Newsletter - Mesothelioma UK
Transcription
Newsletter - Mesothelioma UK
Mesothelioma UK Newsletter Winter Issue 2014 Introducing Nurse 6 - Lorraine Creech My name is Lorraine Creech and I am the 6th Mesothelioma UK Clinical Nurse Specialist for Greater Manchester and Cheshire. Welcome to our final newsletter of 2014, and what a year it has been for the charity. We really are going from strength to strength. Debbie Neale is manning the helpline as if she has being doing it for years. Ghislaine Boyd has settled into her Business Manager post here at HQ! I am based at University Hospital South Manchester Foundation Trust and funding has been secured for this four day week post, two days from Mesothelioma UK and two days from the North West Lung Cancer Charity. I trained at University Hospital South Manchester and went on to hold posts in general medicine, community nursing and hospice care. I became a Macmillan Palliative Care CNS in 1990 and in 1999 I developed the Macmillan Lung Cancer Nursing Service at East Cheshire NHS Trust. In 2007 I was appointed as the Macmillan Lung Cancer Lead Clinician at East Cheshire ( one of only 2 posts nationally that I was aware of ) and I was also the Non Medical prescribing Lead for the Trust. We are delighted at now having 6 nurses funded by Mesothelioma UK, working in Bristol, Cardiff, Leicester, Manchester, Portsmouth and Sheffield. Posts in Oxford, Northumberland, London and Glasgow will be up and running before the end of the financial year and we sincerely hope Cambridge manage to recruit to the seemingly unfillable gap left by Gerry Slade. Gerry retired earlier this month; we sincerely wish her well and are tremendously grateful for the commitment and hard work she has shown Mesothelioma UK and of course Papworth hospital. In the past I was the first nurse representative on the British Thoracic Society Lung Cancer Working Group, a committee member for the National Lung Cancer Forum for Nurses and the Vice Chair of the Greater Manchester and Cheshire Cancer Network Lung Clinical Sub Group. I was also the M-NAT representative for Greater Manchester and Cheshire. Earlier this year I was elected as a Trustee for NLCF for Nurses and I am the clinical nurse representative on the Manchester Lung Cancer Board. I have always been extremely proud to be a Macmillan Nurse and I certainly hope that my representation of Mesothelioma UK develops as an ambassador for the Charity. My aspirations are to develop a specialist Mesothelioma nursing service in Greater Manchester, having a local, regional and national remit. Mesothelioma UK’s first annual Research Grant will shortly be announced through the British Lung Foundation. The Charity has allocated £150,000 for research this year and hope to be able to do this (and more) every year. Lorraine Creech Senior Clinical Nurse Specialist Mesothelioma The Neil Cliffe Centre University Hospital South Manchester Southmoor Road, Wythenshawe Ghislaine has been negotiating with the Citizens Advice Bureau (CAB) and we shall soon launch a national benefits advisor post that will be funded by and based in the Meso UK offices but provided by CAB. Our Annual Patient and Carer conference back in October was extremely well evaluated with over 121 attendees. Plans for next year are already underway. If there is something or someone you would like to see on the program for the day please let us know. A team of UK clinicians attended the International Mesothelioma Interest Group meeting in Cape Town, South Africa in October. The UK presence was evident throughout the event; a brief summary of the meeting is in this newsletter. The UK team were delighted that Professor Dean Fennell has now taken over as IMIG President and it was also announced that the UK bid to host IMIG 2016 was successful. We will host the 2016 IMIG Meeting in Birmingham. The UK Trials portfolio is growing each month. We have had so many positive comments about our centre page pull-out that lists all the trials. This is a working, live document and we really do rely on everyone to help us keep it up to date. The more people feel informed (patients, carers, nurses and doctors) the more likely we are to spread the word about available trials. In addition to trials being good news for those affected by the disease the UK’s ability to recruit to Mesothelioma trials is extremely evident, this success will not go unnoticed by drug companies looking for potential countries and centres to trial their product. Please help us keep the trial information up to date and share it as widely as you can. I would like to point out the Mesothelioma Practice in Cancer Care Accredited module that is run through the Royal Marsden School. If you are interested in the course, register your interest as it is currently only provided to meet registered demand – you will find the link on the Royal Marsden website. The Mesothelioma UK Board of Trustees are keen to recruit more trustees particularly individuals with an accounting, marketing or business background. If you are interested please get in touch by emailing [email protected] Finally a huge thank you to the Meso UK team (HQ, trustees and nurses) for their ongoing passion for the work we do and more importantly to the many supporters who donate time and money that enables us to continue and grow. Sincere best wishes to you all for the festive period. Liz Darlison If you would like to be removed from (or added to) the mailing list for the newsletter, please call freephone 0800 169 2409, email [email protected] or write to: Mesothelioma UK, Glenfield Hospital, Groby Road, Leicester, LE3 9QP. Please state whether you would like electronic copy (please supply email address) or hard copy. International Mesothelioma Interest Group, Cape Town, South Africa October 2014 Swindon & Asbestos Support Group Christmas Event Opposition is Growing to Government Plans to Increase Legal Costs for Mesothelioma Victimsatt Almost 300 people gathered in Cape Town for IMIG 2014. The meeting was spread over three packed days with a welcome reception on the evening prior to day 1. It was wonderful to see many UK representatives there including several nurses. On 14 December at 12pm the Swindon Asbestos Group for widows, wives and partners of asbestos sufferers will meet at Blunsdon House Hotel in Swindon for their annual Christmas lunch which is a very special affair attended by a large group of ladies from the South West As we all know Mesothelioma patients and their families often take legal claims for compensation. Everyone knows they do not want to take such action but for many it is the only way to provide their families with a financially stable future. There was a strong air of optimism at the meeting. Clearly the more we learn about cancer cell biology the Liz and Lorraine at more it seems the Conference dinner mesothelioma complete with tribal face paint. shares characteristics similar to cancers associated with better treatment and outcomes. The international portfolio of trials in mesothelioma is expanding rapidly and the UK’s ability to recruit, as evidenced by the COMMAND study has not gone unnoticed. Trial outcomes are eagerly awaited with positive anticipation; across the three days there were many references made to personalising treatment in mesothelioma. The closing plenary even asked if we should dare to believe we might find a cure! industry still reaps and the manipulation this can lead to. Professor Dean Fennell from Leicester has taken over as IMIG President for the next two years. I accompanied Dean to the IMIG Board Meeting where we presented a UK bid to host IMIG 2016. Other bids were submitted by Antwerp, Belgium and Paris, France. I am delighted that at the Conference Dinner Birmingham UK was announced as the chosen host for IMIG 2016. A full report of my conference notes is available on the Mesothelioma UK website or by email request to [email protected] Each day the ‘Best of IMIG’ was posted on the internet, you can view the content using the following links. There was also, for the first time, a strong sense of cohesion at the meeting. In particular there was more agreement than ever before regarding surgical approaches and support for the surgical trials being developed. IMIG this year for the first time included a social advocacy panel. UK based Laurie Kazan-Allen from the International Ban on Asbestos secretariat gave a revealing insight during her plenary session into the global asbestos disaster and the work of advocates. The presence of the advocates at IMIG cannot be underestimated not least because they recognised a less honourable individual who through a poster presentation used the meeting to add credibility to toxicology findings that support the asbestos industry. Sometimes we health care professionals are so focused on disease, treatment, cure and care we are naïve to the commercial benefits the asbestos 2 Day 1 - http://imig.org/archives/1858 Day 2 - http://imig.org/archives/1927 Day 3 - http://imig.org/archives/2033 In addition Laurie Kazan-Allen from the International Ban on Asbestos Secretariat, has prepared the following review of the meeting: