Taking It One Day At A Time - Josie's Story

Mesothelioma is not an easy word to pronounce or to spell nor is it a word that most people are, thankfully, familiar with.  It is a word that my husband and I only heard two years ago but in that short time it has torn our lives apart.

We have always been social animals, enjoying the company of friends and family.  Any event was an excuse for a party and the house was always full of people.  Conversely, we enjoyed just being together, sharing housework, decorating and gardening so that we could complete jobs quickly in order to pursue our other loves.  We never tired of the countryside and, after retirement, we would regularly walk 40 miles a week in and around the Peak District, sometimes visiting country estates and castles. Both of us loved holidays and would spend hours planning where to go and which cities to visit and, because we both enjoyed history, it was never difficult to agree on an itinerary. The theatre was another of the pleasures we shared, we liked to watch plays or musicals but we were particularly fond of opera and would travel many miles to see a really good production.   In short, we had a good life together and made the most of it.

In September 2009, Roy and I celebrated our 50th Wedding anniversary.  It was not in any way the party that we had planned.  We had wanted it to be a splendid affair with all the family and a great number of friends and neighbours attending, people who had played a large part in making our life together richer. However, instead, we settled for a very modest gathering of the people we loved the most, the family, children, grandchildren, brothers, sisters and their children and a few very dear friends. We chose the same venue that we had had for our wedding reception half a century before and it was lovely, not least because Roy was well enough to be there.

Roy had worked until the mid 1980s as a heavy haulage mechanic.  The garage had an untreated asbestos roof and the lorry brakes had asbestos linings.  These regularly had to be changed or roughened so that they could be used for a longer period of time in order to save money.  I was not aware of this at the time and even if I had have been I would not have been overly worried.  It was only when asbestos hit the news headlines that Roy discussed these issues with me and, as time went on, we ceased to worry about it.  The word mesothelioma was never spoken or heard of.  

In the summer of 2000 Roy suffered back and chest pains and shortness of breath and he had to be hospitalised. His right lung had filled with fluid, for no apparent reason.  It was drained and a biopsy taken but it revealed no evidence of malignancy and we were overjoyed.  No diagnosis was made but it was at this time that Roy was first asked if he had ever worked with asbestos.  It was never mentioned again and we thought little of it.

On 29 February 2008, Roy went into respiratory arrest twice and we, the family, were told that he was seriously ill and not to expect too much. Only the valiant work of the paramedics and hospital staff saved Roy’s life.  He was admitted as a trauma patient and as he improved, transferred onto a ward.  His lungs were drained again and he was treated with very strong antibiotics.  His weight plummeted from 14 stone 7 lbs to 11 stone 3lbs almost over-night. A CT scan revealed some pleural thickening, but we were reassured by one young doctor who told us that he didn’t think it was cancer.  The illness was diagnosed as pneumonia and Roy was sent home on the 19th March 2008.

After undergoing blood tests, a CT scan, a CT guided needle biopsy and a video assisted thoracoscopic biopsy on the 28th May 2008, while still in the hospital, Roy was told that he had cancer, namely mesothelioma.   A ward doctor conveyed this news to him without any member of the family being there to support him and Roy relayed it to me when I arrived at visiting hour.  I cannot even imagine the horror that Roy must have felt but he reacted to it in a very quiet and resigned way, which I found heart-breaking.  Even at this point we had no idea what mesothelioma was or indeed that it was terminal. Within an hour we were introduced to a specialist cancer nurse, Alison, who was quietly spoken, calm, informative and extremely supportive.  She explained the illness to us and told us that a new drug with which to treat mesothelioma had just become available and that it was proving most successful.  We were heartened by this at least. She urged me to be strong for Roy and to take one day at a time and I have had cause to remember this advice on a daily basis.   Alison was present when we met Roy’s oncologist, a man whom we have come to like and trust.  He recommended 3 doses of radiotherapy to the biopsy site in order to seal it and then a course of chemotherapy (Cisplatin and Pemetrexed or Alimta), six 12 hourly sessions, every 3 weeks.  Twice during Roy’s treatment he had to be hospitalised because the drugs weakened his immune system so much that his body was unable to cope.  For most of the following 6 or 7 months he was terribly ill only getting out of bed to make frequent visits to the hospital in order to undergo treatment.  He was constantly sick, greatly weakened and tired.  The District and Douglas McMillan nurses were visiting at all times of the night and day and were supportive, efficient and compassionate – I never felt that I was really on my own because they were always ready to give advice whenever I needed it.  Without their help I would have had a great deal of difficulty getting through this period of time.

