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Colleen - Interview 27

Age at interview: 25
Age at diagnosis: 25
Brief Outline: Colleen was diagnosed with CIN3 in 2009, aged 25, and treated by cone biopsy under general anaesthetic. She was worried about having general anaesthetic and would have liked more information about it.
Background: Colleen is single and works as a producer for the BBC Ethnic background / nationality' White British

More about me...

Colleen had her first cervical screening test shortly after turning 25. Getting an appointment was quite difficult because reality TV star Jade Goody, who had cervical cancer, was often in the news and cervical screening rates had increased as a result. The Jade Goody media coverage, though, had also encouraged Colleen to attend for screening.

After having her test, Colleen went on holiday and, on her return, was shocked to learn that she had severe cell changes and was advised to see her GP. Even though the practice nurse reassured her that CIN3 did not mean she had cancer, Colleen worried that it might turn out to be. She said she found it very helpful talking with the nurse, though, because she’d had CIN3 herself and was able to talk firsthand about it.

A colposcopy appointment on the National Health Service (NHS) would involve a long wait. Because Colleen and her parents were anxious about the results, they decided to pay for her to be treated privately. She had also recently been diagnosed with generalised anxiety disorder which, said Colleen, made her extremely worried about what could be wrong. The colposcopy results confirmed that she had CIN3 and, in a following appointment, Colleen had a cone biopsy under general anaesthetic.

Colleen said that she was more anxious about the general anaesthetic than anything else and would have liked more information about it. She was also concerned that treatment could affect her fertility and future pregnancies. Colleen advised women to take it easy after having surgery and not to rush around too much shortly afterwards, even though they may feel well.

 

Talking to the nurse helped because she’d had CIN3 herself. She could tell Colleen about the...

Talking to the nurse helped because she’d had CIN3 herself. She could tell Colleen about the...

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I spoke to the nurse at the GP’s surgery, who was amazing. I mean she really went above and beyond, because I was clearly quite distressed. And she told me about, she had quite a personal experience with CIN3 as well herself, and she didn’t have to tell me that. And it was so reassuring to speak to somebody who’d been through it and was kind of saying, “Look it sounds awful, but believe me, you know. This is the whole point of this process, so that we get it now. And so you don’t wait until you’ve got horrific symptoms, and we know it’s something terrible.”

So was it really reassuring to speak to not only a nurse, but somebody who’d actually had it?

I think yeah. The best thing that I had was speaking to somebody, a medical professional who had had CIN3. Because they could answer both your questions, they could answer the kind of practical and personal and kind of emotional questions that you have with it.

 

Colleen had a gut feeling something was wrong and was effected by Jade Goody’s story, which was...

Colleen had a gut feeling something was wrong and was effected by Jade Goody’s story, which was...

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I turned 25 in November 2008 and then I didn’t go for my smear test on my birthday, even though I got my letter. But it was my new year’s resolution, so I booked my smear test in the January. And then because obviously of the Jade Goody incident, it was quite hard to get an appointment. So I got an appointment for the first week of February and went for my smear test.

I was very scared initially because I was convinced I had something terrible. Even though I have had absolutely no symptoms whatsoever, and no really justified reason to think that. I just had a very bad feeling because of all the Jade Goody stuff. So then I went for my smear test and that was all absolutely fine. And then I went to India. And I kind of see this as a little bit of a dual thing, with the whole Jade Goody situation, that the day I got back from India, I had my letter from my doctors saying that I had severe dysplasia, and I needed to go back in.

So I’d been so panicked about it before I went on holiday. And I’d had this three week holiday and I’d just got back and I was just feeling better. And I found out that actually my gut feeling had been right. And so I had to go back into the doctors and as soon as I found out, it was literally 9 o’clock in the morning, my first day back at work. And I’d just got back into work and I had the call, and then I had to leave again to go straight back to the doctors. And I was really upset. Because I just didn’t know quite how bad it was going to be. And so my Mum came down, like a little girl. And she came with me.

And so the nurse then said that they wanted to get me in as soon as possible for a colposcopy. And she was kind of emphasising, you know, that it was not cancer, it’s severe dysplasia.

 

Colleen had never been in hospital before. The thought of having general anaesthetic frightened...

Colleen had never been in hospital before. The thought of having general anaesthetic frightened...

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They confirmed CIN3, and then I got booked in for a loop cone biopsy. And my biggest concern with that, because I’m a relatively healthy person. I’ve never, apart from being born, I’ve never been in hospital like. I’ve never even had things with my teeth or anything. I’ve had no symptoms. I’ve always played loads of sport, and I don’t really drink, I don’t smoke.

