Patients Stories - John’s Story

 “You hear of people being diagnosed with terminal illnesses who say they feel so isolated and alone– I don’t want that to happen to me.” A 73-year-old man who was recently diagnosed with an incurable cancer has spoken about why he decided to participate in a clinical trial at Queen Alexandra Hospital – to raise awareness on Action Mesothelioma Day. John Davis, who lives in Cosham with his wife Joan, was diagnosed with mesothelioma, a cancer of the lining of the chest, in January. “The diagnosis came as quite a shock,” he said.  “I’d heard of the disease before. What I didn’t know was how bad it is, and that there’s no cure.  I asked the doctor how long it will be before the disease kills me, but the answer is that they don’t really know – it could be in a very short time or it could be a while yet.” Mesothelioma is usually linked to asbestos exposure and more than 2,600 people are diagnosed with the condition each year in the UK. “I had worked around asbestos when I was younger – on-board navy vessels being refitted at Devonport Dockyard in Plymouth,” said Mr Davis.  “I was an electrical apprentice at the time, ripping out cables on the boats. The water and steam pipes were just covered in asbestos and there was absolutely no protection for us at all.” Mr Davis was offered chemotherapy following his diagnosis but decided to turn it down whilst he still felt well in himself. He was also offered the chance to take part in a clinical trial, funded by the British Lung Foundation, looking at ways to improve the quality of life of people with mesothelioma. People living with mesothelioma of the chest may have physical and psychological symptoms which can affect their quality of life. Palliative care involves caring for a patient’s physical, emotional, psychological, and spiritual needs. Research has shown that people with lung cancer can benefit from specialist palliative care support before their symptoms become too bad, and that this increases their quality of life. Researchers at Portsmouth Hospitals NHS Trust now want to find out if giving specialist palliative care help early in mesothelioma treatment can improve quality of life and wellbeing for people throughout the course of their illness. They also want to find out how this may improve the wellbeing of family or friends closest to them. “The doctor mentioned the trial to me almost right away,” said Mr Davis. “I already understand the importance of research because I have taken part in other clinical trials following a heart attack 12 years ago. I believe I’ve benefitted from them in many ways, as well as hopefully helping others. “My wife, however, was quite wary of the trial at first. She didn’t understand why I needed to be a part of it when I wasn’t really poorly or getting any worse. But, I can see the benefit of it for both of us; I know that there are people there for both me and Joan should we need them. You hear of people being diagnosed with terminal illnesses who say they feel so isolated and alone, it must be awful – I don’t want that to happen to me or Joan.” As part of the trial Mr Davis sees a specialist palliative care nurse once a month at Queen Alexandra Hospital. “The nurse we see every four weeks talks about the disease in different ways each time we see her – she tells us things which are actually quite useful – things we probably wouldn’t ask,” he said. “This trial is good in so far as it provides an awareness to patients like me and our carers that there are people there for you both – they are already in place, they’re there for you now. It’s important to add that there is help that the medical profession can give you other than things like treatments and drugs – and this trial would be an example of that.” Unfortunately the outlook for mesothelioma tends to be poor. This is because it doesn't usually cause any obvious symptoms until late on and it can progress quite quickly once it reaches this stage. Mr Davis said his diagnosis came following a period of feeling unwell in October last year. “After returning from a holiday I had pains in my chest and felt like I couldn’t breathe,” he said. “My GP told me I had bronchitis and put me on a course of antibiotics, but with no improvement three weeks later I went back. I was then given a chest x-ray and immediately sent to hospital. They operated on me to drain the fluid in my chest and took some biopsies, but the results came back inconclusive. I then had more biopsies taken, this time under general anaesthetic. These biopsies confirmed I had mesothelioma. “I was offered chemotherapy but I turned it down,” said Mr Davis. “I am fairly sceptical about the efficacy of it. I don’t see the point in having a treatment which will make me feel poorly when I don’t feel unwell from the illness at the moment anyway. “I’m trying to be positive about the fact that the mesothelioma isn’t currently causing me any problems, other than the initial weight and muscle loss.  I’m not in any real pain and I’m enjoying life. Whilst I feel well, I can’t see the point in having a treatment which may or may not work but will most certainly make me feel very unwell for a time. “I now get checked over every eight weeks by my consultant who also arranges for a chest x-ray. My last scan showed no progression since the previous one two months prior, so that is promising. I just have to hope that every x-ray will be as good for the next 20 years, and then I’ll be a happy man! But I know the mesothelioma will catch me out eventually.” For more information about the trial, which is being led by Professor Anoop Chauhan, Director of Research at Portsmouth Hospitals NHS Trust, please speak to your clinician or take the links above.

What is

mesothelioma?

Malignant mesothelioma is a rare cancer of the lining of the chest commonly caused by exposure to asbestos. This exposure may have occurred up to forty years earlier. Mesothelioma usually causes symptoms like breathlessness, loss of weight and chest pain, but it can affect people in different ways. There is no cure for mesothelioma. This study seeks to learn how best we can support patients with mesothelioma and their families.
A study to learn more about treating malignant mesothelioma - can we improve quality of life?

Downloads

(All the downloads below are PDF files) Frequently Asked Questions Patient information sheet Carer information sheet Patient consent sheet Carer consent sheet Carer GP Letter Study protocol Invitation to participate Poster

Interested in

becoming a

recruiting

centre?

For more information including eligibility criteria and resource implications for your centre – select this link