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Cervical abnormalities: CIN3 and CGIN

Sources of support

The women we interviewed received support from various sources, including family, friends, their partner, health professionals and, sometimes, colleagues. Many valued having someone to talk to about their concerns or fears or to help with practical matters, such as childcare. Having someone with them at appointments or finding information for them was also considered helpful. For some women, the consultant, GP or a nurse had been supportive emotionally and in terms of giving them helpful information.

 

Susan, a nurse, coped well and appreciated the support she got from her partner. She knew where...

Susan, a nurse, coped well and appreciated the support she got from her partner. She knew where...

Age at interview: 31
Sex: Female
Age at diagnosis: 25
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I think I felt quite supported by my partner. We talked about what had happened, and laughed and joked about it, as we do. That’s very much how we deal with life. But I did feel supported, and I knew that if I wanted to talk to my colleagues at work they would be very, very supportive. And my family would’ve been. They were only a call away, so I knew that I had all the resources there. I also knew that I could tap into any counselling I needed too, from health clinics or via work. But at the time I was, I felt I was coping quite well, so I didn’t need to do that.

 

Rachel’s parents helped look after her two young children when she was recovering after a...

Rachel’s parents helped look after her two young children when she was recovering after a...

Age at interview: 36
Sex: Female
Age at diagnosis: 35
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I got lots of help because I’d got a little girl who was just turned two and still in nappies. And I just thought I’m not going to be able to cope. I can’t lift her, I can’t do anything. And I was very lucky that I had the support of my family because I stayed with my parents for two weeks. And then I went home after that because I couldn’t do anything for myself. But I got help, you know, with things like changing nappies, with you know, I had somebody with me, constantly being able to help me when I needed.

While family and friends provided invaluable support, many women also needed support from others who were going through the same thing. Many of the women we interviewed praised the support they’d received from the Jo’s Cervical Cancer Trust website, a site dedicated to women, their families and friends affected by cervical cancer and cervical abnormalities. Most wished they’d been told about it sooner, for example in the information sent with their cervical screening results letter. Some women found Jo’s Cervical Cancer Trust ‘a life-line’ during a very difficult time. Talking to others who were going through something similar showed them that they weren’t alone and that their feelings were normal and acceptable. They were comforted that other women on the website understood what they were going through and, even when they had slight worries, advice was given in a non-judgemental way. Some also found it helpful in terms of information about treatments and the emotional effects of CIN3 or CGIN.

 

Sam found the Jo’s Cervical Cancer Trust website brilliant because of the information and support...

Sam found the Jo’s Cervical Cancer Trust website brilliant because of the information and support...

Age at interview: 22
Sex: Female
Age at diagnosis: 22
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It [Jo’s Cervical Cancer Trust website www.jotrust.co.uk] was brilliant. Absolutely brilliant because they’ve got a board where it’s got just all the information on from the earliest CIN1 to actual cervical cancer. And it’s got, it’s really good information. It’s nothing scary. So it will tell you what CIN3 is, how they treat the different types of treatment. What the treatments are, how you’ll be afterwards. It’s just got everything. And I’m in touch with the girls yourself, it’s like you’re actually talking to someone that actually, just finally knows what you’re going through.

It’s been a life saver. I’ve been up in the middle of the night and you’ll go on, and you can guarantee there’ll be someone on there, up in the middle of the night as well, stressing, so you can help each other.

But it’s good to go through it with someone. I know it’s horrible because I don’t wish it upon anyone, but you don’t feel so alone. Because I think over the past year and a half, before I found Jo’s, I think I did, I just felt like, am I sort of making this worse in my head? Am I exaggerating? Am I a bit of a hypochondriac? Do you know what I mean? Because, you know, I didn’t know how to react and I just felt so on my own. Even the doctors were, “Oh it’s nothing to worry about.” See what I mean. Yet you do, you worry so much about it, it’s unreal.

And that’s, I think that’s the worst bit about going through it. It’s not nice going for colposcopies, smears and treatment and stuff like that, but I’d rather do all that every week than have six months of worrying. Because that’s the worst part, is the waiting. The waiting does sort of eat you up sort of thing, just waiting and not knowing. When you finally do know it’s that, “Oh, thank God.”