And so just the thought of having general anaesthetic, for me that was just like the most terrifying. I was more scared about the general anaesthetic than I was about the actual procedure. That kind of dominated everything. And I was really worried about that.

When I came round, I was pretty chipper. I am like the most dramatic person, but I was just like so relieved I was alive. It wasn’t the surgery that bothered me, it was the general anaesthetic. And I was so convinced that was how I was going to go. So convinced. So convinced. But then I was fine for the rest of the day, like I literally felt if I could’ve gone for a run, I felt so fine. But that probably would have been a bad idea because I probably only felt that way because they’d pumped me full of drips and stuff.

So you went for surgery, did you go by yourself, or was your mum…?

No, my mum came with me again. I don’t think I could’ve gone by myself; I would have been a mess. So yeah, she came with me for the surgery, which was quite good.

And you had the general anaesthetic, were you in for a few days, or just one?


No I was in and out in a day. I went in, I had to go in for 12, and I think I left at about 5. So it was really quick. And I had it on the Friday and I was back at work on the Monday.

 

Colleen bled after having sex. At the time of interview she felt too anxious to have it again in case she had further problems. Her boyfriend has been patient and understanding.

Colleen bled after having sex. At the time of interview she felt too anxious to have it again in case she had further problems. Her boyfriend has been patient and understanding.

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I had sex just over four weeks after my treatment, and I did maybe twice, and then obviously I had bleeding again. And I haven’t had sex again since then. And now I’m really scared because I don’t want it to get worse again. And so I’m kind of like, I don’t know, I’m just like, oh my poor boyfriend. But still I just, I’m really, really worried about it because I don’t want to kind of knock anything, or like make it bleed again. I don’t know if that’s bad for you, or if your body does just kind of like, it’s like getting a scratch anywhere else and then it just gets better.

And it just kind of makes it all a bit weird. It must be a bit weird for your boyfriend to kind of like, I don’t know. I think it didn’t really worry me so much straight after the surgery, but because I had that little bit of bleeding again, now I’m just like, “God.” I’m just going to wait and wait and wait as long as I possibly can, until my boyfriend’s walking out the door. And I’ll go, “Okay, okay, okay, we’ll see if it’s okay.”
 
Is there anything you would say to anybody who’s in the same situation now? Is there any message or advice for someone in the same situation? Because lots of people did say they worried about these things obviously.

I don’t know. I would really love to know if other people have had that kind of slight bleeding after their first time they had sex, and maybe that’s alright. Because my doctor was like, “Yeah it’s fine.”

But yeah. I don’t know. I just think some kind of, you know, it’s the stuff nobody likes to talk about. But like a slightly more informal fun version, which is like all the stuff after CIN3 treatment that you didn’t want to hear. It’s good to know actually that other people get a bit worried about that. It is a bit weird though and you’re just so paranoid that you’re going to make everything worse. It’s like they’ve done surgery there and you’re kind of like, “Oh, uhuh.”

Has your boyfriend been quite supportive? Or you’ve generally just got on with it and talked to female friends or….?

I feel really sorry for my boyfriend. Because he’s been so good about it, but so good I’m almost like, “What’s the matter? Why aren’t you trying something?” So I could say, “No I can’t. I’ve just had surgery.” But he’s been so good, and it’s kind of making me wonder, like “Why are you so fine about this?” But it’s just because he’s being very, very nice. And I’m sure it’s quite…

It’s funny because you kind of think that boys aren’t going to be bothered about that, but they’re not that heartless. They probably are concerned that you’ve just had massive treatment, and are you feeling alright and hope you get better. But in your head as a girl I think you’re like, “Oh my God, we can’t have sex for six weeks, they’re going to leave me.” But no, he’s been pretty good.

I think it’s kind of weird for him as well just because, I guess he asked me questions that I can’t really answer. But I think he’s had like a whirlwind lesson in female anatomy and all of the things that can go wrong.

 

Colleen persuaded her flatmates to go for cervical screening. She feels that, had she been...

Colleen persuaded her flatmates to go for cervical screening. She feels that, had she been...

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I live with girls who are 26 and they haven’t been for their smear tests yet. They have now. Because I’ve been quite militant with them that we should all go. And I think the problem in terms of educating young people, I know it’s hard to get 25, 26, 27 year olds to go for their smear tests, but I think that’s because you don’t realise what happens afterwards if you haven’t gone, is a helluva lot worse than if you had just gone.

