Daughter collects  26,000-strong petition for ovarian cancer tests after mother died three days after diagnosis

 

 

Elizabeth Doherty

A WOMAN has launched a campaign to roll out blood testing in a move she believes will help fight ovarian cancer after it claimed her mother.

Mother-of-three Barbara Smyth, 48, from Longford, lost her mother within just three days after diagnosis in September 2013.

Christina was 73, and lived in an active life in Portmarnock, Co Dublin.  She walked regularly and went to the gym.  She enjoyed a healthy social life.  

But four months before her death, Christina started complaining that she could not eat, she felt sick and her stomach was bloated.

“It was a shock how quickly she passed away,” Barbara said.

“Mum’s doctor gave her an antibiotic but a week after she felt worse.  She went back four times and requested a letter to see her consultant.  It felt more serious than flu.

“The doctor prescribed medication again.  She went to a consultant in Dublin a week later.

“She was examined with regards to the bloating and other symptoms.  These are classic ovarian cancer symptoms.  Two days later they booked her in for a biopsy.

“She was very ill, dehydrated.  Mum collapsed and ended up in A&E at  Beaumont Hospital in Dublin.  

“Two days later, she was diagnosed with advanced ovarian cancer.  She died on the Thursday.  It was very quick.”

The day she was diagnosed, Christina “looked six months pregnant,” Barbara said.  “Her stomach was so bloated and it had been like that for two months beforehand.

I remember when mum got the diagnosis, we kept looking at each other.  We were almost lost.  We didn’t know what to do.  It was surreal.  What do you do next?  All my mother wanted to do was get home.

“The doctor said she would expect to start treatment a week later.  Only a few weeks earlier, mum had bought my daughter Heather’s communion shoes.  She was so excited, so looking forward to seeing Heather’s communion day.  She kept saying:  “I just want to get home, I just want to get home.”

Heather’s communion was the in the May after mum died.  She didn’t get home.  But Heather wore the shoes her grandmother had bought her that day.

“Seeing Heather make her communion, was something small, but she had bought those shoes for her granddaughter and she looked forward to seeing this event in Heather’s life eight months later.”

By the time the communion day came round, Barbara realised she had not stopped to grieve.  She had blocked the pain out in a bid not to face it but on that day, the realisation Christina was not there, brought all the pain back.

“Mum was with us all that day.  Myself and my dad were roaring in the aisle.  Heather walked up to us and said ‘What are you crying for?’  My daughter was only eight.  She was wearing mum’s shoes.”

 

Barbara, who lost her mother so rapidly, remains devastated by the sudden loss of a healthy woman.

But she turned her grief into positive action, setting up a Change.org petition, calling for the CA 125 blood test accompanied by an ultrasound to be introduced as an early screening method to avoid late diagnosis and potential fatalities.

More than 26,000 people have signed in support, many pouring out their own stories of loss.

Cancer of the ovary affects over 315 women in Ireland each year. It is the fifth most common cancer among women after breast cancer, bowel cancer, lung cancer and cancer of the uterus (womb).

Ovarian cancer is most common in women who are over the age of 55, but it can affect women of any age.  A CA 125 blood test measures the amount of protein in the cancer antigen 125.

In some cases it can be used to look for early signs of ovarian cancer but the tests are not 100 percent accurate and that is why Barbara says they should be complemented by an ultrasound to protect women.

Despite a number of women in her family having died from cancer-related illnesses, Barbara said no arrangements had been made officially to test her or her sister.

“I would have thought being high risk, due to our familial background, there should have been a procedure put in place, a screening programme, but no-one discussed it with us.

“It felt like we were being told:  Your mother died, you’re on your own.’

“I came home and started Googling and discovered the blood test, CA 125.”

Barbara went to her own GP six months later and asked for the blood test to be done.

“The nurse said there was no problem.”

She got the results two weeks later.  Her test was “fine and it only cost €25.”

“I spoke to other people then and realised a lot had never heard of it.

I found out that 315 women die every year in Ireland from ovarian cancer and 90 per cent present at stage 3 and 4, where prognosis is heartbreaking – there is no cure at that stage, it has gone too far.

“Even if you get treatment to prolong life, you have to go through the pain of chemotherapy, so I set up this online petition because I absolutely felt the HSE should have a screening programme to include CA 125 because it is so inexpensive and so valuable.”

Christina had remained brave right until the end of her life.

“It was mum’s way of dealing with it.  She was reassuring us. ‘I’m going to be fine. I’m going to fight this, Barbara.’

“She was saying that so we didn’t worry but the day before she died, the fight was nearly gone.  You could just see it.  She was tired putting on this facade, it had really worn her out.

“My dad rang me to tell me mum had died.  I wasn’t surprised.  He just said ‘Barbara it is not good.’

“A little bit of me could see her going downhill in 24 hours. The bloating was compressing all her organs.  She was finding it difficult to breathe, let alone talk, but we all got to see her a few days before she went at least.”

A few days before Christina died, Barbara spent the day with her, sitting together and talking about the family.

“She wanted to know about the kids.  She was a dressmaker and she had bought my oldest daughter a sewing machine.  I was showing her pictures of a dress she was making.  It was chit chat, and it was nice to talk to her.”

“I knew she was sick but I didn’t want to upset her by bringing up the reality of her sickness.  The doctors had told her it was advanced and they were going to discuss treatment with her but it never got to that stage.”

Christina’s own mother had also died of a cancer-related illness and Barbara’s aunt also died after suffering cancer.

Barbara, who is running for election in Longford currently as an independent candidate, after leaving Sinn Fein, had almost forgotten she had set the petition up when a friend contacted her to say ‘Congratulations, you have got 10,000 signatures, Barbara.’

