Melanie - Interview 13

Age at interview: 29

Age at diagnosis: 29

Brief Outline:

Melanie was diagnosed with CIN3 in 2008 and with cervical cancer shortly afterwards, at the age of 29. She had LLETZ under general anaesthetic to treat the CIN3 and a hysterectomy to treat the cancer.

Background:

Melanie lives with her partner and is a psychiatric nurse Ethnic background / nationality' White British

More about me...

Melanie said she had been on the pill since she was fourteen, and so always attended for cervical screening. She missed one appointment and, when she noticed bleeding during and after sex, she visited her GP. Her smear test result showed abnormalities and she was referred to a colposcopy clinic, where she was diagnosed with CIN3 and told she would be treated by LLETZ under general anaesthetic in a further appointment.

At this appointment, Melanie was told that all the CIN3 had been removed and that she would need to attend a follow-up appointment in six months. Four weeks after this appointment, however, she received a letter asking her to make another appointment to discuss any further treatment. She said that, at this point, she felt certain she would be diagnosed with cancer.

At this appointment, Melanie was told that she had early stage cervical cancer and a trachelectomy was discussed. In this operation, the surgeon tries to remove all the cancer but leaves behind the internal opening of the cervix. This is then stitched closed, leaving a small opening to allow the flow of a period to escape. The idea is that the stitch will support a growing pregnancy until the baby can be born by caesarean section. This operation can only be given to women who have a small stage 1 cervical cancer.

At the following appointment, Melanie spoke to a different consultant, who gave her the option of having a trachelectomy or a hysterectomy. She felt annoyed at being given a choice but, because she did not want to have children in the future, she decided to have a hysterectomy, having discussed both options with her family and partner.

Melanie said she was happy with the care and information she received from doctors and nurses, and also found the Jo’s Cervical Cancer  Trust website informative and supportive (www.jotrust.co.uk). She said it took around thirteen weeks to fully recover and, at the time of interview, she was looking forward to a phased return to work.

Melanie was shocked and frightened because of the word ‘cancer'. She talked to other people and...

End of October or some point in November I received a letter from the GP to say that the smear results had come back and there was some abnormalities there and they’d advised that I needed to go for a colposcopy. And sent me all the information about a colposcopy and how to make that appointment, which I did do.

That was the time when I first saw a word associated which was cancer, and pre-cancerous cells. And obviously the information leaflet I got was all about the CIN1, 2, 3 which is something I’d never come across before. Totally terrified when I just saw the word cancer, it was just like a mass panic.

But then the more people I spoke to about it, the more common I suppose it was. Everybody I spoke to had had some abnormalities and abnormal smear at some time. My sister, I didn’t even realised she’d had several abnormal smears. She’d had treatments for CIN1 and CIN2, so that happened.

Melanie wishes she'd been told about Jo's Cervical Cancer Trust website before colposcopy. She was later diagnosed with cervical cancer and told about it by a nurse.

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.

Melanie was in a fairly new relationship when she was diagnosed first with CIN 3 and then with...

I was also talking to my partner, because we’ve not been in a relationship long when I started bleeding, well we wasn’t. Our relationship at that time wasn’t serious, back in September when it all started happening. We were sort of, I’ve known him for years and years and years through another friend, but yeah he’s been, he’s fantastic. And he’s just sort of somebody you can talk to about anything. And when I was Googling the erosion of the cervix, he was down here with me at 3 o’clock in the morning just Googling away and trying to find something. So I do speak, I have spoke to him a lot. Yeah, he’s fabulous.

Did your relationship become more closer or…?

Definitely. Definitely. Yeah I mean I’m currently just moving in here now and that’s, I think if this hadn’t have happened, then we certainly wouldn’t be moving in together as quick. I mean we’ve only been seeing each other really since October. But we have grown very close. It’s very, absolutely fantastic. And, to be honest, I have kept quite sane throughout this, and I have dealt with it all fantastically I think. But I don’t think I would have dealt with it as fantastically if it hadn’t have been for him. I mean I’ve had my mum and I’ve got my sister and they’ve been fabulous. But if it hadn’t have been for [partner’s name], I don’t think I’d be as sane as I am.

Melanie encourages women to go for cervical screening even though they may feel scared. If...

Definitely go. In fact out of everything, everything now, if you have an appointment for anything, you’ve got any concerns of any physical health, I’d just say go. Just get it checked out, even if at the time it seems silly. You feel scared, obviously you’re going to be scared, whether or not to go, for a screening. But go, because the earlier, you know it is treatable, really, at the end of the day. Whether it be CIN1, 2, 3, or whether it be cancer, it’s all treatable. The longer you leave it, then it’s going to have more difficulties, but at the end of the day it’s all treatable. And to be honest the treatment isn’t that bad. It’s all do-able. Yes it’s very nerve wracking, and you get very anxious but it’s do-able.

Melanie knew she had cancer when she was asked to come back to discuss further treatment after...

It was four weeks after that that I received the letter to say that I needed to go back and make an appointment. The appointment date was through for me to go back and see him again to discuss any further treatment that was required.

