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e f f d e f f f d d e THE NATIONAL ASSOCIATION OFe LARYNGECTOMEE CLUBS NEWSLETTER Issue No. 147f December 2018 Inside this issue Recent Research ...... 4 Amazing Recovery ...... 9 International Head & Neck 2018 . . 5 News from the Clubs ...... 12

O2 Roof Walk ...... 6

President’s Christmas Message . . . 2 Plus lots of other news, thoughts, NALC Safety & Awareness ...... 2 Sir Michael Morpurgo ...... 8 poems, letters and views #

To make a donation please complete and return this form to: NALC Suite 16, Tempo House, 15 Falcon Road, Battersea, London SW11 2PJ o I would like to make a one off payment 2018: A SIGNIFICANT YEAR! and enclose a cheque payable to NALC. 2018 has been a signiﬁcant year in many respects. It is the ﬁnal o I would like to make a one off payment year when NALC will receive funding from Macmillan Cancer of £ by card. Support. So fundraising will be more vital than ever. So if you or ...... your club have thought of inventive ways to raise money, why (A facility to do this will soon be available on the website) not tell us about them? We are always keen to hear from clubs. And to see your photos of course! As we’ve said before, we Name on card ...... only hear from a few clubs on a regular basis. If you produce a newsletter then why not email a copy to CLAN?

War Horse Start date Expiry date Another packed issue this Christmas with some inspiring stories including that of four Security code (3 digits on back of card) year-old Jenna Smith and the somewhat older, Sir Michael Morpurgo, author of War Horse. Mr and Mrs Editor had the privilege of seeing the play a few years ago and it o If you would like to make a regular was truly one of the most impressive they have ever seen. It ranked alongside the donation, please set up a standing order Editor’s puppet pantomimes that dominated their children’s formative years. The ﬁnal through your bank account to: one was written in rhyming couplets (oh yes it was) which included the (surely) National Association of Laryngectomee immortal lines: “Hello everybody, and welcome to our panto, My name is Simple Clubs Simon and my favourite drink is Fanto!” A Happy Christmas and New Year to you all! Sort Code: 20-46-60 Account No: 03376745

Ian Honeysett (Editor) If you are a UK Tax payer, may NALC Gift Aid your donation? Yes o No o I understand that I must pay an amount of Income Tax/Capital Gains Tax at least equal to the amount. For all items for Clan: Ian Honeysett (Editor), 53 Combe Road, Farncombe, Godalming, Surrey GU7 3SL NALC reclaim on my donation in the email: [email protected] appropriate tax year. For all other matters (including requests to be added to or removed from the mailing list): Name ......

Vivien Reed (Association Secretary), NALC, Suite 16, Tempo House, 15 Falcon Road, Battersea,f London SW11 2PJ Tel: 020 7730 8585 Website: www.laryngectomy.org.uk e Address ......

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. Tel. No. …………………………...... ………… Deadline for issue No. 148: 1 February 2019 d Email …………………………...... ………………. e Signature …………….………………………………... f e e f f Clan Dec 2018_to proof 27/11/2018 08:37 Page 2

NALC Safety and Awareness Campaign NALCe President’s Since the inception of our Safety Campaign earlier this year to raise awareness of the Christmas e needs for laryngectomees in emergency situations we have produced a ‘Neckbreather

Message Emergency Care’ leaflet which explains in detail how to administer mouth to stoma resuscitation and what to look for to identify a neck breather, we have also written a I write this messagee covering letter to accompany the leaflet. Key points in the letter are: in early November, l It is important to recognise that a patient is a neck-breather and that a stoma may not after an early e be immediately obvious. encounter with l There is a variety of stoma covers, eg: cravats and jewellery. You should also look for ® snow in Scotland, alert items, eg: wrist bands, car stickers and wallet cards. and now the clocks have gone back l It is essential that resuscitation is carried out through the stoma. and the supermarket shelves have l The only airway to the lungs is through a stoma. suddenly filled with Christmas items. l Laryngectomees have a very diminished sense of smell. 2018, like every year, has provided l They have limited and varied means of communication. highs and lows. NALC received a final l There is also a danger and vulnerability around water. grant from Macmillan Cancer Support, The leaflet ‘Neckbreather Emergency Care’ can be found on the NALC website: ending an association of more than www.laryngectomy.org.uk and is available to download. 40 years. However the laryngectomee community has responded For further information please contact Tony Hudson via the NALC office.