http://ibasecretariat.org/lkainternational-mesotheliomaconference-2014.php Whilst at the event, Lynne Squibb, from the Hampshire Asbestos Support Group presented a cheque for £15,000 for Meso UK. Liz Mesothelioma Newsletter - Winter Issue 2014 Most of the ladies have lost their husbands from mesothelioma. They normally meet monthly but once a year they meet in a local hotel for a special Christmas meal. Following the meal they have secret Santa whereby all the ladies bring a small gift which are then distributed amongst the ladies so everybody goes home with a small gift. After lunch all the ladies gather in the lounge and sit by a log fire with the Christmas tree and chocolates and coffee and chat amongst themselves. All the ladies dress up to make it very special. It is an opportunity for ladies who have lost their husbands from mesothelioma to make new friends following their bereavement and to have support from others who understand what they are going through and offer help at difficult times. Some of them even plan to go on holiday together in the summer months. Also on Monday 24 November the ladies will be meeting at Dobbies Garden Centre near Cirencester for special Christmas tea and cakes in the specially decorated restaurant and afterwards use the opportunity to look for Christmas gifts in the large garden centre. Wishing you all a Merry Christmas & Happy New Year from the Meso UK Team xxx Because such action is often necessary patients, their families and support groups have always argued that the process should be as simple as possible. That is why so many were concerned when the Government changed the legal aid rules in 2012 and started to impose legal costs on people taking out ‘conditional fee agreements’, known by most as no win- no fee agreements. These costs are for success fees and the premiums of insurance policies taken out to cover legal costs if a case is lost. Previously they had been paid by the defendants, in most mesothelioma cases the insurance company concerned. The changes were designed to ensure people shopped around for the most economical legal advice. Many in Parliament found it impossible to support such a change in the rules for mesothelioma sufferers. They believed that people battling this terrible illness should be able to concentrate on their treatment not on studying lawyers legal costs. That should be a job for the Courts. Therefore they put into the Legal Aid, Sentencing and Punishment of Offenders Act 2012 (LASPO) a section exempting mesothelioma cases from these changes until the Government had carried out a review of their likely consequences on such cases. The Government claimed they were fulfilling this obligation by including a question on the LASPO exemption in a consultation paper concerning the general reform of mesothelioma cases in the winter of 2013. This was such a transparent attempt to carry out a review in name only that the Asbestos Victims Support Groups Forum decided to initiate a judicial review of the Government’s actions. When Tony Whitston launched this action on behalf of the Forum many said it as just the usual suspects making yet another complaint. Then others began to take notice, especially when it emerged during the process of the judicial review that the Government had signed a secret deal with the insurance industry agreeing to a series of their demands, including ending the exemption. In the spring of 2014 the Parliamentary Justice Select Committee looked into this matter and published a damning report into the Government’s conduct. They concluded the review was “maladroit and “unsatisfactory” and called on the Government to start again. In September the Honourable Mr Justice William Davis handed down his judgement of the judicial review in the Royal Courts of Justice. He ruled that the Government had not complied with the requirements set out in the Legal Aid Act. Commenting on the ‘review’ the Government did undertake he concluded that “no reasonable Lord Chancellor, faced with the duty imposed on him by Section 48 of the Act, would have considered that the exercise in fact fulfilled that duty”. He called on the Lord Chancellor to carry out a proper review. Until this review is concluded the Government cannot implement the changes. This is a very welcome development and we hope the Government will see it as an opportunity to take a new approach based on justice for victims. They need to carry out a proper review, one based upon evidence, and they need to understand that it will take three to five years for that evidence to emerge. Most of all they need to realise that sufferers, their families and the support groups are not going to stay silent. We are going to continue arguing for better treatment, more medical research and access to justice. It is time for them to listen and to do the right thing. “Are you going for a winter walk? If so come and join the Meso100Challenge & help us to fight this cancer caused by Asbestos exposure. 100 steps! 100 pennies! - Text SWPX 78 £1.00 to 70070 or click the donation button and pledge £2.00 ‘Together we can fight this disease’. IATP With Christmas nearly upon us, here at the IATP we are thinking ahead into the New Year and preparing for our 2015 Annual Charity Dinner on Saturday 31st January. The Annual Dinner is not just about the IATP members, it’s about bringing people together in a more social atmosphere, to raise awareness and funds for charity. All funds raised this evening will go to the Asbestos Awareness & Support Cymru (A.A.S.C), to help them continue the great work they do providing assistance to those, whose lives are devastated by asbestos related diseases. We also present the IATP Recognition Awards. These awards are presented to individuals or groups for their outstanding contributions to our industry. This year’s awards will be presented to: • JUAC • Kieran Brewer • Lord Saatchi Should anyone be interested in finding out more about the dinner or attending it please visit: www.iatp.org.uk/iatp-2015-annualdinner-awards-winter-wonderland/ Wishing you all a very Merry Christmas & a Happy New Year From all at the IATP Mesothelioma Newsletter - Winter Issue 2014 3 National Mesothelioma Report 2014 Dr Mick Peake, Chair of the Board of Trustees of Mesothelioma UK and Clinical Lead for the National Lung Cancer Audit A report on Mesothelioma in England and Wales covering the period 2008 to 2012 was recently published by the National Lung Cancer Audit (NLCA) team (available via the Health & Social Care Information Centre’s website – link below). Data for the NLCA is collected by Multi-Disciplinary Teams and whilst focussing on lung cancer, data on mesothelioma has been collected from the outset. Because it is lung teams who are collecting these data, the report is confined to pleural mesothelioma. Data on 8,740 patients (405 of which are from Wales) were available for analysis – making it, to our knowledge, the largest case series ever published and we estimate represents around 85% of all cases and virtually all of those patients that reach hospital. The median age of the patients was 73, but there were large numbers aged 50 to 70 and small, but significant numbers under 50. 7266 (83%) were men and, as one would expect there were wide differences in the number of cases being seen in different parts of the country, the pattern reflecting the location of asbestos-related industries. Mesothelioma remains a relatively rare cancer with median number of cases that each hospital team sees each year being only 10. This means that there are many teams who care for only 2-3 cases per year. What is apparent is that there is wide variation in treatment and outcomes across the country. For example, overall around two-thirds of patients receive some sort of active anti-cancer treatment (chemotherapy, surgery or radiotherapy) that proportion varies between 46% and 74% between cancer networks. The time it takes for a diagnosis to be made also varies hugely varying from an average of 15 days in one cancer network to 44 days at the other extreme. There are several very positive findings, perhaps the most important of which are firstly, that the proportion of people being treated with chemotherapy has risen from19% in 2008 to 36% in 2012 and secondly, that the survival is improving with the proportion of patients alive one year after the date of diagnosis has risen from 38% in 2008 to 43% in 2012. Other studies have shown that this is part of a longer term trend for improving survival since around 2001. Looking at how long different specific groups of patients with mesothelioma are now surviving, we can see that those with the epithelioid type whose general health have a much better chance of longer term survival with well over 10% of them still being alive 5 years after diagnosis. So, whilst those researching into new and more effective treatments still have a huge amount of work to do, there is evidence of modest improvements. That there is such wider variation in treatment rates is a major worry and we will continue to feedback data such as this to hospitals with the hope and expectation that they will drive up standards of care and