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Written on 31st March 2016 by Kim Milan

At a recent meeting of the Asbestos sub-group of the All Party Parliamentary Occupational Safety and Health Group two mesothelioma sufferers spoke about  their personal experiences and hopes for the future.

Trevor Barlow, from the Manchester Patient and Carer Support Group, told the meeting of his experiences in battling the disease since he was diagnosed in September 2014. Trevor worked in the building trade and although he had not worked directly with asbestos himself he was exposed to asbestos dust and fibres by the work of others on construction sites. He described the shock of his diagnosis, after leading a healthy and active life, at the age of 70.

Trevor praised the excellent medical treatment that he has received from the NHS which had included radiotherapy and chemotherapy sessions and surgical treatment. He has also taken part in clinical trials at several centres throughout the UK as part of the COMMAND research programme but this has since been abandoned. He described feeling despondent and disappointed that the trial had not been a success but remains only too willing to engage in future sustainable trials, not only for his personal benefit but also for the benefit of future sufferers.

His personal approach to the disease has been a positive one and he believes that anyone with a terminal illness needs a peaceful and positive approach to help them through future times, good and bad. His diagnosis also led him to taking more exercise and adopting a healthy eating plan.

He and his family have created new targets and ambitions as a way of coping with his illness. These have included some very challenging climbs which started with the 555 steps to the top of St Peters Cathedral in The Vatican, followed by climbing Snowdon, the highest mountain in Wales, and conquering the highest peak in Poland and the Czech Republic, Mount Snezka. He has further ambitious plans which include climbing Ben Nevis and a walk from John O’Groats to Lands’ End – all for the benefit of mesothelioma charities. He continues to raise awareness about asbestos related lung disease and has even appeared on breakfast television to promote the cause.

Trevor voiced his profound appreciation to all the charitable organisations, such as Mesothelioma UK and Greater Manchester Asbestos Victims Support Group, who do so much to support victims of this disease and provide encouragement and enlightenment about medical initiatives and clinical trials. He underlined the massive importance of continued medical investigations, research and clinical trials to identify better treatments in the hope that sufferers can have an improved quality of life and an extended life expectancy after diagnosis.

The second speaker was Mavis Nye who describes herself as a “Mesothelioma Warrior.” This remarkable lady was diagnosed with mesothelioma in 2009 at the age of 68. She described how she had laundered her husband’s working clothes for many years which were impregnated with asbestos dust and fibres.

At the time of her diagnosis she was given a life expectancy of 3 months but she was not prepared to accept her death sentence and she travelled all over the UK volunteering to take part in clinical trials and treatments in order to prolong her life expectancy. She refused to accept that there was nothing that could be done for her and she urged others diagnosed with the disease to also become Warriors in order to seek out and take part in the clinical initiatives that are available. She referred to the helpful information provided by charities such as Mesothelioma UK which can provide guidance on the trails local to individual sufferers.

Mavis praised the marvellous work of the staff in the NHS in this arena but added that although the £5 million recently announced in the Budget for mesothelioma research was very welcome it was not enough and the Government must commit to providing an annual amount to enable this pioneering work to continue. The UK is a leader in research into this condition and currently has the highest level of diagnosed cases in Europe.