British teenager Stephen Sutton has changed the rules on dealing with cancer

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Stephen SuttonSource: Guardian UK – Sharon Brennan.

Instead of focusing on ‘beating’ cancer, which can be insensitive to those who are dying, Sutton has been both pragmatic and honest about his situation.

As I write, Stephen Sutton is adding to the £2m he has already raised for Teenage Cancer Trust. What he has achieved, while living with incurable cancer at the age of 19, is remarkable, but his attitude to it even more striking.

As someone who lives with cystic fibrosis (CF), an incurable, life-limiting illness, it is with great frustration that I see adverts such as the current Cancer Research UK’s Race for Life, in which a personified cancer is told “we’re coming to get you”. If bravery is to “show cancer who’s boss”, then it is hard not to conclude that those who haven’t been able to do so just didn’t fight hard enough.

While I greatly admire the hard work these cancer charities do for those living with the condition, the language used around incurable illnesses saddens me. It’s pervasive throughout society, not just in the third sector. It is rare indeed to find an article written about someone whose cancer has gone into remission and not find the phrase: “I’ve beaten cancer.”

I often see similar words repeated within the CF community on social media, when the sad reality is that there is no known cure for CF. So why say such things? No doubt it helps some stay positive in the face of illness, but I worry that others secretly feel trapped by the modern narrative that illness must always be a battle that one wins or loses – and people repeat these phrases in order to feel supported by those around them.

Last year was the toughest of my life, as I waited for and recovered from a double lung transplant. Yet one of the worst aspects was the loneliness that comes with slowly dying while being surrounded by those who aren’t. The distance it causes is immense without the pressure that society now creates in the expectation that we must never give up.

Stephen has shifted this narrative. While he chooses to use the language of fighting and battle, he also openly admits the seriousness of his condition. In an extraordinarily straight-forward but emotional blogpost in January last year, he said: “I’m facing a very uncertain, and probably very limited, future. Originally all I ever wanted to do was study hard and make a difference to the world by becoming a doctor. However, in light of my current circumstances I have decided to be more pragmatic with my time.”

This pragmatism is one that has opened up the choices he has given himself in the life he has left to live, as proven by his bucket list. And it’s a message that fills me with more positivity than any attempt would at avoiding the reality of my health…read Sharon’s story in full.

Visit Stephen’s webpage: http://stephensstory.co.uk/

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The ONA Editor curates oncology news, views and reviews from Australia and around the world for our readers. In aggregated content, original sources will be acknowledged in the article footer.

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