This transcript was extracted from the ‘Gynaecological cancer – Patient representative‘ video.

Now we are going to go on to our patient representative, Frances.

Frances is going to come up on stage, with Patricia, a bit of an interview question and answer. Just to talk a bit about her experience, with fallopian tube cancer. So Frances thank you so much. There is a step onto the stage just over there.

And please be safe with it. There. Frances thank you so much for coming today and it’s really nice we find in feedback that patient stories and experience it brings it brings it all together for us in this event. So it’s really I’m just so grateful for you because it’s not easy sitting up here and talking it through. And a lot of people here will relate to things that you say.

So if anybody finds it difficult at all like please come and speak to us afterwards or if you want to leave at any time, that’s fine as well. So don’t feel that you have to sit. Ok so we’re just I’m just going to ask you a few questions and I see you have a few wee notes and just take your time and if you want to stop at any time that’s fine as well. Yeah. Ok. So Frances, when did you suspect something wasn’t quite right. So, I would say last April, it would have been more on the fact of intimacy with my husband that things started changing. So after a wee while, right I’ll go and see the doctor and it was the male doctor at our practice in Portrush.

And I did do I got a smear test done from the nurse, and she spoke about a CA125 blood test and just said if it come back high, not to worry and things like that there, I’d never heard tell of it or any woman I know has never heard tell of it either. And then in two weeks time, I went back because there wasn’t something, I was quite in tune with my body.

So I went back in again. And he did an internal scan just for prolapsed womb and things so he didn’t see anything, so he said he would refer me for an ultrasound. And that was in April and then the referral for the ultrasound came then on the 28th of May so it did. But it was just changes of mainly intimacy, I always would be a person who would go to the toilet quite a lot to piddle and stuff and that so that really didn’t make anything.

I didn’t have bloatedness in my tummy at that time because I would run and be quite active and that so the only really thing that led me to get tested was intimacy issues, and just thinking it was menopause. And that’s what most people do think, honestly. And can we just move on and just tell me then, after you got to your GP then he did some referrals for you and will talk us through your diagnosis?

Yes so I got the ultrasound done in Causeway in Coleraine. I have to say, the nurse that done it wasn’t very polite. I didn’t drink a lot of water that day and she turned the camera down and we needed a full bladder and the screen is not a full bladder. Go out and take some water and come back. And I’m sitting there going I don’t know if there’s anything wrong with me.

So I went out and drank some water. I come back in again and then she started again. You’re holding yourself too tightly, go and go to the toilet, but don’t let it all go. Yeah, it doesn’t happen. So I was really, really stressed by the time I come out from it, and I did speak to a couple of people about how I felt. If I had known then what I know now after getting referred back in August I would have asked someone else to do the scan or spoke up because by the time your second scan comes it was too late to do anything about it. So I wished I had of actually done something or spoke up at the first scan. So if you’re ever going there, feel uncomfortable or anything, or anyone’s making you feel uncomfortable don’t accept it.

Speak up it’s your body and your, you know your body. And then my CA had come back and it was 53. But it was saying on the on the chart “high” but the doctors said, anything could make it high and not to worry about it and everything. So whenever I rang for the results of that I asked the doctor’s surgery if the ultrasound had come back, and she went “yeah, you’ve to go back in 12 weeks time” and I says “but what for?”, “well it doesn’t say here just you have to go back in 12 weeks time” and I’m like, “but I want to know why?” and then she rang me back the next day and said “oh yes, you’ve got cysts” and I went well “how many? Where are they? You know I want more information on it”. So the nurse had rang me and said “oh the doctor will give you an appointment in three and a half weeks time, a phone appointment” and I went “three and a half weeks for a doctor’s phone appointment?”

I says “that’s quite long”. So everytime I rang, I rang seven times between May and July. I rang the doctor’s surgery seven times, trying to get speaking to my own female doctor, which I couldn’t do because it was the male doctor that had seen me, was diagnosing me and processing me so I had to stay with him.

