With regard to “Mesothelioma Day” what a brilliant idea.  I whole-heartedly agree with it.  My thoughts at the moment are very bitter and I can’t come to terms with Peter’s death.  I am glad that I can put my thoughts down on paper.  Peter was diagnosed with an Asbestos related disease in January 2005, it was found on his X-rays, he had had a heart attack in October 2004, the very first post brought us the news that there was a spot on his lung that wasn’t right.  After going to the Chest Clinic and having numerous tests and X-rays it was then diagnosed as Asbestos related.  As the months went by, Peter had various C.T. Scans and we were told that everything was going well and the diagnosis wasn’t Cancer, we then breathed a sigh of relief, it was the best news ever.  In May/June 2005 Peter went to the City Hospital for another test which was a needle in his lung, then it was diagnosed as Mesothelioma.  That was a smack in the mouth neither of us could come to terms with that, but both thought very positive and decided that the best thing we could do was not really live with it, but do everything that the Doctors at the D.R.I. advised us.  In September Peter started his Chemo and the news was good, the Cancer had shrunk, then on the 29^th September after having 3 sessions of Radiotherapy everything went “pear” shaped and he became ill, he was admitted into the D.R.I. to receive Blood transfusions and Saline drips, he was there for 4 days, he recovered, not his full health, but managed to live his life.  More Chemo and the Consultant seemed pleased with him, but Peter couldn’t get rid of the fluid from his feet and legs, then he had to have Oxygen cylinders to breathe, but we were told that the therapy probably had scorched his lungs.  Wednesday Peter was exhausted and stayed in his dressing gown which believe me was a thing unheard of, he seemed a bit better on the Thursday and laughed and joked with me and got up for a couple of hours.  Friday I said I was going to get the Doctor as Peters legs were really swollen up, but he said don’t bother try tomorrow.  Saturday morning I phoned the Doctors up only to be told that there was a 6-hour wait. Then a Doctor phoned me and told me that if anything untoward happened I should get an Ambulance, it still didn’t click with me.  The Doctor did come to see Peter at about 11.00 am and told us Peter was full of fluid and would he consider going to the D.R.I. to have it drained, which of course Peter agreed straight away, the Doctor then said it would probably be an overnight stay as Peter had Cancer and would I pack an overnight bag.  I got Peter dressed and downstairs and sat him in the front room, then asked him about his slippers, he looked at me as if he didn’t know who I was, then he went rigid and started to shake.  I phoned for an Ambulance straight away and they were here in minutes, Peter became very violent and on arriving at the D.R.I. had four more fits, and it still didn’t occur to me that this was the beginning of the end.  After waiting about 3 hours we were admitted to the M.A.U. Dept and I was told that all they could do was keep Peter free from pain and comfortable, by then I was in a state of shock, disbelief, anger and could have blown the Railways off the face of the earth.  From admittance on Saturday 3^rd Dec. my Darling had died, within 23 hours, we were all devastated, just not believing it, all in a complete state of shock.  Then you have the awful task of phoning your family up and giving them the terrible news.
 
I asked the Doctor what Peter had died from but of course he couldn’t tell me, and when I asked about a post-mortem I was told that I would have to ask for one. I rang numbers in a booklet I was given and was told that because Peter had died from an Industrial Related Disease he would have to have a post-mortem whether I wanted it or not.
 
The Post-mortem was carried out on the following day, and we were told that he had died from Mesothelioma.  On the Wednesday we had to collect the Death Certificate as we thought, but then found out that we had to attend a mini inquest, there were the usual questions and then we were told that until the Public Inquest was done we wouldn’t be able to collect the official Death Certificates, that was a real blow to us, as we would have to go through all the questions again, we were given Interim Death Certificates but they are not recognised by the Registers of Births and Deaths, so poor Peter hasn’t been registered as dead, that is very hard and to be honest doesn’t bear thinking about.  All we have seemed to do these last 4 weeks is wait.  My thoughts, anger, sheer disbelief, hatred of the Railways, and I feel as if I have been cut in half, it has affected my family, we have always been close so I can’t say that it has brought us any closer. 
 
I do want to thank all of you for your help, without you to guide us through this I don’t know what we would have done.  We were at rock bottom when we received that piece of news but you stepped in and helped us.  There are so many things that you helped us with, having the Doctor come to see Peter instead of us trying to struggle to Leicester to see him, big steps for us but you soon brought them down to size.  Helping us fill forms in – how many?  Pointing us in the right direction, I could go on and on.  Thank you for coming to say Goodbye to Peter at his funeral, I was so happy to see you both, it was a heck of a way to come, but that’s the kind of people you are.  Pete was so proud to know you and go to the meeting when he could. 
 
Joan Chambers
 
 
 
My husband, Alan Anthony, died on the 27^th May last year (2005) ten weeks after first showing symptoms of what we discovered to have been Mesothelioma.
 
