Our heroine: We pay tribute to the life of Una Crudden
Una wasn't afraid to die; she had faith. But a flicker of hope for a miracle remained deep within her soul for a long time after she was told her condition was terminal in 2009.
I'll never forget her unusual blue-grey eyes looking up into mine, in awe at a story I was telling her about a spiritual writer I'd met, whom she admired greatly. We were in her room at the hospice, after a pleasant hour in the sun in the Whiteabbey grounds. Although her enviably peachy skin never required foundation, she had made an effort with her make-up, teal shadow on her eyelids and a dab of blusher to colour her pale cheeks.
It was the end of July and she had lost weight since she had been named Belfast Telegraph Woman of the Year at our gala dinner in February, for her heroic ovarian cancer awareness campaign. But she was very much alive and enjoying her visits, and was, of course, ever determined to help save lives by imploring women not to ignore the warning signs of this cruel disease, and not to settle for a diagnosis of irritable bowel syndrome (IBS) when the symptoms didn't go away.
Her own misdiagnosis would ultimately cost Una (60) her life, but on that hot summer's day, death was still something she could fight.
"Will you ask her to pray for me?" she said softly, wide-eyed and suddenly child-like, and utterly vulnerable. I had said I'd send her the latest book by the writer she liked, and in that moment, as those pebble-flecked eyes held mine, I could see pure, unadulterated faith and hope; and despite what fate had dealt her, a heart free of cynicism and bitterness.
Interviewing Una Crudden meant a lot to me. I lost a friend, in her 40s, to ovarian cancer 10 years ago. I remember meeting her to go to the cinema in Dublin, and her saying her stomach had been playing up, and that the doctor had given her something for IBS. The next time we went to the pictures, to see Mr & Mrs Smith a few months later, she was so nauseous she had to run out halfway through. When I went to find her, she was sitting trembling at a table in the cinema's cafe, white-faced and gaunt.
"God, I'm a ghost," she joked as she caught sight of her reflection in a mirrored wall. On the way home she told me she didn't think she had long to live, so we arranged to go for a spa break in Donegal a fortnight from then.
She never made it. I have never seen anyone suffer as much as this girl, a lovely person called Deirdre Lynch, originally from Lurgan. When I told Una about Deirdre's misdiagnosis and subsequent ordeal, she wasn't surprised, and told me about four of her fellow patients who had gone through exactly the same, awful thing.
"I squealed the place down when I was diagnosed," she recalled, during our first interview, back in March. "I had a 13-and-a-half inch tumour and it was in my pelvis, too. There was a girl the same age as my daughter Lisa diagnosed at the same time; I sang at her funeral.
"If I'd had my ovaries taken out when I asked the doctors to do so, after my hysterectomy at 41, I wouldn't have got ovarian cancer 13 years later. And if I hadn't been diagnosed with IBS, I might have had a chance. I felt bitter about the misdiagnosis at first. Here I am, 14 years later, with ovarian cancer, but I think spreading awareness of it is was what God wanted me to do."
Una spoke lovingly of her family during that interview, for our Relatively Speaking slot. I spoke to her daughter Lisa then, too. She has always been a tower of strength for her mother, accompanying her to the endless hospital appointments and scans. It was as harrowing to hear what Lisa (37) had gone through, as it was to process Una's nightmare. She and her sisters Grainne (35) and Oonagh (33), and brothers Philip (29) and Nathan (19), took it in turns, along with other family and friends, to go to see the very popular Una every day at the hospice, so that she would never be alone during visiting hours.
Lisa was the first of the family to be told of Una's initial cancer diagnosis. Before then she had tried to persuade her mother to go into a testing centre that Channel 4's Embarrassing Bodies programme had set up in Victoria Square, to see about some unusual symptoms she'd been having in the bathroom. Una refused and put it down to previous gynaecological problems and the IBS she had been misdiagnosed with.
"When they eventually found cancer cells, I got straight in the car to go to see mum and don't know how I managed to drive," Lisa said then. "She was in the living room; it was the worst moment of my life. She was in total shock and Felix, my stepfather, was shaking from head to foot. I've never felt shock like that. I went to the shop and walked around in a daze. I couldn't talk; it was just awful.
"Mum has accepted it now, although I'm sure some part of her is still hoping for a miracle. But she has made her arrangements and she says to me, 'You make sure to bring the kids to Mass'. She wants to pass that on. She believes in Heaven."
The family found the strength to cope from somewhere, and on that day in July, in place of fear, there were smiles and laughter and witty anecdotes.
Una's husband Felix was understandably very protective of her, and worried that I'd tire her out and ask inappropriately personal questions. But Una was very open, telling me straight away about her twin sister Eithne, who - unlike Una - had smoked for 35 years and who believed it should have been her to become ill.
