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Amy Wilson, Macmillan Information & Support Manager hosts our cancer stories podcast, interviewing people who have had a cancer experience. The cancer stories podcast series aims to bring you local stories from local people in the Northern Trust, sharing anecdotes from diagnosis and treatment, to telling family and loved ones.
Provided by the Northern Health and Social Care Trust in Northern Ireland, generously supported by funding from NHS Charities Together (https://nhscharitiestogether.co.uk/).
Feedback and suggestions would be very welcome via our short online survey, https://forms.office.com/e/i8ZGK9JPyF
Cancer stories Live EP2
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Welcome to the 5th episode of the Cancer Stories podcast with the Northern Trust, local stories from local people. My name is Amy Wilson and I'm the Macmillan Information and Support Manager here in the Northern Trust and we are going to share another live recording from an event that we had 2023. It was a gynae cancer health and well being event in the Ross Park Hotel and during the event we hear from Pauline who shares her journey with ovarian cancer.
Her cancer nurse specialist, Patricia Rogers, asks her questions about her experience, and we wanted to share this with you today. Okay, so now we are going to hear from our patient representative Pauline, and they're going to sit up on stage here for a bit of an interview style question and answer.
And then afterwards, Pauline's going to share a poem that she has written. And we just want to thank Pauline so much. This is not easy. So thank you so much.
Here I am again. I feel like Patrick Kielty in the show now. Pauline, thank you so much for agreeing to talk to us today about your story. I know it can be difficult. So if there's anything that I ask you, I think, you know, you'll be. You'll be, me and you are just going to have a chat. Yeah, fair enough.
Just ignore all the others. So, we'll just start off, I suppose, at the beginning, and when did you suspect something wasn't quite right? Okay well, sort of early 2021. I was extremely tired. I'd, I'd been so tired, maybe going back even to December of 2020, I'd been feeling a bit tired and, and then into the new year and this tiredness was persisting.
And then I remember particularly one day I was out for a walk with my sister May, who's here today, and another sister, and I was saying how tired I was. I'd say it was February time and And then they were saying they were really tired as well, and we're putting it down to the lockdown, the previous Christmas we were in lockdown, and we're just bored and nothing to look forward to, and I thought, that's what we all did then, I was just a bit down about the whole thing.
And then that was, I say, February, and then March time, I was out walking with Mary, and I said to her, I've, and it just happened really quite suddenly, I was getting a funny feeling in my tummy, lower tummy, when I was out walking, and every time I, I took a stride, I was just aware of a feeling, it wasn't a pain or discomfort or anything, just a funny feeling.
And, of course, I said to her, you should go and have that looked about. At the same time, I was increasing my fruit intake, my water intake, because I was trying to be healthy, I'm going to need a wee drink. Around the same time I started running to the bathroom, far more frequently. So that was sort of late March, early April.
And I was sitting in work one day, and I was at the desk and I thought, I just want to put my head down and go to sleep, I was so tired. And I knew even in the house I was taking wee rests and I was going to have a sit down in the afternoon. And I would never have been like that, I was always thinking, I've got ten minutes I can do this, or half an hour I can do that, I can always fit something else in, whereas I was feeling I just had to stop.
Not off in the afternoon and then I'd be chastising myself, you know, thinking you're just getting lazy, for goodness sake Pauline, pull yourself together and get on. But this particular day it was just awful and then I thought I have to ring the GP and then I thought first of all I'll go for a wee walk, bit of fresh air, I'll do a wee first, went to the loo.
Took a 10 minute walk, came back, had a wee again. I thought, oh, this is not right. Something's not right. So rang the GP and get some bloods done? She asked why, and I said, well, I'm really, really tired. I've been tired for a while. And I said, I've just developed a funny feeling in my tummy when I'm out walking as well.
And then before I mentioned the toilet situation, she said, what about your bowel and waterworks? And I said, well, actually, it's all a bit off kilter. I've been running an awful lot to the bathroom. So, of course, she brought me in and we did some bloods. It was the 9th of April. Got the results of those on the Tuesday.