Alan was seventy-two years old, but had been extremely fit until mid-March 2005.  In January last year we were on holiday in Gran Canaria and went swimming in the sea; in mid-February we were walking in the Peak District and climbed a steep hill opposite Ilam House; at the end of February we were in London visiting an art exhibition.  During all of these activities Alan seemed well and showed no signs of breathing difficulties.  In mid-March, however, he developed bronchitis, which his GP treated with antibiotics and from which he seemed to recover by the end of the week.  That weekend, however, while doing a regular walk with the dog, he became very short of breath and on the following Tuesday, 22^nd March, he was admitted to the Derbyshire Royal Infirmary with a blocked right lung.  This was evidently a pleural effusion and during that week the fluid was drained from his right lung.  The following weekend was the Easter Bank Holiday and there was to be a significantly reduced staff in the hospital, particularly doctors.  Alan was therefore sent home.
 
At this stage it was not possible to determine the exact cause of the pleural effusion and sending Alan home was not in itself unreasonable, but he should have been told that, if his symptoms recurred, he should return to hospital immediately.  As it was, although the extreme breathlessness recurred almost immediately, we did not realise the possible seriousness of the condition and did not return to the hospital until the following Friday.  Again, because it was the weekend, there was a reduced number of doctors on duty and the specialist respiratory doctors were only available on call in the event of an emergency.  As a result, Alan did not have a biopsy until the Tuesday of the following week and then we had to wait a fortnight for the results of that.  Finally we were told on 19^th April that he had mesothelioma.  The weekend after that, he was transferred to Glenfield Hospital in Leicestershire which is at the forefront of treatment of mesothelioma.  Alan apparently had an aggressive form of the disease, however, and by the time he was treated there it was too advanced for him to benefit from the process called “debulking” which might have prolonged his life.  By the time he saw an oncologist, he was also too weak to withstand chemotherapy and he died just over a week later.
 
While I was aware as soon as we were given the diagnosis that mesothelioma is not an easily treatable cancer and know it was a terminal illness, I had expected him to live longer and indeed the average life span for those with this illness is several months.  I therefore feel strongly that the lack of urgency shown at the hospital may have contributed to the rapid progress of Alan’s tumour, which I have discussed with the hospital.
 
All of the doctors at the hospital seemed competent and caring, but I do feel that, even amongst medics, there needs to be a greater awareness that the disease can take aggressive forms and that time is of the essence.  If prompter action had been taken, Alan could have had the biopsy a week earlier and the results of the biopsy could have been produced at least a week earlier.
 
I feel very strongly that information about the illness needs to be more widely broadcast.  Alan was not an obvious candidate for this condition as he had worked all his life as a Modern Languages teacher and lecturer.

He also disliked DIY and did very little in that line and so the source of his contact with asbestos is something of a mystery.
 
He did, however, work at a school where a ceiling had collapsed but before he went there in the 1970s.  Removal of debris and building works continued during his time there and this would seem to be a possible source of contamination.  I mentioned this because cases of mesothelioma are increasing and it is vitally important to be aware of potential dangers, particularly in 1950s and 60s buildings when asbestos was still in regular use.
 
I have been devastated by the sudden and unexpected nature of Alan’s death.  Our relationship was one of love and friendship in which we shared a whole range of intellectual and domestic activities.  The sense of loss is enormous and I also grieve for him because he was enjoying life so much until the end of March last year.  If we could have had some extra months, I do feel that would have helped.
 
It is essential that more is known about mesothelioma.  It seems to me that it is one of the least publicised cancers and I admire the work of the Derbyshire Asbestos Support Team in seeking to counter this.
 
Carol Anthony
 
 
 
 
Gordon Rhodes of Cheadle, Staffordshire was diagnosed with Mesothelioma in the Spring of 2005.  His employment history in the Building trade involved him working with asbestos. After his diagnosis his physical deterioration was devastating and depressing to his family who had previously expected Gordon to live well into his 80s because of his many interests and a general zest for life.  He spent four months in a Douglas Macmillan home before moving into an NHS hospital for the Elderly and Terminally Ill. 
 
His diagnosis was quick.  The Doctors suspected the condition when they looked at his first chest X-Ray but he did have to go for a biopsy before they confirmed it.  The worst occasion for us all was when we were told that nothing could be done for my father other than nursing care and pain control which is the treatment he has continued to have.
 
As a family we feel that although there was much ignorance about asbestos when he worked in it, more could have been done even before the mid 1970s as some voices were raised as to its dangers.  Also the very fact that we had never heard of Mesothelioma until the day of my father being diagnosed with it shows a lack of information about the condition and its devastating affects.
 
