Breaking the silence of ovarian cancer

Published on Sunday 1 May 2011 19:55

The symptoms of ovarian cancer are so difficult to spot that it's called the silent killer. But Fiona Downie, who saw her mother die from the disease, has become one of the first women in Scotland to take a new blood test which could lead to early diagnosis and help save many lives

AS FIONA Downie sets to work sewing a beautiful wedding gown for a friend, she's proud that she's inherited her design skills from her mum. Fiona loves looking at a photo in her dining room of her mum Wendy looking radiant on her own wedding day in 1979, wearing a pretty, high-necked column dress she designed and made herself. The dress still hangs in her mum's wardrobe, at the family home in Glasgow she shared with husband Craig, now 71, a retired businessman.

"I looked at her dress recently, and it's made so perfectly," says Fiona, an Edinburgh advertising account executive. "I did a degree in fashion design at Edinburgh College of Art but still will never be as good or as creative as her.

"Well… hopefully one day. But it feels nice to know I got my skills from her and we have those things in common. She always used to say she wasn't really good at anything, but she was one of those annoying people who are brilliant at everything."

Her mum passed on her design flair and also her pretty brown eyes to her youngest daughter. But sadly she won't ever get to see Fiona walk down the aisle, or become a mum herself, as Wendy died of ovarian cancer in November, aged just 61.

"She never talked about not being around in the future, but one time when she was ill we saw her go quiet and sad, when my sisters and me were in her room gabbing about getting married or something like that. It was strange to suddenly realise she was thinking she wouldn't be around to see that. We never thought like that, we always kept hope and positivity," says Fiona.

The risk factors for ovarian cancer are not all hereditary, but a woman whose mother has had the disease has a one in 20 chance of developing it themselves, far higher than normal, and having a specific genetic mutations could increase the risk further.

Fiona, 27, was one of the first in Scotland to get the chance to take a new blood test, OvPlex, to more accurately detect early symptoms of ovarian cancer. When Fiona had it done in October last year, she already knew her mum was dying of the disease and nothing could be done to save her.

Fiona didn't think she had the same cancer and, thankfully, she was proved right with a negative result. She is now keen to promote the availability of the test for those with a family history or potential early symptoms of the disease.

"The test is incredibly important as it may prevent others going through what my mum suffered," she says. "Cancer is such a horrible thing for everyone involved to go through. Tests like the cervical (smear] and now this ovarian test are such positive steps forward.

"I was relieved and it definitely eased my worries when I got my result, as ovarian cancer is practically symptomless. There wasn't a family history we knew of before my mum, so she wouldn't have thought to get a test.

"But I'm pleased there's recently been a government health campaign about the symptoms of ovarian cancer and what to look out for. I'm glad it's happening of course but that has also made me sad, and I wish it had been done a few years ago. When I got my result my mum was too ill really to take in the news. But of course she worried about all of our health, like any mother would. She definitely worried, being a mum of three girls."

The loss just five months ago is still painfully raw for Fiona, but the memories of her mum are still, thankfully, fresh. Every morning and night Fiona still uses a moisturiser her mum gave her and is sad at the thought of it running out and severing yet another tie.

When she visits her dad in Glasgow there are memories of her mum all around. "We went through a lot of the things in the house that were important to her, things of my grandparents and from her childhood, wedding presents, jewellery. She told us the stories behind the objects so that now when I visit I see her belongings and I'm reminded of the stories from her life. Even though it was difficult at the time, we were allowed a time that so many people don't get, and there are positives and peace you get from that."

Now when Fiona is cooking a meal, she'll often almost reach for the phone, ready to ask her mum's advice – before checking herself and reluctantly reaching for a cookery book instead.

"She was brilliant at cooking and baking, and made us amazing cakes for all our birthdays; big butterflies, a sponge basket filled with sweets, clocks that had the time as our age – when I was four, it said '4 o'clock'. My favourite was Humpty Dumpty, an Easter egg decorated with icing and marzipan, sat on a wall of multicoloured sponge bricks.

