Belfast Telegraph

Friday 26 December 2014

Maureen's daughter Julie was just 27 when she died from the so-called silent killer ovarian cancer ...

Which is why her mum will never stop talking about it - A grieving mum, a survivor and a terminally ill woman tell Kerry McKittrick how they’re raising awareness

Brave legacy: Maureen Clarke set up the Angels of Hope ovarian cancer drop-in centre after losing daughter Julie (inset) to the disease
Brave legacy: Maureen Clarke set up the Angels of Hope ovarian cancer drop-in centre after losing daughter Julie (inset) to the disease

Only 3% of women in the UK are confident they can spot the symptoms of ovarian cancer, an illness that claims more than 7,000 lives a year.

Yet, as with many other cancers, the stage at which the disease is detected is a major factor for survival rates.

During March, which is ovarian cancer month, a number of campaigns have been trying to increase awareness of the symptoms of the illness. And one woman who has been playing a big role is Belfast Telegraph Woman Of The Year, Una Crudden, a tireless campaigner for awareness since her own terminal diagnosis five years ago. Despite her predicament, Una is in upbeat mood. “I've just had a surprise party for my 60th birthday,” she says. “I'm just over the moon to have made it this far.”

Una has been the chief advocate for a solo campaign — one dedicated just to ovarian cancer — which would make every woman aware of the disease’s symptoms and hopefully lead to earlier diagnoses.

“The Woman Of The Year Award came at a great time, because it was just before I took the Teal Takeover campaign up to Stormont and we got a lot of publicity,” she says.

Disappointingly, Health Minister Edwin Poots said that he could not justify a solo campaign, though he did signal a commitment to raising awareness for less well-known cancers, such as ovarian.

Una remains undeterred: “Next month I'm meeting with the Public Health Agency. They're still pushing for a general campaign about cancer — they argue that a TV and radio campaign costs £300,000. But when you consider the cost of the chemotherapy I've had so far is £100,000, for the cost of treating three women like me you could save the lives of countless others by raising awareness in a solo campaign.”

The grandmother now spends much of her time giving talks to schools and women's groups and is a prolific Tweeter.

“One thing that has happened is that GPs here will now follow an ovarian cancer pathway — when a woman presents with symptoms that could be ovarian cancer they must follow a certain path or explain why,” says Una.

“I don't benefit from this, as it's too late for me. I'm currently having a three-month break from treatment, as my tumours have shrunk. I've been told it's the best news they could hope to give me.”

Evidently channelling her energies into the campaign has been a morale-booster for Una. "I know I've made an impact -- I've reached so many people and if I can do that as just one person what would a solo ovarian cancer campaign from the Public Health Agency do?" she says.

Here we talk to two other women who have also been at the forefront of raising awareness of ovarian cancer across Northern Ireland: Maureen Clarke set up the Angels of Hope charity after losing her daughter Julie (27) to the disease, and Portadown mum-of-three Pearl Jones, who has survived the illness, is among those who have benefited from the charity.

MAUREEN Clarke (59) is the chairperson of Angels of Hope, NI's only ovarian cancer charity, which she set up following the death of her daughter Julie at 27 from the disease. She has one son, Paul (33). Maureen lives in Portadown and in 2013 was awarded an MBE for her services to those with ovarian cancer and their families. She says:

My daughter Julie passed away from this horrific disease in 2002. Even though we both had medical backgrounds -- Julie trained as a psychiatric nurse and I was a nursing auxiliary for years -- neither of us recognised the symptoms.

In February 2002 Julie developed persistent pelvic and abdominal pain with constant bloating over one weekend. She also had trouble eating and felt full very quickly.

Julie thought she was just putting on weight and joined the gym and the weight started to fall off her. One morning she left to for work and was back in 20 minutes in agonising pain. We went to the locum doctor that evening. He felt the mass in her abdomen and we were referred to A&E for a scan.

At A&E we were told the problem was in her bowel but I knew it wasn't. She had been in bed all weekend with chronic diarrhoea so there was nothing left in her bowel. Julie was sent up to the gynae ward for a scan and a consultant was called in from home -- she was rushed into surgery at 1am because the mass they found with the scan was so big.

Julie's words to me were, 'Oh mummy, I'm never going to have a baby' as they had to remove her ovaries. The mass was covering both of them.

She was discharged in three days with no check-up scheduled as they didn't believe the mass was cancerous. Two weeks later the phone rang and we were asked to attend the hospital straight away. They told us that the biopsy had shown the mass was cancerous and we were referred to Belfast City Hospital.

We were both very positive at that stage. We met the gynaecological oncologist Stephen Dodds, who was wonderful. Julie was admitted almost right away to have everything removed from her pelvis. She was then sent for six cycles of chemo.

Julie remained positive the whole way through her treatment, she fundraised for ovarian cancer and booked holidays. She was very ill during the chemo though. Finally, I brought her into the hospital at 4am on August 16 because the pain was so intense. She never came home.

