"We did have a very short time together ... but I have so many good memories"
The widow of rugby player Fintan Hillyard tells of her brave husband's final months, and how a charity in his name is easing the pain of his loss. By Stephanie Bell
It is hard to imagine a more fitting charity in memory of young strapping rugby player Fintan Hillyard than the one being launched next week by his young widow and his parents.
'Fintan's Fund: Making memories that matter for young adults with cancer' encapsulates the unique approach the 29-year-old had to life while battling a rare and aggressive form of the disease.
Fintan was diagnosed with a Stage 4 melanoma tumour in his abdomen two years ago and even though he knew his days were numbered he was determined that every one of those days would count.
Gravely ill but with a fierce determination and optimism he told the Belfast Telegraph last summer that he had just enjoyed the best year of his life.
He had married the woman he loved just a few months earlier in April and together they packed in as much fun as Fintan's condition would allow.
It is these memories which have sustained Rachael (26) in the past months as she faces life without the man she adored.
She said: "We did have a very short time together but I do have so many memories. In the time we did have together we did everything as a couple that we wanted to do.
"I don't really know how I cope and the past nine months have been hard. Some days are more difficult that others and it is not easy but the charity has given me a purpose.
"I did talk to Fintan about what we might do with the funds that were raised for his treatment and although we hadn't decided on a charity he did want it to be used to help others so I think he would approve and be pleased by what we are doing."
This time last year more than £50,000 was raised by friends and family to pay for specialist treatment in Germany which everyone hoped would finally stop the cancer in its tracks and at the very least buy Fintan and Rachael more time together.
But tragically Fintan's condition deteriorated so rapidly that he never got to go back to Germany and although the fund did pay for specialist private radiotherapy in London and Dublin, the cancer eventually claimed his life on December 16 last year.
For Rachael and Fintan's family - parents Paddy Hillyard and Margaret Ward and his sister Mebdh - it has been a gruelling few months coming to terms with life without him, but channelling the funds raised to save his life into a charity to celebrate his memory and help others to have fun has been a huge morale booster.
Rachael says: "Fintan didn't want the cancer to be the only thing that he was about. While he was our whole life we realise that he was only one person going through it and there are a whole lot of other young people going through the same thing.
"Launching the charity has given me another purpose and one which is still linked to Fintan and his personality and the person he was. We are creating a fund for young people aged 18-35 with cancer and we want to be able to give them a fun experience to remember.
"We want them to enjoy life despite their illness and make memories as they see fit. We also will have a database of products and services people can access on our website.
"It is about acknowledging, too, that being that age and ill comes with a lot of issues and we want to give people the chance to take some time out and enjoy life in a way that is suitable for them."
The young Belfast couple had only known each other a few weeks when Fintan was diagnosed but there never any hesitation on Rachael's part about whether she wanted to stay with him and see him through the tough two years that lay ahead.
It was at Christmas in 2012 when Rachael, who is studying for a PhD in foreign policy at Queen's University in Belfast, met Fintan, a politics and sociology graduate at Edinburgh University. He was working on an internship with the Strategic Investments Board.
The couple were still getting to know each other when in February 2013 their world was to change beyond anything they could have imagined after Fintan collapsed while playing rugby.
Fintan had been a keen rugby player while at Methody College but had stopped during his 20s. He had only got back into the game when he was selected to play for Belfast Harlequins 1st XV in AIL division 1B against Bruff.
The talented young player had just scored a goal when he felt an excruciating pain in his side and collapsed on he pitch. He was taken to hospital by ambulance and admitted for tests.
Just two days later he was given the shattering news that he had an aggressive melanoma tumour in his abdomen which was Stage 4, the most advanced category.
It was all the more shocking because it was completely contrary to the common belief that skin cancer appears on the outside of the skin, where Fintan had no signs.
Last June he told the Belfast Telegraph how he coped with his diagnosis: "It was really hard to believe. It didn't make sense as I was leading such an active life. It's devastating but somehow you just cope and get on with it."
In the coming months Fintan was given what was being hailed at the time as a new wonder drug but after four doses it was clear that it was not having any effect.
He was then offered a trial drug in the Freeman Hospital in Newcastle-upon-Tyne, where he travelled seven times but unfortunately that treatment did not work either.
The only other option was a heavy duty chemo drug which had a one in 10 chance of working and which he turned down because of the severe impact doctors warned it would have on the quality of his life.
