fundamental art is often forgotten. Even a simple pat on thegiving them a reasonable deal on their travel insurance. shoulder or a warm handshake conveys genuine care andInclusion of a company or broker below does not mean that concern.the or PLC recommends them. Contact The Voice of PLC Newsletter Editor Geoff Read on (01752) 563800 or 0774581928 (text only) or email:, or go to PLC website at 4
  5. 5. In fact, there is scientific evidence that human touch can AN IMPORTANT NOTICEgenerate oxytocin and endorphins, which ameliorate painand create a feeling of well-being.Unfortunately, I had to undergo a total laryngectomy to havemy cancer removed. The period after my surgery was very B 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 aboutphysically and emotionally trying, as I battled numerous the Transport Service that the Red Cross offer to in-medical problems and also struggled to regain my ability to patients in certain circumstances. Apparently, all you havespeak. What eased those difficult months was the knowledge to do is to telephone them on (01752) 788791 and tellthat my otolaryngologists door was always open to me and them times that you need to be at the hospital for yourthat he would act immediately to assist me in any way he operation and they come and pick you up. This apparentlycould. His dedication, emotional support, sincere care and also only applies to the Plymouth area. I could findfriendliness helped me overcome many of the difficulties and nothing on the internet about this but will test it out asproblems I encountered. They were indispensable on my soon as I know the date for my next op! Watch this space!road to recovery. Submitted by Geoffrey N. READI sometimes went to his office several times a week... oftenjust to talk with him and tell him how I was doing. I always feltwelcomed. He greeted me with a big smile and hugged me NEWS & CURRENT EVENTSevery time I left. This simple act created a bond of intimacybetween us and made me feel that I had a friend. DISCLAIMER Please note that the views and opinions expressed in this section areMy personal experiences changed my attitude toward my not necessarily those held by the PLC Committee nor its Members.own patients. I am less concerned now about maintaining aprofessional distance or avoiding a caring touch or hug whenappropriate. I have learned that such gestures cansignificantly deepen the healing relationship between patient C th ITY Ahead of the Game on Healthcare Reforms. This article was published in the Plymouth Herald on Tuesday, 14 June 2011:and physician. PLYMOUTH is already "ahead of the game" on NHS reforms,As a laryngectomee, I have found that speaking is often says a city doctor as a report of recommendations wasdifficult and challenging. So I am fortunate to have discovered released.that the "power of a hug" can convey so much more than the The Future Forum yesterday unveiled its findings afterspoken word. carrying out consultations in the progress of the controversialItzhak BROOK is the author of the 2010 book "My Voice: A Physicians Health & Social Care Bill which would see the plannedPersonal Experience With Throat Cancer." abolition of primary care trusts (PCT).He is also a registered Friend of PLC! The wide-ranging report called for a requirement forMore at; consortia to consult other health professionals duringcontact Brook at commissioning. It also said plans to increase competition inMy Turn is a forum for readers to recount an experience related to the NHS must be scaled or fitness. Submissions should be 500 words or fewer, are subject In Plymouth, Sentinel... which is run and owned by 44 GPto editing and condensation and become property of The Times. practices... was last year chosen as the body to take over theEmail Read more at citys health budget after the planned abolition of the PCTs. Dr. John PICKARD, who is the Chair of the local medical HUMOUR IN MEDICINE committee, said: "Sentinel was started from grass roots GPs and will emerge as the commissioning group for Plymouth.T WO Doctors.Best friends graduated from medical school at the same time and Sentinels commissioning board is already very inclusive... we have two consultants and medical directors as well as a chiefdecided that, in spite of two different specialties, they would open a nurse and a lay member.practice together to share office space and personnel.Dr. Smith was the psychiatrist and Dr. Jones was the proctologist; they To read the full article click on this link.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". C OUNTRYWIDE Supplies Ltd. Geoff has received a hard copy of the latest 2011 Product Catalogue listing all available Laryngectomy and Tracheostomy PrescriptionThis was also not acceptable, so they again changed the sign."Catatonics and High Colonics"; again, no go! Supplies. You can obtain a copy by telephoning 0800-783-Next, they tried "Manic Depressives and Anal Retentives"; 1659 or by visiting down again. Alternatively contact Geoff.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. H OSPITAL Pharmacy Opens. This article was published th in the Plymouth Herald on Saturday, 4 June 2011."Loons and Moons"; forget it. A NEW outpatient pharmacy has opened at DerrifordAlmost at their wits end, the docs finally came up with: Hospital. The service is next to the Outpatient Department,"Dr. Smith and Dr. Jones - Odds and Ends". formerly the site of the Charity Coffee Shop run by the WRVS,Everyone loved it! which is finalising with the hospital a new location on site.Submitted by Geoffrey N. READ Contact The Voice of PLC Newsletter Editor Geoff Read on (01752) 563800 or 0774581928 (text only) or email:, or go to PLC website at 5
