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Emma - Interview 10

Age at interview: 29
Age at diagnosis: 28
Brief Outline: Emma was diagnosed with CIN3 in 2008, aged 27, and treated by LLETZ under general anaesthetic. She found waiting for treatment extremely stressful and found the Jo's Trust website helpful and supportive.
Background: Emma is an engaged full-time mother Ethnic background / nationality' White British

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Emma had had gynaecological problems since around the age of thirteen or fourteen, including endometriosis. After having her second child, the problems restarted and she also began having stomach pains, bleeding after sex, and pain during and after sex. She visited her GP, who insisted she have a cervical screening test. She had ignored several screening test invitations and said she hadn’t had a smear test for seven years.

 

Emma said she received a letter from the hospital before getting one from her GP and, when she phoned the nurse, was told that her results showed severe abnormalities. Her appointment at the colposcopy clinic was four weeks later and she found waiting for the appointment, not knowing what was wrong, a very difficult time.

 

Emma felt scared when she looked on the internet for more information. Her mother came across a site called Jo’s Cervical Cancer Trust – a site that Emma said she found extremely helpful, both in terms of the information it contained and the forum (www.jotrust.co.uk).

 

At her colposcopy appointment, Emma was told that she could not be treated there and then because she needed to be treated under general anaesthetic. Her next appointment was booked four weeks later and, again, Emma found the ‘waiting game’ stressful. She felt that her colposcopy appointment had been rushed and she had not been given time to ask any questions. She later rang the nurse for more information. Emma’s main concern was that she could have cancer but would only know after treatment.

 

Emma had a LLETZ under general anaesthetic, as well as a laparoscopy, and said that, afterwards, when told the CIN3 had all been removed, she cried with ‘sheer relief’. She also asked to speak to the consultant afterwards and was shocked to hear that he had not been worried about finding cervical cancer as this was very unlikely. This came as a shock to her and her mother, both of whom had been extremely worried about the possibility – information Emma said they had not been given before.

 

Emma said her results letter confirmed that all the CIN3 had been removed and a HPV test showed that she did not have HPV. She felt that the emotional impact of having CIN3 was more difficult to deal with than the physical. Her family were very supportive, as was the Jo’s Cervical Cancer Trust website, where Emma said she got most her information from (www.jotrust.co.uk). She said she would have liked more information from health professionals as well as more empathy towards the emotional effects of CIN3.

 

Emma felt lucky to have received different kinds of support from her partner, her mum and the...

Emma felt lucky to have received different kinds of support from her partner, her mum and the...

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I was getting the silly support from my partner, which I needed. I was getting the sensible from my mum, which I needed and, you know, what have you. And I was getting the mind filled with information from all the Jo’s girls, so you know I had little bits everywhere of different types of support for, depending on how I was feeling that day. You know, so I was really lucky in a way, so I don’t, I couldn’t have got by without all that support.

Was there any practical support that you found helpful, like people looking after the kids or maybe cooking a meal or whatever, that kind of thing?

Oh yeah, [name] my other half, is well trained really, so he did it. He took over a lot of like the cooking and looking after the kids and my mum’d come and check on him and make sure he was alright and you know.

The house did go to a complete schmozzle for a couple of days. But, to be honest, I didn’t care. But he was juggling three children which he’s not used to, he’s you know, he’s a working man and he’s not used to looking after the children. That’s my job, you know, and he did do a good job.

And it was only a few days before I was up and about and back to normal, if that, you know. I did take a longer period of time to recover than if you had the LLETZ under a local. I mean they say if you have LLETZ under a local you can go back to work the next day. But because I’d had a general anaesthetic it takes up to five days for that to come out of your system. So it was actually that that was making me feel ill, not the LLETZ itself. So, but yeah, after a few days everything was back to normal and back to juggling.

 

Emma urges women to go for cervical screening when invited. The test only takes a few minutes and...

Emma urges women to go for cervical screening when invited. The test only takes a few minutes and...

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I would say don’t ever miss your smears. It’s two minutes, if that, out of your entire life, and to not have to go through what myself and so many other women, you know, I’m not alone and there are thousands of other women in the same boat as me.

But if you get checked like you should do every three years, then things won’t progress so far. You may not have to have treatment. You might be all clear. You know, what’s two minutes?

