Peter’s Story

Peter first felt ill two years ago, Christmas 2005. He had been working away from home, and commuting long distance twice a week. He had been suffering from a cold, and flu like symptoms, on and off for a year. This alone concerned me, as I knew his body was obviously fighting something. I remembered that a previous blood test some years ago, showed that his body was fighting something, but with nothing obvious to see on a precautionary chest x-ray apart from a shadow on his left hilum in the lung, the doctors did not do anything about it. Looking back, this was the start of the mesothelioma. However, we can all be wise with hindsight.

I was genuinely concerned this particular Christmas holiday, as he was tired, and had a constant pain in his side, also he was suffering with shortness of breath and was complaining quite a bit about his side, and a feeling that he had not enough oxygen going into his body. I said that he had to go to the GP and talk to the doctor about having a chest x-ray and blood test. He did not want to go, but I made him. I was nursing at the time as a student nurse, and my alarm bells were ringing. Sure enough, his chest x-ray showed a pleural effusion. I was so concerned, but the doctors seemed to think it was a chest infection or pleurisy. I was convinced something more sinister was going on with Peter, and my instincts proved right. I knew he had worked with asbestos. I knew, something inside me just knew, that it was mesothelioma.

Peter, on our 23rd Wedding Anniversary Holiday, March 2008, with a glass of Champagne.

The year 2006 was a blur, spent visiting hospitals. We attended Derby City General Hospital, Derbyshire Royal Infirmary, Nottingham City Hospital, Burton Hospital, Glenfield Hospital - Leicester, Rotherham General Hospital, and Leicester Royal Infirmary. Peter was finally diagnosed in March 2006, and had various diagnostic treatments before being referred to Mr Waller at Glenfield Hospital in Leicester. He had Extra Pleural Pneumonectomy (EPP) performed on 9th October 2006. That was the longest day of my life. The operation went well, and it was thought that Peter had been diagnosed early enough, and he would have a chance at living beyond five years. We were elated with this news.

Peter managed to go back to work after all the chemotherapy and radical radiotherapy. Although he was tired most of the time, he really tried his best to continue as normal, and tried to recoup some of his life back. He enjoyed going out in his motorhome, he liked fishing, especially his new found love of fly fishing. However, he could not go far, and I used to take him most places in the motorhome, so he did not have to walk, and could have a rest. He only ever went fly fishing twice, once for a lesson, and once with my brother - he enjoyed himself so much and said it was worth having to spend the following week in bed!

However, things did not go well, and unfortunately in 2007 he was diagnosed with peritoneal mesothelioma - the cancer had spread from his diaphragm to his peritoneum in his stomach, and he had to give up work. Just before Christmas 2007, Peter underwent radial chemotherapy with a drug called Alimta. It was so unfair that to have a chance of a few more months with his family, Peter had to pay for the drug. National Institute for Clinical Excellence (NICE) - not so nice! - had not sanctioned the drug to be used then. It seemed we were in a post code lottery situation. Peter’s employers, G F Tomlinson Building Limited, said that he could claim on the health insurance, and we were so grateful to them. In fact, the firm were brilliant to Peter and I can never thank them enough for all the support of his friends and colleagues throughout this awful illness.

Peter had the Alimta at home - the staff who came to visit him were wonderful and he felt so cared for. It was brilliant that he could be at home, amongst his own things, and home comforts. It was so much better than being at the local hospital. When he went for chemotherapy at the local hospital he had to stay in on his own as there was no room for relatives. This was all right, but I needed to be with him, to support him, to care and tend to him while he was being sick. The staff at the hospital are so busy, that the personal touches get overlooked. As a student nurse, all I wanted to do was care for him, to make sure that things were being done properly. I only wanted the best for him, as he had given me the best years of his life, working hard, being a good husband and a fantastic father to his children.