The Sunday in between I walked, I hiked up a mountain so I didn't feel I was sick in any way. Got the results on the Tuesday and the children worker, the CA 125, had come back raised. I didn't even know what that was at the time. So she sent me for an ultrasound the very next day to the mid Ulster in Magherafelt.
And... That came back that they were showing up something. So I attended Antrim Area Hospital. And, they did an internal camera scan there, and it all escalated from there. So it was just that, basically the tiredness, the fatigue, the funny feeling in the tummy, and the... And I also, in hindsight, I realised as well, I was kind of off my food a wee bit.
The topic feeling full more quickly, I didn't realise that's what was happening. I was just thinking, oh, I've had enough of that, and I've not finished my meals, so, yeah. And all those symptoms you're talking about are exactly what Dr Connolly did to you, aren't they? Exactly, exactly. And you know this thing, Patricia, in hindsight I'm really quite angry at times that I didn't know the symptoms of ovarian cancer where we'd all look out for our breast symptoms and we'd go for our smears and even our bowels.
We know if there's something not right we'd often maybe mention that and get a wee screening kit out or something. So that just leads us on I suppose to talking a wee bit then about your diagnosis and how you, about the time you actually came up to Antrim Hospital and received that diagnosis. Yeah, then once we saw a doctor.
It was actually Dr. Quinn I saw and he did the camera test and sat me down and said they'd found something on my fallopian tube ovary and found a cyst. In hindsight, I've laughed about this and I feel so stupid because when he said the word cyst, I just thought it was just a cyst. You know, I've had one in my breast and they took me and they drained it and so I wasn't particularly concerned.
And then the conversation went on. And he started talking about treatment and hitting me hard, and then I realised, I said, you're saying this is cancer, and then that was when a penny finally dropped with Pauline and it wasn't that good. What happened then? Then I was sent for further, that was the initial thing, and then I was sent on for further scans, ultrasounds and TC scans and biopsies and things.
So, on the 19th of April. I got the full picture, and I was told that, yes, I did have ovarian cancer, and because it was spread outside of the abdomen, it was in my chest, around my esophagus and heart, and on my bowel, and it was stage 4B. So, I was just so shocked. I could be so sick and not know I was sick.
Yeah, because you've been so well, and as you said, you've picked up a bit. I had been so well, and the strange thing is as well, I got the diagnosis, and within two weeks of diagnosis, it became apparent I was really, really ill, because then the top of the bloatedness, well, I didn't actually get that until after diagnosis, and within two weeks I looked like I was six or seven months pregnant, so.
What about your family? And did you have anybody with you on the day you got your diagnosis? Well, you were there. I remember it so well. So well. Dr. Quinn remembers it even more. Anyway, tell us about that, Pauline. Okay. Well, my sister Mary works in the, in the hospital, with you guys and she was around, so I'd gone in myself to the assessment because I'd said to Declan, go you on, don't you be coming in because I didn't know what to involve.
She didn't know who Declan is in case they get muddled up. Oh, my husband Declan. Not their Declan. Not that one. So I sent him off out to the car park to get his steps up, because this was kind of an ongoing competition with us about getting the steps in. And I wasn't particularly concerned at this stage.
Or maybe I didn't want to be concerned. Maybe it was more, sort of, it'll not be anything bad. So, after that then... Declan wasn't with me so when Penny dropped in I said you get Mary so Mary came in to me first and that was tough and then I said you're going to have, you're going to get Declan so she brought Declan in and you left us a few minutes and we laughed about this since as well because The team come back in and my husband was hanging over the basin and basically passing out.
He just did not cope well. And then he got up in the bed and they were all carrying him water and I said, I was the one who just got the cancer diagnosis and you were the one getting all the attention. He was. Story of my life. So anyway, we can lighten that up. So telling him was very difficult and that was very hard and then of course we had to break it too.
We have three adult children. So we were driving home and we just literally pulled the car over. And we just phoned them all individually, the eldest boys in London. So rang him and just rang the two boys and a girl and rang them all. And I think initially I was in a state of shock. I wasn't really affected that terribly by it.