Alan D. Rhodes (Son)
 
 
 
 
 


 
When Maurice was first diagnosed with Mesothelioma at the end of April 2005, we were devastated and were told to get our affairs in order.  We were then given a little hope that it hadn’t spread and was transferred to Mr. Waller of Glenfield, and they would operate on the left lung which could give him up to four or five years longer.  For six weeks he had a lung drain on.   The operation was cancelled three times.  On the 5^th July he was finally admitted, only to be told the next day that the disease had spread, then the news given that Maurice had up to a year to live was even more distressing.  On 7^th July he saw registrar which was to build his hopes up yet again that there was the new Alimta drug which could help and there wouldn’t have been any problem in receiving the cash for it.  After letters, phone calls and Maurice’s doctor stepping in, it was finally agreed.  September was admitted for treatment after further scans.  I was informed that they thought it had spread to other parts of the body and to his bones and they didn’t think his heart could cope with the chemotherapy.  Anyway they decided to go ahead with it.  He only had one session, which didn’t really help.  When discharged he seemed to get worse and was on high dosages of morphine and oxygen.  So from diagnosis to Maurice passing away it was just five months.  I have no bitter feelings against the company in which my husband was exposed to asbestos as I don’t think any company was aware of the risk thirty or forty years ago.  Maurice was one of the unfortunate of many.  I don’t think there is enough information about asbestos.   If we hadn’t contacted DAST, we wouldn’t have realised the impact this terrible disease had in people and their families who had worked with it.  So for me and I know Maurice would agree, you were more help to us than anyone. 
 
My anger is still with the hospitals, they knew there was no cure but kept giving hope only to be followed by disappointment.

Monica Young
 
 
 

 
Alwyn was admitted to Burton hospital in June for an effusion.  He had more than 2 litres of fluid taken away.  By this time he had lost a lot of weight and was very breathless.   Over the coming months Alwyn had 3 biopsies.  The first two were inconclusive evidence.  The third proved Mesothelioma.
 
The Consultant explained the findings and told Alwyn he was not strong enough for chemotherapy but would go to Birmingham for radiotherapy.  This was now October 2005.  The beginning of November Alwyn travelled, by hospital transport, to Birmingham for five days.  It left him extremely tired and his breathing did not improve.
 
Alwyn fought the tiredness as long as he could, but he could not do anything without being breathless and tired, so he ended up staying in bed.  The doctors and district nurses were very good, coming every day.  I did not want Alwyn to go in hospital so I looked after him.
 
When Mesothelioma was diagnosed we were both so shocked.  We discussed it between ourselves but could not tell our friends and family.  We decided that whatever treatment was available Alwyn would take it.
 
We did not feel any animosity to the firm where Alwyn worked with asbestos, it was part of Alwyn’s job.  There were no masks or any protection.
 
From November Alwyn lost the muscles in his legs and by this time he had lost further weight.  His breathing was still erratic, but he never complained.  He was taking a lot of painkillers and oxygen. Alwyn fought hard to see Christmas.  Although he could not eat a lot he had a Christmas dinner.
 
On 28.12.2005 at 1 am Alwyn’s breathing was terrible.  By 8.30 am the doctor and nurse came and they said he was semi-conscious.  I sat with him and talked to him.  He was trying to say something but I could not tell what he was saying.  Then fluid started coming from his mouth.
 
The DAST and our friends Tony and Janice were always there for us.  I don’t know how Alwyn and me would have carried on without their support.
 
I feel the desolation very much.  We had 46 happy years full of doing things we enjoyed.  It would have been nice to have had a bit longer together, but Alwyn would probably have had more painful times.  It is comforting to know that he passed away peacefully.

Nellie Parker
 


Ann was initially told that she didn’t have cancer, then a lung operation at the Northern General Hospital revealed problems in the pleural area.  The biopsies were diagnosed in America by the Department of Defence (Washington) as a Mesothelioma.
 
I felt totally inadequate and helpless to help her. My heart cried out to her.
 
I was unaware of Mesothelioma and didn’t realise it was a type of cancer at first.  Then total shock.
 
From diagnosis the disease was very progressive.  We went to tribunal to obtain the higher rate of benefit, we had been turned down prior to this.  Ann lived 3 months after being granted the higher rate.
 
Ann received 1 chemotherapy and 1 radiotherapy at Western Park but was unable to cope with the treatment.  Pain relief didn’t work, but our own GP was wonderful.  Palliative care was very good at Calow and Ashgate Hospice.  Ann died on Christmas Eve 2001 in Ashgate Hospice.
 
Why should this dreadful Mesothelioma shatter our lives and cut short our love.  The years have rolled by, my searing pain remains.  I live in hope of meeting Ann again, in heaven I hope.
 