Say if I’d gone when I was like 22 or 23, I don’t know, and it had been CIN1, and then it had been able to be watched from an early stage, I think that would be a lot less worse than suddenly being told, you know, you’ve got severe dysplasia. It could be really bad in 12 months, we’re going to have to put you in surgery in the next 4 days. I think that’s really scary. I would say I’m a reasonably bright person, and I seek out that kind of information, I have to for my job. And I do just generally, and I had no idea what happens with the results. I knew what happened in the screening process, but I didn’t know what happened if you had a bad result. So I think if I’d have known that, I would have been more inclined to go earlier.

 

Colleen had never been in hospital before and was frightened of having a general anaesthetic. She...

Colleen had never been in hospital before and was frightened of having a general anaesthetic. She...

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The doctors and everything were all really good. I did find that I got a lot of information about the process but, like I say, general anaesthetic, I didn’t get any information on at all. And I think, especially if you’re 25, 26, 27, 28, 29, 30 or whatever, you probably haven’t been in hospital. You probably haven’t had anything wrong with you, and you probably haven’t had general anaesthetic before. And so maybe a little bit of extra information on like the risks of that, because again if you go on the internet it’s like, I think I found some terrible statistics about the, you know, whatever 4 in every million people die on the table. Which doesn’t sound that many, but to me I thought, you know, could have been.

I was convinced I was going to have a heart attack and die under the general anaesthetic so, for me, the pain I was kind of convinced was something I could take. In the end it was kind of like my parents sort of talked me round. But I literally just didn’t even think about the surgery. I was like, “Yeah, whatever, you’re going to cut it out, you know.” It was the general anaesthetic.

 

Colleen found a lot of frightening information on the internet and would have liked to have been...

Colleen found a lot of frightening information on the internet and would have liked to have been...

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I think having recommended websites on the information would be amazing because it’s just naive to think that people aren’t going to go and search out information their selves. Like nowadays I would think the first thing anybody would do is go home and they’ll start Googling it.

And to make sure that people are going to the right places, rather than the scary places on the internet. And that’s the other thing, like I mean I mentioned two websites I found useful, like Jo’s Trust and Cancer UK, and I have spent weeks on the internet looking up CIN3, and they’re the two positive ones that come to mind.

So I mean I think, you know, to have a list of sort of like, a fair wad of useful websites. And, like I say, not just necessarily on CIN3, but also on things like general anaesthetic, like all of the things that you’re going to have. And, you know, being in hospital. I’d never been in hospital before. And that was really scary. I think I was the youngest person in my hospital by about 100 years, so just all information on everything. Just as much as you give people to read, to stop them looking in the wrong places, which they will find if you go on the internet for more than ten minutes.

 

Friends or colleagues often talk to Colleen if they’ve had abnormal results or been diagnosed...

Friends or colleagues often talk to Colleen if they’ve had abnormal results or been diagnosed...

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I kind of had become like a mini go-to girl at the minute for all of my friends, and all of their friends at work who are kind of getting it [CIN]. So one of my friends at work who I e-mailed the other day, and she was like, “A girl in my office has just been diagnosed with severe dysplasia. Can you talk to her?” I was like, “Yes, I think so.”

And she was like, she had that same kind of, she’d just found out, that initial panic. And I was like, “I’ve just had my surgery, don’t worry. Honestly, they’ll get you in and out really quickly, and they’ll fix it.” And I was like, “I know it’s really scary and…”

And one of my other friends as well, who lives in Cheltenham, she’s had it as well. She was kind of more my go-to girl. She was like, “You’ll be fine.” Because she didn’t have it with general anaesthetic, she had it under local and so she was kind of telling me about the smoking loins, about how you see all kinds of smoke, which is a bit weird.

And then I did have a friend in Manchester, who got an infection after her treatment, and so she was really quite ill in hospital. So that was quite scary as well. But one of my housemate’s friends at work, she spoke to me as well because she’d just been diagnosed. She’s a bit older, though. She’s about 30.

And so I think as soon as people find out you’ve had it, it turns out that actually, and even just like my housemates going for a smear test because they’re like, well one of my housemates, she’s a year older than me, she’s 26 and she was kind of like, “Oh God, I don’t want to go for my smear test.” And I was kind of like “You have to go for your smear test, okay. It’s the best thing you can do.” And so yeah, it has become a massive topic of conversation recently.

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