 

Emma didn’t know what to expect and recommended wearing a skirt for colposcopy. Her doctor couldn...

Emma didn’t know what to expect and recommended wearing a skirt for colposcopy. Her doctor couldn...

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So after four weeks I went for my colposcopy, and obviously because I didn’t have the information about what the colposcopy was really, and what they were going to do. So I think it was more the worry of what’s there and what was going to happen. Went for the colposcopy, met the consultant and, as soon as I walked in, the first thing he said to me was, “You do realise it’s severe don’t you?” So that filled me with ‘great’, yeah.

So, went through – wear a skirt – went through to the room where they do the colposcopy. And basically, to be honest, it looks very scary but it’s basically a smear. But they just use a camera to take a closer look. And you have, I had the choice of whether to look on the screen, at what was or wasn’t there, and I did look because I wanted to know what was in there basically.

In a way it was good because I knew what was there, but in a way I wish I hadn’t because of the severity of the abnormalities that I had, but it did comfort me a little bit to know, “Right, that’s what I’m dealing with.” And what do we do from here? Usually most of the time they do, “See and Treat.” And because my cervix, the whole of my cervix was covered in abnormalities, my consultant decided that he couldn’t treat it there because it would be too painful for me and just too stressful. And plus he wouldn’t have been able to get to where he needed to get to.

He turned round to the nurse and said, “You need to book her in under a general. I can’t do anything now.” And then he toddled off and then I was left with the nurse and she dealt with the booking of the appointment

 

Waiting for colposcopy and treatment and the emotional side of CIN3 had a huge impact on Emma....

Waiting for colposcopy and treatment and the emotional side of CIN3 had a huge impact on Emma....

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It does change your outlook on everything, you know. I look at my kids differently now, and I look at my family differently now and then. I don’t think health professionals and some people realise the emotional effect it has on a woman. And to be honest I think the emotional effect it has on a woman is more than the physical effects it has on a woman….

But it does make you see things differently and I remember, I think it was about a couple of days after I got my results, I just burst into tears in bed one night for about an hour and a half, just everything all of a sudden just hit me. And now this has, you know, I want to move on with my life and there’s so many things that I want to do now that I wouldn’t have even thought of before. And I know I haven’t got cancer, but the thought of even thinking that you might do makes you see things differently.

I want to do more stuff with my kids. I want to move. I want to because I have, I was actually in the middle of doing an honours, a BA honours when I found out, and I just simply couldn’t concentrate on it. So I’ve had to stop doing that, I want to take that back up again. You know just, oh there’s a list of things that I want to do and I am going to do them.

But you know, it’s just, it is very emotional and that is the main part of it. The waiting and the emotional side of it is the worst part, not the CIN, not the treatments. Not anything, you know, it’s all about the emotional side of it.

 

Emma recovered well after having LLETZ under general anaesthetic. She was advised about the do’s...

Emma recovered well after having LLETZ under general anaesthetic. She was advised about the do’s...

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It took me about a week, and the general to get out of my system. And I spent about two or three days in bed, children running around, but there was people here and helping and I didn’t have any problems with the LLETZ itself, not at all, just bloating really and that was about it. No discomfort and no pain. So I’d quite happily have it done again. But no, nothing. I mean a lot of women get infections after LLETZ but luckily I didn’t.

But no, everything was pretty smooth and good. So I then sat and waited for the results and I got my results last week, which came back, “All Clear,” clear margins, which I was delighted, because there’s always a chance that you don’t get clear margins and that you have to have the treatment again, and stuff like that. So, you know, for it to come back clear and with clear margins, and just to look at that letter and “No cancer present.”

Did they give you any advice like, “Don’t do this afterwards….”?

No heavy lifting for a few weeks, or until the bleeding has eased. But yeah, no heavy lifting, no vigorous exercise, no relations. No relations for up to six weeks afterwards, or until you stop bleeding because I mean they do say four to six weeks, but the bleeding I know can go on for weeks and weeks and weeks and weeks. I mean I’ve known, I know some women that it’s gone on for three months, nine weeks you know, however long, mine only lasted three weeks.

And was it heavy or…?