lead to better outcomes for patients. Link to the report: http://www.hscic.gov.uk/catalogue/ PUB14876/nati-lung-canc-audisupp-prog-meso-2014-rep.pdf If you have news,stories, updates or information on any mesothelioma trials then please let us know. Contact us on 0800 169 2409 or e-mail us at [email protected] 4 Mesothelioma Newsletter - Winter Issue 2014 Nintedanib in Mesothelioma TRAP Trial - Tumours Requiring Arginine to Assess ADI-PEG20, CisPlatin and Pemetrexed (TRAP) Trial The aim of this study is to see if the addition of Nintedanib to chemotherapy followed by Nintedanib alone is more effective at delaying progression of disease than treating with chemotherapy with placebo and then placebo alone. We have recently completed ADAM (ADI-PEG20 and Mesothelioma), the first trial to show that starving cancers of arginine led to a doubling of the progression-free survival. This study was presented in 2014 at the American Society of Clinical Oncology in Chicago in the plenary lung cancer session. Patients are eligible for this trial if they have not received any previous chemotherapy to treat their disease. The trial is currently open across the world including 5 hospitals in the UK. Currently 52 patients have entered the trial and recruitment will continue until the end of 2014. Further information on this study can be requested from the following hospitals; Local Investigator: Dr Sanjay Popat Centre: Royal Marsden Hospital Chelsea and Sutton Contact email: [email protected] Status: Open and recruiting Local Investigator: Prof Allan Price Centre: Western General Hospital, Scotland Contact email: [email protected] Status: Open and Recruiting Local Investigator: Dr Nicola Steele Centre: Beatson Oncology Centre, Scotland Contact email: [email protected] Local Investigator: Dr Paul Taylor Centre: Wythenshaw Hospital, Manchester Contact email: [email protected] Status: Open and recruiting HSV1716 TRIAL This is a trial of an oncolytic virus, seprehvir (HSV1716) given into the pleural cavity through an indwelling pleural catheter, such as the Rocket or PleuRx systems. We have now completed the phase I part of the trial, which tested one, two and four virus treatments given once weekly. We have found that the virus treatment is safe and remarkably well tolerated. We are now looking for more patients to be treated on the 4-dose schedule to establish whether it might be effective in treating mesothelioma. Anyone interested should ask their consultant to contact me. The follow on trial called TRAP is testing whether the arginine depletor ADI-PEG20 will be more effective when combined with standard chemotherapy for mesothelioma, namely cisplatin and pemetrexed (Alimta), based on new data published from our laboratory. We showed that starving mesothelioma cells of arginine improves the activity of pemetrexed and may lead to higher response rates (Allen et al, Cancer Research 2014). All patients enrolling onto the TRAP study will have their tumour tested for low levels of the enzyme called ASS1. ASS1 is needed to make arginine, a key amino acid needed for growth and multiplication of tumour cells. Normal cells have sufficient ASS1 and can produce arginine for their own growth and survival. However, some mesotheliomas cannot make their own arginine due to low levels of ASS1 and, therefore, must obtain it from the bloodstream. ADI-PEG 20 depletes the blood supply of arginine, causing these cancer cells to die. In this trial up to 47 patients with ASS1-negative mesothelioma and lung cancer (adenocarcinoma) will receive weekly doses of ADI-PEG 20 in addition to standard chemotherapy with cisplatin and pemetrexed. Tumour response will be measured using CT and PET scans. Patients will also have their blood counts and organ function measured regularly in order to monitor their progress. TRAP opened in July 2014 at the following phase 1 centres: St Barts, Guys and St Thomas’ Hospitals and Addenbrookes, Cambridge. Cohort 1 has completed accrual with good safety and tolerability. Cohort 2 opened in November and is recruiting patients. Once the maximum tolerated dose of the three drug combination has been determined, a further 10 patients with mesothelioma and 10 patients with lung cancer will be enrolled with assessment of disease response using FLT-PET (to monitor cancer cell multiplication) in addition to standard CT scanning. The FLT-PET studies will be performed at St. Thomas’ Hospital, London in 2015. Dr. Peter Szlosarek of the Centre for Experimental Cancer Medicine, Barts Cancer Institute, Queen Mary University of London and St. Barts Hospital is the lead investigator of the study. Dr Peter Szlosarek E-mail: [email protected] MARS 2 Description of trial: To determine if it is feasible to recruit into a randomised trial comparing (extended) pleurectomy decortication versus no pleurectomy decortication Treatment Pattern and Visits: 2 cycles of standard of care chemotherapy, CT scan to evaluate if disease is within surgically resectable limits, then randomisation to surgery versus no surgery with both groups receiving 4 further cycles of standard of care chemotherapy. Follow up visits at 6 weeks, 3, 6, 9, 12, 18 and 24 months and annually thereafter for 5 years. Centres open and recruiting: Centres not open yet but Sheffield and Leicester will be the lead surgical centres and approximately 15 medical centres will also participate Contact Details: Trial Managers: Dr Vikki Hughes and Dr Belinda Lees, email: [email protected] Short statement: “We are delighted to announce that MARS 2 has received Ethics approval and is in process of setting up the participating sites. It is anticipated that recruitment will commence in the first quarter of 2015” RUXSAC TRIAL The RUXSAC trial is examining the effect of the addition of Ruxolitinib to standard pemetrexed/ cisplatin chemotherapy in pleural mesothelioma. Ruxolitinb is an oral drug that inhibits the effects of a molecule called STAT3. STAT3 is important in mesothelioma for three reasons. Firstly, the growth of many mesothelioma cells is stimulated by a molecule called IL-6 and IL-6 signals by activating STAT3. IL-6 also causes mesothelioma cells to produce substances that cause new blood vessel formation thus improving the supply of nutrients to the tumour. Thus, inhibition of STAT3 should prevent these adverse effects of IL-6. Secondly, there are cells called myeloid derived suppressor cells in mesothelioma tissues that prevent the immune system form recognizing and attacking the malignant cells. STAT3 is a key molecule driving MDSC production and immune suppression. Thus, inhibiting STAT3 should improve immunity against mesothelioma. Perhaps of most interest is that when mesothelioma cells are treated with pemetrexed, many of the cells, as a direct result, produce substances which cause some of the other treated cells to become highly aggressive chemo-resistant cells that seed many more malignant cells. The activation of STAT3 is a key event in this process and so inhibition of STAT3 with Ruxolitinib should reverse this negative effect of the main drug we use to treat the disease. The trial is due to start in early 2015 and will be for patients receiving first line treatment. Professor Gary Middleton is leading the trial from the CRUK Clinical Trials Unit in Birmingham and there is an exciting programme of anciliary studies which will aim to fully understand why the drug works and how in patients on the trial. Professor Gary Middleton [email protected] Should you require any information with regard to any of the above events/information please contact Debbie Neale on 0800 169 2409 or email me directly at [email protected] Penella Woll Mesothelioma Newsletter - Winter Issue 2014 5 Mesothelioma UK Charitable Trust 1126083 Fundraising News We are reaching that time of the year when the leaves are turning the most beautiful of colours and the long nights are drawing in, but the season of good cheer is just around the corner and this year just seems to have flown by. Up and down the country our wonderful fundraisers and supporters have been raising awareness about the dangers of asbestos and mesothelioma. There is an array of activities going on to see us throughout the rest of the year, which is absolutely fabulous and if you decide you want to come and join us and do something, then give us a call and we will be there to help you every step of the way. It doesn’t have to be big, you can hold a coffee morning, do a bare faced selfie or even the Ice Bucket Challenge, it all raises awareness and funds. Wishing you all a very Merry Christmas and Happy New Year! Jill Lemon Fundraising & Marketing Manager Debbie Wright “Vic Wright, my Dad, passed away from Mesothelioma last year. He was only 61 years old and had so many plans for the future after his retirement. It was a devastating loss for myself, my sister Vicky, and our Mum, Angie. It came as such a shock because he only went to the see the doctor in April with a cough and slight breathlessness, and by August he was gone. The doctors initially gave him up to 18 months but sadly, he only made it four. He was so very brave and strong until the end and we were by his