That's what it was. And then... I told my father, with Declan and Mary supporting me, I told my father, at the time I said not to tell mum because mum has Alzheimer's and her dementia is quite bad and I didn't know how to deal with that so we just took dad aside and we had a chat with him and that was very difficult for him but he felt mummy should know anyway so he told her on his own.
But it didn't have the impact and that's a blessing that it would have had otherwise. And then I have ten siblings, so I thought, well, I can't make ten phone calls about this, I can't go through this ten times, so I just, we have a group family chat, so I just put a I posted into the family chat and told everybody that it wasn't, it wasn't a good diagnosis and I was going to have to go into chemotherapy and treatment and, and then my friends had to tell, well I don't even remember telling them, I think probably Declan told them, I don't even know.
I know because it's a lot of people to talk to. It was I couldn't do it, I thought, Patricia. I knew you were going to get emotional and I, it wouldn't be so. I thought, I just can't do it. I suppose, plus at that stage you hadn't been up to Belfast. No. And you hadn't really got all the answers. And that's tricky.
Because you get family chucking a lot of questions at you and you don't know. At that stage I didn't know don't know what, how to answer them. No, exactly. So at that stage you were referred up to Belfast because that's obviously where you got up for your treatment. And so, when you went up there then you had a good chat with them about treatment.
So how did that work out for you? It went okay. It was really explained very clearly to me what would be happening, that I would be offered six sessions of chemotherapy. possibly surgery. Surgery wasn't an option to begin with because of the widespread of the disease. So they said what they would do though, I would get three cycles of chemotherapy and after that they would do a further scan and see how things were looking.
So, we did that, we had the first, actually the, the pathway to getting started the chemotherapy turned out to be not really straight forward because I did get very ill very quickly and I had the ascites, the fluid build up, so I was admitted to The hospital in Antrim for a drain. So they drained off about 4 litres of fluid.
And then, because I spiked the temperature that night, they kept me in overnight and I was on IV antibiotics and fluids and things. And then I was up to City Hospital the next week to start my chemotherapy. But my liver function was way off, completely off. So they said it wasn't safe to give at this stage because they didn't know what was causing that.
And I'd have to go and have a liver scan. And of course, at that stage I thought, right. It's in the liver, you know, it's, this is not good and that was very scary and then they had to talk to the liver people at the Royal, so sent off home for another week and then brought up the following week, so they said.
The liver function was still raised, but they were now content that it was caused by the A. V. antibiotic that can affect the liver, so having everything else in place, they said they would start me that. I was begging them, I was actually begging them that day to start me because the ascites was back, so they said they'd start me just with the carboplatin.
They wouldn't put in the paclitaxel, the first infusion, because it's a bit sore in the liver. So I got the first, the first chemo. And got the fluid drained two days after that again. And thankfully after that first chemo, the fluid stopped building. So I took that as a very good sign. The first chemo wiped me out completely.
It terrified me. I thought I'm never going to do this six times. But again, went on in cycle two and cycle three and they were very manageable. I really, it was just because I was so poorly at the start that it affected me so badly. But I was always into my fitness and exercise and activity. And I did keep up my walking throughout and it was good for my mental health and everything else.
So I got the halfway scan and my husband is intense. Don't explain to me, explain to these ladies. He's a pretty intense character and his science background is in biology. He's a scientist anyway so he had to do loads, he started doing loads and loads of research and that's how he coped and he kept seeing if, in my head I thought.
I just, in my head I just always thought I would get surgery and it was important to me that I did get it. I know not everybody does and it's not always necessary. But in my head I just wanted it. But he wasn't so sure. So he was doing research. So he actually spoke to the Christie Hospital in Manchester, a big cancer hospital there.
And had that. in the, his back pocket that if the city said I wouldn't get the surgery, would they have a look at my case and take the, and so they'd agreed that they would. Now we, we were quite open with our team in Belfast and we told them we'd done all of this. So they knew that. So when they rang to say that they had decided not to take me to surgery because they felt I was having a really good response to the chemotherapy and they didn't want to, it's massive surgery, so they didn't want to.
risk any disruptions or may take an unwell at post surgery or any complications during surgery. But they said, we know you've spoken to the Christie team, so we are going to ask them to, for a second opinion and whatever they decide we'll go with. So that took about four weeks for that. So in the meantime I went ahead and had a 4th cycle of chemotherapy.
