Lisa McGarry tells Una Brankin how her brave mum Una Crudden is raising awareness of cancer even after her recent admission to the NI Hospice.
On her good days she chats away and browses through shopping catalogues. Other days she's sleepy. It's inaccurate to describe the latter as bad days because Una Crudden and her family are having positive experiences at the Northern Ireland Hospice in Belfast.
Una's pain is well managed. The nurses have time to talk to her, and the numerous volunteers have time to play with her grandchildren, including baby Daire, who was born in March, shortly before his granny's 60th birthday.
"She didn't expect to see her 60th birthday," says Una's eldest daughter, Lisa McGarry. "She wanted to have this big formal party when she was 58 and we did it again in March, in her local bowling club, with a band. She had a great time at the Belfast Telegraph Woman of the Year Awards too. We don't get the chance to dress up for a night like that very often."
Lisa (37), her sisters Grainne (35) and Oonagh (33), and brothers Philip (29) and Nathan (18), are taking it in turns, along with other family and friends, to visit the very popular Una at the hospice. I caught up with Lisa for a chat from her home in Crumlin, where she runs the www.unrealityTV.co.uk website with her husband Gerard.
The couple have been honest with their children Rachel (12), Jake (10) and Daniel (8) about their grandmother's illness. Sister Grainne's children are younger so she bought a book about death to explain it to them. When I last spoke to Una in March, she still had some hope for her recovery.
"She has accepted it now, although I'm sure some part of her is still hoping for a miracle," says Lisa, lightly. "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 the afterlife; we all do. Her faith is a big comfort – she still prays. I don't know if it's still for a miracle but she has the rosary beads out all the time. And she's surrounded by cards and relics and Mass cards."
On the day Lisa and I spoke, Una was sedated and sleepy, but not "as sick" as she was the previous day. Her blood tests last month revealed her ovarian cancer was back quite aggressively and she bravely turned down another course of chemotherapy, opting instead for hospice care at home in Belfast before being moved to the HQ over a week ago.
"The doctors told her there was chemo available but it was very, very severe and dangerous – it could've affected her heart and the chances of it working were about 20%," Lisa explains.
"She said no. She wasn't ill then and up until that point she was fine. She was out walking a lot and lost two stone through going on her new exercise bike four or five times a day. She'd put on weight with the steroids and was on a diet and eating healthily – super soup, loads of vegetables. She had unbelievable energy; I don't know where she got it from!"
Lisa has been extremely close to her mother since the nights they would sit up late together at home in west Belfast, following the break-up of Una's first marriage. In March, Una described Lisa as a great support and tower of strength for her, especially after the latest round of test results.
As she admitted at the time: "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. Lisa's more realistic but she'll say, 'Come on mum, you're four years on and you're still on your feet – just keep going'."
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 Belfast's Victoria Square shopping centre, to see about some unusual sensations she'd been having in the bathroom. Una refused and put it down to previous gynae problems and the Irritable Bowel Syndrome she had been misdiagnosed with. When the doctor eventually sent her for tests at the Lagan Valley Hospital and cancer cells were found, she "squealed the place down", as she put it herself.
"I got straight in the car to go to see her and don't know how I managed to drive," Lisa recalled previously. "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.
"We knew it was bad because everything was suddenly moving so quickly and they found a very large tumour. The thing was mum was never sick – she never got the cold or flu, never smoked or drank. 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."
Lisa had never cried in front of her mother but last summer, after she came home from Portugal to find Una seriously ill with her lungs and "in agony", she went home and fell apart. Seeing her go through chemotherapy and losing her hair was also hard for all the family, but even now Lisa remains stoic.
"I'm okay ... just, what can you do?" she says, faltering only a little. "You can't change the course of this thing; you just have to be there as much as you can. She's weak now but on her good days you can't shut her up. She's totally lucid.