You never felt belittled, as if, “oh,” I’ve got a right, I’ve got a question to ask about what colour the discharge sort of thing is, do you know what I mean? And you don’t feel nervous about asking them or, “Is it normal for my discharge to be this colour after treatment?” “Oh yeah, that’s fine,” or, “Oh no, maybe you ought to check it out with the doctor or something.” You never feel nervous or anything to ask any question.

And I think that’s what I liked about it. No matter how much or how little you’re going through, so some girls on there with CIN1, you was all the same no matter what. And there was some that were going through or had beaten cancer, cervical cancer. And no matter what, they’d not go, “What you moaning about, you’ve only got CIN1?” It’s not like that at all, no matter what, you can go on there and you’ll find some advice from someone that’s probably going through the same. So that’s what I liked about it.

 

The information on Jo’s Cervical Cancer Trust was good but what Michelle really valued was the...

The information on Jo’s Cervical Cancer Trust was good but what Michelle really valued was the...

Age at interview: 31
Sex: Female
Age at diagnosis: 30
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Jo’s Cervical Cancer Trust www.jotrust.co.uk gave a lot of information that was really factual. But it also had a forum on there where women have been through all the stages of CIN but also the stages of cancer. So they’re very, I think most people that go on Jo’s Cervical Cancer Trust are extremely well prepared in terms of giving people information on what they’re going to go through i.e. the colposcopy, the biopsies and that side of it, because they’ve been through it before.

They can tell you whether it’s going to be painful, or whether it’s going to be quick, or whether it’s going to, and how long the results might take. So from a perspective of having somebody else that, you know, feels like they’ve been through it with you, that is very, very useful. And I found that, I mean at that point in time I was logging on, you know, a few times a day. And I still now, after nine months, go on daily to check if I can help other people on there as well.

And on, when you went on there, what was really helpful? You know, when you went on Jo’s Cervical Cancer Trust, did you have any questions yourself, or were you looking out for anything that you thought, “Oh I’ve had a problem with this, let’s see what other women say?”

Well, I found the information on describing where we were in terms of the staging for what we had. I found that very useful. But what I found most useful was the forum because you’re actually talking to people who have been through it, and they can offer you information. I mean information’s great, like when you went for my colposcopy; the most you get is a sheet of information that tells you about what you’re going to go through and what will happen with the results.

But, you know, a black and white piece of paper doesn’t really have any depth to it. And it doesn’t really have any, you know you could be one of what, you know one of ten people or one of a million people going through it, and you do feel quite alone. So a forum where you’ve actually got live interaction with people who can answer your questions, and who can say, “Actually I’ve been through this, but my results have come back and I’m fine.” That’s very helpful.

 

Melanie wishes she’d been told about Jo’s Cervical Cancer Trust website before colposcopy. She...

Melanie wishes she’d been told about Jo’s Cervical Cancer Trust website before colposcopy. She...

Age at interview: 29
Sex: Female
Age at diagnosis: 29
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I ventured onto Jo’s [Jo’s Cervical Cancer Trust website www.jotrust.co.uk]. I didn’t post anything on there but I just sort of had a good look round. And I found the information on there was probably better and more informative than anything else that I’d found really, which probably sounds a bit strange. But if you put in your search engine CIN3, and it brings up loads of stuff that is just far too technical for my reading, and to be honest I didn’t understand much. And when I went onto Jo’s, I mean really I suppose that’s one of the things, if I’d been told about Jo’s during being diagnosed with CIN, that probably would’ve been very helpful because they’ve got a massive, massive information and page about pre-cancer as well as cancer.

So yeah, out of everything, I think that would’ve been quite a positive if, when I went for the colposcopy, they’d told me about Jo’s Trust then. Yeah.

So did that nurse tell you about Jo’s Trust or…?

She did, when I was diagnosed with cancer she told me about Jo’s, and just sort of advised that I had a read on it. And said it was quite, well a lot of forums and it was quite supportive. So I came back but it wasn’t till I think it was the following week I went to see the new consultant, and when he gave me the option of treatments, that’s when I first posted on it.

Some women said they continued looking on Jo’s Cervical Cancer Trust after they’d recovered so they could help support other women, especially those newly diagnosed. Katie said she stopped using the website after a while, though, because she didn’t want to read too much about negative experiences.

 

Jo’s Cervical Cancer Trust website was helpful and supportive but reading too many negative...

Jo’s Cervical Cancer Trust website was helpful and supportive but reading too many negative...