No, it’s just more of, it’s not a bleeding, it’s more of like a discharge if… it sounds horrible, too much information. But it’s more of a discharge than bleeding as such. I think straight after I’d had it done, probably for a few hours after it was, what I’d call bleeding. After that it was more of a discharge that had blood in it, if you understand what I mean, and it sort of changed between, obviously as time wore on it would go from more of a red to brown and then it basically just eased off.

 

If Emma and her mum had known before surgery that she’d had no chance of having cancer, they...

If Emma and her mum had known before surgery that she’d had no chance of having cancer, they...

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They took me back onto the ward and I stayed there for a few hours because I had to wait for the consultant to come round. And I did ask the nurses a few times what they’d done or what he’d done and things like that but they didn’t know and they couldn’t tell me. So I spent another few hours thinking, “Oh what’s he done? Has he done…?” you know.

Eventually they ended up having to bleep him and he had to come down and see me. And this is the one thing that annoyed me was, he came down. I find consultants, some consultants, very grandiose and above their stations and, to be honest, but he’s one of those and he sort of flitted in and I asked him, “I’d, you know, I just want to know what you’ve done?” He said, “Oh don’t worry, it’s all been removed.” Very, very blasé and, “Did I not tell you that it wasn’t cancer to start off with?”

And my mum, I remember my mum’s face just sort of dropped as if to say, “How? No. Because do you honestly think that we’d have gone through all of this.” And it was only actually when I got my results that we found out that he was actually a specialist, an oncologist, a gynaecological oncologist. Which we weren’t very amused about. And, you know, nobody ever turned round and said to me, not him, not the nurses, not anybody turned around and said, “It’s not cancer. We definitely don’t think it’s not cancer, or we don’t think it is.” None of them, because there’s no way that we would have worried like we did if we’d have known that.
 
So I think that annoyed us a lot, you know, just that little bit of information that he could’ve given us, that he didn’t, could’ve made all the difference in a way.

 

Emma wishes she’d been told about the Jo’s Cervical Cancer Trust website sooner. She has...

Emma wishes she’d been told about the Jo’s Cervical Cancer Trust website sooner. She has...

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If I’d gone to my GP or the consultant, or the nurse at the colposcopy, if they’d have turned around to me and said, “Hang on a minute, there’s this place called Jo’s Trust”, it would’ve been absolutely fabulous. But they don’t. And they don’t give you any information but I think at either colposcopy or prior to that, Jo’s Cervical Cancer Trust (www.jotrust.co.uk)  does need to be mentioned because they’ve been a lifeline for me. I just think they’re wonderful. And everyone that I’ve spoken to, I mean, I don’t think anyone I know doesn’t know about Jo’s Cervical Cancer Trust anymore. But I even said to my GP, “If anybody comes in having the same thing as me, please refer them to Jo’s Cervical Cancer Trust.” But then I shouldn’t have to tell my GP that, it should be out there anyway.

 

Emma found the emotional effects of having CIN3 were harder to deal with than the physical. More...

Emma found the emotional effects of having CIN3 were harder to deal with than the physical. More...

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I don’t think health professionals and some people realise the emotional effect it has on a woman. And to be honest I think the emotional effect it has on a woman is more than the physical effects it has on a woman. You know, we’re not given all the information. We’re not made to feel at ease. We’re quite, on a few occasions you’re made to feel stupid for even worrying about it. And I know I’m not the only one in that, I know there’s lots of other girls, ladies on Jo’s [Jo’s Cervical Cancer Trust -www.jotrust.co.uk] that’ll tell you exactly the same thing.

It is very emotional and that is the main part of it. The waiting and the emotional side of it is the worst part, not the CIN, not the treatments. Not anything, you know, it’s all about the emotional side of it. It’s the way it’s handled. And it’s not handled brilliantly and it could be handled so much better, you know. They need more information out there. You need more sympathy, and you need to be more understanding of what a woman actually goes through when she finds this out. And it does need looking into a lot more I think, about the emotional side of everything. And not just sort of, you’re not, I felt like I was a cervix, not a person, if you know, that’s the only way I can describe it. You know, I was a cervix. They were treating the cervix and that was that. I’m not, they weren’t treating the person at all. You know, it was the cervix and that’s it.

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