Interview CC18

Age at interview: 38

Age at diagnosis: 34

Brief Outline: Diagnosed with early stage cervical cancer in 1998. Undergoing fertility investigations at time of diagnosis. Radical Trachelectomy (first women in her region to have a Radical Trachelectomy).

Background: Midwife; married, no children.

She stresses that things get better with time.

But its like when somebody dies, it gets better. And I hardly, I think about it a little now but hardly at all really. Its not, you do get a balance and things get better with time but don't expect within a year that your, everything's going to be fine and you're going to be positive. I think everybody's different and you mustn't expect yourself to too quickly to get back to normal. And you may do a few extreme things but you'll get back to your balance and your routine.

Explains that she found it painful when her vaginal packing was removed after her cone biopsy.

I found the vaginal packs painful. I did find them very painful coming out. I spoke to a friend who'd had a vaginal pack and she found - two friends actually had found it painful. Because I thought maybe I was being a baby but they definitely were painful. And I think you definitely need some sort of pain relief when you have them taken out.

I did find when I had the vaginal pack in that because it tends to press on your bowel a little bit, you find that and I found the most comfortable position when you're in bed was to lay on your side. You didn't feel the pressure of it, but actually when it's in its not painful. Because if you think about it the vaginas designed for childbirth so its not going to really be that painful. When its in you don't feel it but I did find it very painful coming out and I was glad to have the entenox when it came out. 

She describes how she felt physically immediately after her radical trachelectomy.

And then the actual, after the operation, I don't really remember any of the being in recovery. I remember waking up downstairs in, in the ward and I was very, very thirsty, I remember that and I remember that because of the risk to your gut they wouldn't let me drink and I remember really being so thirsty and that was the worst thing, that night was so long because I was so thirsty and I just wanted to drink water. That, that was the worst bit, apart from, I mean I had, you have strong pain relief, morphine afterwards but the worst bit was being thirsty and not being able to get up. 

I was, I did have a reaction to the morphine and it made me itch, it made me itch a lot. And they gave me something for that but I didn't realise, I didn't realise that even though I was itching like mad I didn't think to tell the nurses for ages and I wish I had now because I wouldn't, I wouldn't have itched for twelve hours and scratched so much. And I was quite sick as well but I had something for that. And it was very painful. It was painful definitely and I didn't expect it to be so painful and I didn't expect the bleeding to be so heavy as well. I think I really wasn't very realistic. I thought I would be up and out because I was young and relatively fit I thought I would be up within two or three days and back to normal. I think I just wasn't realistic about it all.

She describes her recovery from her radical trachelectomy.

I didn't expect to feel as weak as I did. Because I'd always been quite active, I'd walked a lot, I was really quite surprised that just standing for any length of time made me very tired. I was quite surprised by that, how weak I felt. And I remember the first time I went for a walk on my own I had to sit down half way and I was only going down the road, and I was quite surprised by that. That I felt quite vulnerable because I didn't feel as strong as I normally felt. 

I mean the initial two, three weeks, it was uncomfortable and painful. And I think maybe looking back now I should have relaxed more but I was quite adamant I was going to get going and do things and I was going to do my housework and I was going to be active.

I have to say I quite enjoyed my post-op time at home. I, I enjoyed, I did quite a lot, I think I was quite active and I enjoyed it. And I was quite surprised.

So how long was that period?

That was twelve weeks, I think probably I could have gone back a little bit earlier. But I think once, you mustn't rush too quickly to get back to it because once you're back in work, you're back in work and people will make allowances for you but really, and especially with my job, you're on your feet, once you're back you have to be back and be fully recovered. So I wouldn't rush to go back, take, take that time. And do nice things, don't feel guilty about being off work. Do nice things, go to the beach, go for a walk you don't have to adopt a sick role and be in the house all the time.

Having cancer gave her a different perspective and made her more assertive though in most ways...

Everything doesn't change just because you've had cancer or a disease. You don't sort of suddenly wake up and you change your life completely. Things still go on as normal. You still, and its quite hard after you've had cancer because a lot of people expect you to be positive all the time and they get very fixed on that, that you have to be positive. Because there's a link that if you're positive after you've had cancer that you've got a better prognosis. And sometimes that can be a little bit irritating because people want you to be happy and cheerful all the time. Well you may not have been happy and cheerful before you had cancer. You were gonna have days when you were down, you were like that before you know. And you still have to do the mundane things. You still have to go to Tesco's, you still have to clean your house, you still have to go to work. But on the positive side of things it does give you a different perspective. Maybe things you got worried about before you think well maybe they're not quite so important but I still sometimes find that I still, I don't prioritise. I still get worried about things that are not important but my personality is not going to change overnight. You know I can maybe realise is it really important that I clean the house today so things are not gonna change dramatically. I found that afterwards I was definitely more assertive. Whereas before I would maybe think oh I don't like to make a fuss or, I did think well no, I'm going to say this or I do feel that this isn't right. So that was good definitely.

Explains how she looked for extra information before making a decision to have a radical...

I just knew, I was very single minded that I wanted the trachelectomy; I'd got all the information. What I did was just get information from people and from professionals and I got their point of view and I as always, I was very thankful for the few people who gave me their honest opinion. And some people, a few people did say 'Well I wouldn't have this, this is new, you're taking a big risk.' And I always appreciated that. I didn't necessarily take their advice but I sort of looked at all the information and then decided myself what was best for me. And I am still glad today that I had the trachelectomy and that I took that option, because for me it was right and I'm glad that I didn't listen to other people. And I knew as well that my consultant, he had said to me 'Well if we do this, and I find more cancer then you'll have to have a hysterectomy.' And I had great confidence in that he would put my safety first. So that's how I dealt with that.

She explains why she found it beneficial to be involved in a clinical trial.

At the time there was a survey which they were trying to look at, a link between the small, smallpox vaccination as an immunisation for cervical cancer and so I saw the nurse for that and I found her a big help. She was, because she was throughout, from the diagnosis to post-op I saw her and it was, it was really nice because I could chat to her and it meant that I saw somebody on a regular basis throughout my treatment. And that, I felt that the benefits of taking part in the study were, were tenfold really, because I was able to talk to her and she was somebody, she wasn't family and she wasn't a friend, so it was nice, I didn't have to worry what I said, you know what I talked about to her you know that I was going to upset her or, so that, that was brilliant seeing her throughout and I think that was a big benefit of taking part in the study.

She wanted to try for a baby before she had treatment.

Even when I knew I was having the trachelectomy when I was offered that, I was still very focused on whether I would be able then to go on and have a child. And at one point I really didn't want to have anything done. I didn't want the trachelectomy, I didn't want radiotherapy and I didn't want a hysterectomy. And I spoke to one of the nurses, the support nurse, the oncology nurse and she was quite blunt with me, she really sort of said 'Well you have to have something done, if you don't you will, you will go on to have secondary cancer and you will die in a couple of years.' 

And that was good because she was very blunt and it made me think I have to really, this isn't something that's just going to go away and I might become pregnant and I can have a pregnancy and then sort out the cancer. And she, it was really quite good for me for somebody just to be quite direct with me. Because I really, I just wouldn't see sense. I was so focused on that I was going to have my fertility treatment and have a child and then sort out the cancer.