'Mum fought for other cancer patients, now she would want me to do that, too'
When Emmette’s late mum had breast cancer he’d to pay for her to have screening because she was under 50. Now, he wants women of all ages to be offered free tests
Emmette Dillon, a nurse in Londonderry, says that if he can help save other lives then his mother’s death will not have been in vain.
When mother-of-four Annemarie McFadden went to her GP complaining of a swollen arm and feeling generally run down, she knew something wasn’t right.
Not normally one to grumble about any ailments, she’d been feeling unwell for a while and her progressively puffy arm was beginning to alarm her. Annemarie’s doctor examined her and immediately sent the 39-year-old for a mammogram and a surface biopsy, which showed that she had stage three breast cancer. The social work student was offered a choice there and then — go private and pay for more in-depth testing or wait 12 weeks for a further screening and deep-rooted biopsy. Annemarie was naturally shocked and devastated at the news and didn’t want to hang around to discover the prognosis. So her son Emmette Dillon, a nurse at Altnagelvin Hospital, offered to pay straight away to give her peace of mind.
"Because mum didn't meet the age criteria of 50, she was told she'd have to wait 12 weeks for the full testing," he explains. "Her cancer was already stage three and was told it was aggressive. When you get that type of news you don't want to wait around. Mum was distraught, she needed to know if it was terminal and if it had spread and only a deep-rooted biopsy could tell us that and what treatment she could be started on immediately.
"She didn't want me to pay privately but there was no way I was going to make her go through 12 weeks of not knowing, so I paid for her to go private and have the test the next day. Mum found out she had stage four cancer and had six months to live.
"I understand about the funding problems facing the NHS. I work as a nurse, but screening should be made available to all women, regardless of age. It's the same as cervical cancer and the way they're campaigning to try and get more young girls tested for that.
"Everyone in the family was equally devastated. It was so surreal that someone aged 39 could be diagnosed with breast cancer yet within a few months we'd heard of other women in our area who were diagnosed at the same time, women in their late to mid 30s and early 40s. It quickly became apparent that more and more young women are being diagnosed yet the full screening isn't available to them until they're at least 50."
Following the diagnosis, Annemarie was told that any treatment at this stage would be palliative, to try and manage her symptoms and prolong her life. She underwent six months of chemotherapy and six weeks of radiotherapy. Despite feeling ill from the treatment, she made an effort to get out and about in the fresh air, going for walks on the beach, spending time with her loved ones. Annemarie went on to to defy the doctors' initial prognosis of six months and battled the illness for another seven years.
But on February 20, 2014, Annemarie passed away. Emmette says it was a relief in the end, to see her at peace and no longer suffering.
"As a nurse, I was aware of what was happening and it was hard, seeing her so confused and watching her body shut down," he says. "We were all with her, whispering in her ear, telling her it was okay to go, willing her to leave us.
"We all felt sheer devastation after she died. I felt very lost for a while. Mum had been my best friend, my champion, my leveller. We fought like cat and dog sometimes because we were so alike.
"But my mum was the type of person who had to be doing something. Even when she was ill, she still managed to do things. She finished her social work degree, she got married, she swam with dolphins, she was an advocate for young cancer patients, I was ghost-writing her biography. She thought it was important to fight for the rights of cancer patients and now that she's gone, I know it's what she'd want me to do too."
In the months that followed his mother's death, Emmette turned his attentions to launching a new campaign #BeBraveBeBodyAwareBeCancerFree.
The aim of the campaign is threefold - to legally safeguard the rights of cancer patients, whom Emmette says are among the most vulnerable in society; to encourage people to be aware of their bodies and any physical changes and, most importantly, to ensure breast cancer screening is available to all women, regardless of age.
The campaign has been running on social networking sites and to raise awareness and funds, Emmette, with the help of some friends, a few local businesses and one or two well-known Londonderry faces, produced an "implied nudity" calendar, similar to the one at the centre of the popular movie Calendar Girls.
"I feel very strongly that cancer patients should be looked after properly under vulnerable person legislation," he says. "Many cancer patients live under the poverty line and also have to deal with things like social exclusion.
"There should be a unified system that if you are classed as having a certain stage of cancer, you should automatically avail of some type of payment. Then this could be decreased if you go into remission and are deemed safe to work. Lots of companies won't accept you back until you pass occupational health screening.
"There are families out there losing their homes or being threatened with repossession because critical illness cover on mortgages is sometimes not worth the paper it's printed on. When people hear that someone has been given a cancer diagnosis, they immediately assume the government or mortgage company will work to some type of agreement to support them. But that's not always the case.
"My mum was turned down for disability living allowance for most of her illness and was told by a doctor she could work 16 hours a week when she was going through intense chemotherapy and couldn't get out of bed.
"This isn't something out of the ordinary. I've heard of cancer patients being brought to an assessment in front of a panel, even though their GPs and oncologists provided reports saying they were not fit for work.
"This is happening. It's very real. Cancer patients are being made to justify their illness and this needs to stop."
Emmette also wants people to become increasingly aware of their own bodies and any changes, however minor, that might occur.
"If you detect any changes you're not happy with, go to your doctor," he insists. "And if you don't feel right, keep going back. It's your body and you know how you feel.
"My mum was lucky in that she had a good GP who pushed her to go for the screening. But anyone who presents as symptomatic should be sent for screening. That's the bottom line."