With Rachael beside him he opted to try and make the most of their time together and instead looked for alternative treatments outside of the NHS.
Through friends they learned of the clinic in Frankfurt where a combination of traditional cancer treatments and natural therapies was producing amazing results for people with secondary cancer.
The clinic was using conventional chemo alongside innovative heat therapy to "shock" the cancer cells into no longer being able to survive.
With arrangements made to travel to Germany, Fintan continued to live his life to the full with Rachael and surprised her in February of last year by proposing during a romantic trip to the Lough Erne Resort in Enniksillen.
Rachael didn't hesitate to say yes and the young couple decided an early wedding would be the tonic everyone needed to cheer them up.
Rachael says: "We organised a wedding in record time. We just thought life is too short and why wait. Everyone had been so down and there was so much gloom that we wanted a celebration, an enjoyable occasion, something that everyone could enjoy."
Fifty guests celebrated their marriage at a reception in the Merchant Hotel in Belfast, with another 50 joining them for an evening party.
While it was a joyous day, it left Fintan so exhausted that he had to spend his first week of married life resting at home.
For this young couple there was no romantic honeymoon as instead they packed their bags in preparation for their trip to Frankfurt, three weeks after their big day.
Fintan's parents footed the £10,000 bill for the first course of treatment which tragically had to be abandoned halfway through because Fintan sustained a neck injury.
His rugby friends launched a fund to pay for him to go back to Germany when his neck healed. At that point Rachael and Fintan had been busy trying to pack as much fun into their lives as they could, attending music festivals, concerts and just living life to the full. They also took part in a 5km fun run together to raise money for a cancer charity.
At the time Fintan said: "It's devastating but I just don't think about it. I don't see the point in dwelling on it as it is not something I can change. You get a new perspective on life and you learn to enjoy the simple things liking walking the dog, having a cup of coffee in the sunshine or even the rain. Having our own home and being able to invite friends round is wonderful.
"Last year was one of the happiest years of my life. When I was first diagnosed we tried to have as much fun as we could and went to everything we wanted to and did as many things as possible.
"For the past six months I haven't had the energy and I can't really do much anymore.
"I met Rachael before my diagnosis and having someone to share your life with makes it much more enjoyable. Getting married and moving into this house together, you feel like proper adults and it's been great."
Tragically a short time after that interview in June of last year Fintan's condition started to deteriorate and the cancer spread to his brain causing seizures.
He still didn't give up the fight and thanks to funds raised by friends he was able to go to London and Dublin for specialist radiotherapy on his brain.
Sadly though it had no effect. When it became obvious that his days were numbered he and Rachael decided to celebrate their first Christmas in their new home in November - just a couple of weeks before he died.
Rachael says: "Fintan was never well enough to return to Germany. Those last months were more difficult than I can express in words. We went from one disaster to another.
"Just when we thought we had hit rock bottom we didn't realise that we had a lot further to go.
"As the weeks went on Fintan needed more care and attention and he found that very frustrating - as a big strapping 29-year-old man it was really hard for him and his family and for me.
"Yet even though it was so difficult we still had lovely times in those last six months. We did things at home to make life enjoyable such as cooking a nice meal or watching a movie together.
"The week before he died at the end of November we decided to celebrate Christmas. We put up a tree and made some festive food and decided there was still fun to be had.
"We hoped he would make it to Christmas but I know now that if he had done so then it would have been a very difficult Christmas for him."
The couple had such a short time together and now as she prepares to launch a charity in his husband's memory Rachael is taking life one day at a time.
She finds comfort in the happy memories she has and in the positive work of the charity. She says: "There are times when I don't know how I cope, some days are definitely better than others. Having so many good memories certainly helps.
"Every day I wake up there is a huge hole in my life and there is no getting round that.
"The charity has given me another purpose.
"We are launching the charity with a black tie ball in Stormont. Fintan would have loved that as he adored dressing up in formal attire. We wanted something to really mark the occasion and to bring everybody together.
"Fintan had high standards and expected people to reach them as I am sure his rugby friends would attest to. Through all this, I keep asking myself would he have approved and I know he would.
"Fintan and I were so overwhelmed by the support from the people who rallied round us and we were both so grateful. Even now since he hasn't been here people have continued to support me and that has helped me to cope.
"I hope through the charity we can show other people some of that support which helped us so much."
You can find out full details about the charity and how it can help you or your loved to build happy memories at fintansfund.com