Interview CC10

Age at interview: 37

Age at diagnosis: 32

Brief Outline: Diagnosed with cervical cancer in 1997. Colposcopy and laser treatment given initially. From Cone Biopsy initial diagnosis stage 1A1. Six months after treatment, test results re-examined which showed stage of tumour more developed than first thought. Wertheim's hysterectomy. Ovaries not removed.

Background: Housewife; married, 1 child.

The epidural effectively managed her pain after her hysterectomy and she was surprised by how...

I was very, very surprised. They gave me an epidural for I think about 24 hours and so I didn't have any pain at all and then after that again they were giving me pain killers but I didn't actually feel the need for it. I think I was very surprised at how numb my abdomen had become and I just think a nice blessing seems to be I have a body that seems to numb itself. So it actually wasn't half as painful and half as difficult as I expected the operation to be.

She experienced a change in how her bladder works after her hysterectomy.

They gave me a catheter for quite some time and then once they took that out, fortunately I then met somebody who'd had the same operation as me and I remember her saying to me "It's going to be very strange when you first go to the toilet and the best thing you can do is push your stomach and that will actually help you go, because you won't believe that you can't actually work out how to go." And if I hadn't have had that I don't know what I would have done because it was a very, very strange feeling and it lasted, and I don't still probably have the proper original feeling that I used to have of knowing when you want to go to the toilet and actually knowing sort of how to completely empty your bladder. That has changed and that changed immediately afterwards. But because she had given me that information that helped a lot. So I worked out how to do it and then they let me go early, they let me go after 5 days because I think that was what I was determined to do. So it was only that, it was the numbness and just, just having to remember I had to remind myself to go to the toilet which is very bizarre, very bizarre thing. But again you know I sort of go round it, my daughter was being toilet trained when I got home and so when she went I used to go too.

So you didn't have the feeling that you needed to go?

No and I still don't fully. I've replaced with it other things, I've realised I've replaced it with other feelings. When I know my stomach feels full that's when I go, so I've sort of replaced it with a different way round. And I think it's unlikely that people have that. I think they said it doesn't normally happen that it never comes back. I think it's normally just temporary but for some reason it can't have reconnected somewhere down there. I think it's where they cut the urethra, its just whether that re-forms, the nerves for some reason didn't sort of reconnect for me.

She comments that doctors should address their patients fears about ailments following treatment...

I could definitely understand how consultants can get quite blas' about it and it's probably irritating to them. It's having these worries and having these concerns, you know they can see from, because they've got the bigger picture that they are just so small and they're trivial but when you're actually going through it it means so much and because you don't feel like you have control over the knowledge I think for me the most important would be to have somebody who always just made sure they've answered the fears. 

Rather than just say "Don't worry about it, its just one of those things cancer patients always worry about getting it again," for me it would be making sure, and making sure that they checked up on it. So if for example I didn't ever get an understanding of why the muscle had gone from above my belly button until I actually discovered two other women that had got exactly the same. And my understanding is it's where the muscles have come apart and there's a diverifaction. It's actually you know a side effect from having a baby. And I kept those worries inside for quite some time. 

So instead of the consultant just saying "Don't worry about it," I'd have liked for him to have double checked or just for him to just given me the peace of mind of going to a physiotherapist or somebody who would have an understanding of why that part of my body had changed because it would have meant quite a big difference to me for the next couple of years and I might not have kept back some of the information later on when I'd got pain. And who knows had that been something else that probably wouldn't have been a positive thing to do at all. 

So I think if consultants can sort of just be patient with the fact that I know they see the fear and they understand that they're probably very unnecessary fears it's definitely far better from the patient's perspective to have those fears answered and tested. Even if it is literally "Just let me double check, no that seems absolutely fine," would have been enough to reassure.

She felt that consultants should be able to be friendly but was made uncomfortable by personal...