And then the chemotherapy had to stop to be heard what the Christie said. And they came back lo and behold, and I just assumed they would all agree. So that 4 weeks was a really, really dark period for me. I was just convinced, you know, that this wasn't going to be good. But they came back and they said, no, if this was our patient, we would take her to surgery.
So thankfully the team in the city said, okay, well, we'll do it. So they took me and we had the surgery. Yeah, so how did that work out for you? Well, getting there wasn't a straight forward pathway either. I know, I know. Because... Did you feel the recovery after surgery was a wee bit more impactful than the chemo?
Well, I think, well the actually getting to surgery was difficult because it turned out then I had, I used to have problems and I was admitted. So that was your white cells were low. the white cells were too low. And the first day I was admitted, the first time I was admitted was to go to surgery on the 10th of September.
gowned up ready for theatre and the surgeon came in and pulled the curtain around and said it's not happening today, Pauline. Your neutrophils are too low, it's too dangerous, we can't take you to theatre. And I was absolutely devastated. He went off to ring my husband because I wasn't capable of talking to anybody.
And So he says, not cancelled, it's just postponed, we're getting you back next week, just need to give these, this bit more time to build up again. So, came back in the following week, and they did the blood test the day before, the results were in, still no good, the neutrophils were too low. So they had to get haematology on board.
And they came in and did a bone marrow extract, because if the bone marrow had stopped functioning then these neutrophils would never recover. And that was a very dark moment because I asked. the surgeon and what does this mean because if I can't get the neutrophils up, I can't get surgery and I also can't get chemotherapy and what does that mean for me?
And he said, well then, your team will have to have a very frank discussion with you and you'll be offered counselling. So that was a horrible day. But the haematology, the bloods had been taken when I arrived that day as well. And lo and behold, they came back and they were up, the figures were up, but they postponed it for a further week in case that was just an anomaly.
They said they couldn't take a chance. It was raised so much from where it had been. It was only at 0. 5 and it had gone up to 2. 2 and they said we need to be sure so they postponed it for a further week and then on the 24th of September, almost two years to the day, I had the surgery. So, as I say, that was, that was good.
Recovering from that, I woke up and it was horrendous. The pain was absolutely horrendous. It turned out the epidural hadn't taken, so it took a while for them to realise that. But then once they got me the wee drips and the wee ticker, you know. I think it's the stress you had beforehand. Yeah, yeah.
Also, no one, I have to recover because I've still two cycles of chemo. I have to, and I have to get back to that as quickly as possible. Patricia, I was so determined in the hospital and I got out after about nine or ten days, I think. And I mean, you have to learn to walk again. I couldn't understand why these legs wouldn't move.
It's literally a very slow walk around the house, a lap, and then. two laps and I just built it up and I remember one day with my daughter going out as far as the gate and there's a wee hill just up to my parents house and I just cried and I thought when will I ever get up that hill again but four or five days later I was up there and you know so I was very determined and I thought I just have to get back in so at the three and a half week three week assessment after surgery I'd made it known I wanted to get back into chemo as quickly as possible so they said if I felt up to it they would go ahead so it got me fifth cycle, three and a half weeks after.
And that's, that's a big undertaking. And that was, that was big, but I was so grateful to get back in. So they finished the two cycles of chemotherapy and then that was it, treatment ended. That was treatment ended. Last cycle of chemo I think was the 8th of November. And then the scan. And the scan results came in at the end of November.
And it was, it was better than we could ever have hoped for. They said there was no visible evidence of disease. Small node in the chest that nobody was given, nobody was concerned about. And But, and initially, initially I was euphoric. I thought that this, this, I could never have dreamt I'd get to this stage.
This is where I wanted to get to, but I'd never thought it would be this good. So I was absolutely delighted. But then this darkness set in that I was not prepared for. And when treatment was over. Well, all that, I was so busy for a few months with all the appointments and all of that and everything else.
But still, and I knew I was in a really good place physically with regards to cancer, but my head was a complete mess. And it was this constant, this fear of recurrence, it just was constant, it just never went away. There was this real sadness on me that I couldn't shift. And it was like I think because I was always...