So my own female doctor didn’t know anything about it. And then I went back for the second ultrasound in August. A lovely lady, I told her all my concerns and everything she was really good. And that was the end of, the beginning of August. So then I went on holidays and the doctor rang me on the Monday morning and said, “your scan’s come back, there’s a few wee issues” but she didn’t say much because she knew I was on holidays. You’re going to get some phone calls quite quickly and I’m like, right, ok, so me and hubby had went to Marbella the next day on the bus and coming home and private number come up and I’m going, and “can you come into the Causeway on Thursday or Friday?” and I went “well I’m not back on the country until Saturday so” and she went “well, can you come on Monday to Ballymena?” and I’m going “do I really have to go to Ballymena I live in Portstewart” and she said “yes, it’s the first available appointment I have to give to you”. So whenever that happened, then I was like, sitting on holidays, going well we may enjoy this because the poop’s going to hit the fan whenever we get home, because I knew it was going to be something that wasn’t.

And that first meeting, was the only time that you can actually get an internal scan, because you have to be referred to a gynaecologist for to get an internal scan, and the ultrasounds won’t pick it up quick enough. And by that time then I was diagnosed with cancer. So I was. And that was at that appointment

Yeh? Yeh. No, at that appointment they gave me an internal scan and he said he would refer me for a CT scan. And I said about my CA being done in May. So he said, “if you could go to your own doctors the next day to get it done” because it was late. So I went to my own doctors the next morning and he had referred me for a CT scan that evening about half four, by half ten the CT department was ringing me with an appointment for the week after, and I hadn’t even had my blood’s done yet and I’m going, ok, this isn’t good. So I got my CT scan done, and then I was referred over to Dr Douglas in Causeway. And he did a CT or an internal scan as well.

And in that meeting with the internal scan he started to say about a hysterectomy and I’m ok and he says “if I get to do it, you’ll be my first cancellation” and I’m going right and he says “your name is in an MDM meeting list you will be” and I’m going “well what’s that?” and then he started talking about the cancer specialists and I said “well what then after that?”

“Well, we need to look at maybe chemo and everything” but he never said “you have cancer”. But even though I was looking at everything he was looking at on the internal scan, I’m quite nosey. So it was after that that he referred me, he spoke to me before the CT scan results come in because he hadn’t met me yet.

But by that internal scan, he knew I had cancer, he just didn’t tell me. And then the week after that, it was the 2nd of October. The MDM meeting was at that morning, and I got a phone call from his receptionist to say, “can you come and to see Dr Douglas?” at I think it was half 12 or 1 o’clock and I was like, ok.

So the husband was working night shift and that so I went home and he said, yes, I had, ovarian cancer and it had spread to other areas and my CA125 up to 438 and then that was a referral then for Dr Dodds in Belfast. Ok. And that’s where you came on board. I know and that’s, that’s, that’s important to have that link as well because we link you up then because that’s an automatic referral then to Belfast. I’m sure that was all very scary times for you. It was very scary but I just tried not to get on the Google mass of looking everything up because I just said whatever you tell me to my face is what I have and what I’ll deal with.

Patricia rang me and I wasn’t expecting Patricia’s phone call, I was sitting getting my nails done and I’m going, this wee nail bar and think, oh gosh, I can’t talk. I can’t talk. And, I rang Patricia the next day and I says “look could we have a wee meeting and I can go on speakerphone and take notes? I like to take notes” and Patricia rang me and says “well I can’t now” but I was at work and a good friend was in the office with me and she took notes and Patricia was on the speakerphone and by the time we come off that call I was like well, wow. But reassuring everything else. But it was I, I was only on holidays that I took a bloated tummy, I took a picture of it that night. I didn’t have a bloated tummy before. I would exercise, I don’t smoke, I ran 5 to 10km every day,

I work full time and help to look after Brian’s mum with Dementia. I was out at the gym all the time, running all the time, run half marathons, everything. Apart from a wee drink now and again, I ate healthily, I did everything that I was meant to do to try to keep myself healthy, and it didn’t really matter in the end, I still got it. Yeh I’m sure that has impacted you. When you went up to Belfast then, tell us, talk us through what your treatment then like when you met the team in Belfast and they were talking through what was going to happen next. So I met Dr Dodds first because they were 100% sure that they would be able to get everything out. I actually met him on my birthday on the 8th of October and the encompass scheme has been put in and the wee birthday cake was on the side of the screen and all this, so he did an internal and everything.

But with everything he could see, he was 100% reassured that he could operate and get everything out but as with talking to you, you had spoke about, surgery not always being the best option. Whereas for me it was like cut it out and let me get on with my life. But you were always like, just don’t rush into surgery first and see which comes first. If the chemo comes first or the surgery comes first. And with that within two weeks, the surgery date was there and I just happened to be going up to get all the pre work done for the surgery it was two weeks from seeing the team, Dr Dodds that he was yep we’ll get it out, two weeks time.