Julie died six weeks later on October 1. She had been moved to the Marie Curie Hospice because she was in so much pain. The care that both Julie and I got at the Belfast City Hospital you couldn't have paid for. They looked after both her and me. It had been obvious to me halfway through her cycle that Julie wasn't going to make it. The pain she went through was horrific, no matter what they gave her.

I was devastated when Julie died -- I lost my only daughter at the age of 27 -- but it was clear to me what I needed to do next.

The whole way through Julie and I were quite stunned at how little information and support there was available to ovarian cancer patients and we started raising money to create awareness of it.

I don't know if I could have coped with it the way Julie did. She didn't stop researching while she was ill and the one event she organised to raise funds -- a quiz night -- I had to take her home from as she couldn't stand with the pain.

After Julie passed away my son Paul and I set about creating an information leaflet about ovarian cancer. I researched it, Paul designed it and we had it approved by Stephen Dodds, Julie's consultant from the City Hospital.

The first thing we did was to set off from Belfast City Hall to walk to Dublin the year after Julie died and every woman we met along the way we gave the leaflet to. The response we had was so great that we became a fully-fledged charity -- Angels Of Hope. To date, we've produced more than 300,000 leaflets and we're the only dedicated ovarian cancer charity in Northern Ireland.

Now we have a drop-in centre for women who have been diagnosed with ovarian cancer close to the City Hospital. You can come to the centre or phone us and we will give you financial and emotional advice.

We provide holistic therapies and we started an outreach programme for terminally ill patients. We also go out to women's groups to provide awareness and hold GP awareness days to give doctors the tools to diagnose ovarian cancer.

We're a small group and we can't give out medical advice, just an understanding of what people who have been diagnosed are going through. Anyone who feels the need to talk can contact us.

PEARL Jones (59) is a retired care worker and lives in Portadown. She has three grown-up children, Kelly, Stephen and Nicky. She says:

When I was 48 I started to feel tired and my stomach was swollen. Basically, I just didn't feel well, though I put it down to the change of life.

I went to my GP, who suspected straight away what was wrong with me -- I was very fortunate. I was sent for blood tests and when I went back for the results two weeks later, she immediately made an appointment with a gynaecologist.

Next, I attended a check-up as an out-patient and they immediately sent me for a CT scan the next day. The doctors told me I needed surgery a couple of days later but at that point, no one was telling me what was wrong. No one mentioned cancer, but I did have my suspicions.

I was told that I had cysts on both ovaries, but I went for a complete pelvis clear -- a total hysterectomy. Five days later I was told that I had cancer in both ovaries. At that stage I felt relief more than anything else -- I was just glad to have found out what was wrong.

I was sent for two kinds of chemotherapy, which wasn't easy. My hair fell out three weeks after my first treatment; I got pains in my legs and although I was never sick, I felt ill all the time.

I was scanned regularly and had blood tests every three months for a couple of years and then that dropped down to twice a year. Now, my GP just keeps an eye on me.

I now know what the signs of ovarian cancer are -- even though a cousin of mine had passed away from it the year before I fell ill, I didn't know what the signs were then.

I also now know that I have the BRCA 2 gene, which means that I'm more at risk from breast and ovarian cancer. My daughters have it too, so they go for an MRI scan once a year and they'll have an elective double mastecomy when they get older.

Four years ago I took the big step of having a double mastectomy and reconstruction, too. I'd had such adverse effects from the chemo for the ovarian cancer that I couldn't face the prospect of being diagnosed with breast cancer and having to go through treatment again.

I got to know Maureen Clarke, who set up Angels of Hope, Northern Ireland's only ovarian cancer charity, not very long after her daughter died -- I was introduced to her by my sister.

When I was going through my treatment Maureen said that I could phone her at any time. She was great for talking about the side-effects of the chemotherapy. Because she had gone through everything with Julie she knew what was normal and what wasn't.

After Maureen set up the charity, I would go along to different events such as coffee mornings and balloon launches to support other people. I even started going to the drop-in centre the charity set up near Belfast City Hospital after my check-ups at the hospital. It's good to give something back."

HOW TO SPOT THE SYMPTOMS

* Ovarian cancer is most commonly misdiagnosed as irritable bowel syndrome. Key symptoms are bloating and pelvic or abdominal pain.

* If these symptoms are constant or frequent then you should visit your doctor.

* Also be aware of back pain, fatigue, difficulty eating or feel full very fast.

* Although ovarian cancer isn't common in women under 40 it isn't unheard of. If you are unsure about your symptoms try recording them in a diary so they can be monitored over a long period.

WOMAN WHO BATTLED THE DISEASE

* Oscar-winner Kathy Bates, was diagnosed with ovarian cancer in 2004, but went on to make a full recovery.

* Driving Miss Daisy actress, Jessica Tandy, lost her battle against ovarian cancer when she passed away in 1994.

* Angelina Jolie, hit the headlines last year when she elected to have a double mastectomy -- her mother Marcheline had died from ovarian cancer and the actress discovered she was at high risk from both ovarian and breast cancer.

* Bond star Pierce Brosnan tragically lost both his first wife, Cassandra Harris, and his adopted daughter Charlotte to ovarian cancer. Both women were in their early 40s when they die.

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