So fit and active. I just couldn't understand it, you know, and I'd lost that history of good health But now you ever go if I would tick this cancer box simply. There's that sadness on me. There was, a loneliness I thought, you know, to the outside world, to my family, my friends, and they were absolutely brilliant.
I had so much support I can't tell you between love and prayers and support and even the teams, all the Macmillan teams, the team in Bella Everybody is so so good. And I'd also, I'd also joined the Target Ovarian Cancer Support, online, and they were terrific, and I got great help there, and so did, so did my husband.
And I've lost my trajectory, and I thought we were talking about, oh, re recoverance then? Yeah, re recoverance. So that took a while, but around the same time, I actually, I actually then got some more counseling from Macmillan and then around the same time the Target Ovarian Cancer Charity were asked for a focus group, there's a wee online community and they were wanting a focus group because they wanted to put together some kind of a program for women who were through their treatment and this moving back, moving back into life after, after treatment.
So I was part of that focus group and then they put together a program. And we called it My Next Steps. So I was one of the pilot group who they rolled this program out to. And it was just fantastic. It covered all those things that we didn't understand about what had happened to us. We had one of the, it was a seven week thing.
It was three and a half hours once a week. And we had loads of speakers. We had a, we had a gynae oncologist or surgeon who did only ovarian cancer and she was just amazing because all those questions like what is this momentum? Why do we not need it? Like why do some of us get, why do some of us get surgery and why do some of us not get surgery?
There was talks on intimacy, you know, after. Cancer and things like this, there was talks on just mental health and fitness and exercise and it was so good and that really, I think that was a turning point for doing that wee program. I felt that really got me back on track. You know, so. Did you feel that was like the start of your transition back to normal life?
I definitely did. It got me really transitioned back into being more like myself, you know, so yeah. And how are you feeling now? What is your new normal since treatment? How many years have you been out now since treatment? I'm two years post surgery. Yep, two years post surgery. And I'm doing great. I'm doing really well.
I'm back out. You know, way back when I finished finishing the treatment, I just couldn't plan ahead. I couldn't even plan a night out. I couldn't plan anything. I couldn't look to any future, even no matter how short it was. But now I'm back making plans and having a few wee trips, and I physically, I feel well, well, I'm back at my Pilates and yoga and walking, and I never got back to me, Robin, mind you, maybe, maybe someday I'll try that again.
I'm just, I'm just great. I'm just really well. I'm just, I'm a heart full of gratitude. I just, gratitude is, the meaning of gratitude, the meaning of the word gratitude has reached a whole new level, you know, and I just, every day I'm so grateful that I wake up and I have another day and it's, even if, even if it's a bad, and I still get dark days, I still get a day when it's.
Like, it just overwhelms me and the fear of recurrence never goes away. It's there every day, but it's not as, I don't let it consume me anymore. It's there and I think, right, I'll deal with that if it happens now. And it's sort of, I put it on the back burner. But if I have a bad day, I just think to myself, okay, this is not, this day is not going the way I'd hoped it would.
So I'll just feel it for today and then I'll reset for tomorrow and get back on track. So that's kind of the way I'm. I'm on PARP inhibitors, which is a maintenance treatment, so I'm still on that which I'll probably have to come off. I would say you can only be on it for two years, apparently, so I'll probably have to come off at the end of the year.
They might let me take it in January and we'll see how it goes after that, but for now I'm great. One last question. If you could talk to yourself just before treatment started, what advice would you give to yourself? I think I'd have to say you're so much stronger than you think you are. And you are.
And, you can do far more than you think you can do. Yeah, yeah. And you're going into a tough little journey. There's going to be bumps in the road. You're going to get over those bumps. And I'm just, I just hope, there's always hope. Yeah. During the whole thing I thought I have to hold on to hope, you know.
As they always say, hope's the last thing to die. Yeah. So just remain hopeful. And Don't Google. I think you'll all agree, she's been through a rollercoaster of emotions and treatment and anxieties and look at you now, you've done brilliant. I'm so grateful. I want you to take a drink of water.