Not everything was brilliant with the National Health System (NHS). I think the staff are treated like workhorses, and it’s the caring staff who are too thin on the ground, there are a lot of people who just go to work, do their chores, and then come home. To some, nursing is just a job. Personally I think if you have not got empathy you should not being doing the job. If you are burnt out then leave and go do something else. It’s all right for me to sit here and pontificate, but I have been on both sides of the NHS and seen such a lot in these past eighteen months, I just know that we have not got a good health system. You just cannot keep throwing money into the pot to cure the problems, and the problems still remain. The problems are all at ground level, on the front line. There are the ‘few’ that keep the hospitals running, with the apathy of some, festering like a cancer, eating away at the ones who are trying to make a difference. I feel very strongly about this - if I reflect, I don’t know whether I am being biased or not, whether my husband’s experience has sullied my beliefs. All I know is that the NHS has lost a good nurse in me - I’m burnt out at the moment and have to heal myself before I can heal others. Fact.

And so to Christmas 2007, Peter nearly died from having a low white blood cell count. He was nursed in what I can only describe as a large caravan on a car park. It was a temporary ward, that is still there some five years or so after it was built. I have never been on a ward like it. Whilst it was clean, tidy, and warm, that is all I have to say about it. Like I said in the above paragraph, some of the staff were brilliant, others, I do not wish to comment. When you have someone dying in a bed and the lights are switched on, the bin banged, and everyone in the bay told to wake up - well, that really is good practise isn’t it (sarcastically said). Peter was nursed with other patients who had chest infections, who had visitors with coughs, colds, children running in and out, noise, poor food, and some doctors who should have been on holiday getting themselves sorted out. He was neutropenic and the antibiotics were not working, he spent three weeks in hospital fighting infections, and I was just so relieved to get him home alive. The visiting hours were awful, no sooner had I got there, and it was time to come home, let the dogs out, then go back for the evening session. Peter begged me not to go home, but one has to adhere to the rules of the ward. As time went on, and the doctor told me there was a chance that he could die, I decided to ignore the rules, and I asked the sister if I could go in at any time. This was agreed, and I spent my daytime hours at the hospital, encouraging him to drink, eat, and have a wash and clean his teeth to make him feel a little better. My efforts paid off and he came home. This was the worse experience of hospitals we had. Quite frankly it is one I would not wish anyone to experience. I have others who have said the same thing to me about their experiences. Reflectively speaking, I suppose you can’t please everyone at the same time. Personally speaking you sure can try!

We managed to get away in March 2008 for a four day break to celebrate our twenty three years of marriage. Peter had tried his hand at painting - the Bob Ross method. I was really proud of him, as he stuck at it, going every day to his painting class despite being quite poorly. He was so ill that week, I wanted to come home, but he wanted to see it through. I have three lovely paintings that he did. I was so proud of his resilience and his willpower to achieve.

We came home, and I had to call the doctor out. A locum doctor came to visit Peter one Sunday, and decided to admit him to hospital. He was admitted to our local Macmillan Unit. This was a totally different experience for us both, and one evening Peter telephoned me to ask if he was a private patient - he couldn’t believe how he was being cared for! He took some convincing that he was not a private patient!

Peter died a week later on 6th April 2008 at 4.20pm. He had run out of energy, and just fell asleep. He was warm, comfortable, and cared for, surrounded by his family who loved, and still love him, dearly. We had talked to him all week, telling him things he needed to know, things that we needed to tell him. We told him he was well loved and that we would not stop loving him. We cuddled him as he lay sleeping, and made sure he was not in any pain.

The rest is history, and so nearly two months after his death, we are still picking up the pieces. Time is supposed to be a healer but I don’t think I shall ever heal. I miss him so much. I am a widow aged 46 years, my children should have their father, my son celebrated his 21st birthday without his father, the sympathy cards replaced by 21st birthday cards. Mesothelioma is such a horrendous cancer. I just do not know what the future will hold for us, I cannot think that far ahead.

Page Last Modified On: 23rd May 2008