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Life as part of the 'Lost Tribe'

Being diagnosed with cancer is life-changing. But when you're just beginning your career and adult life it is terrifying, writes blogger Alice-May Purkiss

Being diagnosed with cancer is life-changing. But when you're just beginning your career and adult life it is terrifying, writes blogger Alice-May Purkiss

You never imagine that you will be diagnosed with cancer in your twenties. You think of cancer as an older persons’ disease. It's fair to say that most young people who get cancer, never thought it would happen to them.

But it does: 34 people in their twenties and thirties are diagnosed with cancer every day. It happens. Our experience is so different to those who experience cancer in later life. I'm not saying our experience is worse (or better for that matter), it just comes with a different set of challenges. 

Everything changes

We're forced to think about our fertility, when often we can't decide what we want for lunch. We might be forced out of work – a career that we've worked hard towards and are just edging into. We are forced to watch our peers as they carry on with their lives while we are stuck in a weird limbo – a strange ‘cancerland’, where we don't belong (where no one really belongs).

We are supposed to be our healthiest, strongest, hardest working version of ourselves. Planning our futures. And then by way of a few mutated cells, we are forced to reconsider all of that and everything we thought we knew changes. 

There are few services tailored to our unique needs – so much so that we are known colloquially as the Lost Tribe. It's isolating being the youngest person in the chemotherapy suite. When you tell people you're going through cancer treatment and their reply is ‘but you're so young!’ it's a harsh reminder of how far away you are from where you should be.

'If cancer isn’t a scary enough journey to face in your twenties and thirties, it’s much more terrifying when you feel like you’re the only one'

No one should be alone

As more young adults are getting diagnosed, the Lost Tribe is beginning to get noticed. Charities such as Trekstock – who believe no young person should have to face cancer alone – are designing their programmes to meet the unique needs of young adults by organising regular meet-ups, providing a platform to talk on social media and, the aspect I’ve found most beneficial, offering monthly yoga classes tailored specifically to those who’ve experienced cancer.

I was lucky when I was diagnosed with breast cancer at 26. Not a sentence you’d expect to hear, I grant you, but my breast care specialist introduced me to a young woman of a similar age who was also undergoing treatment. We became firm friends and offered each other an enormous amount of support through treatment and beyond. If it hadn’t been for that nurse and organisations like Trekstock linking patients together, I would have faced cancer completely alone.

This is the reality for so many of the Lost Tribe. And if cancer isn’t a scary enough journey to face in your twenties and thirties, it’s much more terrifying when you feel like you’re the only one.

Nurses are in a unique position. While surgeons and oncologists are getting down to the nitty-gritty business of life-saving in medical terms, nurses are saving lives in another way. They’re the people patients turn to for support and they can offer links to organisations that can make the crucial difference to young people going through cancer treatment.

United with others 

Because we need people as much as we need treatment. We need to be united with others who understand.

We need to see that nod, the one that says 'I get it. I've got you. We are in this together.'

Read Alice-May’s blog and more about Trekstock


About the author

Alice-May Purkiss is a cancer patient, writer and member of the Lost Tribe

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