side in the Peace Hospice when he passed. Most people have never heard of Mesothelioma because it is such a rare form of cancer. If they have heard of it, they tend to think of it as a “workman’s” disease that people get who have worked in the construction industry. Yet my Dad was a Sales and Marketing Manager. He was only exposed to asbestos for a few weeks in the early stages of his career when he was required to work on the shop floor as part of training. It just goes to show that Mesothelioma is a very virulent form of cancer that is not always caused by prolonged exposure to asbestos over many years. In October last year, my sister and I ran the Twilight Race for Life in memory of our Dad in our hometown, Watford. It took place in Cassiobury Park, which is a special place for us all. Dad used to like going there and watching their model train. We raised over £1000 for Cancer Research UK just by running 5km. Last year, we raised money specifically for Mesothelioma UK by asking people to donate at the funeral rather than give flowers, but we felt like we wanted to do more for the sufferers of such a little known disease. My sister decided to do the Race for Life again this year at the park on Father’s Day, and I joined her. This time, we raised money for Mesothelioma UK rather than Cancer Research. We both completed the race in good time, and so far have raised over £400. Like last time, my Mum was there supporting us, and waited on Dad’s special bench near the finish line. It’s such a small thing to do but it really helps raise awareness of the illness as well as some much needed funds. We have been lucky in that so many people have been willing to donate to the cause and we could not be more grateful. Dad was so well-loved with so much life left in him, and his passing is such a tragic loss. We know that he would have been proud that we are hopefully helping other sufferers and their families in his memory. We hope that our story will motivate others to do something, however small, to help the fight against Mesothelioma.” John Gyte, Ian’s Colleague We worked with Ian for 18 years at Glanford Brigg Power Station, he was one of the most affable and easy going people to work with and a loyal friend. Unfortunately just after he retired he was diagnosed with terminal Mesothelioma. Despite battling bravely against the disease with his usual optimistic attitude, he passed away this year. One of his wishes was that other people with the disease would not have their life shortened so we are supporting Mesothelioma UK Charitable Trust by taking on a cycling challenge in the Yorkshire Dales. Two routes, very challenging with four large climbs or challenging with two large climbs – one of the climbs was included in the Tour de France this year. Any donations will help with research into the disease and support for those unfortunate enough to contract the disease. Sadly it’s too late for Ian, but with your help we can turn the memory of Ian into something positive. Mesothelioma UK • Freephone 0800 169 2409 • www.mesothelioma.uk.com Details of all sponsorship, donations, fundraising and successful grant applications are posted on our website 6 Mesothelioma Newsletter - Winter Issue 2014 Linda Lakin, ‘A Bit of a Do’ In February 2014 I received the shock diagnosis that I have Mesothelioma. I worked in a dry cleaning shop in the early 1970’s where the steam pipes were lagged with asbestos and now, 40 years later this exposure has given me this disease. I had pleural decortication surgery in March and am now well on my way to recovery. Fortunately, all of the cancer visible at that time was removed so now I am playing the waiting game for it to come back. Then I will need to have chemotherapy. In the meantime I do not plan to give in – I am going to fight this to the end. The support I have received from both the surgical team and Mesothelioma UK has helped me enormously and so I have decided to organise a ball to raise money to enable the charity to continue its work. Since March 2015 marks my one year survival that is the date I have chosen for ‘A bit of a do’. It will be held at Leicester City Football Stadium on 21 March and tickets will cost £40 per head. For this you will get a 3 course fixed menu meal, with vegetarian and special diets catered for, live entertainment provided by Karen West and a raffle with lots of goodies donated by local and national businesses. For anyone travelling distances there are special rates available at Holiday Inn Express which is at the edge of the stadium site. A deposit of £10 secures your ticket with balances due by 7 February. Why not round up your friends and make a table of 10. For more information and to book your tickets contact Linda Lakin on 07802756357 or by email [email protected] Thank you for your support, Linda Lakin Kellyanne Truman & Danny, Reebok Spartan Race 2014 I decided to do the Spartan Race in September 2014 which was a personal challenge to myself. I had never done anything like this before. It was a race of just under 5 mile with various obstacles along the way, I then had to decide on a charity (after all if I was going to put myself through this I might as well raise some money) I would normally always go for the usual and more general cancer charities, but I decided to raise much needed funds for Meso, I know funding is not in the ballpark of that of other cancer charities so with my Granda’s passing it made perfect sense. I hate running and the race was hard but I knew my Granda was with me all the way, and I knew I had to do it for the charity to help raise awareness and hopefully find a cure in the future. I always thought my Granda would be around forever. He was one of life’s good guys! Why he had to be struck down with this horrible illness I don’t know....maybe God needed him more than we did x A bit about my Granda: Joe Doherty my Granda worked every day of his life to provide for his wife and 10 children, and never had a sick day in his life, I remember him going to the doctors having smoked for 60 odd years being told he had a better lung capacity than a 21 year old, he was quite chuffed with this. His health started to deteriorate around the age of 84 which we put down to old age. But in September 2012 he was diagnosed with Mesothelioma. He never once showed his fear of dying and continued to attend mass every Saturday until the cancer really took hold. He was admitted to hospital a few days before Christmas where he remained strong, humorous and the heart of the family until his passing on New Years day 2013! He is our Dad, Granda, Great Granda and most importantly our hero! Sadly Missed Always Remembered RIP x Naomi Troy - My story Team Centrica Yorkshire Cycling Challenge “Our wonderful Dad Ian Webb, was diagnosed with malignant Mesothelioma in September 2013 and we knew straight away that is was terminal. Despite a brave battle and treatment, Dad sadly passed away 10 months later in July 2014. Throughout his illness Dad maintained a positive outlook and was an inspiration to everyone with his ‘just get on with it’ attitude. Dad had always loved his job working at power stations as a Mechanical Engineer and despite his illness being related to his job he wouldn’t have changed it for the world. He made so many life long friends throughout his career and it was his latest team of colleagues who were so saddened by Dad’s passing that they decided to organise a charity bike ride in Dad’s memory. The ride covered a grueling 55 miles, through North Yorkshire, one of Dad’s favourite places, and included two sections used by the Tour de France 2014. One of Dad’s wishes was that other people with the disease would not have their life shortened or at the very least should have the support they and their families’ need, so the team decided to support Mesothelioma UK, who provide this much needed support. With only a few weeks to organise the event, to train for the 55 mile ride and a fundraising target of £2,000 the team had set their goals high! The day came and the weather took a turn for the worse with strong winds and rain, but the brave 21 riders, including a tandem, battled the weather to complete the challenge with great success. We had been invited to join the riders after the challenge for a celebratory meal and it was amazing to meet everyone and to hear their stories of the day and to feel the buzz that they all felt after completing it. And, the best news of all they had smashed the fundraising target, raising a fantastic £2,843.75 for the charity so far. We can’t thank everyone enough. To organise such a fantastic event in the short time and to raise so much for this great cause is unbelievable. We know Dad would have been overwhelmed by the support from everyone and that this was all organised in his memory.” Mesothelioma Newsletter - Winter Issue 2014 7 Jane Devalle, Tricia Lilley and the Gravelly Barn Team Alison Hudson Machu Picchu Jane, Tricia and the Team at Gravelly Barn organised a two day VIVACE Art Inspired by Music event at the Gravelly Barn in Braughing. The event took place on Saturday 20th September where there was a Lunchtime Recital with Robin