magnificently to our appeals for Expanding the Campaign support. I want to thank everyone who Although this campaign is primarily for the emergency services who are usually the first has made a donation or organised a point of contact in these situations we could in the future think about expanding the fundraising event and I hope you will campaign further afield where it might be considered beneficial. continue to support us. Malcolm Babb, our NALC President, asked me to lead the campaign and I have been One part of my work that I really eenjoy working closely with my local ambulance service the South Central Ambulance Service, is meeting laryngectomees and their (SCAS), who have been very supportive in their help and guidance and they cover a large carers around the country. I learn so area consisting of Buckinghamshire, Oxfordshire, Berkshire and Hampshire and employ much from hearing of their 3300 members of staff. experiences and so it proved recently I have visited Huddersfield and First Responder Scheme Wakefield hospitals. SCAS also operate a Community First In 1976, Norman Wesley Brooks wrote: Responder scheme (as do other ambulance services) which involves Christmas is forever, volunteers trained to a high standard not for just one day, e of first aid and life-saving skills by the for loving, sharing, giving, ambulance service who can respond are not to put away in their local towns/villages if needed. like bells and lights and tinsel, It was suggested by SCAS that if we in some box upon a shelf. could produce a short five minute DVD South Central Ambulance Service Community The good you do for others explaining emergency aid for e First Responder training class showing the is good you do yourself. laryngectomees then there would be a NALC awareness DVD These words sum up for me the spirit possibility that they could incorporate it of the work of NALC and members of into their training programmes, Malcolm with his IT skills produced a DVD and it has its affiliated support groups. been piloted on training courses for Community First Responders with some excellent feedback and in the future will be incorporated into their training courses. I send Christmas Greetings to all our readers and wish you a very happy Furthermore it is intended that our leaflet and letter will be displayed on all SCAS notice New Year. boards and an electronic version appearing as an article in one of their monthly staff newsletters. Malcolme Babb, President of NALC If (or perhaps I should say when) this pilot of the project is shown to be a success then we will extend it to other emergency services and to other areas of the country. I already expect to have introductions to the Police and Fire and Rescue services within the area to expand our campaign and also to the local Clinical Commissioning Groups, I also intend, using my involvement, to take the campaign to the voluntary sector with the

Vivien and Kerry St John Ambulance and the Red Cross. at the NALC Head Ofﬁce, If any Club or Members have local contacts with the emergency services or the voluntary

wish all the readers of Clan ﬁrst aid sectors then I would be interested in hearing from you and you can contact me a Merry Christmas and via the NALC ofﬁce. Happy New Year! d Tony Hudson, NALC Vice President 2 e e e f f f Clan Dec 2018_to proof 27/11/2018 08:37 Page 3

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MyVoice laryngectomy community events are held across the UK

‘MyVoice’ events are a great opportunity to get to know other people living with a laryngectomy in your area.

These are “your” events where you can discuss different topics and share experiences with others over a cup of tea.

You can also meet your local Atos Medical representative who will be happy to answer any questions specific to your needs.

To find out if there is a laryngectomy event in your area please email [email protected] or call 0115 784 1897. Clan Dec 2018_to proof 27/11/2018 08:37 Page 4

Recent Research TRACTion Cancer One of the leading researchers into head Support and neck cancer is Professor Hisham TRACTion Cancer Support successfully Mehanna, of Birmingham University and attained Charitable Status in March 2018 Queen Elizabeth Hospital. He has been and focuses on supporting patients with Chair of the NCRI’s Head and Neck Group cancers of the head and neck, thyroid, for many years and NALC has provided a gastric, larynx etc. Many people with patient contribution to many of his studies. these disease become socially isolated as Ethel Culling was the patient they have difficulty speaking and eating. representative on his PET-NECK trial and We have developed a cook book which is Here is a sample recipe for Roast Beef its results have changed clinical practice. unique in that meals can be easily Bearnaise and Ratatouille: served with The use of a PET-CT scan can reduce the prepared to look and taste like the real Creamy Garlic and Cheese Mash and a Red number of unnecessary neck dissection thing (for example roast beef) but are easy Wine Reduction using 500g topside of beef. operations and the lifelong functional to swallow as they are moosealine in Preheat oven to 160°C. Place beef in an problems resulting from such surgery. texture. They are cooked in food moulds oven proof dish with enough water to come roughly up the beef. Place a piece I have been a member of the steering which the charity can also provide free of of greaseproof paper and then cover with committee of one of his more recent charge to give the appearance. That way tinfoil. (The greaseproof paper stops the studies, De-ESCALaTE. This has looked at the family can all eat the same dinner and foil sticking to the meat and water stops the use of cetuximab in the treatment of in this way social inclusion is addressed. the meat drying out.) some oropharyngeal tumours instead of We are also providing massage therapy the current standard care which uses for patients specifically around areas Roast for two hours. cisplatin. The use of cisplatin is where radiation therapy has been Allow to cool. Blend, thicken and place in problematic because of its toxicity and the introduced to improve range of movement the mould. permanent effect it can have on and swallowing. The charity is currently Before blending a little bit of horseradish, swallowing function. Finding an based in Glasgow but we plan to expand dried tarragon or onion powder could be alternative treatment is very desirable. throughout Scotland. added to your beef for more flavour. Professor Mehanna shared some results Further information can be found Serve topped with Bearnaise sauce, from the study at the recent congress of on our website ratatouille, creamy garlic mash and a red the European Society of Medical www.tractioncancersupport.org wine reduction. Oncology. The results showed cetuximab or by calling Liz on 07711 001 502 Liz Grant, (Chairperson, is inferior to cisplatin in that survival or [email protected] TRACTion Cancer Support) outcomes are worse and also no benefit was seen regarding side-effects of the NALC Medical Advisor and Patron, Professor Martin Birchall, has treatment. Cisplatin remains the best asked if we can help with the project below. treatment option. De-ESCALaTE has been a success in providing definitive If you are unable to email, please contact NALC head office and give your details via information about the comparative letter or telephone for either Vivien or Kerry to forward to Dr Henry Lancashire. effectiveness of treatment choices. Would you like to Volunteer for Research into Speaking, Swallowing and Coughing? We are recruiting participants, who have had their larynx removed, to take part in a study investigating speaking, swallowing, and coughing. We are looking at the activity of the chest and chin muscles when people speak, swallow, and cough. We are doing this so we can develop a robotic larynx, to replace the voicebox after laryngectomy. The study would involve:

l Three visits to either University of Bristol or University College London.

l Approximately two hour of your time per visit.

l Having six sticky pads placed on your rib cage and two under your chin.

l You will be asked to do a number of tasks including, coughing, swallowing water and food, speaking some nonsense phrases, and walking around a room.

l While you are coughing you will wear a mask or adhesive housing over your stoma Professor Hisham Mehanna to record when you are breathing in and out, which you can remove at any time.

NALC is already committed to supporting If you are interested in taking part please contact Dr Henry Lancashire at the some of Professor Mehanna’s current and Department of Medical Physics and Biomedical Engineering, University College

proposed studies. Hopefully the outcomes London, on [email protected] for further details. will be as clear and beneﬁcial to patients All data will be collected and stored in accordance with the Data Protection Act 1998. as the two highlighted above. All data collectedd shall be anonymised. Malcolm Babb 4 e e e f f f Clan Dec 2018_to proof 27/11/2018 08:37 Page 5

International Head and Neck Cancer Conference 2018, Nottingham

I attended the first NALC had a display conference organised by stand for the two days Chris Curtis and The and several members Swallows in Liverpool in of the Chesterfield 2016. The event has Club were also in grown considerably now attendance. Everyone with one day for clinicians enjoyed the speakers and another for patients. and exhibits, as well There were speakers as the chance to share from the USA and India, experiences with other and from Australia via a video link. We heard contributions from patients and carers. clinicians describing examples of good practice and patients One new member sharing their experiences. said that a few months Trevor and Sally Hutson ago they could not manning NALCs stand Taking one example, Richard Simcock, a consultant oncologist have imagined attending such an event but were very glad they from Brighton, spoke about communication between doctor and had. Joining a support group and meeting others empowered patient. His presentation was informative and entertaining and them for dealing with the rest of their cancer journey. received very well. I think it worth sharing one suggestion he made about four key questions a patient could ask when Next year’s conference will be held in Brighton and I recommend discussing proposed treatment with their consultant: it to any head and neck cancer patient or carer. What are the benefits? Further information can be viewed at this link: What are the risks? www.facebook.com/pg/PatientCarerConference/about What are the alternatives? What if I decline treatment? Malcolm Babb

Your Views Needed – Chas Hodges Voice Recognition Chas Hodges, one half of the musical duo Chas & Dave, has died at the age of 74. Systems The duo's Twitter account said he recently The past couple of years have seen a received treatment for oesophageal massive expansion in the use of voice cancer but died peacefully in his sleep in recognition systems. Now such systems, the early hours. Known for their rock and like Amazon Alexa, are routinely being cockney style, Chas & Dave enjoyed the used in the home for a variety of height of their fame in the 1970s and purposes. I have not tried to see if my 1980s with hits such as Rabbit and electrolarynx speech will work with these Snooker Loopy. They also performed four systems and doubt I will do so in the near FA Cup final songs with Tottenham Action Radiotherapy future. Hotspur FC. The statement on Chas & Dave's Twitter page read: "It is with Radiotherapy plays a vital part in the The situation is rather different when an tremendous sadness that we announce treatment of many cancer patients, energy company or a bank requires a the passing of our very own Chas whether with the aim of curing the patient customer to make contact using voice Hodges." It said the pianist and vocalist or providing palliative care. Yet only 5% of recognition. A couple of years ago I had died from organ failure. Born in north the budget of the NHS for cancer is spent received new credit card and was London in 1943, Chas's career began as a on radiotherapy. advised that to activate it I needed to call session musician in the 1950s and 1960s, There are problems with the current a specific number. On doing so I was working with producer Joe Meek and provision in terms of capacity to treat a confronted by a voice recognition system stars including Jerry Lee Lewis, Gene growing number of patients and the and despite many attempts could not get Vincent and Ritchie Blackmore. In 1966, as ability to deliver the best modern it to recognise and accept my EL speech. a member of Cliff Bennett & the Rebel treatments. Equality legislation requires companies to Rousers, he appeared alongside the Action Radiotherapy is a charity which has provide alternatives for customers with Beatles on their final British tour. Chas the aim of improving the delivery of disabilities to facilitate effective went on to team up with guitarist Dave radiotherapy across the UK. It has communication. NALC is seeking to hear Peacock in the 1970s. Chas & Dave's launched a petition in support of the of your experiences, have you ever had debut album One Fing 'n' Anuvver, service, which so far has attracted only a

