Vicky Phelan - Keynote Speech at FemFest 2019

Published: Thursday, November 09, 2023

 

I was invited today by the National Women's Council to talk. Because I am somehow seen as a leader in campaigning for better outcomes for women in healthcare, particularly in the area of cervical cancer, but also in a wider sense, in how women are treated in general by medical professionals in this country.

And I suppose when I broke my story back in April last year, I did it for myself and I did it for... well at that time, I only knew that there were nine other women who needed to know the same information that I had found out. And I suppose people often ask me, well, how did you do that?

Considering at that stage I was really ill, I wasn't on any treatment, I was going downhill very fast, and the day I was actually giving evidence in court was two days after I had the first dose of the treatment I'm now on. So it was like Russian Roulette. I really played up to that point, I really thought I had a matter of weeks left. And I think the only way I can explain it is because I knew my time was limited at the time and I didn't know if this drug would work. When you're faced with that type of a prognosis, nothing else matters except for doing the right thing.

I just thought, you know what? I'm not going to be bought. I knew I had enough money that I was going to get a settlement out of it. And at that stage, it didn't really matter what they threw at me. I knew I'd have more than enough to provide for my family.

So for me, it was all about doing the right thing. For those nine women. I never imagined it would turn into 221 and that number is going to grow. That's why we call the support group 221+, because there are 1700 other cases of women who have been diagnosed with cervical cancer who were not included in the original audit.

So we're estimating that there will probably be possibly another 100 to 200 women who will be added to that group. And in the meanwhile, all of this time, we're waiting…. and a lot of this – it’s kind of deliberate strategies, I find at this stage. The Royal College of Surgeons are carrying out an independent review of these slides.

And this review was supposed to happen not this time last year, but was supposed to have completed by June. And here we are in January 2019, and this review hasn't even started, let alone finished. So that's why I went on a bit of a rant last week, to be honest, because I just thought, here we are, ten months later, and we're still nowhere near getting the answers that we need. And I'm using my position, while I have it, to fight for answers. Because I suppose there are women out there who can't do this.

And what drove me really over the edge last weekend was I was at an anniversary mass for a lady who died of cervical cancer last year. And here were her three small kids, her youngest, who was six, singing and saying prayers at this mass. This woman shouldn't have died. And on top of that, on the way home from this mass, which was difficult enough to go to, I got a call from this woman who has a case coming up starting fairly shortly.

She's younger, far younger than me. A lot of the women caught up in all of this are far younger than me. I mean, I'm old compared to a lot of you here. I'm 44. This lady was only in her mid 30s with two very small kids, and she was absolutely terrified at thought of having to go up to court and stand in court with all of these media reporters reporting on a case. She wanted to remain anonymous, and the tribunal wasn't set up. So between the two of those things last weekend, I just said enough is enough. And I stood up and started campaigning again. And that's, I suppose, what my message is, what I want to kind of say to you here today is I'm an accidental leader, if you want to call me that.

And I suppose if somebody had told me a year ago I'd be standing up here talking in front of a group of women with handwritten notes. I mean, I don't even have time to type up presentations at this stage, but it just proves it's coming from your heart. And when you feel so strongly about something, you don't actually worry about what you look like. I mean, I'm about two stone heavier than I was before I had cancer. I couldn't give a shit. You get to a point where you don't really care. At the end of the day, it's the message that counts and it's making changes. And as soon as I could see, when my story broke, that I was making changes happen, that we were going to actually affect the generation coming after me.

And I have a 13 year old daughter, and that's who I'm doing all of this for. If I die, I want to make sure that we have a health system that is something that I can trust to leave behind, that if she develops anything over the years, if I'm not here, that there's a healthcare system that I can say with hand on heart, I've helped to make it better for her and for all of the other girls.

So I was delighted to be asked to speak today, because I suppose when I'm thinking about it, I realise how important it is for young women in Ireland to hear directly from women in leadership roles. And I'm only one of many strong women who are here today and who will be talking to you later on.

 

The simple truth is, as Orla pointed out earlier on, many women don't see themselves as leaders. I certainly didn't, and I still don't. I find it really strange that people call me this. I mean, you know, I'm not. And again, that's the point. Here I am belittling myself, but I am a leader and I probably have to start accepting that. But this doesn't only hold true for the workplace, though, obviously, this is where it is most pronounced. And as we know, we have a gender pay gap of 13.9% in this country, which was highlighted most recently by the Work Equal Campaign, which Sonya Lennon started a couple of years back to help raise awareness of the gender pay gap. But putting the gender pay gap aside and work and trying to kind of get up the career ladder. Women experience inequality in many other areas, and Orla touched very heavily on domestic violence. And I've met some of the really fantastic campaigners out there, like Jessica Bose and Emma Murphy, over the last number of months, and they're fantastic women.

Again, women like me, who never would have thought that they'd be, you know, campaigning and speaking about their stories and taking this on. You know, we've had this conversation and they just feel a huge, overwhelming need to share their stories, because they're helping other people, and that's what it's about.