Ward, International Harpist. Over the two days there were displays of all the artist’s works, which included ceramics, painting, contemporary basketry, glass, photography and hand built harps and this wonderful day was held to raise money in memory of their dear friend Ann Smith who was herself an artist. Over the two day event they raised a fabulous £1,750 incl gift aid. This is what Alison has to say about this wonderful challenge…. ”It’s my half century this year and I wanted to make it memorable. Machu Picchu is a place I have dreamed of visiting so I decided to take the challenge of trekking through the Andes to get there. The trek took 4 days and is at high altitude (between 3,800 and 4,600 metres), so it wasn’t easy! In completing this challenge I hopefully have raised awareness while raising money for Mesothelioma UK, a charity close to my heart. Mesothelioma is a disease caused by exposure to asbestos. This charity funds research and supports families affected by it. Boyes Turner Trekkers Thames Path Challenge On the 13th and 14th of September 2014, 11 of Boyes Turner’s asbestos team participated in the Thames Path Challenge and walked an incredible 437km between them, covering the Thames Path between Putney and Henley-on-Thames. Together with the lovely scenery, sunshine and excellent refreshments at the rest stops, there were some testing times for the team with fields of cows to adverse conditions, fatigue, blisters and aching limbs. The six 100km and 50km participants walked through the night, pushing through dark uneven paths lined with stinging nettles with the only light coming from their head torches or mobile phones. The Boyes Turner Trekkers team are pleased to have finished the challenge and are delighted to have raised between them over £3,000 for Mesothelioma UK. The Boyes Turner Trekkers are grateful for the support given to them and to everyone who sponsored them in their Thames Path Challenge. A big thanks to Fiona, Amy, Oliver, Annabelle, Rob, Gurminder, Dennisha and Sarqa. I have self funded the trip therefore every penny I have raised has gone directly to the charity. Sadly I lost my Mum to this disease and it is unknown how many people in the future will discover they have acquired mesothelioma”. Alison completed her challenge and raised a wonderful £1,208.00. Hayley Pattrick – My Story “It started with a bad cough and cold in Sep 2012 that wouldn’t shift and after a weekend away in Euro Disney with me, mum, sister, brother in law and his beloved young grand daughters, we realised it was serious when dad collapsed a couple of times whilst walking around Euro Disney. The day after returning from the short holiday mum and dad went straight to the doctors, where dad was sent for tests straight away and was diagnosed with Mesothelioma. Dad had worked as a carpenter from the age of 18 (he really wanted to become a footballer!) and so had worked with asbestos on and off through out his working life. He had 6 months of chemo from Jan 2013 and the chemo was shrinking the tumour and we really thought things were on the up. My dad was as strong as an Ox and still very young but each month the chemo was taking more and more from dad. The chemo stopped in July for dad to have break and he felt fit and quite well for 1 month but things turned very nasty from August last year and we was all shocked including dad of how quickly it all went downhill rapidly. On the 21st Oct 2013 my boyfriend and I got engaged and I am pleased that my husband got the chance to ask my dad’s permission for my hand in marriage. We lost dad just 4 days later at just 62 years of age. So far this year I have been trying to arrange as much awareness and fund raising as I can for the Mesothelioma Charity as I find it helps me focus on something positive from something so awful and heart breaking. I have placed Mesothelioma charity pots in various pubs and petrol garages around my local town, I arranged a quiz night at my dad’s local working mens club and in July my sister and I and our 2 best friends achieved half a marathon in honour of dad and all those people currently fighting this dreadful disease. Altogether we proudly raised £1,950.00 for Mesothelioma UK. I married a wonderful man in Sep 2014 and it broke my heart that my dad wasn’t there to walk me down the aisle or to witness my special day, but my mum kindly gave me away and I had photos tied around my wedding flowers of dad, we also had memorial table at our wedding with a lovely photo of dad and also placed a candle next to the photo which shined brightly all night for him. This Christmas will be the 2nd without dad and we still miss him and think about him every day. My dad was a great dad and was always the most happiest when he was with all his family, having a beer and watching Spurs! Dad has left some great memories for us and he will always be loved.” 8 Mesothelioma Newsletter - Winter Issue 2014 Vince Hagedorn - Raising funds for Mesothelioma UK in the name of Carole Anne Hagedorn (1950 – 2014) Carole Hagedorn taught students in asbestos ridden schools, she taught children how to speak different languages ensuring their lives could be well lived, but sadly losing her own in the process. Carole sadly died unexpectedly on 20th June 2014 and there is to be an inquest in spring 2015. She had suffered from pleural mesothelioma since the summer of 2008 and she was amongst the 1% of sufferers surviving more than 5 years after diagnosis. The cause of her death is yet to be established by the inquest but her mesothelioma was stable and apparently not the cause of her actual death. This is Vince’s story: “Carole’s brother Mick Colinese did the Great North Run on 7th September raising I believe £2,500.00 for Mesothelioma UK, the charity that did so much to help and support us during her illness., I obtained a BMWi3 electric car for Carole as a surprise from Elms our local BMW i-dealer, they delivered in six days when the waiting list was 3 months but sadly it arrived two days after Carole died. It met every feature on her wish list including a Sat Nav that wouldn’t fall in to her lap while she was driving! After discussing it with our family friend Louise, I decided to do the Lands End to John O’Groats run for the first time in an Electric Vehicle (EV) as supplied and with out modification or special support from BMW. So starting on 8th September, the day after Micks gallant run, we naturally chose the title of ‘The Great North Hum’ for this journey.. The trip was to take us from Cambridge to Lands End to John O’Groats (via the Eden Project) to Dunblane in Scotland where Louise went home by train, then to Lowestoft as it is the most Eastern part of the island the and back to Cambridge. So far as we know, each leg of this journey was a new record for an EV, which is defined as one driven by an electric motor clone. Louise wrote splendidly and her blog is very well illustrated by photos of the journey. I just drove and drove and drove and drove...For 2,000 miles in less than 6 days! I have now covered more than 10,000 miles in three months and it is believed to be that I am the most experienced i3 driver in the universe!! Carole was my wife, my trouble and strife, the centre of my life, my companion, my help, my support and love of all loves; I hope that the funds raised in her name will help Mesothelioma UK to give help and support to other victims of this dreadful disease”. Vince raised £2,339.30 and you can read the full story of this wonderful journey as written by Louise Rayner at http://thegreatnorthhum.wordpress.com/ who was Vince’s ‘Personal Assistant’ who braved the risks and uncertainties to come, navigate blog, support and manage Vince in this fantastic enterprise. Danny Parr’s Meso Ball “On 25th October 2014, almost 150 people attended Rochdale Football Club for a Meso Ball, hosted by Danny Parr in aid of Mesothelioma UK, primarily in memory of Richard Parr and John Vaughan. The evening included a ‘Bucks Fizz Drinks Reception’, a Four Course Dinner, a Secret Auction for signed sporting goods, a Raffle, Games, local comedian Clayton Jones, Triathlete and author Andy Holgate, and the chance to win an iPad. All this was followed by a disco, and an opportunity to dance! The evening was well supported by friends and family, as well as local businesses and organisations, giving the raffle a fantastic array of prizes. We’d like to say a huge thank you to all those who have donated and supported this event. Overall, the evening raised over £3,500 (and rising) and all attendees had a fantastic time”. Danny is a true inspiration and has continued to support the charity in respect and in memory of his lovely Dad Rick, who sadly passed away in February 2011. Danny said “a lot of planning and hard work went in to setting up and running this event, but to see so many people enjoying themselves, and to see the amount of money raised, makes you realise it’s all worthwhile!” Professional pictures from the evening are available for free: http://ianhowarthphotography.zenfolio.com/ mesocharity Kate Godier’s London Marathon “After 3 attempts I finally made it into the London Marathon through