Eddie Marlow
 
 
 
 
 
We had never heard of Mesothelioma, never knew the seriousness of the illness.  Carl went through hell.  He had worked hard all of his life, dedicated to his job, never smoked, had a healthy lifestyle and thoroughly enjoyed life, until in 2002 went to the doctor because of breathing problems.  He was referred to the Hospital for x-rays and the start of several biopsies, each one coming back negative.  He had scans with the same outcome.  After the last biopsy Carl had, he vowed he wouldn’t have another, as the agony, he went through he thought it was a waste of time.  His words were “it was like being stabbed in the back”.  However, it was the last one because it came back positive.  Our world fell apart.  We were told there was no treatment and no cure.  My feelings were “why us” but another cancer patient said “why not us”.  You have to think about that.  After that things happened so fast.  All our plans for a happy retirement had fallen by the wayside.  The weight dropped off him.  My feelings were seeing such a wonderful loving man suffer as he did.  He felt very bitter.  A bigger shock was to come, as he appeared to have had a stroke, his left side was completely lifeless.  He couldn’t stand, couldn’t dress himself etc.  He was completely reliant on me.  However, it wasn’t a stroke we were told that the Mesothelioma had gone to his brain.  We had been told that it doesn’t usually spread to other parts of the body.  The lack of information available was not very good.  The disease progressed rapidly, just a matter of weeks.  He was given drugs and chemotherapy.
 
The Macmillan nurses were wonderful, so dedicated and so caring.  I nursed Carl myself at home with help from my family.  I was an auxiliary nurse before I retired.  I had to have a bed downstairs but the problem was the toilet was upstairs.    Social Services provided a commode, I was loaned a bath seat and with help from family managed quite well.  As Carl’s condition deteriorated, he was referred to Haywood House Day Centre for 2 days a week to give me a break but I just wanted to be with him every minute, time was so short.  After only 3 days he was admitted into Haywood House (in Carl’s words “the nurses in there are angels”)  Carl passed away on the 14^th July 2003 peace for him at last but I am left with the pain, tears are falling as I write and if by writing this it will make other people aware, I know we are not wasting our time.  I live now for my family and the memory of a wonderful husband.  My soul mate.  Thank you Joanne and all of you at DAST.
 
Pauline Reast
 
 


 
I feel that anything that can highlight the situation when someone, through no fault of their own, is struck down with this dreadful disease is definitely worth the effort we are asked to make.
 
Over approximately thirty years Jim worked at different locations.  Unknown to him and his work mates they were exposed to asbestos.  No protective overalls were provided, or any showers after their work shifts. 
 
In 1993 following a chest x-ray I was found to have pleural plaques, which I believe was caused by having to wash Jim’s dusty work clothes.  As I was unaware of being exposed to asbestos Jim was sent for an x-ray and he was found to have even greater amounts than myself.  Jim was referred to a chest physician who examined him and sent his report stating as he was a non-smoker he only had a 1% risk of developing Mesothelioma.  On this assumption when he was claiming compensation he took a full and final settlement.  He was paid the compensation in the year 2000 – it took seven years.  He had annual chest x-rays and in July 2002 he was found to have fluid on his right lung.
 
It took four biopsies before the correct diagnosis was made.  It took from 17^th July 2002 to 1^st October 2002.  Ten weeks is too long.  I am aware it is a difficult diagnosis to make.  Taking a biopsy is  quite an invasive procedure, after the first one he was in hospital for four days.  We were impatient to get the diagnosis confirmed and treatment started, we thought perhaps as the disease was in its early stages he would respond to treatment better. 
On being diagnosed with Mesothelioma, our feelings were of disbelief at first.  This sort of thing happens to others – not us!  Then, as Jim was a fit man with no lung or heart problems and the disease was at stage one he was eligible for the operation Extra Pleural Pneumonectomy, we felt there was a glimmer of hope.  We were impatient to get the operation done as quickly as possible before the disease moved to stage two.
 
The firms and governments that knowingly allowed the workforce to be exposed to a deadly disease are criminals.  Who takes them to task?  Obviously we were very angry and still are, and the feelings of frustration we were so helpless to do anything about it.  If only he and all the other victims had known the dangers they would not have worked in those conditions.
 
The compensation that Jim fought for when he was diagnosed with pleural plaques in 1993 took seven years to be finalised.  Numerous visits to the solicitor, phone calls and having to have witnesses to vouch that he was exposed to asbestos was belittling in my opinion, and they have the audacity to set the three year rule – can’t claim if you haven’t claimed within three years of knowing about the pleural plaques.  Isn’t there something not right about this?  No amount of money can compensate for such a loss and no one should have to fight for it.
 
Following his annual x-ray in July 02 fluid was found in the right lung pleural space.  Various tests were done and eventually on 1^st Oct 02 mesothelioma was diagnosed.  The radical operation to remove the left lung, the linings of the lung, diaphragm and the heart on the effected side was performed.  Jim survived the operation well and also the radiotherapy which he eventually had. 
 
He was not given chemotherapy as some authorities advocate. I queried when the chemotherapy was starting he said nothing had been proven so he was not prepared to give it.  I pushed for it again a few weeks later without success.  At a stage when I felt Jim was too ill to cope with chemotherapy it was offered to him!    He accepted this treatment but unfortunately was only able to tolerate two sessions, and then it was just palliative care until he died 23^rd October 03, just one year and 22 days post operatively.
 
