Speaking up about the ‘silent killer’

West Belfast health campaigner Una Crudden tells Shelley Marsden it’s vital women know the symptoms of ovarian cancer

Go to Una Crudden’s Twitter account and you’ll read: “Ovarian cancer: know the signs. Too late for me, but not for you.”  The Poleglass mother-of-five has terminal ovarian cancer, but since her diagnosis, has made it her mission to bring attention to the disease and potentially save women’s lives.

Una is just back from a weekend away with her husband at their caravan in Cushendall. She had a relaxing time, but in a matter of days, she’ll be starting her fourth round of chemotherapy in four years. It won’t save her life, but it will prolong it enough, she says, to see her 18-year-old son through his A-Levels and hopefully into university.

The bubbly Belfast woman, who is known by friends and supporters as the “beggar with the bandana” as she’s always coaxing ballot prizes out of people for fundraisers, is going to shave her hair off in a couple of days before it falls out, firstly “to take control rather than let cancer take control” and secondly, to raise money for the NI Hospice.  She has a series of brightly coloured bandanas in wait that she’ll wear, along with a bit of lipstick and eyeliner and a nice pair of earrings. “If you look good, you feel good!” she says.

It was four years ago this December, when she was 55, that Una was diagnosed with ovarian cancer. It came as a huge shock: “I didn’t drink, smoke, I ate healthily and walked six miles a day, I was more healthily than all my sisters! I was looking after my father who was 86, looking after grandchildren… I just couldn’t believe it.”

Una had noticed that her stomach was badly swollen, and she kept getting sharp pains her side. She also had diarrhea, but put it down to all the fruit and vegetables in her diet, and a touch of irritable bowel syndrome (IBS), which she was prone to. It got so bad, however, that in September 2009, she got an emergency appointment with her GP, who examined her and diagnosed IBS.

When she got home Una thought no, this is different. This isn’t IBS. It was only at a later stage that she learned that ovarian cancer can have very similar symptoms to IBS, and at least a third of women are misdiagnosed with IBS and dying because, by the time they realise, it’s too late and the cancer has spread.

“That’s exactly what happened to me”, she says. “Five women in a four-mile radius that I met through my treatment were diagnosed at the same time as me, and I’m the only one still alive. Every one of us by different doctors, and all diagnosed us with IBS. The youngest was 36, and she left four children. It made me so angry. She’d been going to the GP with her symptoms for two years. If it had been caught, she wouldn’t have died.”

POST-DIAGNOSIS

Una returned to her doctor in December, at which point she could feel something in her ribcage: “said, ‘There’s something wrong with my right ovary’.  The tumour they found was 13 and a half inches, and had already spread to the pelvis – which meant it was terminal. Those four months could have made the difference in my cancer being terminal or not. I was so angry. “

She remembers coming home, bursting into tears and not saying, ‘I’ll never see my children again’, but ‘I’m never going to see New York!’, something her children still remind her of good-humouredly.

Says Una: “That’s one of my dreams but I don’t think it’s going to happen. The travel insurance is too high, my husband is looking after me and I still have a wee boy at grammar school. But it’s a nice dream! I want to swim with dolphins, too. Unless I win the lottery it’s not going to happen… I got to the last five of the Spirit of Northern Ireland Awards last year and the winner went to NY, I was raging! But it doesn’t matter. Getting into the last five was amazing. I got a lovely award and had a great night out at The Culloden Hotel.”

A WOMAN ON A MISSION

“I did go through the ‘Why me?’ stage for a while”, says Una. “I have two daughters and three granddaughters and I was tested, and it’s not genetic. I had none of the typical risk factors. But now, I’ve come to believe that I developed this disease because of the mission I am on now. If this hadn’t happened to me, a campaign in Northern Ireland to target ovarian cancer wouldn’t be happening later in the year, and I wouldn’t be helping all the women that I am.

“I want to make changes for the women coming behind me. I’ve achieved something wonderful; some women live a whole life and don’t achieve what I have in these last four years. That keeps me going. Cancer kills your body but it can’t kill your spirit, unless you allow it to. You have to fight right up to the last minute, and live life to the full. Now I live life like somebody’s lifted a veil, I’m grateful for every season because I’m here to see it.”

FINDING HER VOICE

Una began ringing around the local radio stations, TV and newspapers to tell her story and warn other women about the symptoms of ovarian cancer. She made an address to Belfast City Council, and then to the NI Assembly in Stormont. This autumn, due to Una’s high-profile campaigning, a huge ovarian cancer awareness campaign is being launched in Northern Ireland, and she regularly gives talks, handing out leaflets with important information about the disease.

“People listen because I’ve got it”, she says. “The Ovarian Cancer charity in London flew me to Newcastle recently to give a talk to women there. It’s empowering women to act. If you want to change the world you can’t do it sitting complaining; you’ve got to get up and do something!”

Una has also released a charity CD, Angel of Hope, in aid of the Northern Ireland Hospice which she has so far raised £35,000 for, and is writing a book whose proceeds will go to the same hospice.

She explains: “It’s all about my journey since diagnosis, and when they see that’s it, they can do no more for me, I’ll finish the final chapter and that time will be for me and my family. When I die, the book will be published.  I want people to know you can be strong. At the start, I was like a rabbit in the headlights, but I’ve actually gained confidence and strength as I’ve gone along.”

For the full article, see this week’s Irish World newspaper (issue 24 August 2013).

Follow Una Crudden on Twitter @unacrudden‎.

 

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