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Kim - Interview 37

Age at interview: 34
Age at diagnosis: 33
Brief Outline: Kim had a knife cone biopsy in 2008 to remove three areas of abnormal cells; CIN2, CIN3 and CGIN. Her recent colposcopy examination showed no abnormal cells.
Background: Kim works in IT. She is married with no children. Ethnic background/nationality' White British.

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In December 2006, Kim had a smear test result which showed mild abnormalities. She was asked to return for a repeat smear test in six month’s time, which was all clear. Six month’s later when she attended for another smear test, her result this time showed severe abnormalities. She was referred for a colposcopy examination which identified three areas in her cervix that had abnormal changes; one area of CIN2, one area of CIN3 and one area of high grade CGIN. In February 2008 she had a knife cone biopsy under general anaesthetic to remove the abnormal cells. When she had her follow up check at the colposcopy in April, everything was clear.
 
Kim had always found smear tests painful in the past, which had led her to delay having them done on time. Now she encourages her friends and other women to go for screening and to make sure they are up to date with their smears.
 

Kim was concerned about her abnormal test result but talking to the nurse at her GP practice...

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The first result I got was the slight abnormalities one. It was a shock, I didn’t really know what to think when I got the results. It kind of threw me for six, for a little while. I got the results the day before our work Christmas party and I was kind of humming and hahing about going anyway. And I kind of got the letter the day before, and I was just, that’s it, I am not going out celebrating. If I go out, I am just going to have far too much to drink and make an absolute fool of myself.
 
I was lucky because when I got that letter, I mean it said, “We’ll call you back for a retest in six months.” And that is all it said. But I had already got an appointment booked with my nurse, and I went to see her and talked it through and said, “Well why six months? Why can’t I have the, you know, the repeat smear earlier. And she did explain about most people who have minor abnormities, after six months your body expels the virus, it fights it. It is all gone. And that is in effect what did happen to me. I mean I went back for my recall and it was perfectly all right. So she helped put my mind at rest, because I was a little nervous about it. And I must admit my nurse is really good to talk to about things like that, she explains things really well. If I haven’t had had that appointment, I probably would have panicked a bit more. But having had that discussion with her, it helped put my mind at rest and then I pretty much forgot about it, until I had to go back six months later.  
 

Kim describes her experience of colposcopy.

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The colposcopy itself was not pleasant. I just read up on the internet before going, as you do. And most of the website said, “You’ll feel slight discomfort. If they take biopsies, it might hurt a little bit. It will be like a quick scratch.” But I found the whole experience really quite unpleasant. But then again I have never had a nice smear test either. I think I am just very sensitive. Because even when I have a smear it hurts substantially more than most people I know.
 
The colposcopy itself took about 25 minutes. So it felt like a long time. And kind of being in the room with just the doctor and nurse, it felt strange. And I have never actually, when I have had my smear test before I have never actually had the bed with the stirrups. So walking into the room, and seeing this contraption. It was just like how on earth am I meant to even get on that thing. So yes, that was interesting. I did find it quite painful. That is not to say that everyone will. I think I am just the exception to the rule.
 
I had three punch biopsies taken and they hurt a lot more than I was expecting. The consultant said, “Oh you will feel a little scratch. You will feel a little ripping or whatever.” And it felt like he was taking a huge chunk of my cervix away and it is actually like just a tiny little piece. He took the three punch biopsies. Colposcopy lasted about 25 minutes. 
 
After the procedure he saw me straight away again, to tell me what he had found. And he had found three areas of abnormalities where he had taken the punch biopsies. Two of them quite close together, one a bit higher up. And he said he was obviously going to send off for further analysis and get the results back in about two weeks time. From what I’d read on the internet I was expecting to bleed after the colposcopy. It said about two to three days and in fact I probably bled for about a week afterwards. Which again, I think, is different from the norm, most people don’t. I also had really, really bad period type pains for about two to three days afterwards. They were really, really bad the day after the procedure and lessened off after a couple of days. The day after, I couldn’t go into work. I was, you know, kind of in bed, clutching a hot water bottle to my stomach, going, ‘oh this is not very nice.’ I again wasn’t really expecting that.
 
And as well I am on the Depo jab, so I don’t actually have periods any more, I haven’t done for about eight years. So I had forgotten what period pains are like. And by God, I am really glad I am on the Depo. I don’t think I could cope with that once a month, and so, yes, after about a week I stopped bleeding. It gradually tails off. It wasn’t particularly heavy, but it was just annoying. Then a week after I had my colposcopy, I got a phone call from the consultant, who said that he had got the results back and he wanted to see me that evening. Oh, actually I think he phoned me on the Friday and said, come and see me on the Monday.  
 

Jo’s Cervical Cancer Trust was Kim’s lifeline during investigations and treatment. She advises...

