“You know nothing about mesothelioma”

Posted on: 10/11/2016

A couple’s nightmarish experience after diagnosis of the fatal asbestos-related disease led to the establishment of a unique support charity, reports Belinda Liversedge.

Mesothelioma kills around 2,500 people every year in the UK, many of those through contact with asbestos at work. But far fewer of those are women (414 according to last figures) and still fewer are teachers.

When retired teacher Pat Stone was diagnosed with mesothelioma at the age of 71, she felt an isolation that was sadly commensurate with the rarity of her condition. Her husband, Graham Pound, recounts for us why they decided to use the funds she received in respect of her illness for a charity that will provide patient support at the crucial moment of diagnosis.

Graham explains that Pat was a science and biology teacher, working at a school in Wandsworth, London until she retired in 1989. She taught combined science and biology which involved a great deal of practical work in the laboratory. Her diagnosis with mesothelioma came just before Christmas in 2013. It is thoughtthat daily exposure to asbestos through handling asbestos mats placed under Bunsen burners and brushing away the dust left by asbestos-impregnated gauzes was the cause.

Graham recalls: “Obviously they call you in to deliver the diagnosis. Well on that day, having just being given the devastating news, we felt that it was the time that someone should step in and offer support. That didn’t happen. The difficulty nowadays is you look it up on the internet and you find the truth about the actual illness and sadly learn that if you make 12 months, you’re doing well.”

After this meeting, they made the journey home, in the normally busy and happy days before Christmas, standing shell-shocked in a crowded commuter train. “You need to be supported at the point of diagnosis. There should be counselling and advice. While we appreciated that may not be within the doctor’s remit there should be someone available with the expertise to offer support following the shocking news. In our case we were handed papers and solicitors’ leaflets and told that the hospital would be in touch.”

While at home, the sickening uncertainty continued. They knew that Pat needed a positron emission tomography (PET) scan to determine if the cancer tumours could be surgically removed. However, because of the busy time of year, they were given an appointment for later in January. Taking the initiative, Pat phoned the hospital every morning to see if there was a cancellation and eventually managed to reduce their waiting period. “The difficult part was the waiting time.

We just wanted action,” he says. In the interim the family anxiously talked through the possibilities as best they could. “You know nothing about mesothelioma. When talking to family they said, ‘well Pat can have the lung removed and she’ll still have one lung’. But of course, mesothelioma doesn’t work like that. It attacks the diaphragm and that’s what the scan eventually showed. It had developed through the pleural cavity and across into the diaphragm, so it was inoperable.”

In the hard weeks of appointments, chemotherapy and drug trialling, it was the small things that would have helped make the process easier. “There’s all sorts of things you’ve got to find out for yourself. We were treated at Guys Hospital and to get from Bromley to Guys is a fair old journey… and parking is almost impossible up there.” As a mesothelioma sufferer, however, you are entitled to a blue badge for easier parking plus avoiding the congestion charge. “That in itself was important,” he says pointedly. Other aspects they had to work out together included attendance allowance. It wasn’t immediately obvious that Pat would be eligible for this benefit. In actual fact, sufferers are entitled to a full attendance allowance, an immediate monthly industrial pension and a lump-sum payment – all tax free. (The lump-sum payment from the government is paid back to it if a claim against the employer or their insurers is settled).

Before Pat sadly passed away in November 2014, after months battling her illness, the family decided that more support was needed in London. “There’s designated support in other areas of the country where there were heavy industries such as shipbuilding as these locations have more cases of asbestosrelated disease. There are fewer facilities and less support in the London area,” he says.

Pat worked for the Inner London Education Authority. Following her death, Graham received a payment from ILEA’s insurers in March 2015. The funds received were a payment without acceptance of liability by the insurer – their
claim never went to court. Using this money he, along with four of Pat’s close friends, set up the charity “Pat Stone Meso Support”. One of its main aims is to offer immediate support to patients diagnosed with mesothelioma in the Greater London area.

Jointly run with Mesothelioma UK, the charity will fund a dedicated meso nurse based in London. When appointed this autumn, the nurse will spend two days of the working week only involved in mesothelioma issues and will liaise with other hospitals and nurses to educate on the illness. She or he will be based at Guy’s Hospital where Pat was given her diagnosis and will be the first mesothelioma clinical nurse specialist in the London area.

Graham says: “What we’re hoping is that the nurse will be on hand right at the moment of diagnosis in the hospital so that a relationship can be formed with the patient and carers and guide them through that first part of their journey.” Of course, the fact that mesothelioma is a terminal disease, was also a part of Pat’s sufferings and is the most devastating part of the story. “The thing that concerned Pat was the way she was going to die,” Graham says. “She was tremendously brave and she said, ‘I’ve had a long and happy life I accept that I’m going to die I just don’t want to die in anguish’.”

The charity was also created therefore to simply provide a hand to hold when facing the unknown. Although the end was peaceful when it came, he says, the characteristics of the illness, with its apparent 30-year long incubation period, was frightening to have to suddenly face. “Pat was a very feisty lady and she was angry, angry that she had an illness that was the result of inhalation of asbestos spores, the only known cause,” he says. The nurse will be there to provide the important psychological as well as practical and medical support.

Stories like Pat’s are a reminder of the unique and very difficult facts of mesothelioma as a cancer that stands alone among cancers as being one of the most aggressive and to date incurable. But that doesn’t mean that its sufferers should have to face it alone. Thanks to the bravery and determination of people like Pat and Graham, they won’t have to.