problems with voice recognition systems? featuring Chas on lead vocals, was few thousand. How did you overcome the problem? released in 1975.

Please contact us and share your story This article was published by BBC News Please visit www.actionradiotherapy.org using our contact details on the front 22nd September 2018 and and, if you agree with its aims, sign the page. in The Voice Newsletterd petition. e e e 5 f f f

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Clan Dec 2018_to proof 27/11/2018 08:38 Page 6 stoma. the in tube a have ALWAYS will They

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NALC Safety and

O2 Roof Walk Because of the curvature of roof the On 14 July, in the midst of the summer initial part of the climb is quite steep but Awareness Campaign heatwave, a group from Claryon, the we were able to use the guide rope to Chelmsford Laryngectomy Club, walked haul ourselves up. The climb became across the roof of the O2 building in London. progressively more gentle until we reached the summit, where we were Emergency One of our laryngectomees, Jackie Jacob, glad to have refreshments, take photos Resuscitation had become acutely aware of the difﬁculty and admire the view. The descent of communication during her post-surgery began gently but the final section was recovery period. She decided to do really difficult as we had to hang on to something about it, and the sponsored the guide rope to control our descent. p walk over the O2 was her inspiration. We were grateful that our harnesses Jackie did the groundwork and most of were attached to the safety rail at all

the paperwork was covered by two head times! and neck nurses, Vanessa and Clare, This challenging but enjoyable event working in their spare time. raised over £5800, which will be used to For Laryngectomy There were twenty-six people in the group equip both ourN Broomﬁeld Hospital head and Tracheostomy Patients comprising six laryngectomees, a and neck wards with simple tablet consultant, a speech therapist, several computers with a ‘type to talk’ program m H nurses and a number of wives, husbands, installed, as well as electrolarynxes and National Association of Fax: 020 7730 8584 Laryngectomee partners and friends. miscellaneous ward equipment to make Clubs

The weather was very hot but the gentle the initial recovery period less stressful. breeze helped minimise overheating in Norman Kildea Emergency Resuscitation For Laryngectomy and Tracheostomy Patients

TEP S In the event of an emergency, follow 1 CHECK THE NECK these steps CAREFULLY when trying G Lie the victim on his back. to revive a laryngectomy patient. G Remove clothing from his neck, including the stoma cover, but DO NOT remove any tubes that are in place.

TEP S CLEAR THE 2 AIRWAY G Wipe any mucus from the stoma or tube. G If it’s a laryngeal stoma and not a tracheostomy, the person may have a silicone speaking valve showing A normal voice and (see inset). This is meant to be The mechanism for voice there and it is important it is not mechanism before and breathing after dislodged, as this itself can be a laryngectomy laryngectomy medical emergency as, if dislodged, there is a direct route for fluid to the lungs. G Make sure the stoma is clear before proceeding. IF THE CHEST DOES NOT RISE It may be because of: TEP S CHECK FOR A. A poor seal over the stoma. BREATHING 3 B. A blocked stoma - try to clear any tube that may be present. Only as a last G Listen and feel for air escaping resort remove the tube. DO NOT waste time by replacing the tube. from the stoma. TRY AGAIN. G Watch for movement of the chest and abdomen. If there is no regular breathing proceed to steps 4 and 5. IF THE VICTIM HAD AN ACCIDENT IN WHICH WATER HAS TEP S POSITION FOR ENTERED THE LUNGS 4 RESUSCITATION A. Lie the victim over your knee, G With the victim on his back and his making sure that his stoma is head tilted backwards, kneel at his lower than his lungs, OR ensure side. It will help to put a support such as a rolled up coat under his lungs are above stoma, using a shoulders to ensure that the neck pillow, etc. is fully extended. Water will then flow through G Place two fingers each side of the the stoma. nose and your thumb under the chin. B. When the lungs are clear, G Close your fingers to prevent any proceed with steps 1-5. escape of air from the nose and mouth.