I went for an iron infusion in the Causeway ambulatory unit because my iron was low so before the operation, they needed to get my iron levels up. But on the Saturday night I took a really bad pain up in my shoulder, and I had taken a pneumothorax before my holiday with a punctured lung.

So it sort of felt like that all night but I ignored it and I was like no, nope. If I go there, I’ll not get the operation. So I went to the causeway on the Sunday and a really, really good consultant did a CT scan and says, no, you’ve no blood clots. You’ve no anything like that there, everything’s ok. So I went up in on the Tuesday

for the the operation on the Wednesday, and Dr Dodds came round with one of the Macmillan nurses and he says oh he says, well they rang me and says “where are you?” and I says “I’m sitting in the bed” and they had marked me for the stoma and everything in case guess that was what was needed. And then he said “you were at the Causeway on Sunday” and I says “I’ve been at A&E and that all weekend”

And I says “come on and let’s get this done get it over with”. So he sat and he looked at me and he went well he says “It shows that it’s spread to your shoulder” and I’m going “right well what does that mean?” and he says “well we can’t operate” and I’m going ok, so my husband and my son we ended up having to get the train back down home again.

So we called into Benedict’s had a large glass of wine and says stuff it, can’t change it, so just move on with it. And then that was whenever the chemo talk started then for chemo. Chemo I was more scared of the chemo than the cancer because you’ve heard that many talks about it that Patricia had rang me and talked about the two different treatments, I would be on the carbo and the taxol and she did say you would lose your hair. There’s no if you’re going to do it you’re going to say it so you may as well say it and I’m very much like that myself and Patricia said everything you know about the treatment and that.

So it was coming up to November and that so lo and behold, before Christmas and chemo started the Christmas tree was up, Christmas decorations were up, everything was done. We had a spare room put into like a sick room there was a TV and some wee Christmas decorations if I was sick during chemo I’d go into that room for the day or night and not be bothering the husband.

I never needed it, touchwood. I never needed it, it was really I only had two sick days of feeling nausea for a few hours, but I took the tablets. I tried not to take the tablets and then I took the tablets. And I’m like come on you silly mare take the tablets that’s what they’re there for. So, I took the tablets and it was fine, after treatment and everything we walked back down from the City Hospital to the Grand Central Station because I wanted to keep my body moving, to keep the chemo going around my body and not just sitting in there and me feeling like I’m not doing anything.

So I just wanted to keep moving and doing things to make sure that it was moving round the body and everything and just trying to stay active with it and not letting it beat me. Yeh and like prior to the diagnosis, you were a very active woman and I think you just kept that momentum. Yeh haven’t ran since, but I’ve been out walking every day and I whinge at the husband every day, rain or shine, right when are we walking and what time are we going out at let’s go and he’s like ok but we’re out every day. And you talk a lot about Brian and your family. Like how, how did you how was that for you? Like talking to your family? I think at the time it was a lot of guilt because you were putting everybody under that emotional cart of cancer.

My husband’s father had passed away of cancer quite a few years ago, and my family has a lot of cancer, but not this type. So they’ve always heard the word coming at them. And even whenever I was diagnosed, I was like, there’s so much you can do now. There’s so much. Come on, that’s beat this, do this and whatever.

I went down to my parents first because they’re in their 80s and stuff, so I was talking to them. But you haven’t had a biopsy and how do you know this? And how do you know that? Because everybody starts asking all the different questions and everything. And I’m like, look, I’m not turning round and saying something because I haven’t had a biopsy.

I’m not telling anyone this because

I wouldn’t have said if, we had to read the room the first time with Dr Douglas, we come out from the room and I says to the husband I went “did you get out of that what I got out of that?” And it was the Macmillan coffee morning at the hospital and he went “yeh” and I went “well f it” was more the words and we went to the Chinese restaurant and had our dinner and I was sitting with a glass a wee glass of drink and I’m sitting like this here going oh sugar. But telling family a lot we told over the phone or we got other people to tell them, because you couldn’t tell face to face at the time. And even with meeting everyone face to face at the very start it was at kid’s birthday parties and there was tears and there was everything else and I’m walking in going no no no tears no, we’re not doing that. We’re not going down that route. We’re going to be strong. We’re going to be positive. We’re going to stay ahead of it. We’re not going down that route. Just deal with it and if I’m strong you be strong.

