Cookstown woman Ailis is powered by the gift of life
Co Tyrone woman Ailis Corey battled not only cancer but also the north's funding system which threatened to block her treatment with life-saving drugs. Now the Belle of Mid Ulster and a competitive runner, she tells Jenny Lee how she encourages others to never give up
CELEBRATING life, keeping fit and giving others a message of hope is the philosophy that Cookstown woman Ailis Corey lives by. She has good reason for her optimism, having fought for her life – and survived – on two occasions.
The 35-year-old, from Kildress, was first diagnosed with Hodgkin lymphoma, a rare cancer of the blood and immune system, in November 2008. Over the previous few months Ailis had been feeling tired, getting colds and coughs more often and experiencing weight loss and night sweats, but she just thought she was run down.
Six months of chemotherapy treatment followed and in July 2009 Ailis received the much anticipated news that she was all clear.
She got a new job working in fundraising for the children’s cancer charity Clic Sargent the following year, but just five months into her new job discovered the cancer had returned.
Four weeks into her treatment, Ailis received further devastating news that the chemo was not working. She was admitted as an inpatient to Belfast City Hospital and endured six further weeks of a gruelling new chemotherapy drug. On her 30th birthday she was told that it too had failed.
Next she had to fight not only the cancer in her body, but the authorities in order to access a life-saving new drug. Brentuximab was not available on the NHS, meaning Ailis had to fund it privately or undergo an Individual Funding Review (IFR), presenting her case at Stormont.
“We needed to raise £60,000 to £100,000. It was surreal to think that’s what my life was worth," she recalls.
As an avid Tyrone GAA fan, she was extremely grateful to Tyrone manager Mickey Harte for bringing her plight to the fore through his column in The Irish News.
"The way Mickey trained his team was 'no ifs, buts, or maybes, only total faith' and I brought that to my illness, learning to have patience and total faith that there will be better times ahead," Ailis says.
While she was confident the money could be raised, time was of the essence and Ailis wanted to fight for funding on the principle that patients here were being denied the chance of life.
"The drug was available in Liverpool, Manchester and Birmingham, but not the north of Ireland because we don’t have a Cancer Drugs Fund (CDF) like in England," she says.
Partly due to the collapse of the Stormont Executive this is still the case, as Roisin Foster, chief executive of Cancer Focus Northern Ireland, explains.
"It is deeply regrettable that despite several years of consultation and review, cancer patients in Northern Ireland still face significant disadvantage in accessing new cancer drugs," Roisin says.
"It is inmeasurably stressful for patients to know there is treatment that could offer them longer survival or eased side effects but that this treatment is not available because they live in Northern Ireland.
“Without a health minister, progress cannot be made on this and on other issues that impact on cancer outcomes – waiting lists, access to primary care and pathology services."
After much campaigning, Ailis was granted what she calls "the wonder drug" receiving immunotherapy infusions three times a week and, to her relief, experiencing no hair loss, sickness or side effects.
"I quickly saw in benefits of the more targeted new treatment. That's why research into new treatments is so important," she says.
Thankfully Belfast is at the fore in pioneering cancer research and just last month Leukaemia & Lymphoma NI provided a grant worth £790,000 to Queen’s University Belfast that will see blood cancer research in Northern Ireland go beyond the laboratory and into local clinical trials, with the appointment of a new clinical research fellow.
The next part of Ailis’s journey involved a stem cell transplant from her sister Brenda, whose was a genetic match.
"For five days prior she had to have injections to stimulate the growth of her cells. Then she was hooked up to a machine that collected the cells for a full day. It’s a tiring process, but not as daunting as being a live organ donor. You can recover in a week as everything you have donated is replenished by your own system,” Ailis explains.
She encourages others to consider registering as stem cell donors, as well as donating blood, in particular platelets, which can be done in just half an hour at the Blood Transfusion Headquarters in Belfast City Hospital.
Ailis was given the all-clear in 2014 and admits her battle with cancer has changed her outlook in life.
"I’m a lot more knowledgable about the workings of the human body and I don’t take things for granted any more," she says.
She has also got involved in running and fitness – something she avoided before her cancer diagnosis, but now credits as being "life-changing" and a massive part of her recovery process.
Cookstown's Charis Cancer Care introduced her to a class of gentle exercise specially for cancer patients in the recovery stage. Later she joined Acorns AC running club in Cookstown and got involved in Transplant Sport Northern Ireland. In 2015 she competed in her first British Transplant Games in the 10k cycle road race, 5k time trial and 3k power walk, winning a bronze and a silver medal.
Last year she completed the Great North Run half marathon in Newcastle.
"Never in a million years did I think I would be in a running club, yet alone run a half marathon. It’s crazy it’s taken me such a round about way to discover my love of running," Ailis laughs.
Later this month Ailis will once again compete at the British Transplant Games in North Lanarkshire, taking part in walking, running and long jump events and hoping to secure a gold medal that will qualify her for the World Transplant Games.
"I’ve had the best few years of my life after the worst. Without my cancer battle and stem cell transplant I wouldn’t have discovered the friends I have in transplant sport and taken part in these amazingly uplifting and inspiring games.
"I’ve friends at the minute going through treatment andI have lost other friends along the way. It makes me feel so grateful I’ve been given another chance and I try to take every opportunity to celebrate my life."
Her next opportunity to do just that came when her sister suggested she enter the Belle of Mid Ulster earlier this year. The new pageant, open to all women from the area aged over 18, aims to celebrate the diversity and community spirit of women in the mid-Ulster area and give them a platform and voice.
"A big part of why I do things is that if I can give other people hope. Having been through the mill and having come out the other side I want to encourage others that things can get better," says Ailis, who admits having harboured dreams of being a Rose of Tralee.
Ailis wrote a poem for the event, where she spoke about being "powered by the gift of life" and in which she challenged others to consider becoming donors. “It was a very emotional event and a real milestone of how far I’ve come," she adds.
:: You can register for stem cell donation via the Anthony Nolan charity (anthonynolan.org, for people aged 16-30) and DKMS (dkms.org.uk, for people aged 18-55).