“I know I’m not going to get better... but I’m determined to enjoy every moment with my children”
Inspirational Belfast mum and businesswoman Julie Scates tells how her world was turned upside down by a cruel diagnosis in 2014, and why she's still refusing to give in to her illness
Julie doesn't look like someone who has been classified as terminally ill. It's a diagnosis she has refused to accept, and that fire within has kept her alive for two years after an Ulster Hospital surgeon closed her up and said there was no hope.
I met Julie - who has the unusual surname of Scates - just over a week after her make-over for Weekend magazine. She'd had chemotherapy the day before the shoot and had been hospitalised shortly afterwards, due to the gruelling treatment's side-effects and a virus she'd contracted on top.
An articulate mother-of-three - Courtney (23), Cameron (18) and Leah (12) - Julie co-runs a recruitment business and volunteers for Childline when she's able. She looks younger than her 41 years. Her short dark hair frames a pretty, open face and she has curves in all the right places. Even the pioneering oncologist from Manchester, who has placed Julie on a trial for a new treatment, was taken aback when he first met her.
"He took one look at me and said 'you don't look like your notes'," she recalls with a smile. "People do wonder. It's the make-up - and I had my eyebrows tattooed when my hair fell out. And when I went for the big operation in Manchester, I begged them to let me keep my headscarf on throughout. Vain - even in the operating theatre!"
From Castlereagh in Belfast, Julie given the devastating diagnosis of stage four ovarian cancer in March 2014. There is no stage five.
She'd had ongoing gynaecological problems for few years beforehand and had been referred for a hysterectomy.
"All summer the year before, in 2013, I was tired and bloated. I had abdominal pain; I was constipated," she explains. The pain got really severe that November - it went into my back and my periods went from heavy to nothing.
"My GP thought it was Irritable Bowel Syndrome [IBS] but the medication didn't help. I'd already been referred for a hysterectomy at the end of January. They discovered an ovarian cyst and lots of fluid in the pre-op assessment, but I never ever thought it would be cancer, even with the continuing pain."
While waiting for me at the Orangefield Church café on the Castlereagh Road, Julie had ordered cappuccinos for us. When I got there a few minutes late, there was a tray bake waiting for me, too. Needless to say, we clicked right away, which made her story even harder to hear, albeit inspirational.
On January 29, 2014, Julie checked in for her surgery only to discover the hospital had lost her notes.
"I was worried the surgeon wouldn't know all that had happened in the previous two weeks but I was told all would be ok. They went ahead the next day but left my ovaries, due to my age (39), they said.
"I've no idea how they missed the cancer and I probably never will. For the next few months I was in and out of hospital in pain. I was given mediation for constipation, the type they give older people or for pre-bowel surgery but at my six-week review I felt worse than I did on the day of the surgery."
The turning point for Julie came when she was referred through A&E, for pain, to the surgical unit. After a full assessment of her symptoms from the beginning and various scans, Julie was diagnosed at the end of March 2014 with advanced and aggressive primary peritoneal cancer, a form of ovarian cancer. A 14cm tumour was found in her omentum, the fatty lining of the abdomen, and another on one of her ovaries.
"The lovely nurse, Fiona, who was with me knew, I think - I could see the concern in her eyes when she was bringing me down the corridor to see the doctor. I was in total shock - I knew in my heart there was something wrong but never in my wildest dreams did I think it was cancer.
"I'd suspected a problem with my bowels because they kept telling me I was constipated. I'd even signed Una Crudden's petition for her ovarian cancer awareness campaign a couple of days before, never thinking that could be me - even though I ticked every box with my symptoms.
"Everything moved so fast. The doctor said he'd operate immediately; at least there was a plan and at last I knew what was wrong."
Over the next few days, Julie confided in close family members, including her eldest child, Courtney, her ex-husband Robert and her partner Steve Richie, an English-born golf professional and instructor, but decided to wait to tell her two younger children by Robert (with whom she's on very good terms) until after the surgery.
"When I went to see the clinical director to discuss my case, I had so many questions about how this could have been missed, but he told me I had two fights ahead: one for my life, and the other to get answers. I picked the former. By that stage the morphine had dealt with the pain and I was on a mission to get rid of this."
She went into surgery the next morning but the cancer had spread too far and to proceed. The disease was in her liver, bowels and diaphragm, and the prognosis was very poor.
"I woke up after the operation all chirpy - I was only in for two hours - and felt relaxed the whole time I was waiting on the surgeon to come and see me," she remembers.
"But when he opened the door, I could see he was on edge. He just said, 'I'm so sorry. There's nothing I can do. I tried.' I was, 'What? I have three kids - what do you mean?'
"He said it was too far gone and that if he'd continued with the surgery, he could have killed me. All he could do was offer me chemo to manage the symptoms. All I could think of in that split second was my lost hospital notes; I told him there was no way I was going to stay there and die. I was out of there!
"Steve was with me - we were devastated. I remember repeatedly saying, 'this can't be happening I have three children'. It was a mix of panic and reality hitting home that we needed to act quickly or I was going to die.