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So NHS Direct was quite good. I think by far the most for me, from a personal point of view was Jo’s Cervical Cancer Trust. Mainly because of the forums, you could chat [laughs] to people who were going through the same thing, and you got a more personal impression of what was happening, and how other people were coping with it and what they were going through, which was very helpful. I think Jo’s Trust was pretty much my life line while I was going through all of this.
 
Don’t keep things bottled up. I am a really bad one for keeping my feelings bottled up and I learnt the hard way that it is not a good thing to do. So finding someone that you can talk to, really, really helps. Even if it’s an internet forum. It doesn’t have to be face to face. Sometimes, some people find it easier to unburden themselves anonymously. But I think it’s important to not be scared, not keep your feelings bottled up. Talk to people about it, because I am the first one of my friends to go through this. But I’m sure that most people have got friends who have already been through this and they won’t know until they ask. And I know it’s a difficult thing to ask, “Hey everyone, I’ve got an abnormal smear. Have you had one?” But, there are ways to kind of introduce it into a conversation, yes. I think, but for most women they will have friends who have already been through this.
 
 

Kim had a cone biopsy because she had abnormal cervical cells which were graded CIN3 and CGIN.

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The consultant I initially saw, really just did colposcopy, but he didn’t do anything after that. So I was referred to another consultant, who said, that the biopsies had come back with one area of CIN2, one area of CIN3, and one area of CGIN, and mainly because of the CIN3 and CGIN, which was a high grade CGIN, they were going to do a cone biopsy as opposed to an LLETZ because they had to make sure that they had got rid of everything. CGIN is a little bit more severe, if you will, because it changes, it’s higher up the cervix and it is potentially glandular changes, not just changes in the skin layer. So we talked about that.
The consultant that I went to see was actually really good, in terms of sitting with me and explaining things, explaining about the procedure. He didn’t rush me, which was good. Because even when I went in and got the results, I was expecting CIN3 because the smear said that it was severe changes. But I’d never heard of CGIN before. So he took the time to explain it to me. Took the time to explain the procedure. What the potential side effects were. How long I would probably have to stay off work. That I would be under a general anaesthetic. And yes, he was good. I had the cone biopsy about three weeks after I got my biopsy results back. Mainly because the consultant went on holiday. Jammy git. So there was a bit of a wait. I would have preferred it, if I hadn’t have had the wait. Because I think the wait increases your anxiety, even though it gives you time to, kind of, do a bit more research yourself and ask more questions. I think sometimes it is better to get things over and done with rather than mulling over them.
 
 
 

Kim describes her cone biopsy under general anaesthetic and her recovery at home afterwards.

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I went into [the local hospital] at I think 9 o’clock on a Monday morning and I was told I wasn’t allowed to eat from midnight onwards. So it wasn’t too bad. I was wheeled into surgery about 11ish. Was knocked out, which is quite nice, I like being knocked out [laughs]. It’s quite a pleasant experience in a way. You just kind go all woozy and you then wake at an indeterminant period of time period of time later.
 
Yes, that was fine. I was under for a lot longer then I thought I would be. I think, I was probably back in my room about half twelve, so I was actually under for a good hour, because I was only in the recovery area for about ten, fifteen minutes. I felt very groggy afterwards, I think mainly because I had been under for a lot longer then I had ever been before. When I had surgery about a year ago, it was only about ten, fifteen minutes. So when I came to, I was very, very chatty then, and I do remember this time, I was just lying there going, “Oh my God.” I didn’t feel in pain or anything, because I was on a drip with, with painkillers, and I just felt very, very groggy. I also I think was probably affected slightly more because I have low blood pressure, and during the surgery my blood pressure had got even lower. So I think that made me feel a lot more groggy.
 
I was discharged about five o’clock. Would have been earlier, but I had lunch and then decided to go to the toilet and fainted [laughs]. I know for next time that I should go to the toilet before I eat [laughs]. Because the nurse said, “Because you have not eaten for so long, when you eat all your blood just rushes to your stomach to digest the food.” And I didn’t think. And I was thinking, ‘Oh, you know, I was feeling a little bit more corpus mentus’. Had a bit to eat, feeling a bit more, you know, in tune with what’s going on. I kind of got up and keeled over, and again that is to do with the low pressure as well, I think, they are all connected.
 
I was in some discomfort when I got home. With very thick sanitary towels [laughs]. I was walking like John Wayne for several days afterwards. That discomfort, I wouldn’t say it was, really pain pain. It was more just general discomfort. I think I suffered more from the after effects of the anaesthetic, then actual any pain from the procedure. I didn’t seem to have the same stomach cramps that I had after the colposcopy. Although it might just be that they gave me better painkillers and I didn’t really take any painkillers after the colposcopy. I just kind of grinned and beared it.
 