Oh one other thing I guess, probably not just because it was cervical cancer, but because it was such a personal area two consultants made quite personal remarks about me which I remember at the time feel incredibly uncomfortable. Now they probably meant to just say them just to sort of make polite conversation but again because it's such an intimate part of the body and because you're feeling quite vulnerable at the time that had again quite, had a very, very uncomfortable feeling on me and I remember being very uncomfortable with that particular consultant afterwards when he had to check-up on me. So that again I would say if the consultant can just try and be as, almost objective and not de-humanised because it is lovely when they can smile and when they can you know add something of themselves. But I think particularly when you're a young female it's quite hard always having, because they're normally male consultants, it's quite hard having a comment on how you either look or what you're wearing or anything that. That I think they don't understand that it can actually make you feel quite uncomfortable.

She stresses that anybody can get cervical cancer.

And I don't deny if somebody says, if they ask questions about cancer, I don't tell them it was some other cancer. I don't feel unable to say it. And in fact I feel quite the other way round, I want to tell people that it can happen to quite normal people. I think Edwina Currie had sort of , linked it to that perhaps if people didn't smoke, didn't sleep around then they wouldn't sort of get these things. And I wanted to almost counteract that by saying I've been in a monogamous relationship since the age of 19, I'm still with the guy, we have a very normal sexual life and it can happen to anybody, if you have one partner it can happen to you.

Explains that having cancer helped her to understand the important things in her life.

And I think on the positive side it's also in the very beginning you don't think it's going to be something that's positive but I wouldn't want to go through it again but I'm so pleased I've had it because it has changed my life. It's changed my life in a very positive way. It's meant that I've understood the important things in my life a lot younger than I ever would have done. I used to try and do full time work and look after my daughter and I realised that I actually didn't want to do that. That I wanted to make sure I just spent as much time as I could with my daughter. And I have had five very happy years, five and a half very happy years since and I know that I wouldn't have had those five happy years had I not had the illness. I would've been very much more focused on my work and trying to keep my CV looking good and I think it just helps you put things into perspective. You hear people say it but it's probably not till it really happens that, and it is that complete taking the rug from underneath your feet feel. That is horrible at the time but huge wonderful life learning and I think if people can hang on to the fact that it will have huge positive sides to it and keep that in mind that they'll actually probably be pleased they've had it. It will help them with the down days really.

She felt alone despite being surrounded by support from family and friends.

It almost takes you into your own world it's, and I think I probably felt quite isolated, just the fact that nobody else can really help, nobody else, it's happened, it's just happening to me. I had loads of support of my friends, and my family were told at that point because obviously just going in to hospital quickly. I think my husband felt that they needed to be told so they came and gave me lots of support too. But it's just not quite the same and you're aware as well, I mean I was always very jolly and very strong for everybody else because I didn't want anybody else to worry really. So I think I probably kept a lot of it inside even though I know they were offering support and they were offering to sort of help, I didn't want to make them worry and I didn't want to sort of put my concerns on their shoulders. And that I'm sure is when I managed to find Cancerbackup and that was brilliant because it was somebody completely dispassionate that I could just, just ask really daft questions and ask things about me rather than just reading about the facts.

Explains that five years after her treatment she found it hard not being able to have a second...

I think it's been the fertility side that I think has been the hardest thing since. I think because hopefully, I've not completely stopped worrying about my health, but I do feel that it is over and done with as far as I can tell. So it's been harder sort of not knowing that I can't complete my family, the sort of image of the family that I wanted. I wanted two children. And so that's been the toughest part. And going back and reading my notes and I remember saying quite clearly it wasn't an issue at the time. And it wasn't an issue for me but I think 5 years on it is an issue for me.

And how do you cope with those types of feelings, how do you find ways to cope?

I suppose that ever since I've had the illness because we'd just moved house I focused on my daughter very much and just on having things to enjoy. I've made sure I've you know treated myself to holidays and I've done all sorts of things that I know I wouldn't have done otherwise. Then two years on we decided to move house again and it was the Friday before she started school on the Monday, so very, very good timing because I was aware that there was going to be a void. And I guess that void will come again in September when I've finished the house and I know I want to move on and do something else and it's making sure that I focus on another project to give me that satisfaction that I can't get from having another child. I guess that's probably the way I've looked at it.