And they all took on that. Yeh. Every one of them just was really much no if you’re going to be strong, we’ll be strong for you. But it was it was more emotional knowing that they were getting that stress, and putting stress onto the whole family, that you didn’t want to be doing but it happened.

And having that positive approach is, is good, but it’s really good to have your family round you for that support and your friends as well. Oh, definitely, they have been amazing. Yeh now when treatment ended your chemotherapy ended how did you feel about that? Did you feel anxious or. Yeh, I felt very anxious because whenever you’re starting the chemo you think you’re taking back control.

Something’s going into your body that’s killing it and you’re while you’re still getting chemo, and it’s you’re not it’s not controlling you. You’re controlling it. So I sort of always felt very much like I was in control or something was happening. And then when the chemo ended, you’re like and going what now, what what’s next? And when the scans didn’t that showed they showed it was good progression that the chemo had done, but it wasn’t going to clear it.

So there was that hit as well. I know the son took it very hard after the second CT scan, and everything to know that it wasn’t going to go away. But I think with chemo finishing you were up and down at the time because of the maintenance tablet the PARP tablet they put me on was Olaparib.

But I did still feel like they said you wouldn’t be called back up again unless you felt something different or something wasn’t working or the tablets wouldn’t show anything. So I was sort of feeling like ok, right. So I just go home and take these tablets and then I’ll ring you if something’s wrong. And the first two months of the medication it didn’t do what we wanted to we see the marker’s rose

for the first two months and I had to get an urgent CT scan, which was going to be over two and a half months for an urgent CT scan. So low and behold Patricia had made a appointment to see me in the Causeway. And I told her two and a half months and Patricia went you’re not waiting two and a half months, and she just said “can I ring the CT department?” and I went “yeh” and in Patricia style

That night, two weeks later, I was in getting a CT scan, and I just happened to message Patricia that morning and say to Patricia I’ve had my CT scan done and she said “yeh I have it in the diary, and I’ve asked for the results to be expidited and I’ll let you know” and she did, the week after that she rang me with the results.

So everybody needs a Patricia in their life. You’re very kind Frances. So talk me through, I know you’ve been having meetings about going back to work. How’s that for you? Yeh, I don’t think I’d ever be going back to work because I work in Tesco in Portstewart and I’ve been with Tesco 21 years and it’s all very much, for what jobs I was doing, the nightshift manager, checkout’s, team leading and it was always supporting and supporting and but for now and packing out now I wouldn’t do they do packing out and I stopped so it would be checkouts only. The occupational health had said on his phone call that because of touch and everything such close proximity with my medication and that he wouldn’t advise me to.

My work has been very good and very supportive. Obviously I’m not getting paid, but they’ve been very good and supportive. But I’ve had to go into meetings, and review everything again and again and again. So you sort of get to that point your going ok so there will be a point by the next two months that I’ll have retired through Tesco but that’s after 21 years. But again for me it was being the point of it’s hard for me to turn around and say that I’m not going to be working anymore for that company. It’s a big emotional thing because of the customers, the colleagues that your work with, and it is hard to go in and go through the meetings again and again.

I have a really good store manager, and she was in our store as a student from she was 19. So she’s now worked her way up through Tesco to a store manager. So we do have a bond. Yeah. But you still have to go in and do the formal meetings, have a note taker and answer questions and everything else and occupational health ringing you.

So I won’t be returning to work, just because of the nature of the job. But again, that’s something that me and my manager will deal with in the next two weeks or so. Yeh I’m sure that’s been difficult because it’s kinda been grasped away from you hasn’t it? But I have to say Macmillan benefits were really, really good at the very time after diagnosis, they had rang and asked the questions, how are you coping mentally, physically and you know money, moneywise how are you coping? Do you need any help or support and everything? And I wasn’t anticipating that phone call either which was really, really good. They have been there whenever I’ve rang, they’ve been able to help with things and give advice and everything. So they were very, very good.

So use them for whenever you need to just ring the phone and ring them. How are you feeling now? What would you say is your new normal? The new normal is taking my tablets, walking every day. I’m hoping to get back to the gym. It’s just a personal training session with me and my sister in law and my other friend.

We’ve done it every Thursday for seven years and I haven’t been back but I would like to sort of start to think to going back for strength a wee bit of strength training and everything. But the new normal is getting up in the morning, taking my tablets, meeting my parents for a coffee, me and the hubby doing bits and pieces.