I think it is very unfair that there is different treatment in different area.  Treatment should not be a ‘postcode’ lottery.  If the reason for withholding the drugs was due to funding I would like to have been informed so we as a family could have pooled our resources and raised the amount needed.  We all miss him so much, hardly a minute goes by that I’m not reminded of him.
 
Jim was a great character, he was nearly seventy when he died but he didn’t look it before his illness.  He was funny and witty, he had many friends from all walks of life.  He loved having the “craic” with his cronies in the pub over a pint.  We enjoyed the lovely holidays we went on and I’m so pleased to have those fabulous memories.
 
I haven’t mentioned all the marvellous people we encountered along the way, ie Our GP was excellent with her care and advice.  Her two colleagues the Practice Nurses and all the reception staff I class as my friends as I have worked with them for more than 25 years. Janet the district nurse, I never asked her to come but was pleased when she did.  Father Leon, the Curate from Holy Cross Church, just knew the right things to say to both of us.  Jim made me laugh when I told him the vicar was coming to see him, he said “I don’t want him to come – I don’t want the neighbours thinking I’m having the last Rites.”  He did allow him to come later.
I found your own team at Derbyshire were brilliant and your advice was very much appreciated.  Hopefully I have mentioned this before and thanked you.  I’m lucky to be a member of a large close family, they all rallied round and still do two years later.  We all know we have to die at some stage, but no one deserves to die from a preventable work related disease such as Mesothelioma or other asbestos related disease.
Sylvia Waddington
 

 
 
 
 


 
“I first became ill at the end of May 2005 with what was thought to be a chest infection, a short course of antibiotics did nothing and my breathing problems when walking became worse and I was sent for an x-ray.  This showed that I had fluid on my right lung to a large extent and I was referred to my local consultant who arranged for me to have an overnight stay in my local hospital for the lung to be drained and to have a needle biopsy.  The samples being sent for test.  The test proved inconclusive.
 
I was sent to see another consultant arranged for me to go to The Northern General Hospital for a camera inspection and full biopsy.  This took place on the 29^th September 2005.
 
Two weeks after leaving Northern General I returned to clinic where I was told that I had Mesothelioma and this was mainly caused by working with or close to asbestos.
 
The only time I could recall coming into contact was at the approximate age of 17 years as an apprentice engineer.  I remembered that the company I worked for had the factory walls sprayed on the inside for insulation.  I was told that would be the likely time-scale of 40-45 years before showing.
 
I have since been in hospital in Leicester under Mr. Waller, Cardio-thoracic Consultant who performed an operation on my right lung and I am now awaiting radio and chemotherapy.
 
I cannot really come to terms with this at the moment, in 2003 we lost our youngest son and on the first anniversary of his death my wife was diagnosed with lung cancer.  I lost my wife in August 2004.  I did not think that anything else could go wrong, how wrong I was! 
 
I feel that I must point out that I received immediate practical help from Derbyshire Asbestos Support Team.  They helped me fill in claim forms and made claims on my behalf and guided me to a good solicitor who is currently looking into a private claim on my behalf.
 
David Keogh
 
 
 


 
 

My husband was diagnosed with Mesothelioma in January 02.  He lived until October 05.  He/we were extremely lucky in this area.  Papworth and Addenbrooks hospital in Cambs were excellent and he was denied nothing.  The hospital staff could not have been kinder.  Our Macmillan Nurse, was so professional and marvellous to both of us and enabled me to keep my husband at home to the end.  I choose to believe because of her he was totally unstressed, at ease with himself and died very peacefully because of her advanced planning.  We were immediately offered legal help – it lead to no compensation – but at least we were able to go down that road and given the opportunity.  All of this makes it obvious we are in a very good area for help etc.  It is a very stressful situation.  The post mortem proved my husband had nothing wrong with him, other than Mesothelioma at 68.  He should not be dead.
 
I would like to point out how incredibly caring and obliging the Coroner and Coroners Clerk were.  My sister-in-law was returning to the States on 24^th October.  As John died late night on 13^th October, with the weekend in between it was asking an awful lot to get his post mortem and funeral (cremation) completed to have the funeral on the 21^st October.  The Coroners Office must have fast tracked everything and we were able to go ahead on 21^st October.  The following week the Coroners Officer at Bury St. Edmunds phoned and asked me to write a report for the Coroners inquest, and provided I was in agreement, it would be on 15^th November.  I did as they asked and the Coroner returned a verdict of Industrial Disease. I was really pleased as one company John worked for refused to accept he ever worked with asbestos and the first company said they had no record of insurance etc.  However, I and the family were satisfied with the results. 
 