Age at interview: 28
Sex: Female
Age at diagnosis: 28
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I read some of the things that they’d put on there [Jo’s Cervical Cancer Trust website www.jotrust.co.uk], and all, everyone was really lovely and supportive and everything else. So I put a post on there and everyone just, people would reply back to you straight away. And it was all really lovely. Because I’ve stopped going on there now because it’s just, although as lovely as it was, and it was good because you did get some questions answered that you might not have, I might not have thought to ask the consultant. Or he would be asking me in medical, you know, in a professional way. It was good because you, I was as, actually emotional from people that had actually been there at the time and they know what you’re going through. Whereas doctors don’t actually know what you’re going through. They only, a bit like me dealing with a piece of paperwork, that’s kind of what they’re like with me, you know.

So it was really good but I stopped going on there now because I did find after, as lovely as it was, I did find that keep going through and reading what other people were going through, it was making me think worst case scenario a lot more of the time. Where you’d read someone had been in your situation and then something else happens, and then you think, “Oh my God, that could happen to me.” Purely from a purely selfish point of view really, so no I don’t really look on there too much at the moment. Every now and again I will just to make sure that, you know, it’s nice to hear good stories and stuff like that, that’s nice.

Many of the women we talked to were grateful for the various kinds of support they received from different people.

 

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...

Age at interview: 29
Sex: Female
Age at diagnosis: 28
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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.

Some women had not needed much support. They healed well and were keen to get back to normal as soon after recovery as they could. Others, like Joanne, would have liked more support; she said she didn’t have much support around her because she’d recently moved and her family and friends lived some distance away. Several women would have valued more emotional support from health professionals, including a telephone conversation with a nurse or doctor before colposcopy and treatment, and while they were healing after surgery.

 

Joanne, a single mum, found it difficult because her family and close friends lived far away. She...

Joanne, a single mum, found it difficult because her family and close friends lived far away. She...

Age at interview: 36
Sex: Female
Age at diagnosis: 35
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It’s very, very difficult and I know from my own experience I found it, I suppose quite, maybe harder than other people because of the fact that my family and friends, well the majority of my family and friends, close friends, are sort of quite a fair distance away.

So it wasn’t a case of, I could if I was feeling down one afternoon, I could pop round for a cup of tea and a biscuit, and a cuddle. It wasn’t like that. It was a case of pick up the phone. But then I also think that to a certain extent people got sick of me going on about it all the time, because that’s all I went on about.

And I think, I’ve got an eleven year old daughter and I think she also found it quite hard because she didn’t understand what was going on at all. And she was sort of saying, “Well why, why did you have to stay in hospital after you had your operation Mum?” And I was trying to explain to her in the best way I could.

I really think that it, oh, everything costs money I suppose but a dedicated, maybe somebody who you could pick up the phone to, not somebody like, just any kind of support group. But somebody who you could pick up the phone and I would say, “Listen, I’m having a really bad day.” Who sort of, who you can talk to, who understands what you’re talking about. But not necessarily if you’ve, just for somebody who is suffering from cervical cancer, from somebody who has been diagnosed with, from small changes to high grade changes. Oh, to me that was quite an important thing.

So do you think it was harder for you in a way because you’re away from family and friends?

Yeah, yeah. Absolutely.

And being a single mother also …?

Yeah. Yeah.

….taking care of your daughter, making sure she’s OK?

Yeah. Yeah. Yeah absolutely. I found it increasingly, I found it very, very difficult because there was some days that I couldn’t even, I didn’t even want to get out of bed and it’s just not, and that wasn’t like me. There’s some days I just used to sort of, just used to stare out of the window into space sometimes. And I should have been concentrating on getting myself fit and well to get back to work.

A few women said they had a lot of support from family but were surprised at the lack of support from some friends, who perhaps found it difficult to know what to say or how to be supportive.

 

Michelle’s experience helped her realise who their friends were. She also realised how important...

Michelle’s experience helped her realise who their friends were. She also realised how important...

Age at interview: 31
Sex: Female
Age at diagnosis: 30
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I mean it did kind of make me realise kind of who my friends were. And it, not just friends, but also you know you kind of cling onto your family. And you cling onto people close to you a lot more.

I wouldn’t say that anyone became more important, but you certainly realise how much you need those people around you, because sometimes you can take them for granted, and you might not see your family for a few weeks.


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Last reviewed July 2017.
Last updated May 2014.
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