"I still give her the odd bit of chat. I'll say 'Sorry, Mum' if I get upset – because I know she wouldn't want me to be sad. And I think of her when I pass one of her favourite shops."

Wendy was diagnosed with cancer in November 2007 and Fiona and her two sisters, Clare, 30, and Lucy, 28, discovered two months later their beloved mum was dying. She was still relatively young and very active – but by April 2010 she was almost bedridden and forced to use a wheelchair, though she didn't give up fighting.

"She hid it at the beginning from me and my sisters to protect us," says Fiona. "We only found out the prognosis was terminal when my sister Clare accompanied her and my dad to the doctor, and realised the true extent of the cancer.

"We just concentrated on being there, spending as much time with her as possible, but carrying on like normal, really. You just have to.

"I knew practically nothing about ovarian cancer beforehand. Now I know it's one of the hardest kinds to detect as the symptoms are minimal, and when there are symptoms, many women put them down to natural 'female' pains. Many people only discover they have ovarian cancer when they find secondary cancer."

Looking back, Fiona remembers her mum starting to lose weight around the summer of 2007 – six months before she was diagnosed in November that year. She found a lump under her arm and went to see her GP – but by then, unknown to Wendy, the cancer had already spread to her lymph nodes.

"For a long time I really thought she would get better, through every round of chemo and when she got weaker and weaker, I thought each time she would get stronger, even if it was just a little bit," explained Fiona. "But that didn't happen and she gradually went downhill. You just don't accept it, but it's also good to have hope and be positive.

"When she was well we all had the hope she would beat it – even though maybe we knew the truth deep down that she wouldn't survive.

"My mum was very strong and always kept fighting. She was having rounds of mild chemo until her last days. She was very protective of us and never complained or moaned to us, and was very positive. She had people she would lean on, like a great circle of friends made at the Maggie's Cancer Care Centre in Glasgow. I guess it's easier to speak to people who know what you're going through.

"One thing she found very hard though was the lack of control toward the end. Her mind was healthy but her body was failing. That caused her a lot of anguish and frustration that came out to those closest to her, naturally."

But Fiona adds: "One thing her oncologist said recently is that he has seen people with the same stage cancer last just six months, whereas my mum fought on for three years. I think a large part of that was down to her having the correct treatment, fighting her illness, carrying on with living, having positivity and hope, and not letting go of life."

Fiona never used to worry about her health, but the loss of her mum has changed her outlook on life: "Losing someone makes you question your own health and mortality, of course." And she's determined to live her life to the full to make her mum proud.

"We had a very real relationship; sometimes we fought like cat and dog, as I'm like her and quite highly strung. And sometimes we had the best times, sitting eating chocolate and drinking gin and tonics by the fire, chatting. She was always so interested in everything about our lives and we could talk through anything. She was really into learning, and had such an open, intrigued mind. She was always reading, and always non-fiction books and autobiographies. Just before she was diagnosed she made trips to Australia and Japan, and travelled all over when she was young. We would love finding old pictures of her travels in her things."

Fiona has fond memories of even the very early days she spent with her mum, when her older sisters were at school, like visiting the Garden Festival in Glasgow. "I also remember having so many arguments with her back then, like sugar was a normal topping for toast and a fuchsia pink top and red trousers do go together."

And then towards the end, Wendy remained the protective mum. "On the day she died she was drifting in and out of consciousness. We were all with her crying and talking to her, and she just muttered 'crying' with a bit of a frown. We all knew she was saying 'stop crying'. She was just looking after us and being a mum till the end.

"After she died I felt quite peaceful because I'd had time to say goodbye. It was just like she drifted off to sleep."

Now Fiona's sense of loss is tangible. "We definitely skipped a stage in life. Before she was ill I was at uni, her child and looked after by her, then towards the end it was us looking after her. I do wish that we had had the time to be two adults together."