I feel so terribly sorry for all those patients who must have to fight for help and treatment.  My husband was an auto electrician and I have positive proof that it was asbestos in starter motors.   I would be prepared to let anyone who needs proof a copy of our flyer.  It just might help a claim. 
 
A friend passed on your letter and charter.  Her husband and mine were friends and went through their treatment together.  Her husband only survived for 2 years and died in May.  Their illness has resulted in we women becoming firm friends – but what a loss!
 
 
The photograph, taken on 2^nd August 2005, shows John (on Ann’s birthday) – just 2 months before John died.  He had lost weight but looked well, fit and was able to get out and enjoy himself.  This was the last one taken of him.  

Ann Betts


It was April 2003 and it was under two weeks before we were due to go on holiday to Mexico.  Jim had been feeling increasingly breathless for a few weeks so when he went to the doctors for a repeat prescription he decided to mention it.  The GP sent him for an X-Ray which revealed fluid on his right lung.  An urgent appointment to see a specialist was made and the holiday had to be cancelled as the fluid on Jim’s lung made it dangerous to fly.  That turned out to be the least of our problems.
 
We attended the chest clinic on 24^thApril and a sample of fluid was taken for testing and a brondcoscopy carried out.  At a later appointment the results were discussed and we were told that Jim had a non cancerous reactive nodule. He was booked in for a CTScan and an appointment to have the fluid drained.  After that we were sent a letter to say the scan had identified changes and we were to be referred to Glenfield Hospital in Leicester.  On the 20^thMay we attended Glenfield Hospital and saw Mr Waller who advised us that he believed Jim had Mesothelioma although we were told that it was difficult to diagnose.  We had never heard of it but we knew it was very serious.  At that point our whole world caved in and was never to be the same again. 
 
Jim was admitted on June 3^rd for an operation in order to diagnose the disease for certain.  There followed an extremely stressful and anxious 10 days waiting for the results which confirmed Mesolthelioma.  As the consultant talked to us it was almost like being in a film - very surreal as though he was talking to someone else.  We were left in no doubt that without treatment he would be dead within 9months and that with treatment it would still be terminal.  No one survives this dreadful illness.  Fortunately following tests Jim was deemed fit enough to undergo radical surgery to remove his right lung and lung and diaphragm lining.  This was a high risk operation but Jim never considered not having it as he knew without  it he would soon be dead.  The operation went ahead on 23^rd June and thankfully was successful. This was followed by a course chemotherapy which started in August and was completed by the end of October. 
 
Once Jim had recovered from this he was off, he was determined to pack as much into whatever time he had left.  We travelled extensively and even managed to go on three cruises, on the first one we were married by the Captain and it was a very special day for both of us. We enjoyed our time together so much, but the fear was always hanging over us knowing that at any time IT could be back and destroy everything.  Living with the disease was difficult but we were grateful that we had been given some time together as we knew others were not always that lucky.
 
 
Jim got pneumonia in May of 2005 and it was eventually confirmed that the cancer was back.  Jim died very unexpectedly on 27^thAugust and my life will never ever be the same again.  Jim was the love of my life and my soulmate and I miss him dreadfully, but I hope that eventually I will be able to comfort myself with the many wonderful memories I have of our life together.
 
I am only 50 and am a widow it is not really what you expect.  People are still being exposed to Asbestos on a daily basis and many people have no idea what it actually looks like or realise how deadly it is.  No one I have spoken to had heard of Mesothelioma, Asbestosis yes, Mesothelioma no.  The Government knew in the 1920 and 1930s that it was dangerous and did nothing about it.  Jim was just a plumber who loved his job and worked hard, he didn’t deserve to die doing it.  He left behind three sons and four beautiful grand daughters who he will never see grow up. Somebody should pay for that and more research must be done to try to find a cure.
 
Marie Neal
 
 
 
 
 
 



During Summer 2005 I was finding my work as a self-employed plumber and heating engineer (now mainly concentrating on gas work) harder.   It was taking me longer to complete installations;   I felt tired by the afternoon and my toolbox felt much heavier than it used to.  I got short of breath going up stairs and when walking – which was unusual because I loved walking and had done a lot of it, we lived and loved the outdoor life.
 
So, at the end of July 2005 I made an appointment to see a doctor.  After a quick once-over he told me to lose some weight.  I was no heavier than I had been for many years but thought he knew best and tried to cut down on food.  However, my breathing got worse and after about five weeks revisited the surgery to see a different doctor.  This time the doctor sounded out my chest thoroughly and sent me for an x-ray immediately.  This was on a Friday afternoon and I received a letter from the doctor’s surgery on the Saturday morning asking me to contact him as soon as possible.  Not a good weekend at all!
 
On the Monday I was sent to Kettering General Hospital and there they drained approximately two litres of fluid from my pleural cavity, which was quite a painful experience!  Whilst I was there the doctors were asking various questions and the word “asbestos” kept appearing.  I had started worked with it over forty years ago but thought, wrongly, that I had escaped the harmful consequences of it.
 