Pauline is going to finish off on a small poem that she wrote. Probably at the beginning of your treatment? Yeah, I think it was in my third, my second or third chemo session lying in the city and I just... And did you find writing a poem helped express yourself or just write it out? During the process, I don't know why, but when I got the diagnosis I started to keep a diary.
Yeah. And I've actually looked back on it just when this was coming up and it's amazing the amount of stuff I'd forgotten that's happened and things that had happened and even my feelings and emotions were all in there and I'd forgotten just how bad it was at times. But I'd say at the start of treatment I was lying one day and occasionally in the past I'd have written wee poems for friends birthdays or something like that.
And this just started to come into my head so I just, it took me a few days and I put it together. And at the time I suppose it was trying to make sense of it all, where I was and what was happening and what I was hoping, how I was hoping it would all turn out. So I'm kind of grateful. I'm thankful to say that what I put in paper has become my reality, so.
Are you okay to share it with us? Yeah, and we'll finish on that.
Go ahead, Pauline. Okay. They told me I have cancer, advanced ovarian it seems. That can't be right, I'm fit and well and my active mind and body screams. Inside my head so they don't hear, I say, you've got it wrong. How could that be when I've worked so hard to keep well and healthy, strong? But with more investigations I no longer can deny, my life has now forever changed, who am I to question why?
But the fear is overwhelming. Disbelief in equal measure. How could I really be this sick as I went about at leisure? Living life out day by day. Going about without a care. Except trying to avoid the COVID. Never suspecting that my cells were turning rogue inside me. Silently invading through my frame. In a race to take me over.
Do they think this is a game? My path ahead is now mapped out like a scary roller coaster. Will chemo work? Buy me some time. Or is my precious life near over? Can't let these dark and haunting thoughts that now occupy my head to rob me of my will to fight I will not take to my bed. I must trust in all the doctors, follow through in their advice, take on board these chemicals that may prolong my life.
For this is now my new reality, so much to comprehend. But I'll keep up beat and positive about how it all might end. Even though it is incurable, that doesn't mean to say I won't get into remission, live to fight another day. For cancer's medicine's matching me, I'll manage the fatigue. I'll take all that it throws at me, for I'm in a different league.
I'm determined, strong and mighty, my spirit won't be crushed. I'm surrounded by my loved ones, in prayer and love and trust. So even in the dark of night, where thoughts of terror reign. And tears and prayers flow quietly, I'll battle through the pain. Hold firm in my ability to stave off this damn disease.
Try to understand the challenge with which I've been besieged. So now the swords are drawn, the battle has begun. Just cancer me and chemo, my resolve won't be undone. Pick up the gauntlet, run like hell, show malignancy who's boss. This is one competition I don't intend to loss. The gloves are off, the bell has rung.
I'm ready for the punches. This determined little lady won't sit upon her hunches. I'll lead this disease a merry dance. Maybe let it think it's winning. Come back with the knockout blow and watch everybody grinning. Listen to my loved ones who've grown more precious by the day. Ask how could we've ever doubted your willingness to stay.
They'll wrap me in their loving arms and a new life will begin. It may be omnipresent but I didn't let it win. I'll carry on indefinitely, finding new joy in my soul, appreciate each day in life and hope that I'll grow old. But should it rear its ugly head, I'll deal with it if and when, knowing if I beat it the first time round, I'll beat it once again.
Well done, Pauline. Yeah, okay, well done. Thank you. Thank you so
much. I am absolutely blown away. Wow. What a story of perseverance and strength. Thank you so much, Pauline. And that poem, I don't know about all you guys, but I'm trying to keep it together. That was so moving. And you know, so many people, you know, they go through a journey with cancer without meeting anyone else or talking to somebody else who's been through something similar.
So it can help people feel more connected, less isolated. So, you know, you know, this is always the highlight of these sorts of events and absolutely that was one here today. So thank you so much again, Pauline. Thank you so much.
We just want to thank Pauline so much for sharing her story with us and thank you so much to the folks listening at home. We'd be very interested to hear your feedback. We've embedded a short survey and the text around the podcast platform. So if you could give us any feedback or suggest any future podcast topics, we'd really appreciate that.
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