I was off work for about two weeks. I didn’t feel kind of back to normal per se, until probably the Friday after the procedure and again I think that was just the anaesthetic wearing its way out of my system. I found at first I couldn’t really move around a lot, without feeling very tired, very quickly. So I spent most of the first week, just on the sofa reading, and not really doing much, which I actually think is a good thing, because I think it actually helps to speed up the healing process. It’s very difficult, but I think generally people say, just sit down and relax. Try not to move around too much, because if you move around, you tend to bleed more. And that was very true I found. Although again, I bled for about three weeks after the procedure. The last week was mainly kind of very light spotting. But it was about three, to three and a half weeks before I could feel that I couldn’t wear any sanitary protection.
A week after the procedure, I got a phone call from [the local hospital] saying that they had got the results from the knife cone biopsy. I made an appointment to go to see the consultant for the results. They actually got the results a lot quicker then they thought they would do. I was booked in to see the consultant, two weeks after the procedure. I got the phone call less than a week, telling me to go back in.

I was totally convinced that something horrible had gone wrong. You know they had found all kinds of horrible things, but, you know, I got the all clear, which was just a huge relief. Words can’t describe how relieved I was afterwards. It felt like a weight had been lifted. That I felt, just alive again, in a sense. Just, willing, all of a sudden, I was just like, you know, I have had this little brush, but now it is over and done with. Fantastic. So yes, I got the all clear. Had a check-up in April, about two months after the procedure, which was another colposcopy. This one was really quick. It lasted about five minutes. They didn’t take a smear or anything, because I am still healing, but they did paint the iodine and the ascetic acid and again there is no signs of any abnormalities returning, which is really good. But now, similar to the smear recall programme I have to go back every six months for two years for a further colposcopy. And then after that probably yearly, may be every couple of years. So although I have been given the all clear, they do keep an eye on you, which is really assuring actually. The chances of recurrence I think they said, one in ten, and that is with CGIN a slightly higher chance of the CGIN recurring. But hopefully not. If it does recur then apparently depending on where it is, I have still got enough viable cervix left so they can just do another cone biopsy and not have to do anything more invasive.
 
 

Kim talks about her emotions about having sex again with her husband after a cone biopsy.

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The sex bit was, not so much the harder part, abstaining for five weeks wasn’t really a problem, the problem was getting over the whole emotional thing of having this operation and letting someone, my husband, be close to me again. Because there was always that little thing in the back of your mind. For me it was like, what if he is the one that gave me HPV. It is highly unlikely, but what if he is, and what if I get it again or. There is so many things going through your mind. It’s the physical, you can’t see the physical scars, you can’t see the emotional scars, but I think it’s more emotional than physical a lot of this.
 
I felt very apprehensive about it. I don’t know whether it was because, like I said before, I was worried about maybe being infected with HPV which was highly unlikely. But I think it’s because you can’t see what’s happening. And, you know, they kind of say, “well wait five weeks and you should be fine.” But you can’t see that you’re healing. Okay the bleeding might have stopped but that doesn’t mean to say that you’ve healed. And I was certainly more concerned with the bleeding starting again, because I just found it a pain. I’ve not had a period for eight years, and suddenly I was bleeding and I had forgotten how messy it was. And I felt a little distant from him as well, at first.
 
And did it feel any different physically after?
 
No, probably not. The first couple of times [laughs] I expected, I did expect to bleed afterwards. I don’t know why, I just did. So there was a mad rush to the toilet just in case. But it was fine. Nothing like that happened. So, no, it didn’t feel any different. In fact it felt closer, I think in a way, maybe because we had had to wait for the five weeks after the procedure and then until I was ready. So I think the first few times it did feel a lot more intimate and a lot closer.
 

Kim felt frightened, worried and had days when she felt down during investigations and treatment...

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What were the main emotions that you had?

 

There was a lot of fear. You know at the back of your mind that they are probably not going to find any major, but there is always the what if? There was a lot of anxiety, as well, which I think, it is naturally coupled with the fear. And generally a feeling of just being down a lot of the time. Just not really feeling like yourself I think is the best way to describe it. Because you have got these thoughts niggling at the back of your mind and they won’t go away, until, you know, because you need the closure. And you can’t have the closure until you have had the procedure and got the results. So there is the anxiety, there is lots and lots, I think. It’s really hard to describe a lot of them, because I think, again, it is very personal, like some people they will be fine, and they won’t worry about. They’ll just carry on, and like I said before, I was a bit mixed. I had days when I was absolutely fine and days when I wasn’t. There is also, not knowing, you are going into something totally new to a certain extent, which is why with my friends I am more than happy to talk to them about it, so that they have got someone’s experience to take them forward to kind of let them know what they can potentially expect. And I think that helps, because when I did it, I had people I could talk to on internet forums, but it is not quite the same as having a face to face discussion.  
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