About three weeks after that I was sent to a consultant who told me that he thought I had an asbestos related illness and he would refer me to a surgeon as soon as possible.   Another three weeks passed before I saw the surgeon who said I would have an operation at Leicester when they would put a camera into and around my lung cavity to investigate and to seal the pleural cavity to prevent fluid build-up.   On 27 November I went into Glenfield Hospital for the biopsy -  four months after my first visit to the doctor!  In the hospital they gave my wife and I books to read on Mesothelioma – our first cold inkling of the cruelty of the disease!   On return from the hospital I went to see the consultant and he told me that it was Mesothelioma and, with a nurse present, gave my wife and I the cold facts of the short life span expectancy once diagnosed. 
 
We were devastated – I am 57 years of age, as is my wife.  Our children had flown the nest and we had just started preparing for early retirement, after nearly forty years together.  We had purchased a caravan and an estate car to pull it and planned to have most weekends away now we had enough time and money to do what we wanted to do. I am a Town Councillor and, at present, Deputy Mayor, and will be the Mayor next year.  We felt so angry and cheated – why me?    What had I done wrong?   The answer was not what I had done wrong but what my employers had done wrong. I worked for a big construction company locally from fifteen years of age and when I was about seventeen was using asbestos regularly – in mixing compounds, ropes and roofing sheets.  No Health & Safety Executives told the employees to use masks or protective clothing.  The material was cheap and used in all parts of the construction industry.
 
I also felt angry that the government had not told the companies not to use the material once they found it was a dangerous substance – in about 1939!   I was using it in the late 1960s and early 1970s.
 
So, I became ill and unable to work.  I had been self-employed for many years and therefore, as well as being ill – had no income.   I had enough plumbing and gas work – if I was well enough to do it – to keep me in full time work constantly.  It was an extremely worrying three months – to be told you have a terminal condition is bad enough but to be told that you will never work again was quite distressing  My wife was, therefore, unable to stop work to be with me until we were sure we would have some form of income.   Income Capacity Benefit kicked in after a few weeks, the problem being that I was self-employed. Once DAST became involved – my benefits were soon sorted – this took a load off our minds!  Nevertheless, this is still far short of the income we would have enjoyed from my trade for the remainder of a normal working life.
 
 
                                                           


My dear husband Frank started losing weight and saying he had indigestion, taking all kinds of remedies.  The weight was just dropping off him.  In March 2004 he went to the doctors who put him on antibiotics for two weeks; still in pain he went back again two weeks’ later.  Another course of antibiotics, still not working.  Six weeks had passed.
 
Next he was sent to hospital for a scan after waiting a few days we returned to hospital for results.  “Could not see anything” they said.  He was put in a ward with about eight beds.  We felt happier because he was!.  After two or three days he was put in a corner, they said “we think he has TB”.  In there about eight days then home with lots of tablets and medicines.  He could do nothing because he was in so much pain.
 
Next he had a camera down his thoat.  We returned for results.  The doctor came through smiling and said “all looks fine”.  We felt better.  They could not find anything.  We thought all the tablets he was taking would clear everything up and make him better.  Getting worse now, another biopsy.  Waited five weeks for results which we got in July 2004.  It was then the doctor told us it was terminal.  You have mesothelioma.  We were absolutely dumbstruck.  There was nothing they could do for him, only in there 10 to 15 minutes but he made an appointment for Frank to have chemo where the needles had gone into his skin for the biopsy.  We went and sat there for about one hour and Frank was very poorly.  When we eventually saw the doctor he said “I can’t do anything because I can’t see where the needles went in”.  Two days later he went into Ashgate Hospice for about 2 weeks.  He came out with all new tablets and morphine, plus the Macmillan nurse came every day.  She was brilliant, helped us with everything.
 
One day she came and Frank was outside on the back yard walking up and down picking up chairs, putting them down, really agitated.  He didn’t know what he was doing.  She rang the hospice and he was taken straight back in.  It was terrible to see him.  We were all heartbroken.  They gave him morphine and more morphine and then he died, 22^nd September 2004.  My family and me will never be the same again.  We all worked together, did everything together.  He was the rock of our little family.
 
I must mention John and Joanne at DAST, they have been very wonderful to us and continue to support us.  As Thomas Fletcher & Co. of Mansfield went out of business in 1976, it is proving very difficult to find the insurers.  Frank worked at the Company on a tunnel at New Bevercotes Colliery using bags of blue asbestos which they blasted through the tunnel. Its 16 months now since he died and I still cannot believe he has gone.  I cannot settle into things.  Our little business, A. J. Miniatures, has gone, he helped us with it.  All his tools are here, his coat still hung on the door.  We have no heart in it now.  A big light and leader in our lives has died out.