"I've always been a strong person and very determined, and dealing with this was going to take everything I had."
While Macmillan nurses were attending Julie and advising her to tell her children everything, Steve went into action mode and contacted Target Ovarian Cancer, the charity Una Crudden was working with. And so began the couple's search for a last-chance-saloon specialist.
"We look back and can have a laugh about events that week - Steve had just got a new iPhone and he was a man on a mission. Superhero! He was on it constantly, emailing specialists in Christies in Manchester and the Royal Marsden, and clinics in Germany, America and Mexico.
"I was considering Germany, as they're so advanced, but then Professor Gordon Jayson from Christies rang me that Sunday afternoon and said he thought he could help. The fact he'd phoned on a Sunday made my mind up right away and when I met him a couple of days later, I trusted him immediately.
"He's a very humble, gentle person, about 50. He cares, about the family, too. He told me that I was 30 years too young to have this and he thought it was genetic, which was another blow as it now it could affect my family. I needed a miracle but I'd found an oncologist and medical team I could trust and I put my faith in God."
With her local church and friends of all denominations praying for her, Julie began Christie's harsh Icon8 chemo trial in April 2014, with weekly infusion for nine weeks. As a result, her tumour markers dropped sufficiently for her to have surgery.
In a radical 'de-bulking' eight-hour operation, five surgeons - including liver, bowel and gynaecological specialists - used the most advanced lasers, along with every hi-tech surgical implement available, to remove Julie's ovaries and omentum, and treat all the surrounding areas affected by cancer.
"I must have been a fascinating case! But as Professor Jayson said, 'if only one person in thousands can respond to treatment, why can't it be you? Ignore the statistics and the internet.' They really went for it, because of my age.
"Anyway, I was so sore when I woke up in the High Dependency unit, with over 50 staples right up to top of my ribs. He said it was no wonder - I'd been cut, burned and stitched. One of the doctors even burnt his hand on the laser in the middle of it! The operation had removed the cancer and I started more chemo, but I had to get through reviews every six weeks, waiting for a highly likely reoccurrence.
"The chemo finished that September - the cancer is classed as terminal but it's not a word I like to use or hear, so we like to talk about it being incurable but manageable."
The light dims in Julie's eyes when she looks back on her genetic testing last June, and the rest of her coffee goes untouched. The tests confirmed the presence of the BRCA1 gene, the mutation which led actress Angelina Jolie to have a double mastectomy and hysterectomy. As the risk of breast cancer is 85%, Julie's currently on a high-priority waiting list for a mastectomy.
She is saddened that her eldest daughter Courtney, a housing management student at the University of Ulster, has tested positive for BRCA, as has her mother, her brother and two of her uncles.
"It was a very difficult period, knowing that my children now had 50/50 chance of having this and also my wider family circle," she says quietly. "I had counselling before and after the test, and there's a brilliant support group at the City Hospital. At least, through all this, Courtney knows the risks now and can take preventive action in the future. Knowledge is power."
Unfortunately, Julie's symptoms began to recur last summer. She went for a scan but put off getting the results, unless critical, until after a family holiday in South Africa. The day after she returned, it was confirmed that the cancer was back and her double mastectomy had to be postponed, leaving her at the elevated risk of breast cancer (she has high-priority screenings, as a result).
Julie then made the decision to postpone chemotherapy until September, in order to time with her family before "getting back on the merry go round again". She has just been through six months of it, travelling every four weeks and spending the following two weeks recovering, and is taking part in a new 'Ariel' trial at the Christie Clinic at the end of the month.
"It's a different drug than last time and the side-effects are much tougher to deal with. The fatigue's like never before, with terrible skin conditions but again that silver lining is I never lost my hair!" she concludes, cheerful again. "It's been a really tough six months mentally and physically but I've made the best of my good days spending quality time with my family.
"I am a happy and positive person and believe that my faith in God has helped alleviate my fears. It lets me take one day at a time and I enjoying my life, despite the daily struggles that I have to deal with.
An apprehensive waiter sidles over to tell us the café is closing in half an hour. We've been talking for hours and the place is empty. As we walk to our cars, I assure Julie that the interview will help spread much needed awareness of this cruel disease, as Una Crudden so desperately fought for.
Julie says: "The statistics for this cancer are very poor and sadly I have lost friends on this journey, including Una - I couldn't bear to go to her funeral, but she would have understood. It has been heart-breaking, not only seeing them suffer, but also watching their families. We can only hope and pray that, with awareness campaigns, more women will be diagnosed earlier, to at least give them a fighting chance."
She promises to keep in touch and drives off in her little sporty black Mini. What a trooper.
Julie can be contacted via email: email@example.com
BRCA Link NI can be contacted through facebook.com/pages/ BRCA-Link-NI/104200676330247. For information on Target Ovarian Cancer and the upcoming coffee morning, to mark what would have been campaigner Una Crudden's 62nd birthday on March 25, see justgiving.com/grainne- smyth1/?utm_id=80