So women experience inequality in other areas such as politics. And Martina Fitzgerald is here today, and she highlighted that most recently in her book Madam Politician, which revealed that amongst many other unbelievable things, I read in that book, that only 10% of politicians who have been cabinet ministers in this country over the last 100 years have been women. That's 19 ministers over 100 years. I mean, that's just shocking. And after Constance Markievicz, who was Ireland's first female cabinet minister, it took another 60 years before we got our next female cabinet minister. 60 years. It's shocking. And the list goes on.

 

We have inequality in sport. I don't know how many of you are watching the premiere of Katie Taylor's documentary during the week. Where is anybody watching it? Yeah, you see, it was on a Tuesday. There is my point. This is Katie Taylor. She's a world champion kickboxer, I don't know how many times over. If that was a man, that would have been on primetime television on a Friday or a Saturday. Yet RTE premiered it on a bloody well Tuesday night at 10:00. I mean, I watched it, but I'm sure a lot more people would have watched it if it was on a primetime slot. And why wasn't it? Is Katie not good enough to be on primetime television?

And what about funding for women's sport? Who can forget RTE’s The Big Picture: a Woman's World, and the stark difference in funding, which I really didn't realise it was so bad in Camogie versus hurling. I mean, I was shocked at the level of funding that Camogie gets as opposed to hurling. I didn't even realise the GAA didn't fund Camogie. I mean, Christ Almighty, it's the bloody same sport with women playing it. How about the success of the Irish women's hockey team? Compare the coverage of the hockey team to the coverage of the men's World cup rugby tournament. I mean, it's all over the televisions, but the women's hockey was only on whenever they got a slot in and it was different times of the night, so there's just no comparison. We just don't get the same coverage for all of our issues, really. But I suppose it's not all doom and gloom. I'm not here to say how bad things are. I suppose that's my point. I don't want everyone going home depressed. 2018, however, as Orla alluded to, was a watershed year for women.

 

We repealed the 8th Amendment. We stood up and said no and shared our stories about the MeToo movement and that this is not consent movement. Following the rape case in Cork, where a senior defence counsel asked a jury to consider the 17 year old girl's choice of underwear. And I suppose what shocked me most about that case was that the senior defence counsel was a woman. I mean, how would a woman do that to another woman? I just don't know. And that really was the part that got me the most, to be honest, about that particular case. The fallout then from the cervical cheque scandal, which I exposed back in April, bringing the failings of our national cervical screening programme to light, has resulted in a refocusing on a health service that must prioritise and respond to the needs of women identified by women. And for women. And I think that's really the crux of it.

 

We have a health system that doesn't include women's voices for women's health. So, for example, I've shared this story a few times, but I don't know. You may not have heard it. When I was diagnosed with cancer, when I finished my treatment, at the end of this lovely treatment, you get this radiation, internal radiation. And I don't know if anybody knows. Have you ever heard of brachiotherapy? Internal radiation?  Anybody know what I'm talking about? Well, if this doesn't shock you into going for a smear, or this certainly will. So you get this treatment at the end of the chemo therapy and external radiation course of treatment that you go through. So if you are unlucky enough to have advanced cancer. And this was the first time around. Now, this wasn't the second time I got cancer. So the first time I had cancer, a hysterectomy would have been the first port of call. But because my cancer had spread outside my cervix, the next course of treatment then is aggressive chemotherapy and radiation. Because if your cancer has spread outside your cervix, a hysterectomy is not going to get everything. So you have to go through this really aggressive course. And some people are not able to tolerate it, so they generally kind of reserve it for younger women. So basically you have radiation five days a week for six weeks, and you have chemotherapy one day a week for the six weeks.

 

And the chemotherapy day, you have radiation as well. It's the most horrendous day ever. I used to go in at 08:00 in the morning for my chemotherapy, come out at 06:00 in the evening, green, literally sick as a pig. And then I'd have to get wheeled in and have my radiation. But that wasn't the worst part of it. The worst part of it was yet to come. So two weeks after I finished my treatment, you get a little break of two weeks, and then you have to go and have these three sessions of brachytherapy. Basically, this treatment involves getting three epidurals in the space of a week and a half. So I had one epidural on a Tuesday. The next epidural was Thursday, and the next epidural, the final one, was the following Tuesday. And what happens is they knock you out in order to shove this applicator the size of probably the diameter of the coffee cup. Okay? So you can imagine that something this size, and they literally insert that inside your vagina. You come back out, then they wake you up in the recovery room and you're flat on this bed. They wheel you up to radiation and they attach rods to this applicator and they radiate whatever's left inside your vagina. So basically you have that three times, three epidurals, and then you're done with your treatment. And when you're finished, you have a couple of weeks of recovery, and then you come back and you meet with this nurse and she goes through all of the after effects of this type of treatment. So what happens is when they radiate your insides like that, it narrows your vagina, it shortens your vagina. You've got really, your tissue becomes very friable, they call it. So literally, if you touched off the inside of your vagina, it would bleed. It would be that tender. So they give you this bag, and I remember saying this to the support group and every woman sitting there knew exactly what I was talking about.

