We are here to stay, says breast cancer charity Aurora

THE brief was simple enough: To throw the forgotten 20 per cent a lifeline.

With virtually no age-appropriate support for the growing numbers of women in Swindon diagnosed with breast cancer under the age of 50, the small team of survivors, nurses and doctors behind charity Aurora had their work cut out.

But they muddled through, roping in experts, counsellors and volunteers to champion the needs of and give renewed hope to the overlooked minority.

One year on, the charity is celebrating a major breakthrough for patients across the region.

“It’s been quite a challenge but such a privilege,” said chairman Anushka Chaudhry, a consultant oncoplastic breast surgeon at the Great Western and Ridgeway Hospitals.

“We’re all been busy and had personal things going on over the last year so keeping things ticking forward has been hard.

“But each day you go into work and you see someone who needs you, you just can’t do nothing. You have to keep going.”

Age is becoming the disease’s greatest divide with eight in 10 women diagnosed over 50.

Not surprisingly, this has meant most charities and campaign groups in Swindon and around the country have concentrated their efforts on the majority, inadvertently leaving pre-menopausal patients struggling without age-appropriate support and targeted information.

At an impasse, Anushka set out to build her own charity from the ground up last year with the help of fellow health professionals and survivors.

“There are fantastic support groups in and out of Swindon but we needed something for young women specifically,” she said.

“The issues women under 50 face are very different from post-menopausal women. It hits them at the most proactive time in their life.

“Unfortunately, when cancer declares itself early, especially in women in their 30s and 40s it tends to be more aggressive.

“They may have young families or be about to start a family; or not have had a chance to decide whether they want to.

“The treatment will involve chemotherapy and that can put women in early menopause which means they may never have children.

“The issue of fertility, coupled with coping work during treatment can be really difficult.

“Childcare is also a big issue and we wanted to find a way to support people with home help.”

Aurora volunteer Holly Scott-Donaldson, from Pewsey, was 43 when she was diagnosed with breast cancer in January last year – her youngest child was just one at the time.

“It’s just exhausting,” she said. “After the chemotherapy, I had to look after my child. I put on the Teletubbies and tried to stay half-awake when all I wanted to do was crash.”

“It’s completely life-changing, just terrifying.

“Ironically, I run a business that teaches people how to get back into business after a life-changing event.

“Throughout treatment I had my own coping mechanism but the problem was afterwards. No other group answered my question of ‘what now?’ “What I needed was to speak to someone like me, who had done it all.

“You go through chemo and radiotherapy and on the last day, you break down. You don’t know what to do. It’s like grief, you’re fine until the end of the funeral. I was on my knees with fear of the big wide world.

“The fear doesn’t go away but Aurora gave me the support and the information I needed.”

Anushka said: “PTSD is a big problem after treatment and we want to help women put their life back together afterwards.

“One of the biggest issues is the fear of it coming back. No one can answer the question, ‘will it come back?’ “It’s how we can help women deal with that worry and find coping mechanisms that work for them.”

Trustee and survivor Tania Currie, who was diagnosed with breast cancer at the age of 49, said: “It’s a traumatic experience.

“I’m a nurse at the Great Western Hospital and people expect you to know about all this but my background is not in breast care.

“I was just like any other patient and dealing with it was just horrendous.”

Every year approximately 9,800 breast cancer cases out of the 55,000 diagnosed in the UK are younger women. Breast cancer is the most common cancer in women aged under 40.

Last year Anushka treated about 100 patients under the age of 50 in Swindon.

“It’s becoming ever more present,” she said.

“The statistics nationally are staying pretty much the same as last year but it feels like this year we’ve had a bit more of an influx of young women.

“I have a least eight patients between 23 and 32. And even between 23 and 32 or 32 and 50, there is a huge gap and they have completely different issues and need bespoke information and advice.”

Anushka’s goal was for Aurora to be a one-stop-shop for pre-menopausal patients, offering one-on-one counselling, useful medical information and practical advice on such things as financial aid and childcare.

To ensure all bases were covered, she and fellow volunteers immediately set out to partner up with local organisations to become, in effect, a referral service signposting members to appropriate or specialised charities when necessary.

The enormity of the task ahead and dearth of suitable support was truly brought home to the team at the charity’s first seminar in March.

About 25 patients and survivors attended the event at Alexandra House, in Wroughton.

It saw them take part in a host of workshops on anything from laughter therapy to coping strategies.

Many were also treated to holistic therapies and a spot of pampering.

The seminar finally gave Holly a safe platform to process and come to terms with feelings she had carefully buried during treatment.

“Sometimes you can’t allow yourself to feel the enormity of the whole thing because it’s too much to deal with, and nobody around you really understands – until you meet a kindred spirit and that room was full of them,” she said.

“You could just let go and share. Aurora has been a life saver.”

While the team is planning to hold at least one seminar each year, Anushka is keen to schedule smaller specialised sessions focusing on a particular medical issue or topic to touch upon every aspect and byproduct of the disease.

This might include its repercussions on patients’ family life, career or mental wellbeing.

“We want to provide information about nutrition, reconstructive surgery, the types of implants available and new research,” said Anushka.

“A lot of the patients have children and we’re looking to do a separate session, in a more casual setting with patients and their children or maybe just parents.”

Holly is currently designing a Back To Life magazine app, which will act as yet another outlet for Aurora to reach patients, offer guidance, share survivors’ personal journeys and updates on the latest research. It is due to go live next year.

Even with the unflagging support of volunteers like Holly and Tania, the team can only go so far without the community’s ongoing financial backing.

Putting on one seminar alone cost Aurora £2,000 and funding remains a major hurdle.

“It would be amazing if people could run small events for us, like coffee mornings or do fun runs.

“And we’d also be happy to go and visit businesses that have a big female workforce and run education seminar in exchange for a donation,” said Anushka.

“We want to slowly build up enough in the bank to give Aurora a good chance.”

To find out more about Aurora, sponsor the charity or volunteer email aurorabreastcancerwellbeing@gmail.com.