At the end of his treatment, a CT scan showed that the cancer had significantly reduced, his weight increased and life improved.  For the last eight months Roy had been in remission. He was so happy and excited when he was told that I naively thought that he would become more like his old self and begin to enjoy his life more but this has not been the case.  Although Roy looks extremely well this illness has had a tremendous psychological effect upon him.  Some cancer sufferers, when in remission, seem to need to do as much as possible with their lives in the time that they have left.  They find a resilience and a positivity which Roy does not seem able to do. He does not want to talk about his illness to me or to anyone else.  He hates to see or hear anything that is remotely connected with cancer.  He no longer craves holidays, or the theatre, or mixing with friends.  He suffers panic attacks and where he was once so totally laid back now he worries about everything and everybody.  He does, however as he always has, love to see the children and grandchildren. He now finds walking almost impossible, he is always tired and so sleeps a great deal.  He has little concentration, numbness in his hands and feet, sore eyes and an inability to bend.  He shows no anger towards or tries to blame anyone for his illness but he shows frustration that he can no longer garden, decorate or do the 101 things that he used to do about the house.  He tells me that he feels safest when he is at home with me and, although I can understand this to some extent, I find it a great responsibility. This disease has not only destroyed Roy but is it has devastated the rest of the family, it is difficult for them to know what to do or say and it shows every time they visit us.   Although I have been through the whole spectrum of emotions and have found it almost impossible at times, my feelings cannot be compared in any way with the sheer trauma that Roy must feel. I would dearly love to make Roy better but as this is impossible the only thing that I can do is to be here for him and support him when he needs me.  I just hope and pray that I have the strength to do so. 

When Roy was diagnosed, during our first meeting with Alison, the specialist nurse and the oncologist, as well as being given a list of support groups that we could ring for help, they both urged Roy strongly to make a claim against his employer to gain compensation for his condition.  At this point our knowledge of the disease was limited and in an effort to find out more about it we chose to speak to a member of the Cheshire Asbestos Victim Support Group (CAVSG) and he again urged Roy to consider making a claim.  On both occasions we insisted that money was not our priority, that money wouldn’t make Roy better and that was all we wanted. They, of course, agreed but said that sufferers needed to claim to heighten the Government’s awareness of the massive problem that mesothelioma was becoming.  The Government had apparently known about the dangers of asbestos for more than four decades and had done little or nothing about it until more recently.  Now the action that they were taking was insufficient and too slow. They also said that present victims needed to be acknowledged and the increasing numbers of potential victims recognised by the Government. 

The CAVSG suggested that Roy approached the firm of Irwin Mitchell; they had, he was told, a great deal of experience in this type of case.  Roy rang and a young lady, Alida Coates, came to our home to interview him.  She was a pleasant, sympathetic, well informed young lady, who was very easy to talk to.  The firm that Roy had worked for closed down in 1984 and he thought that this might prove difficult but he was told that this was not always the case.   Mrs. Coates went away with all the information that she needed and promised to get back to us.  This she did, but for personal reasons she had to pass the case over to Iain Shoolbred, a quietly spoken, polite, friendly man, who was equally easy to talk to.  For the last eighteen months Iain had worked very hard to bring Roy’s case to a conclusion, keeping him well informed every step of the way and making everything as simple as possible for him.  Initially we were put off by the thought of dealing with solicitors and the law and for most ‘ordinary’ people the prospect is daunting but now we have seen first hand how helpful these profession people are I would urge anyone to try to get a little of the justice that your loved one deserves.  It is horrendous being told that somebody that you love has terminal cancer but to know that it could have been prevented if the Government had have acted more quickly is just criminal.

More Real Life Stories