the ballot....scary stuff! This is a personal achievement for me as it’s an event I have also wanted to do for many years. Sadly my Dad was taken away from me because of this horrible disease called Mesothelioma, on the 10th March 2009. At the time there wasn’t much information available regarding this cancer as it’s such a rare disease, but as the years have passed more people are becoming aware as Mesothelioma can incubate in the body for up to 50 years. The saddest part is my Dad never even worked with Asbestos, he was a Piping Designer who designed Oil Rigs. I miss my Dad every day and wish he was here to see me complete all my sporting challenges, especially completing the London Marathon. So the charity I have chosen to raise awareness for and which is closest to my heart is Mesothelioma UK who relies solely on fundraising and voluntary donations to be able to provide patients, families and carers with the support they need”. Well Kate did it she, she ran the marathon and raised a fantastic £855.25. Mesothelioma Newsletter - Winter Issue 2014 9 Andrew Lilley and Alex Hudson – Salford Triathlon Claire Warrington Andrew and Alex from the Industrial Diseases department at JMW Solicitors have taken part in the Salford Triathlon back in August and this is what Andrew has to say… “we are raising money for a somewhat unfashionable but very worthy cause that many of you will already be very aware of. Alex and I have entered the Salford Triathlon to raise desperately need funds for Mesothelioma UK. This supports further research into the disease, raises awareness of the illness and provides support for specialist lung cancer nurses caring for those suffering with mesothelioma”. Andrew and Alex have swum 1500 m cycled 40k and run 10k and Alex did it in a time of 3hrs 01.47 and Andrew in 3hrs 48.06 which is just marvellous and they have raised a fantastic £1,355.00. “Many of you know that my lovely mum was diagnosed with Mesothelioma earlier this year. This asbestos related cancer has no cure, and many do not survive beyond their first year of diagnosis. Fortunately, Mum was lucky and diagnosed very early, and she has an amazing chance of living for several years yet (those of you that know her know that she’s not going to let something like cancer take her down without a fight!). Mesothelioma UK support people like mum and their family and friends, providing a wealth of information, and are also working to raise awareness of this disease so I took part in the Bollington 10k to raise awareness and funds to support the charity and thank you to all those who supported me.” Claire raised an amazing £207.50 Sonia Weir and her TeamTrainHappy Ladies TeamTrainHappy are made up of a few mad ladies who will be doing this 7k Military Assault Course in August! It’s all in aid of Mesothelioma and they are taking part because Sonia Weir’s lovely mum has been diagnosed with mesothelioma. She is battling this cancer brilliantly and is being very brave. So these mad ladies will be doing ‘The Nuts Adventure Race course’ which is around 7km of the most challenging army assault courses out there. It was originally designed by personnel from the British Special Forces to push the individual to their limit and these lovely mad ladies have raised a wonderful £1,087.50 Debbie Maslen and her Ladies Charity Afternoon Debbie and her friends held a Ladies Charity Afternoon on the 13th September in memory of their dear friend Alan Hayden. They raised funds by way of a raffle and they had ‘Cake and Prosecco’ what a lovely way to spend an afternoon… and these wonderful ladies raised an amazing £1,302.50. Julia Baines and her ‘Just Jules Charity Ladies That Lunch Party’ Julia held and hosted a Charity Ladies Lunch at her home selling an array of her wonderful bags, scarves, clothes, jewelry, candles and home accessories. She provided a lovely lunch of sandwiches and cakes and refreshments. The ladies had a wonderful afternoon and it was a great success. Julia very kindly donated 10% of her sales and she also held a raffle and raised a fantastic £313.00. Natalie Green - Leicester Half Marathon I work on ward 26 at the Glenfield Hospital which is a Thoracic ward and we look after patients with mesothelioma. I feel that it is a type of lung cancer that more people need to be aware of. I have been running for the past 2 years and thought that it could be a great way to help raise money and awareness in my local area, so I entered the ‘Leicester Half Marathon’. I have been overwhelmed with the amount of support and sponsors from family, friends and colleagues. One of our patients very kindly sponsored me too and their son asked me what time I would like to finish the race in, my own personal goal was to achieve a time of 2 hours and 15 minutes and his response to this was ‘If you finish within your chosen time I will donate £100.00’. I actually beat my personal goal and finished in 2 hours 12 minutes and on returning to the ward there was an envelope waiting for me and in side was a cheque for a £100, this wonderful gentleman had kept his word, I was absolutely speechless!! Everyone has been so generous and I managed to raise an amazing £493.00 to date and it is still rolling in…. Helping raise money for this charity has been a fantastic and above all rewarding experience, knowing that the funds raised will be going to such a worthwhile cause is what inspired me to take on this challenge and I hope that my story will inspire others to go and achieve their own personal goals while raising awareness and funds too. 10 Mesothelioma Newsletter - Winter Issue 2014 Jennifer Douglas ~ My Lovely Mum, Winifred Thacker “My Mum was 67 years old when she was diagnosed with mesothelioma on the 2nd July this year and sadly just a couple of months later she died on 10th September. This horrible insidious disease appeared without any of us knowing although it had been asleep for 40 to 50 years. My Mum worked in a Steel Foundry when she was 16 years old as a clerical assistant and every day unbeknown to her she was breathing in the lethal asbestos dust which makes us her family so angry that she was exposed to this every day by just going to work. Mum suffered from a pain in her back and the CT scan showed there was a tumour in her lung and that it had spread to her liver and she was in renal failure. When Mum was told her diagnosis she was ready to fight this cancer head on, however on the Friday my Mum lost the power in both her legs and became paralysed from the waist down. Shortly after that the cancer spread through her body and peacefully at home on the 10th September my beautiful Mum and my best friend passed away with my Dad and myself by her side. We are still in shock and cannot accept how quick it all happened and all so needlessly, we have lost the rock of our family, my Dad lost his beloved wife and my daughter lost her best Nan, and I lost my Mum. In memory of my Mum and to raise awareness about the dangers of asbestos, we asked for donations instead of flowers at her funeral and we would like to say thank you to all who made donations and helped us to raise £1,000.00 and the money raised will go towards helping those with this disease. David Wingate – Ride 24 Paris Here’s David’s account of the challenge which takes in all the twists and turns of his dramatic yet determined bike ride challenge: “Well it’s over – not quite completed but has been an incredible experience. By noon on Saturday 6th November, I was at the start line in London and raring to go. The weather was perfect for cycling, no wind or rain with a decent amount of sunshine. The countdown started and off we went – 57 riders heading to Paris. The first leg took us to Dover via Lenham. The group wasn’t too spread out and was going at a reasonable pace when noticed I had a puncture. After years of practice, that was sorted in a matter of minutes and I was back on the road. In all it took me six hours, including a stop to refuel, to get to Dover where the ferry awaited. I had planned to get an hour of sleep on the ferry but I was far too excited so I drank lots of coffee instead! By 10pm we were off the ferry at Calais and were heading towards Paris, 90 miles completed, 180 to go. I had got into a steady rhythm of eating and drinking to keep my energy levels up, however tiredness was setting in having been awake for 21 hours by 2am. Pannone Charity Netball Tournament By 3am it had become extremely foggy. Not only was it tough to see where I was going but even hard to tell if you were going uphill or down. All you could see was a white blanket all around with no idea where you were and little indication of how far to go to the next rest stop. The other weird thing about the fog was how it would alter your body temperature really quick. I think the humidity caused my temperature to drop and I couldn’t get warm – I was actually starting to worry about hypothermia. By then I was fighting the urge to sleep. It was something I had been worried about in the lead up so I had bought some pro-plus tablets and energy gels with added caffeine. With hindsight, I should have slept for 20 minutes at a rest stop but I hadn’t