E ST P RESUSCITATION 5 National G Take a deep breath and place Association of your widely open mouth over the Laryngectomee stoma forming a seal. Clubs G Blow into the stoma until the victim’s chest rises. Head Office: G Release your fingers between Lower Ground Floor, 152 Buckingham Palace Road, London SW1W 9TR each blow. Tel: 020 7730 8585 Fax: 020 7730 8584

Perky Turkey Christmas Soup Method 1. Heat the oil in a large pan, add the onion and fry for 5 minutes Ingredients or so, stirring every now and then until it starts to soften. l 1 tbsp olive oil 2. To make the soup, add the red pepper, ground coriander, chilli l 1 large onion halved and sliced into thin strips and rice and stir round the pan for about a minute. Pour in the l 1 red pepper, seeded and sliced into thin strips hot stock, stir in the turkey and chickpeas and season well.

l 2 tsp ground coriander Bring to the boil, cover and simmer for 8-10 minutes, until the vegetables and rice are tender. Stir in the coriander or parsley l ¼ - ½ tsp chilli ﬂakes and it’s ready. (The soup may now be cooled and frozen for up l 3 tbsp basmati rice or long grain rice to 1 month.) t l 1½ ltr hot turkey or chicken stock 3. Tip: For extra ﬂavour l 250g 9oz turkey meat, cut into thin strips (leg meat will have

4. Sizzle some chopped bacon with the onions. Pour in a splash the most ﬂavour) of dry sherry before adding the stock. Any canned pulses can

l 410g can chickpea, drained and rinsed replace the chickpeas. Throw in some chopped sprouts – l a handful of fresh coriander or ﬂat leaf parsley, roughly cooked or raw, it doesn’t matter. For extra zing, squeeze in a chopped (optional) d little lemon juice at the end. e e Fa 6 e o f f f Clan Dec 2018_to proof 27/11/2018 08:38 Page 7

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have fallen off the perch younger than I Sir Michael Morpurgo am now. I’ve been a lucky old parrot.” Sir Michael Morpurgo (74), the children’s Beaming Time author, has had radiotherapy for cancer of the larynx, he revealed yesterday. He said Speaking of his treatment, he spoke of his he was treated successfully at The Royal “beaming time, locked inside my plastic Marsden hospital in London following the mask, down in the wonderful radiology “unwelcome diagnosis”. He added: “Last department at the Marsden”. Sir Michael year, I was diagnosed with an early added: “Just trust in the doctors and the cancer of the larynx and my perspective nurses, lie there, forget the whirring and on so much changed. Suddenly the clunking of the machine, those life- disease became central to my life at prolonging rays beaming into you… thank home, and to my work. It had to be God for Marie Curie.” The former teacher confronted, dealt with, both surgically and said he thought of his children, psychologically. Now, with excellent grandchildren and great-grandchild, as prospects for a full recovery, with my voice well as the youngsters he had taught or and grandchildren, and our great- ﬁnding new strength, I have time to look had read his books. He added: “They back at the whole experience, at how were all the hope I needed, lying in that grandchild, and how their lives might be in fortunate I have been.” hospital being healed. It wasn’t only the this ever-changing world; and to other radiotherapy doing the healing. It was the children who I have taught, who read my The War Horse author pulled out of memories of those children too. books, who write to me often, who I meet. All several literary festivals last year, including Henley in Oxfordshire and Budleigh “They helped me through, helped me to gave me great cause for hope, for rejoicing.” Salterton in Devon during September. keep hoping, keep believing. They still do, This article was published by every day. At the time, his publicist said: “Due to a Daily Mail Reporter May 2018 ongoing problems with his voice and “My thoughts turned often to our children and is included in The Voice Newsletter treatment he has been receiving, Michael Morpurgo has been advised he must cancel speaking engagements for the time-being. He hates to let people down but must do this to give himself the best chance of recovery.” The former Children’s Laureate opened up about his treatment in the Spectator magazine. In a diary entry he said: “By 74 it is easy to feel that you have seen it all, done it all, that nothing much surprises you anymore. Even an unwelcome medical diagnosis does not surprise you. You cope because you have to. You know it’s what happens to us all. You’ve been lucky all these years. Now it’s your turn, stuff happens. That’s life, you

tell yourself, or the other thing. Friends and

family much younger have been ill and suffered long; some d 8 e e e f f f Clan Dec 2018_to proof 27/11/2018 08:38 Page 9