And this is the crux of his campaign. Emmette believes full breast cancer screening is a right for all women, not just those over 50 years of age. According to the 26-year-old, a more "open-door", inclusive screening policy would make GPs feel happier about making referrals. "Doctors have to justify every referral they make," he says. "I work in a hospital, I know that people in health care are dancing along red tape. There should be a more open culture, that if someone is symptomatic, regardless of age, they should be able to avail of testing.
"In Liverpool, at the Linda McCartney Centre, people can walk in off the street and have a mammogram, if they are worried.
"In this day and age, with obesity, smoking, processed foods and exposure to radiation, the pathophysiology of cancer is ever changing. More and more young people are getting diagnosed with cancer. So why aren't we screening everyone?
"Just because someone is a certain age doesn't mean they don't have cancer, it's almost like lulling them into a false sense of security.
"The problem is we have men in suits, sitting behind desks making decisions."
Along with his cinematographer friend Tommy White, Emmette encouraged local women - and men - to bare (almost) all for the fundraising calendar, with businesses in the Derry area sponsoring each page.
"We didn't want to limit the calendar to just women, as testicular cancer is on the rise," says Emmette. "So we got blokes involved too. After all, cancer doesn't discriminate, it doesn't care what your profile is."
The next step in the campaign was the release of a recent single, written by Emmette, performed by Derry singer Dylan Reid and produced by Paul Casey.
Walk With Me is an ode to Annemarie, a poignant open letter from Emmette to his mum. The idea to write the track came about after he'd bumped into an old college friend of his mum's, who had been away for a while and hadn't heard the news of her death. Recounting the story brought it all back to Emmette so he decided to put his thoughts down on paper and turn it into a song.
"That night, after I met mum's friend, I wasn't able to sleep," he says. "Grief hits you in waves and I was just lying there, wide awake. So I got up and wrote some lyrics in my phone.
"I was basically asking her if she was proud of me, would she show me some sign that she was still there, that type of thing. There are a lot of unanswered questions when someone you love dies. The song isn't just an open letter to my mum, but to anyone who has lost a loved one through cancer.
"I told my friend Dylan about it and he agreed to lend his vocals to the song. He came round to mine, tweaked the lyrics a bit and wrote a melody in just two hours. He's an amazing talent.
"I'm not looking to upset people. Cancer is very real and it's likely it will come to all our doors.
"I just want people to be aware so they don't leave it so late that they can't get successful treatment. I want to help people avoid the devastation and pain my family went through."
Money raised through the #BeBraveBeBodyAwareBeCancerFree campaign will go to the Foyle Hospice and the Marie Keating Foundation, set up by the family of pop star Ronan Keating following the death of his mum Marie. Emmette says he's not discounting medical evidence when it comes to breast cancer screening or trying to scaremonger, but merely wants to encourage more people to be health aware.
He also says he believes his mum and countless others could have been diagnosed earlier if age restrictions on screening didn't exist.
"Mum's GP pushed against the boundaries that were in place," he says. "Had those boundaries not been there, then yes, I believe my mum and other individuals could have been caught at an earlier stage. Of course, there is an obligation on people to look after themselves. You won't catch a bus if you're sat at home on your sofa. You have to go to your doctor and push for a diagnosis.
"But I'd like my mum's legacy to be that everyone is tested, regardless of age, and that women aren't disregarded because of a tick box exercise. I want to see cancer patients safeguarded and treated with dignity."
I ask Emmette if he feels angry about his mum's death.
"Anger and negativity are wasted emotions," he replies.
"I'm just determined to make sure it never happens again and that people aren't coming up against age-related criteria. The screening process needs to be more open minded and not based on cost analysis. Why are we campaigning about drink awareness and smoking cessation? Because public awareness campaigns work.
"If we are seeing cases of women in their 20s and 30s presenting with breast cancer, then let's bring the age for screening down to 35. Why are we only screening women aged 50 and over? It's time to change this."
Walk With Me, which was launched independently with the support of a number of Londonderry businesses, is available via iTunes/GooglePlay/Spotify/Amazon. The music video can be seen via the link http://m.youtube.com/watch?v=ZIrl32nFIIU
Why early screening is vital...
- In the UK every woman between the ages of 50 and 70 is invited for a mammogram every three years as part of the NHS breast cancer screening programme. In England, the screening programme is currently extending the age range for breast screening from 47 to 73. Women older than 70 can ask to carry on having screening every three years.
- Even with the breast screening programme, many breast tumours are first spotted by women themselves. This may be because the woman is too young to have started screening or because she stopped having screening when she reached the age of 70. It could also be that a breast cancer starts to cause symptoms between mammograms, which is known as an interval cancer.
- The earlier breast cancer is diagnosed, the easier it is likely to be to treat it and the better the chance of a cure.
- Being breast aware simply means getting to know how your breasts normally look and feel at different times of the month. If you notice a change that isn’t normal for you, talk it over with your practice nurse or doctor and ask for a referral to the breast clinic.
- You are checking for changes in the size, shape or feel of your breast. This could mean a lump or thickening anywhere in the breast. Most people naturally have one breast bigger than the other. It is a change in size or shape that you need to watch out for.
- If you feel worried that you don’t know how to feel your breasts properly, there are people who can help. Talk it over with your doctor or nurse, staff at a well woman clinic or a breast cancer organisation.