because I didn’t want to lose time. Disaster then struck. I must have had what is known as a micro sleep on the bike. The next thing I knew, I was heading towards a pavement head first. I immediately got up but didn’t feel right and realised I had blood all over me. My bike looked a wreck and the owners of a car that stopped to help looked rather concerned about me. They patched me up pending the arrival of the support team who took me to the next rest stop. Whilst at the stop the team doctor had a look and said I shouldn’t do the next stage as I had a head injury. My bike was in bits too so I couldn’t go anywhere – I was utterly gutted, despondent and wanted to go home. I went with the support team to the next stop and managed to get 30 minutes sleep but had missed chance to cycle 50 to 60 miles of the 280. With that bit of sleep and some warm food inside I felt a lot better. I retrieved my bike from the lorry and got to work fixing it. It was in a mess but with the help of the team mechanic we got it sorted and I was determined to get underway, although the Doctor got me to promise to telephone him and stop cycling if I felt at all dizzy. Having got back on the bike I realised I could get to Paris and that I was going to be okay. I had about 4 hours left to get to Paris, the fog had lifted and the sun was coming out. It was lovely to see some of the French countryside as the foggy darkness meant couldn’t see anything before. I was sore all over but still enjoying the ride despite the pain. I remember seeing the first sign saying Paris and feeling elated. By the time I got to the outskirts of Paris I was feeling jubilant, 4 miles left and how long could it take me? An hour!! The longest and most frightening hour of my life! Every traffic light was against me, the traffic incredible with the worst bit being the Arc de Triomphe. The Arc is one of the biggest most chaotic roundabouts in the world and I had to go round it twice as I missed my turning! Not long afterwards, I was at the finishing line by the Eiffel Tower feeling many mixed emotions. I was exhausted, glad it was over, disappointed to not have completed the full distance but happy not to have hurt myself too badly. Most of all I was amazed at all the support I had received from friends and relatives on Facebook who had been tracking the whole of my trip online. From there I went straight to A&E to be patched up! It has been the most amazing few days after many months of training. I still feel a sense of regret about not completing it but I am really pleased I picked myself up and got back on the bike when I could have easily given up. I have had some amazing support, from words of encouragement to donations on JustGiving. It has been the experience of a lifetime (until I do the next one!) and I’m so pleased to have raised a fantastic sum for Mesothelioma UK.” David raised an amazing £2,360.00. Pannone part of Slater & Gordon held a charity Netball Tournament. The tournament was held at Wright Robinson School in Manchester to raise money for both Cancer Research and Mesothelioma UK. The ladies who took part were Dee Williamson, Lynsey Robinson, Clare Morton, Moji Sobowale, Annabel Toleman, Zita Spencer, Lewis and Lauren Woodworth. We Rachel Craig and Jeremie Gayout from Pannone part of Slater & Gordon also ran a charity tuck shop at the tournament also. They raised an amazing £756.00 which was split between the two charities and each received a wonderful £378.00 Rebecca Jones & The Novum Team “On the 27th September, myself and colleagues from Novum Law took on the Yorkshire Three Peaks Challenge. The Yorkshire Three Peaks Challenge involves the excruciating task of climbing the peaks of Pen-y-Ghent, Whernside and Ingleborough. These peaks form part of the Pennine range, and encircle the head of the valley of the River Ribble in the Yorkshire Dales National Park. The aim was to complete the walk in under 12 hours. The walk covers a distance of 37.5 km (23.3 miles) to 42 km (26.1 miles) (depending on the route) with nearly 1,600 m (5,249 ft) of ascent and descent. We raised a fantastic £515.25.” Fa la la la la la la la la!! Merry Christmas.... Mesothelioma Newsletter - Winter Issue 2014 11 Ju dit h T h oms o n ra n t h e G re at No rt h Run a n d ra is ed a £1,546.6 n am a z ing 2 in me mo r y of he r d e ar cou s in A u dre y k h w ic k t o o K ay B o rt e Th ame s p a rt in t h lle nge a n d Pat h C h a o n de r f u l ra is e d a w £300.00 p r il a rt - A H y d n A L o ndo n 2015 hon M a rat Tim Arg y le - 2015 L e ic e s te r to Sk e gne s s Ch ar it y Bik e R id e in me m or y of Ge of f A rg y le p r il kbur n - A Ste ve C o c lat h o n 2015 Du a C a r la Fit zge ra ld Th e 201 4 L o ndo n S an t a R un p a rt ss to ok lo B ie Way Mar Vik ing in t h e ge and n h a lle C g n li 0 C yc £120.0 ra is e d Ch ar lo – H a t te H a z e lf M a rat ldi ne me m h on or y in of N an A u dr h e r de a r ey G u n ne e ung t o o k St u a rt Yo and o ve m b e r p a rt in M f o n de r u l ra is e d a w £62 .50 Al ic e h e ld Bro c k m a aM n ini Mus ic Fe at u re sti v and ra ise a l a f an t as £21 t ic 2 .00 p a rt e ns to ok H o ll y C oz u r R u n in in t h e C o lo £251.25 Br igh t o n R ich ard Cl uf f to ok pa rt in th e M a llo rc a Iron M an ch a lle nge in memor y of Ch ri s Bea n £557.68 o lt by Va ne s s a H in t h e t o o k p a rt Sp a rt a n Yo r k sh ire 61.25 Sp r in t £7 Kate Paulwel l, Heidi & Rory - April 2015 Brighton Marath on in memory of Kate’s lovely Dad s to ok Th om a gh y r r o C t h e To u p a rt in u t h We s t r So Mu dde o r y o f h is e in m m ra ld St o ne ad G e lo us G ra nd a f abu d e is a and r 5 £344.0 5 b o x – 201 Te r r y Ta r e r ’ ‘To ugh ‘H e ll R u n n at o n do n’ ‘R Mu dde r L r S. gh Mu dde R ac e’ To u er ugh Mu dd L o n do n’ To n’ SW L o n do son Th om l H a l f y n Je n Br i s t o 25 11. the ra n t h o n £7 a Mar Be t h a n y H u n te r Sk D ive d a n d ra is e y da f an t as t ic £542 .0 0 in me mo r y of he r am a z in g G ra nd ad K ay le igh H a rde n – S k ydive M ay 201 5 f or my f r ie n d s lo ve ly Mum Ja ne t H a ll – De c e m am-Ev in b e r ‘Br in g& Bu y’ s a le at h o me a n le y a n d H e le n a St 5 te s – 201 Alid a C o a Tr iat hlo n s h H ig g in Ashle ig k ne y H a lf H ac - 2015 rat h o n Ma a lle rs G il li a n Black a ll o f W t a 2015 G re e nge fo r C h in a C h a ll rf u l Dad h e r wo n de n did a Da is ie No la is e d a a nd ra S k y D ive £526.25 f a b u lo us 12 Pau l H Bi r m i o l l o way n gh a R u n £ m BUPA 550.3 6 Mesothelioma Newsletter - Winter Issue 2014 n a n d h is Dav id L a r le x ra n bro t h e r A mo r y o f 10k in me ve ly Dad Ste t h e ir lo ve £445.00 Th om as Bu tle r’s 20 15 Great No rt h Ru n a rd s Faye Ed w 2015 - M a rch H a lf L ive r p o o l n M a rat h o H a n n ah H ay wa r ra is e d £ d 143.75 at t h e C h e lte n h am H a lf M a Ke ith Cru den Sta nda rd Ch artere d Ma rat hon Singap ore £119.88 Mesothelioma Newsletter - Winter Issue 2014 13 The Royal Marsden School Fulham Road, London SW3 6JJ Tel: 020 7808 2900 Email: [email protected] www.royalmarsden.nhs.uk/school Cuckoostones Challenge Walking In The Peak District And The Manifold Valley “My younger sister Clare was diagnosed with mesothelioma just before Christmas 2013. After nearly 3 months of hospital appointments all around our region, differing opinions, tests and investigations a diagnosis was made. The diagnosis when it came was quite unbelievable as we had no reason to believe she had ever been exposed to asbestos. Once Clare had a diagnosis Mesothelioma UK were in touch with her and the help and support she has received from them has been amazing. As a nurse, I of course had an awareness of mesothelioma but had never had any experience of the charity, it’s work an dhow it is funded, Having become aware, initially my niece Clare’s daughter, the I and the rest of the family were galvanised into fundraising for the charity. As a keen walker and having the facilities to hold an event, I proposed that I would arrange a sponsored walk, not envisaging how it would take off or how much planning it would require. From the initial concept we soon had a great deal of interest then had to restrict numbers when it looked as if we might not be able to manage the event as numbers grew, at the same time not wanting to reduce the fundraising capability. As the day drew near and the weather deteriorated the walk was in jeopardy, I began to think we might have to cancel the walk, however the day dawned bright if a bit windy. Apart from losing a gazebo in the wind, an issue with parking due to a wet field and the route becoming very muddy in places, all went well. The last walkers returned just before the first shower of the day and were greeted by a beautiful rainbow over the valley. The event took place on the 19th October and I had devised a circular walk with options to suit all walking abilities, 70 people attended the event which included marshals, walkers, supporters the caterers and their children. Dates to be confirmed – Register your interest now Mesothelioma Practice in Cancer Care (on-line) This module critically examines