Amazing Recovery from Neck Tumour Is She Smiling? A four-year-old girl who was born with a Mona Lisa’s quizzical smile has puzzled malignant tumour the size of a tennis ball generations of art scholars. But, according in her neck is set to start school, having to doctors, it might not be a smile at all… made an ‘amazing recovery’. Jenna Smith and is instead a symptom of an has been through months of underactive thyroid. The condition causes chemotherapy and was not able to speak muscle weakness that could explain the until she was nearly three-years-old due curious slant of her mouth and lips. The to having a tracheostomy tube. The American researchers say her yellowish tumour, which was so large it had skin, puffy neck and apparently receding flattened her windpipe, was discovered hairline may also be signs of an when her mother, Lisa Smith, 42, was 32 underactive thyroid, which causes weeks pregnant. tiredness and weight gain. The presumed model for Leonardo Da Vinci’s masterpiece, the noblewoman Lisa Gherardini, may have had thyroid problems because of a lack of iodine in her diet in Renaissance Tuscany. It had previously been suggested that she had Bell’s Palsy, a type of facial paralysis. Others have claimed Mona Lisa was pregnant, or a man, or in imminent danger of having a heart attack. Dr Mandeep Mehra of Brigham & Women’s Hospital in Boston said: “The enigma of Jenna Smith in recovery the Mona Lisa can be resolved by a Jenna Smith is set to start school simple medical diagnosis of a Doctors feared that Jenna would not be (Newcastle NHS Foundation Trust) hypothyroidism-related illness. In many able to breathe when she was delivered, ways, it is the allure of the imperfections of meaning she needed an operation to which would require chemotherapy. In February 2017 she had the tracheostomy disease that give this masterpiece its insert a tracheostomy. However, Mrs mysterious reality and charm.” Smith’s waters broke earlier than expected tube removed, enabling her to speak and the mother, from Penrith, Cumbria, properly, and now remains in remission, had an emergency caesarean section on the Royal Victoria Infirmary said, calling it Saturday, 24 March 2014. an ‘amazing recovery’. Describing her daughter’s treatment as a Everyone Pulled Together ‘real rollercoaster ride’, Mrs Smith said Speaking about the birth, Steven Powell, a Jenna is now looking forward to starting consultant surgeon at the Newcastle’s reception class at Stainton Primary School Royal Victoria Infirmary, said: “As soon as in Penrith. She said: “Looking back on we received the call, everyone pulled those early days of Jenna’s life, it was together and we had a team of horrendous. Now, thanks to everyone at obstetricians, anaesthetists, surgeons, the RVI and the Great North Children’s nurses… everyone we needed to make Hospital, we have a beautiful, happy, sure that we could carry out critical healthy little girl. She is very excited about surgery to Jenna’s airways before starting school with her friends from delivering her safely.” nursery. It’s another big milestone in her The researchers also ruled out the idea Soon after the birth, Jenna had to be taken short but eventful life.” that the uneven smile could be explained by hardened arteries. But they admitted it to the Great North Children’s Hospital to This article was published by the might simply be due to Leonardo’s have the tumour removed, and it was Shropshire Star August 2018 experiments with sfumato, a technique discovered it was a malignant mass and in The Voice Newsletter which saw him blur tones and colours. Their theory is published in the journal Re-Cycled Mayo Clinic Proceedings. Painted I accidentally left my electrolarynx in my pocket and it went thru a whole cycle in my front between 1503 and Leonardo’s death in loader. I carefully took it apart as much as I could and poured the water out, dried it France in 1519, the Mona Lisa has been

gently with the hair dryer, then let it sit in the sun most of the day. Put the same dried out on permanent display at the Louvre in rechargeable battery, that also went thru the wash, back in and it works just ﬁne! The Paris since 1797.

sound is crisper and cleaner after the washing. Ha ha! When I took it apart, I saw a lot of This article was published by Victoria Allen electronic wires and really delicate looking stuff inside. If it needs cleaning in the future, I for Health & Wellness in the Daily Mail think I will just use a soft cloth and warm water. Jimd Harte, WebWhispers 6 September 2018 e e 9e f f f Clan Dec 2018_to proof 27/11/2018 08:38 Page 10