She had ignited something in people – those who had suffered the loss of losing a loved one to ovarian cancer and she was starting to feel this was a campaign she had to now push further.

People had opened their hearts to her, writing touching notes of loss as they signed the petition, bringing it up to more than 26,000 today.

She suddenly felt a moral duty that she was no longer just addressing her own grief, but that of those who had supported her petition – and she wanted to stop any more families suffering.

“I had a look through the comments and saw why so many people were signing.  They had stories so similar to my own mother’s experience.  These were real stories of women dying ten days and three weeks after prognosis.

These people were signing because their friends, sisters, mothers, died.  It was shocking the amount of people affected and I felt this cancer was just left there, for women to detect for themselves.

Barbara made the decision that after she reached 15,000 signatures, she would write to Health Minister Leo Varadkar and the National Cancer Control Programme – a HSE initiative working on cancer prevention, diagnosis and treatment.  The group’s focus is aimed at one day curing cancer, along with similar bodies across the globe.  It uses research to tailor strategies in fighting cancer.

“We got 15,000 signatures so I wrote to Doctor Jerome Coffey, the director of the NCCP.  I included a link to the online petition, explaining why all these people wanted the blood test and ultrasound to be available.

“I wanted him to see people’s heartbreaking stories.”

Just three days later Dr Coffey’s assistant wrote back to Barbara, asking for discussions.  They talked on the phone the next day, with Dr Coffey giving Barbara the news she had never expected.

“The NCCP decided to run a pilot programme. They were going to run it for six months, so those presenting with ovarian cancer symptoms would have blood tests and if their levels were high they would be put forward for ultrasound.

“The ultrasound is more definitive, as CA 125 can give false positives and negatives.  You can’t rely on it 100 per cent, so the ultrasound is there to confirm or say no.”  

The pilot is expected to be completed in the next few month.

A similar study is being carried out at University College London UCL) – which has its own Cancer Institute with more than 300 scientists all trying to discover treatments, and a cure for cancer.

While the Dublin project is looking at women who present to their GP with symptoms, the London pilot is looking at “well women,” who have no

symptoms, but who are offered CA 125 to see if their levels are high.

The women are then sent for ultrasounds, and it is expected the research will pick up women who have the illness in the early stages, before the desperate situation that stage 3 or 4 presents.

This research is due to be complete by the December 17 and Barbara has taken such an active part in the campaign, she is expecting a call as soon as the results are in.

I know that with over 26,000 signatures, everyone wants a fighting chance to beat this cancer because when it’s too late, it affects everyone; men, women; uncles, aunts; mothers, fathers; children.  

“When women die this way they leave so many people behind.  People left with so much pain.  I’m determined to force this and keep going.  I believe the blood test combined with the ultrasound, will catch the cancer early and save lives, rather than women presenting when it is just too late.

“When my mother was in hospital for the few days before she died, beside her was a friend from Portmarnock, who lived up the road.  She had the same cancer.  She survived to get chemotherapy but she died nine months after diagnosis.  She presented at stage 3 or 4.

It’s devastating. I can’t understand why if, for years they knew about this blood test and the ultrasound, that nothing was done. Women were just allowed to present at such a late stage.

“With the amount of people supporting me, I want to see this testing system put on a screening programme.”

In January, Barbara is going to arrange for a group of women to hand in the petition to Leo Varadkar.  The purpose is simple, she said.  “It’s to highlight this issue, that women deserve a fighting chance against ovarian cancer.”

“I have three daughters and I am high risk,” Barbara said.  “If my daughters are to be high risk, something has to be done to help them, to help all women.”

Two years on and Barbara is still grief-stricken at the loss of her mother.  She cries openly when talking about her death.

“My mother was 73.  She went to the gym three times a week, walked three to four miles a day.  She was really a healthy woman.  Within the space of three months her life was over.

“If she had the blood test from the age of 55 or 60, the cancer would have been detected and seen earlier.  She was a lovely, gorgeous looking woman.  She was my mum.”

Barbara told how her mother didn’t look her age.  She was voted person of the year at the gym.  She went shopping with her sister every Friday but she would “maybe bring things back on the Tuesday.”

“She was a woman who loved her style and fashion and she had so much more to do.  It was very difficult for my dad.  He felt he hadn’t done enough for her in the couple of weeks beforehand.

“Dad didn’t realise the enormity of what was going on in her body.  He felt he should maybe have pushed the doctor on mother’s behalf.  It took him a while to get over it.”

On the anniversary of Christina’s death, on September 19, each year, Barbara’s father, John Lonergan, 78, holds a charity night in the Portmarnock home he shared with Christina, known as ‘Ina’ to her friends.

The money is dedicated to the local Lions Club, a charity helping those in need.

“Dad does that every year.  It is a way for him to celebrate mum’s life and to give back.  It’s been very successful both years,” Barbara said.

It is clearly painful for Barbara to talk about how her mother died and it seems that because her decline was so rapid, that has left a fear within her as a mother and wife, who wants to spare others this pain.

My mother would be proud of me doing this.  I know she would.  It is to help others.  To lose someone so quickly is just so horrifying and that’s the thing about ovarian cancer, you lose someone so quickly.

“I have lots of support on the petition side, so the campaign is doing great.  This isn’t work for me.  I am absolutely dedicated to do this, to bring about change, even if I have to travel the length and breadth of the country.

“My sister is 100 per cent with me and she will be with me when I present the petition to Leo Varadkar in the Dail.  We will be thinking of mum that day.”

To sign the petition to see CA 125 blood tests combined with ultrasounds rolled out across Ireland for women, back Barbara’s campaign here https://www.change.org/p/petition-for-the-hse-to-include-ovarian-cancer-blood-test-ca125-in-a-free-cancer-screening-program