Diagnosed with mesothelioma at just 34
Paul Cowley (44) a former engineer, lives in Ely, Cambridgeshire with his partner (wife) Claire and 11-year-old son Ethan.
Paul lived a humble life, working for an engineering company on the lathes before suffering with anaemia around May 2012. Paul’s skin colour began to change, turning almost orange, prompting a visit to the local doctors and a subsequent diagnosis of severe anaemia, and prescribed iron tablets.
The doctors wanted to determine the cause of the anaemia and referred him to Addenbrookes Hospital for further tests. Paul had numerous investigations, including an endoscopy and colonoscopy, then a CT scan which highlighted a mass on his diaphragm.
Shortly after this finding, Paul received a letter from Royal Papworth Hospital NHS Foundation Trust, (Royal Papworth is a specialist centre for the care of patients with malignant mesothelioma. They provide a rapid investigation and diagnosis service for patients suspected of having mesothelioma, alongside advice on optimal treatments which may involve participation in clinical trials). He was invited for a needle guided biopsy at the end of September 2012, then attended Royal Papworth a week later where his diagnosis of mesothelioma was given.
The diagnosis came as a shock as this was not common in someone so young, Paul was just 34 years old.
In October 2012, Paul saw Consultant Thoracic Surgeon, Mr Marco Scarci who suggested video-assisted thoracoscopic surgery (VATS), a minimally invasive surgical technique used to diagnose and treat problems in the chest, to confirm the diagnosis. During a VATS procedure, a tiny camera (thoracoscope) and surgical instruments are inserted into the chest through one or more small incisions in the chest wall. During the procedure Mr Scarci took around 20 samples.
Mr Scarci’s findings confirmed the diagnosis of mesothelioma, and in November 2012 he gave Paul the news that he would require surgery to remove the tumour with chemotherapy to follow.
Paul has undergone debulking treatment, the goal of which was to remove as much of the mesothelioma as possible, he was cut from the ribcage down during this procedure.
This was the first time Paul thought about death, how would Claire and Ethan, who was just two at the time, cope? He heard the words of his father run through his head, who had always said to him when he was growing up “Fight it”. Paul’s Dad sadly lost his life at just 46 years old, to a rare form of melanoma, he worked as a maintenance engineer in agriculture. Paul was 18 at the time.
Paul was aware of mesothelioma, when he received his diagnosis because of his dad’s past medical history. Paul didn’t have any symptoms, and if it wasn’t for the excellent care he received from his GP when he presented with anaemia, he wouldn’t have had the further investigations to reach this diagnosis. He had none of the typical symptoms of mesothelioma, which can include chest pain, shortness of breath, fatigue, a persistent cough, loss of appetite, clubbed fingers, tummy pain, feeling sick, or diarrhoea or constipation.
Paul believes his contact with asbestos could have come from secondary exposure through his father, who would come home from his job as a maintenance engineer in his overalls and had asbestos in his hair. He also recounts a memory of his dad showing him some asbestos sheets and telling him not to go near them.
Paul’s prognosis is undetermined at this stage. He has never asked and never been told. Paul is monitored every six months, but if he isn’t feeling right, he has an open door with the team at Papworth who are “on the ball”, especially his dedicated nurse Kate Slaven (Mesothelioma Clinical Nurse Specialist who has regional responsibility for supporting, signposting, diagnostics, treatment, problem solving, leading, and generally offering clinical support with everything relevant to mesothelioma). He is not currently eligible for any trials but has participated in longevity studies to share his experience. For Paul, his diagnosis means he feels so much closer to Claire and Ethan, he has had the opportunity to see Ethan growing up and feels in a lucky position to be able to share moments with him, which other fathers might not be able to such as school plays.
Paul stopped working when he received his diagnosis, and had a “mini breakdown”, he returned after a time but found things to difficult due to stress and the pressures he was carrying on his shoulders.
Raising awareness remains one of Paul’s priorities. He was interviewed as part of a Victoria Derbyshire piece on asbestos in schools, and has raised money for Mesothelioma UK and for Papworth Meso Support Group, of which he now sits on the board along with Claire.
Paul copes by making the most of every day and raising awareness, he does not want anyone to go through this experience, having the pain and suffering he has endured physically and mentally. Paul wants to give people some hope, that although the diagnosis is devastating, it is not the end, just the beginning of a journey.
While Paul and other survivors are still here, they will continue to shout from the rooftops that this disease is avoidable with the correct level of awareness, instruction and training.
Papworth Mesothelioma Social Group: Kateslaven@nhs.net Tel: 01223639591
Published Nov 2022