Sharon Donnelly has a large clock on her bedroom wall.
Its hands tick steadily across its face signalling every second of every minute of every hour as she plans her day and the Donnelly family’s busy schedule.
What it cannot do is reveal just how precious each of those moments are for the mum-of-two.
But Sharon, 42, has no time to waste and makes everyday decisions with love, precision and a practicality others might struggle with, from how well her son’s school shirts are ironed to what’s in her fridge at home.
Because Sharon’s bedroom is situated in the very heart of the Northern Ireland Hospice and her time now is terribly limited.
But with typical generosity, she has chosen to give some of that time to help others; friends and family who love her, people she will never meet and others who will face the same future she is looking into.
Sharon, a professional make-up artist, said: “I want people to know not to be afraid of the hospice. I didn’t want to come here myself at first. I thought I knew what it meant and I was desperate to stay out of here.
“But I’ve learned it’s not a place to help me die, it’s a place that is helping me live and live with as little pain and distress as possible.
“There have been tears and there is anxiety but it seems we can handle it here.
“We have asked all the questions people ask about how life deals things out.
“But in the end we know that we just have to get on with it and the hospice offers us help to do that every moment of the day and night.
“The help we have had as a family, and me personally, cannot be overstated. It is not easy speaking out. I’m a pretty private person but this is my thank you, my message to all the staff here for their care and kindness to us all as a family.
“And it’s my message to anyone who comes behind me to say don’t worry, keep at it, never give up and take all the help and care you can.
“It’s what gets me through every day and I can see the help it gives my husband Kevin who keeps us all going in the best and worst of times.”
Sharon’s beautiful room with its photos, decorations, wedding anniversary and get well cards is now home for the Donnelly family from Crumlin, Co Antrim . They all eat there, sleep there and laugh and banter with each other.
And although Sharon knows she is closer to death than any 42-year-old should be, there is no gloom and no obvious despair.
Sharon knows this is the room where she will say goodbye to her boys Kevin, 18 and 14-year-old Nathan.
It is where she will feel her husband Kevin’s hand in hers before their final farewell.
It is where she is living with a cancer that has hunted her down and taken the cruelest toll despite every effort, endless treatment and her own mammoth personal battle in mind, body and spirit against the disease.
Sharon said: “The reality is that I have plans. Of course I want to make sure my sons and my husband know that I am living. But I know I am very sick and this cancer will not just go away no matter how hard I fight or how much medication I take.
“When I got the diagnosis in 2012, I decided the fight was on and I’ve been fighting for five years and I’ll fight for as long as I can.
“I have been living every moment. I rest as much as I can in the mornings so I can get organised for the afternoon when the boys come over from school so we can have a chat or go shopping.
“Today we are planning to go to the Abbey Centre because I want to get some furniture and bedding sorted for the house. There will be a time when I won’t be here and I want them to be prepared and comfortable.
“It’s as simple as that. I’ve had to face the reality of this illness but I’ll never give up and the hospice and everything it offers, allows me to keep fighting.”
Sharon was diagnosed five years ago with a rare cancer that initially presented itself as a digestion problem.
Sharon’s husband, Kevin, 44, explained: “It is still beyond belief when I say this because I know how careful Sharon always was about her diet and physical health and fitness. She was 35 when she started struggling with digestive problems and various investigations revealed nothing sinister.
“But 15 months after seeking help she was diagnosed with a gastrointestinal stromal tumour. It’s a cancer of the digestive system which starts in the stomach wall. If caught early it is treatable but by the time Sharon’s was caught, it had moved to her liver and now it has crept into her bones.
“So from the start we were told she would be treated palliatively so there was no cure at that stage but she could live with the cancer if we could keep it at bay.
“One tablet a day kept her safe for a while and then the treatment changed to keep on top of it. But then the cancer got really sneaky and moved ahead of the medical minds and appeared in her bones, her spine, her neck.
“She could even feel the tumours growing and she knew the reality of what she was facing but she never complained and just kept on asking what the medical teams would do next. But now five years on Sharon is very, very sick and treatment is no longer an option.”
Kevin says the family decision to talk about life in the hospice has been an important part of their fight for life and living.
The company director explained: “We are not pretending any of this has been easy. It’s not easy. It’s not fair, it’s hard and it’s tough on everyone.
“Sharon is right here, right now and very much with us but the truth is that we are facing saying our goodbyes and that is unbearable to me and to our sons and of course, to Sharon.
“But she is so brave and so positive, I feel I have to be strong because the prospect of what I’m facing is nothing to what she is facing - and as usual she keeps us right.
“That decision was made by her in 2012 to fight and if it was a fight to the very end, then we would face that. I think to be fair I just thought we were facing a tough time and we’d get through it and come out the other side as a family.
“But the reality is that when we come out the other side, we’ll be a very different family and our lynchpin, our mum, our wife, our very core, will be missing.
“I don’t know how we’ll cope. I have no idea how prepared we’ll be when the inevitable happens but the one person who has done the most to prepare us is Sharon, the one person who should be thinking only about herself. And even today, giving this interview to ease the upset and worry of other people she doesn’t know, is typical of Sharon and her goodness.
“The hospice is enabling us to remain a family and that’s invaluable. They have made dreams come true for Sharon from going to the Opera House to see Alexandra Burke thanks to the care team. And they made sure we could have a service to renew our wedding vows on our 21st wedding anniversary.
“It’s about living not dying, thriving not surviving and having time to say and do the little things that we will all remember.
“When Sharon was being treated in the City Hospital she was content and very well looked after but when she came to the Hospice, she didn’t crack a smile for three weeks.
“She missed her friends, the staff at the City and she was in the mindset that the Hospice was the end. It’s nearly 11 weeks now that we’ve been here and Sharon thinks so much of the Hospice that she’s giving up her time to let people know this place is filled with love and care and it is not a place to turn away from, it’s a place to come into with confidence.
“Sharon has had the care of the hospice staff but we’ve also been able to provide hands on-care whilst being supported by the staff. Sometimes there’s a trade off in the minds of family members they if they take their loved one home, then they can keep control of their personal care because that is what they’d want.
“But the hospice facilitates family members who want to provide care to their loved ones alongside the nursing staff who are available at all times.
“It’s important her message gets through because sadly we know there will be many families following us on this journey. If it has to be faced then there is no better place to help and we know that now.
“Everything Sharon has done, from giving up working to bring up the boys when they were young, to retraining as a make-up artist as they got older, to fighting this illness, to agreeing to come to the hospice and to speaking publicly about our worst nightmare, it has all been done for the boys, for the family, for everyone else.
“She is selfless and kind and if we have to say this is the legacy my beautiful wife will leave behind, then I couldn’t love her any more and I couldn’t be more proud of her.”
You can donate to a Just Giving page raising money for the Northern Ireland Hospice on behalf of Sharon Donnelly here www.justgiving.com .