'I take 270 cancer tablets a week and live on oxygen - but I don't have cancer'

A brave father of three is using being busy as a weapon in a fight for his life against a rare, incurable disease that is gradually causing his lungs to fail. Scott Nell has a form of scleroderma, which is a progressive autoimmune condition caused by the body producing too much collagen. Alongside the condition, which is causing skin fibrosis and affecting his lungs, he also has Raynaud’s.

This means that the small blood vessels in the extremities, such as the hands and feet, are very sensitive to cold conditions and even the slightest changes in temperature. Mr Nell was diagnosed with diffuse cutaneous systemic sclerosis in March 2018 after several months of seeing medics who had no clue what was wrong. To fight the progression of the condition, he has to take 270 cancer tablets a week and undergo chemotherapy every six months.



He said: “Part of this disease is it's the immune system kind of telling the body that the skin is a foreign object and that it doesn't belong. “And it's trying to reject it. So, the suppression of my immune system and the softening of the skin [through the tablets and the chemotherapy} is kind of the way they're treating it.

” When he was first diagnosed, he was told he may have 10 years of life left, but he is determined not to let this prognosis stop him. The 48-year-old said: “I'm under palliative care now, and that's very recent. And they were describing to me how to assess how long I've got left.

“So, they were saying ‘if you're doing regular lung function tests and there's a deterioration between each one then we're going down to months. “‘But at the minute, you can kind of see it as a year. When we start getting that deterioration, then we will start looking at the months.

’" He added: "But there were discussions of do not resuscitate markers being put on me, which I'm not ready for. “And, and where I want to be when it happens. You know, on my, on my final days, whether I'm at home, whether I'm in hospital, whether I'm in a hospice, that was kind of my three options.

” Despite battling the condition and being on oxygen and morphine, it has not stopped Mr Nell from working at his landscape gardening business, and he is still a school governor. He also still makes things in his man cave. He said: “I definitely push myself.

I think it has really helped. “I don't want to stop, you know, I'll be forced to stop long before I want to stop. “I always was a very hard worker, like, you know, like in a league of my own.

I was probably too hard a worker. “I think it's maybe had a positive effect on me getting ill, to still have that drive to kind of keep going, you know, to keep pushing through the pain and the stiffness and the, you know, the breathing problems." He said: “I have had to learn how to control my breathing a bit more and to recognise when I'm going dizzy, is actually my heart rate taking over.

“Because when you, when your lungs don't work properly, your heart compensates. So I've had to learn to recognise that.” He says he slowly came to terms with the life-limiting nature of his condition from the day he was diagnosed.

And his worry is about how his loved ones will cope with his death. Mr Nell, from Durham, said: “I tend not to get upset about it in front of other people. It's more my mind wandering while I'm driving along by myself.

“But my mind doesn't go to my own suffering at the end. It goes to my family's loss, my children's loss, my wife's loss, my parents, my siblings. “It's the pain that they're going through at the end that comes to my mind.

” He said: “That's what upsets me. My own demise is not at the forefront. “Maybe once I get to a point where I'm really gasping it may be, it may be a different scenario.

“But I'll deal with that at the time. I'm not worried about it right now. I've got enough things to kind of focus on right now.

“I am keeping myself busy.” Approximately 19,000 people in the UK have scleroderma. Mr Nell says he has got a lot of support from other sufferers around the world on Facebook and Instagram , as well as from the charity Scleroderma and Raynaud’s UK.

It’s the only charity in this country which is dedicated to improving the lives of people affected by Scleroderma and Raynaud’s..