The PETAL guide to recovery from a major operation by Graham Sherlock-Brown (September 2006)
 “Major operations can have an unimaginable impact on your life.  Whether it be the result of an accident, injury or a disease (in my case, cancer), operations can totally change your lifestyle.  Major illnesses can have a similar effect if you do not achieve a complete recovery.  I had an Extra Pleural Pneumonectomy (removal of right lung, chest wall, diaphragm and part of pericardium) in October 2002, to try to ward off the effects of Mesothelioma.  Having recovered my quality of life to a significant extent, I feel qualified to impart some guidelines on how to do this.

 P – is for Positive Attitude. 
This is key to everything that follows.  Without it you probably won’t bother.  But you only have one life so you have to decide quickly how you want to spend the rest of it.  Addressing it with zest and positivism is, in my view, the only way to regain any sort of quality of life.

 E – is for Eating properly and Exercising well.
Even if you’ve never done it before it is never too late to start exercise.  If you only have one lung left you are down to half capacity so you have to get the remaining one into good shape to stand any hope of recovering your quality of life.  Only exercise can do this.  It isn’t easy, it takes a long time and you cannot rush it but I can vouch for the fact that it is worth it.  Your immune system is fundamental to any prospect of long term survival so you have to look after it.  Healthy eating and drinking is key to this. 

 T – is for Targets.
The recovery process can seem so long and tedious that you may wonder if it is worth it after a while.  Setting targets helps enormously in demonstrating that you are improving; achieving them does wonders for your attitude.  In my case I had both short and long term targets.  The short term ones were mainly on the exercise front.  It helped that I was used to having them anyway but I had to start from scratch after the op.  The simple one was the number of calories I could burn off in ten minutes on a treadmill.  I started at around 70 three years ago and have now reached 150.  I can also run again for short periods which I haven’t been able to do since the op.  Walking was initially painful, especially up small gradients; even climbing the stairs.  Now I can climb mountains.  The point is that without targets you may not know if you are getting any better and that can be a big disincentive.  Two long term targets were to become a grandfather (my granddaughter is now nearly two and absolutely wonderful) and to see my 60^th birthday (celebrated in August 2006).

 A – is for Adaptability.
Having a major operation causes so many changes that you have to adapt to them very quickly to avoid being consumed by your inability to cope with life.  For instance, I was no longer able to work, I couldn’t do the sports I loved and even my sex life was greatly affected.  These can be pretty major parts of your life to lose all at the same time.   I was lucky; my company looked after me well, I have many interests and was able to replace the sport with more sedentary occupations; and I have a very understanding wife!  The biggest part was coping with retirement as I could no longer work.  Discovering the Open Studies courses at Warwick University and taking up Bridge have helped enormously to fill this gap.  I’m also addicted to Sudoku and crosswords.

 L – is for Living your life.
The most important one of the lot; but you cannot do it without the other four.  Since my op four years ago I feel as if I really have lived life to the full.Initially, although I was perhaps doing better than many people, I still had a very limited life compared to what it was.  I spent a lot of time doing jigsaw puzzles, watching the television and going for short walks.  My posture was awful giving me a lot of back pain.  After six months I was finally able to travel (abroad) and start going back to the gym.  Now, four years later I can look back with great satisfaction on my achievements.  The many holidays we have enjoyed include trips to Canada, the States, Marrakech, Prague, Budapest plus various cruises.  I’ve attended three courses at Warwick University covering Geology, Archaeology and Creative Writing, none of them intellectually demanding but all highly enjoyable.  As a result I’ve joined the Warwickshire Geological Conservation Group and the Warwickshire Wildlife Trust.  I’m now a County Master at Bridge after only two years – but I do play four times a week!  I’ve been on Countdown, unfortunately losing to an eventual Octochamp, and qualified for the Times Sudoku Championship in Cheltenham both last year and this.  I go to the gym at least twice a week and can play Golf again to my original handicap.  I’ve also been doing Pilates for two years which has done absolute wonders in sorting out my posture and muscular problems.  To top it all I have a lovely granddaughter.  But best of all, I now feel that I have completely recovered my quality of life.  In many ways it is better than it was.
Where do I go from here?  At one point I felt cheated in developing Mesothelioma.  I’d never worked with asbestos and always looked after myself.  So why me; it wasn’t fair.  My surgeon gave me a stay of execution.  He could not promise any long term recovery because historically this does not happen.  He told me to treat the near future as my Golden Years and to enjoy them while I could.  I can look back and say I’ve used them to the full so far.  I’m now resetting my targets.  I intend to write my recent life story.  Frankly it is not easy to adopt the right discipline but the Creative Writing course has helped enormously.  I’m hoping to play at least one game of hockey again so I know I can do it.  But the main thing to decide is how to spend my Sixties and where I will celebrate my 70^th birthday – yes, I do now look that far ahead.  And even if by some misfortune Mesothelioma comes back to strike me again, I won’t feel cheated and will try to treat it as just another challenge.  But it isn’t going to happen.