Mental Health and Getting On With Life Mark Radcliffe Head and Neck Keith Middleton from the Sunderland Club Radio 2’s Folk Show presenter, Mark had his laryngectomy in June 2009. Since Radcliffe, stunned listeners when he told Cancer Patients then he has suffered with other head and them he has cancer and will be taking In the wider community there has been neck conditions, eventually leading to a time off to get treatment. He said he will much discussion about the availability of spinal fusion in 2013. be stopping work while he is treated for mental health services and the time it “cancerous tongue and lymph node This has left Keith unable to communicate takes to secure treatment. For head and issues". He told listeners during his show other than with pen and paper or via an neck patients there is some recent on Wednesday that he would be iPad. He is also unable to eat or drink. evidence that this may be a crucial issue. “disappearing for a while to get that all However this has not detered him from sorted out”. He said: "I'm sad to say that I Cancer patients are surviving longer as getting on with his life. He has a very have some cancerous tongue and lymph treatments advance; however the suicide supportive wife, Lyn, a great family and a node issues and so, as I'm sure you'll rates are significantly higher than might lovely new grandson. I have known Keith understand, I'm going to be disappearing be expected. for several years. He never complains and for a while to get that all sorted out. "It's all is always there to help those in need of In the latest issue of Cancer, an American been caught very early and so everything support. He is a fantastic role model to journal, Nosayaba Osazuwa-Peters of the should be fine." other laryngectomees. Saint Louis University Cancer Centre reported on the findings of his research Keith has started to meet up with his old study. This looked at the data from over 4 friends from the Sunderland shipyard at million cancer patients, of which more his local pub. They really are a great than 150,000 had head and neck cancer. crowd of work mates… Suicide rates amongst head and neck Bert Culling patients were more than double the rate for other cancer patient groups and almost four times greater than for the general population. © Chris Lever / REX / Shutterstock Head and neck patients face not only the Mark continued: "All being well I'll be back challenge of dealing with a potentially life- in action in the new year… or sooner if I limiting illness but also the consequences feel well enough. But I will be back, you of the treatment itself. This may include can depend on it. I just can't say exactly big problems with speech and when that will be. So you won't hear from swallowing which can limit social me for a while now and therefore... well... interaction and the ability to continue in Merry Christmas I guess. Life eh?" Keith, 3rd in on the right (red t-shirt) work. A BBC spokesperson said: "Everyone at NALC is aware of concern around this Radio 2 and 6 Music wishes Mark well issue and will be looking to work with and we look forward to welcoming him other head and neck patient groups to try Stockpiling back when he's ready." The Folk Show will to improve the support that is available. be presented by Ricky Ross for the next We are constantly asked if we can make few weeks. For more information visit the news pages use of surplus pharmaceutical supplies of news-medical.net for 25 October. when a laryngectomee has sadly This article was published by the Evening Standard on Thursday, 4 October 2018 www.news-medical.net/news/ passed away. On several occasions we and is included in The Voice 20181025/Head-and-neck-cancer- have received such huge quantities of survivors-more-likely-to-commit- base plates, stoma covers etc. suicide.aspx We only have a tiny office so we do not have the space to store very much. The hospitals will not take the items to use, even if the packaging is sealed. So, except for a few that we send to our laryngectomees overseas, we have to dispose of them. If you feel as though you are beginning to stockpile your regular supplies, please let your GP or dispensary service know and maybe

have your prescription issued less frequently.

Right, is an example of excess boxes of unused medical items, brought to the ofﬁce, from just oned person. 10 e e e f f f Clan Dec 2018_to proof 27/11/2018 08:38 Page 11