But staying active, getting up in the morning, getting a shower, putting my hair and makeup on. Well, my hair’s back and doing my makeup and dressing up. Putting my badge on every day because I ordered them out of Amazon last year and if anyone ask’s what it is it’s Ovarian Cancer. So I just always have my badge on, my mum and dad wear their badges.

Everybody wears their badges. Just to raise awareness. I’ve always says that at the very start, not one of my female families, anyone knew anything about CA125. Definitely not about Ovarian cancer. So it was one of those things that I am pushing and pushing and pushing, any woman because for no screening is absolutely diabolical.

An internal scan could pick up so much quicker, but you can’t get one. So that’s the annoying part of it, is that you can’t get it, but I refuse to sit down and cry in a corner about it, because when I get up two hours later, it’ll still be there and it won’t have changed anything.

So that’s not my way. My way is just to fighting it and putting on a face and going on. Frances, like, honestly, your story is remarkable and thank you for sharing it with us, but I just wanted to ask you one last question. If that’s ok, if you could talk to yourself just before you started treatment, what advice would you give to yourself? Listen to Patricia, don’t Google, do what they say.

Everyone’s so different on all their journeys. Even on maintenance tablets there’s women I know are on a different maintenance tablet. Why are you on that tablet and why I am I on this tablet? and things like, everybody’s journeys totally their own. You can read everything and go down a rabbit hole of Google but if you keep what you’re getting told face to face and know that they’re doing their best for you and put their trust for you and not try to go and do alternative medications that you’ve seen online from TikTok or whatever. Some people might like to do that. I, I go with what I’m told, try to be a good girl and do what I’m told.

But there’s a lot of people I know do try alternatives because they say this and they say that and say the other but if they were that good, really, they would be on the system. And not worry about, well, for me not worry about the chemo as much because the chemo scared the life out of me.

And it was definitely one of those things that you just were like, chemotherapy oh gosh, what’s this going to look like? I’m going to be sick and other people I lost four stone and she can’t afford to lose four stone. And, so just I ate healthily. One of the things was I did Google was a lot of food and nutrients because there’s a thing you can find online it’s about, what chemo strips out of your body and what nutrients you can eat to put back in again, and I have stuck with that from the very, very start. All the seeds, the fruit, the nuts, vegetables, the fish and everything. I do try to literally eat as much good stuff as I can. Eat before chemo, before going up that morning. Don’t be scared if you do take an allergic reaction. Because the girls are there.

I’ve taken two, the girls were there and just literally had it under control in the various few minutes that it needed to do. Be strong with it. My husband and my son went up every three weeks on the train with me, and the three of us got the train up and back down again. And just keep, keep active and keep your head up.

Chin up and smile. There’s so many people up there as soon as you go through that Bridgewater door. Me and the husband went in through the Bridgewater and the door opened adn we were just wow. And I just call it A&E on steroids. Because it’s fast. Whatever you think A&E’s like, but Bridgewater and double it, quadruple it and that’s it all day every day. Even when you were up on New Year’s Eve for treatment.

And I said “suppose there’s not too many in for New Year’s Eve” and she was like “oh I think there’s 72 in today” and your like ok. So, just don’t be so scared of it. If you do lose your hair, you’re going to lose it. I’ve got my new silver fox now so I’m never dying it again.

But I did go down to a Turkish barbers one Sunday morning on my own whenever I had so many clumps had come out, you could only take so many clumps coming out. So I said to my husband “I’m going down to Nico’s” and he went “take the son down with you” and I said “no, no I don’t anybody sitting there oh oh, mummy’s getting her hair cut”.

No, I says I went down on my own got my hair cut and came back up and had a shower and that was it done. So, you don’t need to do things or say things. Just do your own thing, basically. But don’t be scared to ask questions because Patricia and them have been amazing. Listen, Frances, you’ll all agree that was an amazing story and thank you so, so much for sharing Frances.

Thank you. Oh thank you so, so, so much to Frances. You know, so many people go through a cancer journey, without meeting anyone else or hearing anyone’s local story. And it can really help people feel more connected and less alone in their experience. And it is not easy getting up there and having this microphone in your hand so, Frances, again, thank you so, so much for sharing that. And I’m sure you wouldn’t mind anyone popping up and having a chat with you if they if they have any questions. So once again, thank you so much to Frances.