"I couldn't have imagined what the hospice was like. It's so relaxed. The nurses were in with her the other day looking at her Avon book and she was going, 'Isn't that lovely; I'll think I'll order that'.
"They are so kind and good, and there are so many volunteers. They buy the kids ice lollies and bring buns and cakes to mum. We're definitely going to volunteer to help them after this."
After her diagnosis Una insisted her daughters get tested for the BRCA gene, even though she wasn't a carrier herself. She firmly believes, however, that if she'd had her ovaries taken out, as she asked her doctors to do after her hysterectomy at 41, she wouldn't have been diagnosed with ovarian cancer 13 years later. Now, Lisa and her sisters go for screenings three times a year.
"We don't have the BRCA gene but the doctors say there could be other genes they haven't discovered yet, and because mum's is so aggressive, it's best for us to get our ovaries out in our early 40s," says Lisa.
"I rallied a bit and fought against it and tried to put it off. I won't have any more kids but I hate the thought of the menopause. I will do it when I'm 42."
Una began her awareness campaign for ovarian cancer after being disheartened by the Stormont Health Committee's refusal to focus on ovarian cancer as opposed to the disease in general. She astonished Lisa in particular with her courage and new-found ability for public speaking.
"Mum's not the same woman she was five years ago," says Lisa. "She used to be very shy; wouldn't get up to read in the chapel or anything, and there she was, making speeches in Stormont. She's so eloquent and confident it shocks me, and so driven and inspired. I admire her so much."
Una is still campaigning and on her way to the hospice two weeks ago, she announced she would like to make a video on Facebook to ask people to donate to the hospice.
"There was £200 raised fairly quickly and when I told her it went up to £1,800, she nearly fell off the bed," laughs Lisa.
"She loves it. She's so proud and wouldn't take something for nothing. She wants to keep giving back, and I think she has raised awareness massively, much more than any organisation could. The profile of ovarian cancer is much higher than it's ever been in Northern Ireland.
"A friend of mum's, Anne Adair, who's also a sufferer, is taking the mantle now and attending all the meetings that mum can't go to any more.
"It was always her fear that her campaign would be left by the wayside, so she's delighted the Telegraph is still interested in her and keeping it going."
This remarkable Belfast grandmother had aimed to raise £2,000 for the NI Hospice. In a very short space of time donations have risen to £4,000. If ever there was a more deserving Belfast Telegraph Woman Of The Year, it's Una Crudden.
- For details on how you can donate to Una's campaign, visit www.justgiving.com/UnaCrudden Belfast, or text UNAC77 to 70070 to donate £2 to the Northern Ireland Hospice
How Una has brought hope and help to others ...
- Diagnosed with ovarian cancer in 2009, Una Crudden was given three to five years to live. Four other women diagnosed with the disease at the same time as Una – and with whom Una formed an informal support group – have since died
- Una launched an awareness campaign (right) which targeted the Northern Ireland Assembly, calling for a dedicated action plan to raise awareness of ovarian cancer, and recently handed a petition to Health Minister Edwin Poots at Stormont
- The Teal Takeover in March 2014 also saw Belfast City Hall lit up in teal, the colour used by ovarian cancer campaigners
- She has also tirelessly spread the word about ovarian cancer through handing out leaflets in shopping centres as well as on social media, including regularly tweeting to her 2,000 followers
- Although Health Minister Poots has declined to implement a dedicated ovarian cancer awareness campaign, Una has seen some victories. Thanks to her, all GPs in Northern Ireland must now follow specific guidelines when dealing with women who present with symptoms that could lead to ovarian cancer
- The Public Health Agency are also commencing a general cancer awareness campaign over the next couple of years and ovarian cancer will be one of the cancers highlighted. The message will be put on on TV, radio, online and through leaflets
- Una has also lent her support to helping raise funds for and awareness of the work of the NI Hospice (above)
- Earlier this year her courage and commitment in her battle with cancer were recognised when she won the Belfast Telegraph Woman of the Year Award