  6. 6. The pharmacy, run by Lloydspharmacy, will eventually Free NaturalReader 10.0provide prescriptions to all patients attending outpatient Microsoft Voice included. All functions to read aloud any text in your computer.clinics. Change speed and speaker.Gemma TAMBLYN, Senior Pharmacy Technician, said: "It will Mini-board to read any text in other applications.make the collecting of prescriptions easier for our patients What is NaturalReader?attending outpatient appointments. NaturalReader is a Text-to-Speech software"The location on Level-6 was chosen specifically to allow the with natural sounding voices. This easy to usepharmacy to have external access and for it to be located at software can convert any written text such as MS Word, Webpage, PDF files, and Emails intothe heart of the outpatient department." spoken words. NaturalReader can alsoThe service does not replace the Hospital Pharmacy on Level- convert any written text into audio files such5, which will still be responsible for dispensing all in-patient as MP3 or WAV for your CD player or iPod.and clinical trials prescriptions. What Can NaturalReader do for you?There will be a phased roll-out for outpatients to collect their  Allows students to listen to class notes, text books. etc.prescription from the new pharmacy.  Facilitates education  Avoids eyestrain from too much readingAfter full roll-out the Level-5 pharmacy will remain open for  Learn English or other languagesthe other medications.  Make proofreading effectiveThe new pharmacy is open Monday to Friday, 9 a.m. to 6 p.m.  And so much more!but is not available for use by the public for GP prescriptions. For further information please visit: naturalreaders.comT 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 Welcome to!and the organisations and groups working with older people. We’ve just released beta version! Visit the Project News pageThe network meets approximately six times a year with for important information about this minor update and how you caninvited speakers and guests from public and private sector obtain it.organisations. The network is used for information sharing, The ModelTalker System is a revolutionary speech synthesis softwarepromoting best practice and updates on the latest changes package designed to benefit people who are losing or who have already lost their ability to speak. It allows people with Amyotrophicaffecting the sector and services. Lateral Sclerosis (ALS) or other conditions to use a synthetic version of thThe next meeting is taking place on Thursday, 30 June at: their own voice for communication, or to choose a voice best suited to represent them.Plymouth Guild, The system uses representative segments of recorded speech (eitherErnest English House, from an individual who is losing the ability to speak or from a personBuckwell Street chosen by someone who can no longer speak) to create a uniquePlymouth synthetic voice. This synthetic voice is virtually unlimited, meaning it can be used to express almost anything, including words and phrasesfrom 2 p.m. – 4 p.m. not previously recorded. The voice "banking" process is guided by the ModelTalker VoiceThe main topic for discussion is Mental Health Services for Recorder, our computer-assisted voice recording software. Once thisOlder People. It will include changes in service provision for process is finished, an individual will be able to create a synthetic voiceolder people and the increasing demand for support in the by uploading their recordings to a voice generation site. The voice,community. The meeting will also explore concerns over the when combined with our ModelTalker Text-to-Speech system, can then be used with any communication system that is Speech Applicationpresent services on offer and how those in need can access Programming Interface (SAPI) 5.0 compatible.them. Representatives from Mental Health Services for older Currently, the complete ModelTalker System is in the early stages ofpeople have been invited to this meeting to discuss the commercial development and we’re actively seeking beta testers.needs, gaps and present situation of service provision. For further information please visit: modeltalker.comThere will also be a general update from the members of the Submitted by Geoffrey N. READnetwork and the work of groups across the city.If you would like to find out more about the network, attend The Plymouth Laryngectomy Club (PLC)the meeting or discuss joining please contact Carole HICKLING is a Charitable Support Group. PLC aims to offer support and care toat or telephone (01752) the laryngectomees and their carers and families.221933. For more information please click on this link. PLC also encourages understanding and support by the public. And, just for those who may not be aware...Many thanks Laryngectomy is the removal of the larynx and separation of the airwayPTSC Team from the mouth, nose and oesophagus. The Laryngectomee breaths through the neck, a stoma. It is done in the cases of laryngeal cancer.S PEECH Synthesis Software Packages. We all know what it can be like to lose your voice when you need itmost! As Secretary of the PLC it falls upon me to make verbal 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.reports about this and that at our monthly meetings so as to If you’re a Laryngectomee you would be most welcome to comekeep all our Members up-to-date. I recently lost my voice along on your own or with your partner and / or Carer.and either had to have someone read out my reports orshelve them for a later date. In future I may use one of the Come join us!following software packages which are free to download: 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:, or go to PLC website at 6