999 What is your New Travel Guide emergency? The Travel Guide provides information for laryngectomees about hospitals throughout the If you are deaf, hard of hearing or speech UK and Southern Ireland. The idea behind the impaired you can register for the 999 Guide is to give laryngectomees confidence if they Emergency SMS Service that allows you to are travelling away from home. If problems arise text the police in an emergency from your the Travel Guide can help them to find a local mobile phone. hospital. It also has a list of items it is useful to take This service works throughout the UK on when away from home and it has translations into all mobile networks, but it cannot be used French and German of the phrases which may be from abroad. needed abroad. We have had positive feedback You have to be registered to use this SMS about the Guide but also need to receive negative service. Simply text 'register' from your feedback where the Guide is out of date. Updates mobile phone to 999 and follow the can be sent to [email protected]. instructions. For more information visit The Travel Guide can be downloaded from our www.emergencysms.org.uk website www.cancerlt.org. To receive a printed The emergency service will either ask for copy of the 2017 Travel Guide please send a SAE with a 1st or 2nd class stamp on it, more information or will tell you that help marking the outer envelope Travel Guide. Please ensure the envelope you send is on the way. Don’t assume that your measures at least 6” x 8.5” (160mm x 220mm). Send your request to CLT, PO Box 618, message has been received until the Halifax HX3 8WX. emergency service sends a message back. It will usually take about two minutes before you get a reply. If you don’t Shout At Cancer get a reply within three minutes, please try again or you can dial 999. When When I attended the Conference asked which service you require, if you for Head and Neck Cancer are able to tap the phone or cough, this Nurses in Birmingham I heard a will indicate to the operator that the call is lecture about a remarkable an emergency and prove that you haven’t choir called Shout at Cancer. I rung by mistake. If you are unable to do love singing and help to run our this then you can local church choir. My father, our dial 55 and the founder, also enjoyed singing operator will know although he preferred singing in that you require the car as we drove along. His assistance. party trick was to sing You Are My Sunshine in Faroese as he (From BLA website) Remember, NALC learnt this during his time on the has emergency Faroe Islands during the Second World War. Once he had had a laryngectomy he did not wristbands, car return to singing – as far as I can remember. However, as I learnt at the Conference stickers and wallet there is a choir called Shout at Cancer which is made up of people who have had a cards. Please laryngectomee. It was set up in London and is run by a large team of people including contact head ofﬁce speech therapists, doctors, professional singers and voice coaches. if you would like any of these. The first concert was on 10 October 2015 in Christ College Chapel, Cambridge. Dr Moors who spoke at the Conference was a singer with the Belgian Boys Choir and is able to combine medical and singing experience. The choir has performed at the Belgian EMERGENCY Embassy in July 2016. As a singer I know all about how valuable singing and breathing I AM A LARYNGECTOMEE exercises can be to help with voice production. The choir members find these exercises I have no vocal cords. I breathe through an opening particularly valuable after having a laryngectomy because they help to improve the in my neck, not through the nose and mouth. range and quality of the voice. However, being in a choir brings so many other benefits IF ARTIFICIAL RESPIRATION IS NECESSARY: including the camaraderie between the tutor and the other group members. 1. Keep the neck opening clear of all matter. 2. Don’t twist the head sideways. 3. Apply oxygen only to neck opening. If you would like to listen to the choir here are some links to them on Youtube 4. Do not dislodge silicon neck valve. www.youtube.com/watch?v=usHaBMN3fvo or www.youtube.com/watch?v=CL5zEnKRdLI . 5. Mouth-to-opening treatment is effective. PTO The website for Shout at Cancer is to be found at www.shoutatcancer.org . As well as singing, the choir also uses some techniques from beat boxing. I have to

confess, this was a new musical technique to me but it is described as vocal percussion which involves mimicking drum machines. It is usually associated with Hip-hop music.

Singing after a laryngectomy may not be for everyone but it is interesting to see what some people have found possible when finding their new voice. d Ros Oswald, Trustee Cancer Laryngectomee Trust e e 11e f f f Clan Dec 2018_to proof 27/11/2018 08:38 Page 12

e d e f NewsNewsf fromfrom thethee ClubsClubsf Speak Easy Club, Cornwall Plymouth (RHNCS)

Three Club members went Alpaca trekking Their Christmas Luncheon is on 12 at Liskeard on 8 October and had a great December at The Duke of Cornwall Hotel time with the Alpacas and a nice cream in Plymouth. There is a Grand Draw and a tea afterwards. Both Di and Jan had fridge Secret Santa. magnets and key rings made which Their Display Stand at Tamar View Garden showed them with their Alpacas. Here is a Centre, Saltash in October raised photo of all the people on the trek. awareness as well as funds by meeting Then on 2 October they had a trip on the and talking to many of the Centre's Helstone Steam Railway. customers. The picture shows Charlie, their newest and youngest recruit, dishing out leaﬂets to passing ladies… Chesterfield Club We marked European Head and Neck Cancer Awareness Week in September by organising a coffee morning. There was a good turnout and we raised over £200, half of which has been donated to NALC. We were joined by representatives from Be Cancer Safe, an awareness campaign across South Yorkshire, Bassetlaw and North Derbyshire. Earlier in September our regular meeting welcomed a guest from the East Midlands Cancer Alliance. This cancer network is revising its head and neck cancer pathway and our members shared their experiences, both positive and negative. Subsequently we contributed by completing an online survey. The East Midlands faces a particular challenge in recruiting specialist doctors, as seen in the BBC series ‘Hospital’. The consultation was partially aimed at improving how trusts work together in addressing such problems. To conclude the year we have planned a Christmas lunch and a trip to a Victorian Market in nearby Matlock.

Golden Oldies We have received an email from Ian Jackson whose Uncle, Robert Macaloney Geddes, turns 91 this year. He had his laryngectomy 37 years ago and is still going strong! Ian asked if he was the oldest surviving laryngectomee. If any of our readers are older, please let us know. It would be great to feature our Golden Oldies in the next edition of CLAN.

Calderdale and Huddersfield Foundation Trust Anne-Marie Smith (SLT) and Malcolm Babb (NALC) are seen at a meeting of the laryngectomee group at Huddersﬁeld Royal Inﬁrmary in October.

e How does Good King Wenceslas like his pizzas? One that's deep pan, crisp and even! e Why did no one bid for Rudolph and Blitzen on eBay? Because they were two deer! e d © The National Association of Laryngectomeee Clubs 2018 e Printed by The Ludo Press Ltd, London SW17 0BAe f f f