After 48 hours of sickness, Una had had two good days in a row. She wore a cross around her neck and had fluffy lilac slippers on her feet, which were slightly swollen. We sat under a parasol in the gardens, being serenaded by an acoustic guitarist. Una was in good form; she was delighted to have been alive to see her youngest's 19th birthday the week before. The doctors couldn't let her go home for the occasion, so the party was brought to her. She had worn a special dress and enjoyed the pizza and Kentucky Fried Chicken that was ordered in and shared with the staff, who were genuinely fond of their now very well-known patient.
The loose bandage covering the anti-nausea drivers in Una's right arm were the only real clue to her illness that afternoon. She wasn't on morphine or any painkillers at time, and walked unaided.
I remember her smiling, eyebrows raised, about how flabbergasted her family was by her new-found confidence for public speaking, after so many years of being a bit of a shrinking violet, who would hide behind the organ if she were called upon to sing at her local church.
She believed we are given gifts and courage by divine intervention when we need them, and that's what gave her the strength to stand up at Stormont and put her case forward.
I found it terribly poignant when she told me that she still sang along to tunes on her iPod at night when she couldn't sleep in her hospice room. It was a bright space with an en-suite bathroom and a big bed, with high-tech machines in each corner. Rosary beads, Mass cards and saints' relics covered every spare surface; grandchildren played by the bedside. And all the while Una stayed on-message, reeling off facts and figures in that rapid but soft west Belfast delivery of hers, completely in command of her subject.
She emphasised to me - as she would do again right now if she were able to - that our ovarian cancer statistics are among the worst in the EU; that a staggering 47% of the population thinks the cervical smear also tests the ovaries; and that, as the symptoms resemble those of IBS and diverticulitis, ovarian cancer on average takes six to nine months to be properly diagnosed - often when it's too late.
She didn't hide her frustration with GPs' failure to test for the most fatal illness first, and to recognise the early signs of ovarian cancer, and called for the introduction of a simple blood test for the ovaries. And she told me about a pharmacist and a former nurse dying - due to the lack of awareness - of the disease, which she said had a 90% survival rate if caught in the early stages.
Una raised a small fortune for her campaign and the NI Hospice. She cried with relief when her campaign received the backing of MLAs, and with joy when Stormont and the City Hall changed colour for her Teal Takeover campaign.
There were no tears of self-pity or anger in those soulful eyes the last time I met Una in the summertime, only hope and goodness. I didn't know her very well but remembering her, it's hard to keep my own eyes from welling up. She was a very special, loving woman who has undoubtedly helped save lives, and Belfast is privileged to have called her one of its own.
How she turned personal tragedy to public good
1995: Aged 41, Una has a hysterectomy and asks for her ovaries to be removed. Her request is declined
Summer, 2009: Una is diagnosed with IBS
December 2009: Scans reveal cancer in Una’s ovaries and pelvis. She is given three to five years to live
January 2010: Una begins chemotherapy treatment at the City Hospital and meets four other women, all living within a four mile radius of her home in Poleglass, who were similarly misdiagnosed. All four died before Una, the youngest at 36
Spring 2010: Una contacts the media to begin her awareness campaign and approaches local councillors for help
Summer 2010-2014: Una begins giving talks all over Northern Ireland, and addresses the Health Minister and the Health committee at Stormont, as well as Lisburn and Belfast City Councils
February, 2014: Una wins Belfast Telegraph Woman of the Year award
March 3, 2014: Una persuades Belfast City Council to light up the City Hall in teal to mark ovarian cancer awareness month. Stormont is also bathed in teal light. It is the first time the disease has been acknowledged by any Government building
May 2014: After Una’s meeting with the Public Health Agency, an Ovarian Pathway is introduced to GPs all over NI, to help them detect the early sigs of ovarian cancer
June: Una declines to take a final round of harsh chemotherapy
July: Una enters the NI Hospice for palliative care, which she also receives at home, when appropriate
September: Una’s long five-year wait for an ovarian campaign finally gets the go ahead at Stormont
Thursday, December 4, 2014: Una passes away, almost exactly five years after her terminal diagnosis
In her own words
- I'm not ready to die . I have a lot more to do. I'm not here (at the hospice) to die; I'm here to be cared for. It's a second home to me now, a home from home. The staff has time to talk to you and they'll give you anything you want, and the doctors explain everything in lay man's terms, about medication and the prospect of dying. I find it harder to talk about that with my family.
- I got my courage and passion from anger . I had to stand up and protest. There was no point in sitting around depressed. I'm a very spiritual person and I believe in the power of the Holy Spirit gave me the strength, and that's that.
- I had to put a nice dress on for my baby's 19th birthday. I had asked God not to take me until Nathan was 18 . and I got an extra year.
- I'm seen as a bit of a celebrity here because of the campaign but these ones (family) tell me I'm still a pain in the a**e!
- I'm always praying for a miracle and thinking they're going to tell me I'm cured when we go in for a review, and I'm always gutted when they don't. It's not easy for any of us but we cope.
- The closer you get to death, the more spiritual you get. I'm not afraid of death. It's easier for me; it's harder on the ones you leave behind.