Vicky Phelan: There are always new treatments — hopefully someday there will be a cure for me

As cervical cancer campaigner Vicky Phelan launches her memoir, COLETTE SHERIDAN catches up with her, ahead of a visit to Cork
Vicky Phelan: There are always new treatments — hopefully someday there will be a cure for me

UPCOMING EVENT: Vicky Phelan has launched her new memoir, Vickly Phelan Overcoming.

VICKY Phelan reckons that if she gets another three years, she’ll be doing well.

The Limerick-based mother-of-two and wife of carpenter Jim, who unearthed the medical scandal of our times involving the cervical cancer debacle and was awarded €2.5million in an action against the HSE, went public last year having refused to sign a non-disclosure agreement.

Now, Vicky’s book, Overcoming: A Memoir has been published.

Most of the time, she is too busy to wallow in misery. She says she tries not to think about the reality of having a terminal illness.

“But some days, it takes over. Most of the time though, you just have to get on with it. I don’t have a choice.

“The thing is, there are always new treatments coming on board. Hopefully, something will come along and cure me.”

Vicky Phelan was awarded €2.5 million against a US testing lab over the alleged misreading of her smear. Picture: Sam Boal/
Vicky Phelan was awarded €2.5 million against a US testing lab over the alleged misreading of her smear. Picture: Sam Boal/

Being in the public eye “was very difficult” at the beginning, she says, particularly for the kids. Vicky’s children are Amelia, 14 and Daragh, eight.

When she delivered an emotionally charged statement from the steps of the Four Courts in April, 2018, she had no idea that the story “was going to be as big as it is”.

She said: “I thought it would be like a lot of those cases in the court which you read about in the newspapers the next day and then that’s it.

“If I had known it was going to be as big as it turned out, would I have going public? I don’t know if I’d have gotten into it as heavy as I have.”

Some 221 known sufferers, including Vicky, were not told of a clinical audit that had revised their earlier negative smear tests. Their cancers could possibly have been prevented. At least 21 of these women have died.

Vicky, a powerful advocate for standards and accountability in the Irish health service, says she found last year particularly hard as her children were exposed to their mother’s dire situation. She said the media “capitalised on the fact that I was terminally ill with headlines such as ‘Dying Mother of Two.’ Even though my children knew I was sick and that my cancer was back, I hadn’t told them it was terminal because I wasn’t giving up.

“I wasn’t going to tell them until I got to a point where I had to. The media coverage forced me to have that conversation and that was the hardest thing for me.”

After the end of the court case on a Thursday, on the following Monday at school, Vicky’s children were asked if their mother was dying. Amelia, who was born with congenital toxoplasmosis, understands far more than most 14 year olds what medical conditions are like, her mother said.

Vicky Phelan has launched her memoir, Overcoming. Picture: Cathal Noonan
Vicky Phelan has launched her memoir, Overcoming. Picture: Cathal Noonan

“We knew before Amelia was born that there was going to be something wrong with her. The worst case scenario was that she could be blind and brain damaged. We’re very lucky that she is not. She does have a visual impairment with less than 10% vision in her bad eye and almost 70% in her good eye.”

There are complications associated with Amelia’s condition. With puberty, her hormones “kicked it off again. She has had seizures. It has just been one thing after another in the last couple of years.”

Vicky says her own health is good at the moment.

“I have another scan in a week or two so fingers crossed that it will be OK. I go by how I’m feeling. I don’t think anything has grown. I haven’t had any shrinkage either. But as long as it stays stable.

“I’m on Pembro, the immunotherapy drug I fought to get on. After two years, you’re taken off the drug. I’ll be two years on it by next April, 2020. The hope is that my immune system will have learned to mimic the drug and fight the cancer. I’m realistic in that I know this drug is never going to cure me but I’m hoping it will keep me around long enough for something else to come along.”

As if Vicky hasn’t enough to contend with, she also suffers from depression. But she is happy to report that her cancer didn’t result in an episode.

She had been on anti-depressants for two years. In the lead up to the court case, she had to undergo an assessment to prepare for it.

“I had to see a psychiatrist. I had come off the anti depressants. I asked the psychiatrist if he thought I was mad and whether I should go back on them.”

Vicky often wondered if the cancer caused her depression.

“When you think about where I have my cancer, it’s all hormonal in the reproductive system. The worst part of it was after Amelia was born. That was pure postnatal depression. Then the cancer was growing in my body. And as soon as I had treatment for it, the depression kind of left. It’s strange. I’m not on anti-depressants at the moment and I feel great.”

Vicky Phelan says helping others made her feel better about herself.Photo: Cathal Noonan
Vicky Phelan says helping others made her feel better about herself.Photo: Cathal Noonan

Feelings of anger are inevitable with a cancer diagnosis like Vicky’s.

“But the problem with anger is that it turns into depression. I know that if I allow myself to get angry, it actually goes inwards. It turns in on itself and I start feeling unwell again. I was very aware that this time, I wasn’t going to allow that to happen again.”

Vicky says that once the court case was over and the story had broken, women started contacting her.

“I was helping others and that made me feel better about myself. The whole thing helped me to stay focused and to stop the anger from getting out of control. I was channelling the anger in a good way.”

Aged 44, Vicky retired from her job in April. She was on sick leave from her post as the manager of a literacy development centre in Waterford.

“All the work I’m doing now is keeping me busy. Leaving my job was a weight off my shoulders. I pace myself now. I’m in Dublin every three weeks for treatment. So if I have meetings or media appearances in Dublin, I try to coincide them with my treatment dates. When I’m at home and the kids are at school, I read up.”

Vicky is in the process of funding a position that has just been advertised in the Mater Hospital in Dublin.

“It’s to help people who are terminally ill. Last year, I was told that nothing could be offered to me apart from palliative chemotherapy. I just wasn’t willing to accept that. I went off and researched alternative treatments and clinical trials. That’s how I got myself on Pembro. But it shouldn’t be the case that the patient has to do all that. There should be someone people can go to, to get help to research clinical trials and look at other drugs. I don’t think it’s right to be left on your own to do that. An oncologist is working with me on setting up this position. I’m lucky that I was able to go off and research my situation. I have good antennae. I knew there was something amiss.”

CAMPAIGNERS: Vicky Phelan,Stephen Teap, Lorraine Walsh
CAMPAIGNERS: Vicky Phelan,Stephen Teap, Lorraine Walsh

It’s not surprising to hear that Vicky doesn’t take ‘no’ for an answer.

“I’ve always been a stubborn mule. And I’m a typical Scorpio. If you get my back up, watch out. What I hate is to see people not telling the truth and hiding something.”

Despite Vicky’s experience with the cervical smear test results, she encourages women to go for regular smear tests and welcomes the HPV vaccine being extended to boys.

“The problem with not going for smear tests is that cervical cancer is not curable if you don’t get it at an early stage. I would say to continue going for smears. I know we can’t 100% trust the results coming back at the moment but the programme is being rebuilt so we can get to a point where we can trust it.”

And that’s down to Vicky Phelan, a strong and admirable woman — who refuses to be fobbed off.

To mark the launch of Vicky’s memoir, she will discuss it with TV presenter Elaine Crowley on September 22 in the Radisson Blu Hotel, Little Island. Tickets are €20 and include a pre-signed copy of the book and are available from Easons.

Overcoming: A Memoir by Vicky Phelan is published by Hachette Ireland at €14.99.

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