 

You get this bag of dilators, they call them, but they're these white clinical dilators. I was saying you'd think they come up with something like a rampant rabbit vibrator, something a bit colourful. But these were white plastic, hard plastic things in different sizes. And you start off with the smallest one and basically what you have to do is use this to try and widen your vagina again to make  - two things to make it easier for the doctor, okay? So it's all male oriented, no matter what way you look at it, to make it easier for the doctor or your gynaecologist, if she's a female, to give you an internal exam because you have to still have these horrible internal exams even though you're in absolute agony and if you want to have a sex life again. And in most cases, most women who have had that type of treatment find it very difficult to have sex again. Some women persevere with it and try, and you have to use lots of lubricant and all of that. But you generally bleed. You can't have sex without bleeding because your tissue is so friable. It's a horrendous cancer. And this is why I'm so graphic about it, because there are some women who are on the fence about having smear tests. And I'm here to tell you, if you don't have a smear test and you get cervical cancer, this is what you're up against it, you may not have a sex life again.

 

I met a lady at the support group who came up to me after I spoke so graphically about this, because it's not talked about. These are the things, we're here in 2019, and we still don't talk about our sex lives. We still don't talk about our bodies from here down. And women spend half of their lives in their vagina because you have periods, then you have babies, then you have menopause. So, I mean, half of our lives are spent down in the bottom halves, our bodies, but we don't talk about it. And this woman came up to me at the end of my talk and said, thank you, Vicky, for talking about that. She said, because nobody talks about this.

And she said, I'm 32. She said, and this really just blew me away. I just couldn't believe it. I mean, I thought I was bad, at least I'm 44, plenty sex behind me. Had my two children, and I thought, I can live with that. And I've had my two children. This girl had no partner when she got cancer. So when she finished her treatment, of course she can't have cancer again. Her vagina was shortened and narrowed so much that she has maybe one, two centimetres of a canal left in her vagina. Like she said, how do you have that conversation with the man when you meet him? “I really like you, but we can't have sex.” Do you know what I'm saying? So this is the reality of living with a cervical cancer diagnosis. If you have to have that treatment, if you get caught early and you have a hysterectomy, you're doing well. If you don't get caught early and you have to go through the aggressive treatment that I had, you're facing problems for the rest of your life.

You hit early menopause, you have all the problems with trying to have a sex life again. If you're lucky enough to have a partner, at least you have that kind of support. But a lot of marriages break down. Up to 50% of marriages with the cervical cancer diagnosis break down after treatment, because you can imagine dealing with all of that - it's very, very difficult. So sorry now, on a Saturday morning to do this to you, but it has to be said, if it makes one of you go for a smear test, I'll be delighted.

 

So, I suppose just to go back to, the refocusing. So we need to refocus. And that's really why I'm doing what I'm doing on a health service that must prioritise and respond to the needs of women identified by women and for women. And what's significant about all of these events over the last year in particular, that have seen women stand up is that these agendas have not been set from the top down by government or our so called leaders, but by ordinary stories of women like you and me, who have courage and persistently share their stories to create a national voice. Women like Saoirse Long, whose decision to open up about her abortion experience made a powerful public impact and helped change the conversation about the repeal movement. Women like the wonderful spoken word artist Natalia O'Flaherty. You know, people think of leadership and think know people in positions of power. Leadership, as I see it, can take many different forms, and I would see these young girls as leaders for their generation. Natalia is turning traditional ideas of how to make political statements on its head by using the language of her generation as the spoken word to reach and move young people. That's leadership. These are wonderful examples of different types of leadership. What we can see is that leadership in the hands of women is not about creating mindless followers, but igniting a spark in others to help them to take control of their lives.

 

And that's really, I suppose I was trying to distil it down to why did I do what I did? Well, I wanted to help other women because I knew there were women like me out there. And it's not that I wanted to become this leader for this position of power or to get in and get a job as a politician and become a minister. I did this because I wanted to help other women. And I think when women help other women, we're at our best, and that is the way to go. Orla alluded to it earlier on about a collective focus that women need to help each other out. And when we help each other out, we're better than any men.

I'm sorry about the men in the room, but we are. So I suppose my question today is, what kind of a leader are you going to be? And I'd like you just to think about that. And it doesn't have to be anything big. I mean, I never thought I'd become this person that I've become, but it's happened and I'm dealing with it. But it can be on a smaller scale. It doesn't have to be on a national level, but I think if you start making small changes, the big ones will start to follow. But I think we have to do it together. Women have to work together, or we won't be able to achieve what we want to achieve.

So to finish up, I suppose because of the theme of this conference today, on a quote from Countess Markievicz. I found this when I was looking for something kind of that I thought might be good to finish up on. It's the centenary of the first Dáil, and she was imprisoned for the last time in 1923. And she wrote that having been jailed by her fellow countrymen at this stage, she said, it's just spite and fear of my tongue and voice. So that was why she was imprisoned, because it was spite and fear. And I think that's what happens to a lot of people. So don't let spite and fear stop you from using your voice. I certainly didn't. I don't care what people say about me, I'll still do it anyway.

And that's really my message here today. Don't let it stop you and start thinking about what kind of a leader you'd like to become. Thank you.