So really I knew there and then that, you know, I had it [cervical cancer]. Well I knew really that they’d found some cancer. But you talk to people and people are very reassuring, telling me about, you know, ‘everything’s going to be fine. I’m sure it’s just procedure’, blah, blah, blah. But I went and I knew in my own head that I was going to be diagnosed and I went and it was, and fortunately it was very early stages of cancer.

Again, he was absolutely fantastic. I was given a clinical nurse at that point, who was very, very supportive. She then took me, a lot of information she gave me. Totally bombarded you with information really. The amount of stuff they give you.

And then that’s when she recommended Jo’s Cervical Cancer Trust www.jotrust.co.uk to me and gave me the website address and things like that. I didn’t really go, I didn’t really do much research on the internet because I just found if I Google anything or look on there it just totally spins me out. The amount of information that was on there, and it was all horror stories, and so I really didn’t do much about that.

Telling other people helped Melanie cope. She learned that her sister had had abnormalities too....

So when you got the letter, you told your mum and you told your sister. And that’s when you heard from your sister that actually she had been…?

Yeah, she was like, “Oh nothing to worry about, been for loads of them. What are you moaning about?”

Did that make you feel better?

It did, it did. Like I say, the more I spoke to people, cos I’m very much a very open person anyway. I have to talk to get through things. I’m very, I don’t know, but I also need, but I have to talk to people. That’s the way I cope with stuff, so I spoke to everybody that I met about it really. Everybody I spoke to at some point had been, “Yeah, I’ve been for one of them, I’ve been for a colposcopy.”

I rang my Dad and, at the time when I rang, I rang my boyfriend as soon as I found out, when I came out. And I told him over the phone that I’d been diagnosed with cancer. Because he’s very, very much a strong person, and his dad’s very poorly and his dad’s got cancer himself. So he’s sort of got broad shoulders, bless him.

So I told him and then I can remember ringing my dad and my sister, and I sort of said everything’s fine because obviously I didn’t want to tell them over the phone. So I told them that it was fine. And then I went to see my sister, when she got home from work, and told her. And then I went to tell my dad, which was horrible telling them. But the worst person was telling my mum when she got back off holiday. That was the most difficult thing at the time.

Such a hard thing to have to tell them isn’t it?

Yeah, it was horrid. It was, I think my sister just, oh she just started bawling. And you have to be strong, you have to be strong for them, you know. Its very odd. You try and be strong for them and, like I say, I don’t know whether I was just naive at the time but just, well not naïve, just matter of fact and I’d been diagnosed and I was having treatment and that was that.

Melanie had to choose between having a hysterectomy or a radical trachelectomy. She spoke to her...

He [consultant] then gave me an option of having this trachelectomy or a hysterectomy.

I was a bit cross and a bit annoyed that he gave me that option, and that I had to think about what I was going to do. But weighing up the pros and cons and just wanted things getting out of me, and I just wanted the cancer going. And I’ve never wanted children, and he said that if I had two children then the trachelectomy wouldn’t have been an option. So for that reasons really I decided to go for the hysterectomy.

My family – I always speak to, my mum and my sister are like my best friends, so I just talk to them about everything. But when my mum did find out, she came back off holiday. I mean everybody that I spoke to really was sort of, you know, we can’t make the decision for you but they took into consideration that I’ve always said I don’t want children. And my mum was very much, “You don’t want children, now you’ve never wanted children.” If this is going to be, you know, to get shot of things, then she was more supporting the hysterectomy more than anything. Well more than anyone as well, she was, I think she was pushing for that more. Yeah.

So you went back and told the new consultant and what happened at that appointment?

He said that I had to be 110% sure. He said if there was anything, he said if you’re only 99.9% sure that you don’t want children, then I’d be offering you the trachelectomy. But then at that point you see, I said to him, “I want the hysterectomy. I’m 100% sure.” And then that’s where they started saying, not, but then, they himself was leaning more towards the hysterectomy, does that make sense what I’m saying?

Because he was like, then he starts telling you, oh if you’d have the trachelectomy something or, I can’t remember what he said but it was like, okay, I’ve definitely made the right decision to have the hysterectomy. Oh that was it; he was telling me that if I’d gone for the trachelectomy and if there’d been any chance of reoccurrence or anything like that, then it would be more difficult to operate. So I came out of that appointment definitely knowing that I’d made the best decision with having a hysterectomy.

Melanie went into hospital by herself and felt, with hindsight, that it might have been easier if...

I think it was about, gosh, a quarter to three in the afternoon they came for me. And took me down to theatre and I had, the old consultant was the first person I saw down there, who again was lovely. Gave me a big hug, very reassuring.

And then they took me into the theatre room and that’s when things, well that’s when I started, I just broke down in tears. I can remember just lying on the trolley in absolute gusts of tears. But by that time you’re in there and it’s very, very clinical isn’t it? And nobody’s really got time to waste in being….so they just stabbed my arm and put me to sleep. I was in tears when they put me to sleep. I can remember looking through the door and seeing the consultant there, but that’s it, gosh. That was a horrible, horrible, yeah that was horrible. Out of everything, that was the worst moment ever I have to say.