the complex nature of mesothelioma, exploring the advanced practice skills required to care for and manage the subsequent impact of the disease on the patient and family, with particular reference to the implications for carers after the patient’s death. This is an innovative e-learning module developed specifically to address the care of the patient and family affected by mesothelioma. It will provide students with the necessary specialist knowledge and skills to care for patients with mesothelioma throughout the disease trajectory. The module is delivered as an elearning package, where students use an online forum (Moodle) to access resources, discussion forums, activities and e-learning materials. This provides the student with the opportunity to work flexibly, collaborate with other students whilst being supported by tutors who facilitate on-line learning. Who is it for? Health and social care practitioners Duration Equivalent to 5 days delivered on-line Dates This module will next take place during the academic year 2015/16. Dates to be confirmed. Cost To be confirmed for academic year 2015/16 Academic credits 15 credits at level 6 (degree) or level 7 (master’s) Assessment Level 6: Poster and 1,750-word essay Level 7: Poster and 2,250-word essay Clare was well on the day and managed the main marshal point with her youngest daughter for the whole of the day. The youngest participant only 9 years old walked 6 miles raising £50.00, the oldest ran the 10 mile option, 55 people in all completed 3, 5, 6, or 10 mile routes, everyone returned to base without incident and we all breathed a big sigh of relief. Hot baps, a variety of cake, cups of tea and glasses of beer were served and enjoyed by all. A total of £2,700.00 was raised which far exceeded all our expectations. Thanks to walker, helpers, sponsors, cake bakers and all who supported the event. A big thanks to Stanedge Grange Butchery, Sainsbury, Leek and Whims Brewery Hartington for donating the refreshments. Country Attire ONLINE, Sera Bistro Leek, Buxton Opera House, the Duke of Buxton, Longnor Fish and Chip Shop, Hair and Beauty Dept, Buxton and Leek College and the Tap House Buxton for raffle prizes which all helped to make the day the success it was”. By Estelle Wall Key topics • Diagnostic difficulties • Supporting patients and carers through treatment and non-treatment options • Psychological impact of disease related to exposure to toxic substance • Spirituality, harnessing positive thinking and hope • Challenges for health care practitioners in caring for people with mesothelioma • End of life care • Ethical considerations Pete Attewill 100K Cycle Ride “On Sunday 14th September I took part in a 100km cycle event for Mesothelioma UK Charitable Trust in memory of my amazing Dad Jack, and to support the charity for the support they give to those suffering with this disease and my target is to raise a £1000. My Dad sadly past away 5 years ago having been exposed to asbestos and then diagnosed with mesothelioma, he was the most courageous and brave person I’ve ever met and I did this challenge for him.” With the help and support from family, friends and colleagues Pete raised over his target £1260.91. Entry requirements Applicants should currently be caring for patients with lung cancer and/or mesothelioma. This stand-alone module also forms part of these programmes • BSc (Hons) in Cancer Care • Graduate Diploma in Cancer Care • Post Graduate Certificate Healthcare Practice (Cancer) • Post Graduate Diploma Healthcare Practice (Cancer) • MSc Healthcare Practice (Cancer) To apply Please complete an application form and return it to the School. Application forms can be printed from our website or requested from the School. Team “Make-A-Difference” Bristol Half Marathon 2014 On Sunday 21 September 2014, Rachel Smith, Sian Fletcher, Tina Churchill (from the Adult Oncology Team at the Great Western Hospital, Swindon), Graeme Chisholm and Tony Grady (of Novum Law) ran in the Bristol Half Marathon to raise money for Mesothelioma UK. This wonderful team raised a fantastic £872.42. ‘Mesothelioma UK - BLF Mesothelioma Research Grant’ The British Lung Foundation are inviting applications for Mesothelioma UK’s 1st Annual Research Grant. The research may be either laboratory based or clinical, including epidemiological and/or palliative care studies into mesothelioma. Grants are for a specified period of up to three years to a maximum of £150,000. Applications may seek costs for personnel, equipment and consumables where appropriate. The grant-holding institution must be based in the United Kingdom. The closing date for applications is Monday 2 February 2015. For further details regarding all funding streams, and to download application forms and guidelines, please visit: http://www.blf.org.uk/Page/Available-grants Lieutenant Norman Middleton a retired World War 2 Veteran was born on 15th June 1921 and died 22nd August 2014 aged 93 years old. His lovely family have very kindly donated £100.00 from funeral collections in support of the work Mesothelioma UK do for patients and their families. Mesothelioma Newsletter - Winter Issue 2014 15 Charity Football Match and Night in memory of James Edwards “Sadly we lost are lovely Dad to mesothelioma so we decided to organised a charity football match and charity night to raise money in support of Mesothelioma UK. Our dad was loved by so many and is so dearly missed. We would like to thank everybody that played in the charity football match and for all the donations that was collected on the night which without these wonderful people it wouldn’t have been possible” x love from all the Edwards family x The Mesothelioma UK Charitable Trust exists to raise funds to support the services provided by Mesothelioma UK and any sponsorship, grants or donations made to the charity support this. Mesothelioma UK Charitable Trust would like to thank all of our wonderful sponsors. If you would like to find out more about becoming a Corporate Partner or Friend contact our Fundraising Manager Jill Lemon on 0800 169 2409. Agenda For Justice Supporting People Diagnosed With Mesothelioma I attended a gathering arranged by the Greater Manchester and Cheshire Asbestos Victim Support Group. Kate Green, Shadow Minister for Disabilities and MP for Stretford and Urmston gave the address passionately calling for “Agenda for Justice” and supporting people diagnosed with mesothelioma. She pledged the support of the labour party for a fare deal. · · · · · Guaranteed and sustainable funding for mesothelioma research funded by a levy on insurers and matched government funding. 100% compensation for asbestos victims No more cut-price deals with insurers No cuts in compensation for mesothelioma victims No more secret Government deals with insurers proper protection at work from asbestos and other health hazards Lorraine Creech Senior Clinical Nurse Specialist Mesothelioma Mesothelioma in Australia 2013 The Australian Mesothelioma Registry (AMR) has been operational since 2011. It contains information about people diagnosed with mesothelioma in Australia since 1 July 2010. The AMR also has a voluntary component that enables the collection of asbestos exposure information directly from people who have mesothelioma via a postal questionnaire and telephone interview. The AMR is a national registry involving all Australian cancer registries. It is funded by Safe Work Australia and Comcare, and managed by the Cancer Institute NSW in collaboration with the Monash Centre for Occupational and Environmental Health. The recently published annual report of the AMR includes 575 notifications of mesothelioma for the 2013 calendar year, received by 31 May 2014. This figure is an underestimate as, with late notifications, up to 700 new cases per year are expected. Findings of analyses conducted on asbestos exposure data are presented in the report for 387 participating patients. Of the 575 people newly diagnosed with mesothelioma in 2013, 465 were males and 110 were females, and the majority (80%) were aged 65 years or over at the time of diagnosis. The most common subtype was the epithelioid subtype (47%) and the most common location was the pleura (94%). Australia has one of the highest incidence rates of malignant mesothelioma in the world. The overall rate for 2013, age-standardised to the World Standard Population, was 1.2 cases per 100,000 person-years. Of the 387 people with mesothelioma who completed the asbestos exposure questionnaire, 350 (80%) also completed the telephone interview. Among these: · 213 (61%) were found to have ‘possible’ or ‘probable’ occupational asbestos exposure. · 137 (39%) provided no information to suggest they had occupational exposure. Of those, 114 people were found to have asbestos exposure in non-occupational contexts and 23 people provided no information to suggest they had asbestos exposure above background levels in either occupational or non-occupational spheres. The full report can be accessed at: http://www.mesothelioma-australia.com/publicationsand-data/publications”http://www.mesothelioma-australia.com 16 Mesothelioma Newsletter - Winter Issue 2014