Kevin O’Neill is believed to be certainly one of solely 15 individuals on this planet to have been recognized with the uncommon type of most cancers known as malignant myopericytoma – and now he’s making an attempt to trace down the others.
The 48-year-old, from Inverkeithing in Fife, has been dwelling with extreme persistent ache for 11 years and has had 5 main operations prior to now 5 years to take away tumours.
Two years in the past he observed the scar from a earlier operation getting scorching after which a swelling began on the wall of his chest on the fitting hand facet.
Inside weeks the swelling grew out of his shoulder blade to the scale and weight of bowling ball.
Kevin instructed BBC Scotland’s Kaye Adams programme: “Myself and my spouse have a very good snigger about it now, the scale that it was, but it surely was agony carrying it.”
He says his earlier tumours had been benign, however this one was most cancers.
“If I had refused the surgical procedure it might have killed me,” Kevin says.
He underwent an operation to take away the huge tumour on the Royal Infirmary in Edinburgh, a 12-hour course of which required him to be put into an induced coma for two-and-a-half days.
The surgical procedure befell in October 2015 and required the removing of his ribs on the fitting facet and a part of his shoulder.
Surgeons mentioned the tumour they eliminated was a dimension they’d by no means seen earlier than or since.
It was the load of a new child child and the circumference of a dinner plate.
Samples from the tumour had been analysed in Edinburgh, then despatched to the specialist Beatson West of Scotland Most cancers Centre and analysis centres within the England.
The samples have been lastly despatched to america earlier than a prognosis was reached of malignant myopericytoma.
A month after the surgical procedure he obtained a name from his oncologist at Edinburgh’s Western Common.
Kevin says the oncologist instructed him there have been simply 15 individuals worldwide who had been recognized with this type of most cancers.
Two years after the operation, Kevin says his restoration continues to be ongoing.
“As a result of throughout the operation itself they took out the vast majority of my proper ribs and quite a bit off my proper shoulder, my chest was rebuilt as nicely,” he mentioned.
“As you’ll be able to think about it is fairly a protracted restoration interval.”
Kevin retired from his job as a union organiser on medical grounds and has been to most cancers help teams, however says he at all times felt like “the man within the nook with the most cancers no one might pronounce”.
So he has arrange a weblog and a Fb web page with the intention of discovering the opposite 14 individuals together with his situation.
He desires to arrange a discussion board to allow them to converse to one another.
“As a result of it’s so uncommon, there’s not anybody who’s an knowledgeable who you’ll be able to really speak to,” Kevin says.
Simply earlier than showing on the Kaye Adams programme, he was “shocked” to get a message from a person in California who says he is without doubt one of the 15.
“The smile I had on my face was just like the Joker in Batman,” he says. “It’s actually good.”
Kevin, who has three sons, says his well being is “up and down”.
He had a scare a few months in the past when a construct up of fluids seemed to be one other tumour.
“I’ve been instructed that if I get a recurrence of a tumour in that space the perfect they’ll do for me is maintain me snug,” Kevin says.
“However you actually simply get on with it. A powerful constructive perspective helps me every day.”