'Why I wanted a tattoo on my mastectomy scar' By Lucy Wallis

BBC Stories Published duration 19 January 2019

image copyright Kris Hallenga

At the age of 23, Kris Hallenga was diagnosed with terminal breast cancer. On average people given this diagnosis live for two-and-a-half years, but 10 years later she wants people to know that it is possible to beat the odds.

A tightrope artist walks along the line created by Kris Hallenga's mastectomy scar.

"I got the tattoo maybe three years ago now, it's to represent the balance of any illness with life and everything else," she says.

"I didn't want to cover up the scar, I just wanted it to feature within the art piece."

image copyright Kris Hallenga image caption Kris's friend, TV and radio presenter Fearne Cotton, designed her tattoo

Kris has never tried to hide or deny her condition. Instead she has embraced it as part of her life.

"What happened to me couldn't really be changed, and I think getting to grips with accepting your situation is going to be much better than fighting something. That's why I don't see the cancer in my body as this enemy, because I don't think that's particularly healthy. I think we need to work with it rather than against it."

When diagnosed with advanced breast cancer in 2009, she decided not to get angry, but instead set up a charity called CoppaFeel, to raise awareness of the disease among young people and encourage them to check their breasts regularly.

image copyright Kris Hallenga

Even before her diagnosis, she had become aware how fragile life is. She was left shaken at 15 by the death of a grandmother. Then, five years later, her father died.

"When I was diagnosed at 23 I was already au fait with mortality and that we weren't going to live forever," she says. "So I think that helped with my attitude and coping with the reality of the situation."

On 19 February, 10 years will have elapsed since the moment she was told she had stage-four breast cancer.

"Stage-one cancers are very small, limited to the breast," says Kris's doctor, consultant clinical oncologist Dr Duncan Wheatley. "Stage two and three are when it's starting to spread to the lymph glands around the breast and then stage four is when it's spread from beyond the breast to somewhere distant, whether that's liver, lung, bone, brain."

He says there are different degrees of stage-four breast cancer, but they are nearly always incurable.

Kris's cancer had already spread to her pelvis, liver and hips and she also had a tumour in her brain.

"When I was diagnosed, I didn't think that I would die within the two-and-a-half years - that is statistically what you're given when you're diagnosed with stage four - but then I also didn't think that I'd survive for a really long time. I just didn't really have any timeframe in mind."

She says no doctor has ever given her a personal prognosis, and she says she is glad about that, "because I think that would have really held me back, and I don't believe in those timescales".

Her own doctor, Duncan Wheatley, says survival rates vary depending on the biology of the disease - some cancers can behave much worse than others even if they look the same. But there have also been scientific advances in the last 10 years, so quite a few of the drugs that Kris has been given were not around when she was first diagnosed.

"The treatment options are expanding," he says. "So [we can] treat breast cancer more as a chronic disease rather than something that kills you rapidly, in the same way you treat high blood pressure and heart problems as a chronic disease that you don't get rid of but you can keep people going."

Patients like Kris who do much better than predicted are often referred to as "long-term survivors".

image copyright Kris Hallenga

It's written into the contracts of all CoppaFeel staff that they take the day off every 19 February and do something that reminds them why being alive is so great. This could be spending the day with family or going to see an exhibition they had been meaning to see.

This year Kris is planning to have a party with friends and family.

"I would like to look back over the last 10 years and have a good laugh about all the silly things that we got up to and all the milestones for the charity. I think that will be really fun," she says.

She has changed a lot as a person over the last 10 years, but one thing has always remained the same - her positivity.

"I wasn't a particularly confident person before I was diagnosed, so I wouldn't recognise the person that I was the day before I was told I had cancer, she is very strange to me now," says Kris, "but then it has been 10 years and I think you change a lot between 23 and 33, so that's probably common for a lot of people.

"But I like who I am and I like who I've grown to be and if it's cancer that's done that, then so be it, I think that's OK."

Kris says her determination to raise awareness among young women has been "one of the key factors as to why I'm still here".

"I think having that purpose and having that need to get out of bed - I mean that seems very mundane - but when you're ill you don't sometimes fancy that."

She feels the real results of her work will not be seen until the young women she is urging to check their breasts start to reach middle age.

The chance of developing breast cancer before the age of 30 is about 0.05% or one in 2,000, which increases to one in 50 or 2% before the age of 50 . One in three women diagnosed with breast cancer in the UK is aged over 70.

"When they get older and they hit the age bracket where breast cancer's really common, once they're at mammogram age, that's when we will probably see the real impact of our work, because they will know their boobs so well by then and get an early diagnosis."

image copyright Kris Hallenga image caption Kris (left) with her twin sister Maren

Although she stepped down as CoppaFeel's CEO a couple of years ago, she still works for the charity part-time. She also moved from London to Cornwall, where she lives with her cat, to be closer to her twin sister, Maren.

"I do a walk on the beach once a day," she says. "I just find it so much easier and better to be calm and grateful in this huge expanse and so I love being outside. I love spending time with friends. I love cooking, I love food, I love all the good stuff, nothing crazy, my hobbies aren't mad. I just like being alive.

"Just spending a day with my twin sister where we go and try out a new café and go for a walk and come home and watch some crap telly - that is a cool day for me."

But she also continues to sometimes do things that are out of the ordinary too. At the end of last year, for instance, she took part in a music video for the girl band, Little Mix. The song, called Strip, promoted female body confidence and brought together inspirational women.

image copyright Little Mix image caption Kris Hallenga was one of the inspirational women in the Little Mix video for the song Strip

"I got to choose what I wore and I wanted my mastectomy tattoo to be visible," Kris says. "I wanted that to be quite an obvious thing. I didn't want to wear something with my prosthesis in. No-one told me that I had to make it obvious that I only had one breast, but for me it was important that we did, otherwise what was the point of me taking part in the video?

"There's a lot of pressure on women to be symmetrical, with cancer or without, and I've had messages from people since the video [saying], 'Today I went without my prosthesis, I just couldn't be [bothered] to wear it and I felt better about it,' so that was really cool."

Kris aspires to be like the tightrope walker in her tattoo, striking a steady balance between her life and her condition but doesn't always succeed.

"I'm not always completely balanced and able to control everything at all times, especially when the cancer has decided to be active again, then I get into quite a tailspin," she says.

"But I guess what evens me out again is knowing that I've had tough times in the past and I've got through them. I've already done so much with my life. I'm really happy with what I've achieved. I've done amazing things, so I think I can be really proud of that. And that's not me submitting to death, that's me just saying, 'Well, I don't have the pressure any more.'"

Further help and advice

Recently Kris discovered her cancer has progressed again and she describes herself as being in "limbo land" at the moment about what treatment she might need.

"The other day I had some brain lesions zapped with special radiation therapy," says Kris.

"That stuff is amazing, I've had that quite a lot and so my brain is now back under control - my liver isn't - so we are trying to work out the next steps, but I don't want to rush into anything.

"I haven't opened the chemotherapy cupboard for 10 years so I might be doing that, I don't know, but I take these decisions very seriously."

"I wish I hadn't met her in this way," says Duncan Wheatley, "but she's a very inspiring person because of all that she's done and continues to do."

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