What would have helped in that moment?

I don’t know, I don’t know if it would have helped me taking somebody with me, who could’ve come in, who could have come down there. I think that probably would, I think looking back now really I should’ve asked [partner’s name] to come. Even, just to keep, you know, someone to talk to whilst I was waiting to go down. But just to go down to theatre with me, just to hold my hand I think whilst I was there.

Because, like I say, that point when I started crying, the nurses just took over and it was a case of , “Too late now love, sorry.” Oh yes, so definitely gosh if ever I have anything like that done again, I’ll take somebody with me. I don’t care how upsetting it would be for them to see me going to sleep. I don’t care about that. I’ll just take someone with me.

So the next thing you remember is coming round?

Yes. I can remember waking up down there, much better coming round than when I had my anaesthetic for the LLETZ, there wasn’t the coughing, the spluttering, which I was quite pleased about. Because obviously at that point having my belly wounded which would have been awful. But I came round, they was very lovely and then they took me straight up onto the ward. And I was all dripped up, and just kept coming in and out of, just asleep.

Walking was difficult at first but gradually Melanie could do more for herself. Within a few...

I was sort of doing a bit more in hospital over the weekend; obviously getting up for the first time was horrendous. I think I spent 30 seconds in the shower, that’s all I could muster. But again the nurses was lovely and always there to help. But then I can remember on the Saturday I started doing more, and by Sunday I’d walked downstairs and gone to the canteen. When my dad came to visit, we went down there for a cup of coffee rather than stay on the ward. And then the Monday came home and then things slowly got better from then.

So what were you recommended, you know, what to do to look after yourself when you got home?

To rest, obviously keep mobile and things. Take the painkillers that I was taking. I was only taking paracetomol and Ibuprofen. I wasn’t taking anything else. And just rest and, from talking to everybody, they just, everybody said you feel like you want to do more, and you can do more, but realistically you can’t. And I can remember [partner’s name] had a week off, so I just sort of stayed either in bed or just on this couch. I think I certainly didn’t go very far.

And for six weeks I wasn’t able to walk the dogs and if I did too much I knew about it at night time. I think after the fourth week I was pulling out that television and oh, that night time I knew I was, that I done too much. Then that was when I gave myself a kick up the bum really and just said, “No, I can’t keep doing that.” And just slowed right down and, it’s only just recently, last four weeks, three weeks I’d say, that I’m getting back to my usual routine. I can take the dogs out now, which is good and, yeah so the last four weeks I’ve been getting back to normal.

Melanie wants to make more time for the people that matter to her. She stopped smoking before...

I certainly have more of an attitude now of, I’m going to make me happy and I don’t really care very much for the consequences on other people. Which sounds really shallow and really nasty when you say it like that. But, before, I’ve always been very much, constantly worrying about what other people might think of you, constantly trying to be there for other people. And going through this, it’s sort of made me realise who I can rely on, and who are my friends. And I don’t need to rally round for everybody anymore and constantly go to their problems, because they haven’t done that for me. And I know who matters to me, and who don’t. And I’ll be looking after me and those who matter.

Have you looked at any of the areas of life in a different way, because some girls, women, said that they changed their diet or they were smoking before and they stopped, you know, all those kind of things…?

I have stopped smoking, but the thing is I’ve never really been a smoker, I’m more of a social smoker. But I did stop smoking. I stopped smoking the week before I went in for the hysterectomy. Because when I went for the anaesthetic and for the LLETZ and I woke up and I was coughing and spluttering, and that was absolutely horrendous. I didn’t want to go through that again. So I packed up the Tuesday before my, the week before, and I’ve not started smoking again. So that’s something I feel quite pleased about.

And I’m also trying to get healthier. And I’m more determined to try and be fit because when you look at, you know, you read all these things and people tell you well this can lead to cancer, and this can lead to cancer, and I don’t, you don’t know whether it does or not. But I certainly, you know my outlook like that has changed. I want to get healthy, and I do want to be healthy. And I want to be around really. I want to be around to see my niece and my nephew grow up. And I want to go out on more walks with the dogs, because I enjoy it and it’s going to help me stay fit.

Melanie was nervous before her colposcopy but said the consultant was fantastic. He told her all...

I went [to the colposcopy clinic] and it was fine. I was very nervous about it while I was sitting there, in that waiting room it was quite, a bit nerve racking and things. But yeah, that’s just because it’s your cervix isn’t it? It’s very, to be wary to be having treatment and things for. But when I went in, the consultant was absolutely, he was fantastic. He was a very nice gentleman. Sat down, made sure he explained everything to me about the procedure, what was going to happen during the colposcopy. Very much similar to a smear really.

I also had another nurse in, and a student nurse, so that was very good. Although obviously I could’ve said no. But she was lovely. She sort of held my hand and kept talking to me, and he was absolutely fabulous, very relaxing. Made you feel very comfortable, or as comfortable as you can be in that situation I suppose. But he was lovely, yeah. It was good. A good experience really. It was, he was nice.