To mark International Myeloma Month, Eleanor Wolfenden-Orr talks to Stephanie Bell about raising £100k for research
Eleanor Wolfenden-Orr has learnt to live one day at a time after being diagnosed three years ago with an incurable blood cancer. Her positive attitude sees her enjoy a good quality of life, and continued breakthroughs in treatments for myeloma have kept the cancer at bay and ensured her health is good.
Today, she and husband Sam can be found behind the counter of their famous antiques shop in Portrush which Eleanor has run for over 40 years.
A giant of the antiques world in Northern Ireland, she first set up Kennedy Wolfenden Antiques and Jewellery on Belfast's Lisburn Road - a go-to outlet for antiques collectors for 30 years.
A Randalstown native, she commuted to Belfast every day but always had a love for the north coast, where she and Sam have a holiday home in Portstewart.
In 2003 she opened a second shop in Portrush and eventually closed the Belfast outlet. Now, she divides her time between her homes in nearby Portstewart and Randalstown.
The esteem in which she is held in the business and antiques world was apparent last year when clients, friends and family rallied round to support her in a major fundraising ball organised in aid of research into myeloma.
More than 400 people paid £100-a-head for the black tie event in the Tullyglass Hotel, in Ballymena, helping Eleanor (66) and Sam (75) raise over £100,000.
For the couple, who met in 2001 and married in 2003, it was important to both of them to give something back.
"Local research has helped me have a good quality of life that enables me to run my business and lead a normal life," Eleanor says. "I wanted others to benefit like I have."
As March is dedicated to hosting International Myeloma Month, Eleanor shares her story to again support the good work which is going into research.
And local charity Leukaemia and Lymphoma NI has just launched an appeal called MyMATTERS which aims to raise £100,000 for a two-year study into myeloma at Queen's University Belfast.
Myeloma is a blood cancer affecting around 5,700 people each year in the UK.
It is a cancer that affects plasma cells, a type of blood cell found in bone marrow.
Sadly, it is currently incurable with less than 50% of patients surviving for more than five years.
Eleanor first had symptoms in 2016 but not for one moment did she suspect it could be anything serious.
It wasn't until March 2017 that she was given the shock diagnosis that she had cancer.
"I was losing weight but I had a fantastic appetite and was eating for Britain," she says. "I also started to feel very tired which I put down to getting older and working too hard.
"Then I took an itch all over my body which was really bad and I was going to the chemist to buy different antihistamines but nothing seemed to be working.
"My GP referred me to both a haematologist and dermatologist and even then I didn't think for one moment it could be cancer."
When she attended the blood disorders service at Laurel House chemotherapy unit at Antrim Area Hospital she still didn't suspect the worst.
I am a positive person and I have been positive from the beginning. The treatment was not easy but I got through it because there was light at the end of the tunnel
And even when she was called back for a bone marrow biopsy, she says she was still hoping for the best - so she wasn't prepared for the news that she had an incurable cancer.
"Even though Laurel House deals with blood cancers it still didn't register with me," she admits. "I knew when I had to get the biopsy something wasn't right but I was still oblivious.
"When I was told, thankfully Sam was with me. It was a shock. It is something everybody fears and you don't think it will happen to you.
"I was told it wasn't curable but it was treatable and I think as long as you know there is some hope and treatment out there, it is better than being told you have just a few months to live.
"I am a positive person and I have been positive from the beginning. The treatment was not easy but I got through it because there was light at the end of the tunnel.
"I have a large family and it was tough telling them but they've been so supportive."
Eleanor was diagnosed in March 2017. Figures from the Northern Ireland Cancer Registry show that on average 69 women per year were diagnosed with the disease from 2013-2017.
The businesswoman had a holiday in Portugal booked for the following week which her consultant urged her to take, and she started chemotherapy as soon as she returned home which continued until October.
"We were going to cancel our trip to Portugal but the consultant told us to go and looking back now it was a good way for me to get my head round it," she says.
In April 2018, Eleanor had to undergo stem cell treatment in Belfast City Hospital which required her to be in isolation for 36 days.
She says: "That was tough but Sam and my family were able to come and visit with special suits and gloves on."
Since leaving hospital in May 2018, she hasn't needed any further treatment but has to have her bloods monitored every three months and is grateful that until now there has been no cause for concern.
"I feel great and I go about normal life," she smiles. "I thank God for every day and just take one day at a time and hope it doesn't rear its ugly head again."
She also wanted to support research into finding kinder, more effective and long-lasting treatments for patients in Northern Ireland.
It was during one of her worst days in Belfast City Hospital that her husband Sam had the idea for a fundraiser.
From the cleaners and kitchen staff right up to the consultants in both Belfast City Hospital and Laurel House, I couldn't thank them enough for how wonderful the care was
Drawing on her contacts from 40 years in antiques and Sam's business in waste management, the couple were astonished by the support they received.
Even today Eleanor is touched by the many that rallied round them. "Sam said to me during a particularly tough day in hospital, 'if you get through this we will do something to give something back to those who have been so helpful'," she recalls.
"From the cleaners and kitchen staff right up to the consultants in both Belfast City Hospital and Laurel House, I couldn't thank them enough for how wonderful the care was."
Eleanor and Sam decided to organise The Red Cells Ball. They were overwhelmed with the generous local support they received from friends and local businesses that culminated in a very entertaining evening at the Tullyglass Hotel in May, raising over £100,000.
The money was split between Leukaemia and Lymphoma NI and Belfast City Hospital Cancer Centre.
"We wanted the money to stay in Northern Ireland and there was only one charity here carrying out research in blood cancers and that was Leukaemia and Lymphoma NI," she explains.
"Our friends Brigid and John Andrews were a great support in helping to organise the ball as well as the staff of Kennedy Wolfenden who worked tirelessly to ensure its success.
"We also gave money to the City Hospital which will go towards research for Level 10 where I was treated.
"We were just amazed that 485 people attended and we raised £100,452."
Now Sam and Eleanor are planning for an even bigger and better gala in 2021 and hope to raise even more funds to benefit research into myeloma.
"We are hoping to hold another fundraising ball but think it is a bit much to ask everyone to support it again this year so we are planning it for the last Friday in May 2021," she says.
"I think I am right in saying that blood cancer research does not get any government funding and from a selfish point of view I want to find a cure.
"I had never heard of myeloma before and yet around 5,000 people are diagnosed with it every year in the UK. They don't know what causes it and it is just bad luck that I got it.
"It has made me prioritise things and I enjoy my work but it has made me realise that while money is important it is not the be all and end all."