Interview CC06

Age at interview: 46

Age at diagnosis: 36

Brief Outline: Diagnosed with cervical cancer (Stage1B) in 1991. External Radiotherapy (30 sessions), followed by Internal Radiotherapy. Radical hysterectomy after radiotherapy. Both ovaries and some lymph nodes removed.

Background: Support Group Volunteer; divorced, 3 children.

She told her younger children that something was wrong with her tummy and she had to go to the...

When I went up for the planning day, the nurses up there were great, they really were and they told me about the sort of things I should do or shouldn't do as the case may be. And I asked them what I should tell my children. And they said "Well how old are they?" and I said "the younger two are 4 and 5 and the eldest one is 16," and she said "Well what do you want to tell them? And I said "I would like to tell them a little bit because obviously I'm going to be disappearing every day to come up for my radiotherapy treatment and later on I'm going to have to have some surgery," and at that stage they'd said hysterectomy but I really wasn't quite sure exactly what that entailed. And she said "Well for the younger two just answer their questions, just tell that you've got to have, that you've got something wrong with your tummy and you've got to, the doctor said that you need to have some treatment at the hospital, something done at the hospital to make it better." And I said "Will that be enough?" and she said "At that age that's probably as much as they need to know and if they want to know more they will ask." And as it happened that was quite a good bit of advice, you don't need to go into all the ins and outs with very young children. If they need to know more they will ask and you can, you can be open and honest with them without lying to them, without frightening them. It's very difficult to get that happy balance but we seemed to manage to do that. My eldest daughter again was very, she didn't really want to know too much about it so we sort of more or less agreed not to speak about it. 

What do you think was the impact on your children?

The younger two at the time, children are very bright, they know when something is going on, but by the same token they're very adaptable and they're very resilient. And they were okay as long as we tried to keep their routine as normal as possible. 

She wasn't aware that smoking is a risk factor for cervical cancer when she was diagnosed ten...

The interesting thing that I found was that one of the things that I can remember saying when I went for one of the consultations, I can't remember which one, was I'd better give up smoking and I'd better lose some weight fast. Both of which he swept to one side and said "Don't worry about either of that, we can treat you especially at this stressful time you might feel that you need to have a cigarette if that's your way of coping." He said "Think about that afterwards." He didn't say at the time that it may a contributing factor. I've heard over the course of time that it is one thing that is thought to be a contributory factor. 

I no longer smoke, not because I gave up because I'd just sort of made a conscious effort to give up smoking but during the course of my radiotherapy treatment one of the things that I couldn't face was a cigarette and smoke of any sort, it was just one of the things. Another thing was coffee, went off coffee. But it's not something I consciously did and when I'd got to the end of my various treatments, one thing I really, really wanted that I was really looking forward to was a cigarette, but it was like going back to what would've been day one I suppose because I couldn't understand how I ever started smoking in the first place because it was feeling light headed and awful and I thought no I can't do this. 

So I didn't make a conscious effort to give up smoking I just did, due to other factors, but I never started again. And yes I have heard about the links but I wasn't conscious of it at the time. It still, smoking isn't good for many different things. I wouldn't encourage anybody to smoke. I feel it's a person's right to choose. I don't condemn anybody for doing it either because once you've started it is very difficult to give up. But I do believe that for many different illnesses it's not a good thing.

Explains how she worried about every symptom after her treatment but felt supported by her GP.

There were still nagging doubts, I'd be a liar if I said there weren't. Even now sometimes I sort of think oh I wonder what if. I became very aware of every ache, pain, itch, lump, bump, you name it, and I probably went backwards and forwards to my GP more during the first couple of years after that than I'd ever been at all in my life, including the times when I went during my pregnancies for ante natal and so on. I'd sort of feel a lump and I'd think well has that always been there or is that new, is it something to worry about or not? And I'd go to the GP and particularly when my new GP was there, I said to her one day "You must think I've turned into a hypochondriac." And she said "I'd rather you came to see me 100 times or more and me be able to say to you "That's okay, it's nothing to worry about, it's just whatever or that's okay," than for you to sit at home and worry and get yourself, work yourself up into a major stress, or to ignore something which could be important." She said "So don't worry about it, come as often as you need to," and she was great. So that was good.

She explains how she felt reluctant to talk about her concerns because she didn't want to worry...

It was a very strange thing at home. Although I had a lot of support from friends and family, we would say a lot without talking about the issues. I felt I couldn't say what was going on in my mind because I, regardless of what I was being told I still felt that they might not be telling me the truth. It's a what if syndrome, what if this happens, what if that happens, what's going to happen to the children, what if, what if, what if, and so on and it's very difficult, very, very difficult. But there was nobody I could say that to without at the time me thinking well if I say that they might think I've been told something more than I have, that will get them worrying more. And it's a vicious circle and likewise they wouldn't say anything to me in case it upset or worried me. So there was this, it's a conspiracy of silence, all for the best of reasons, everybody trying to protect everybody else but by the same token there is absolutely nothing that anybody could have said to anybody else that would've made the situation any worse than it already was. But when you go through it you can't see that.

She describes the side effects she experienced during her external radiotherapy.

But after the first sort of 10 sessions things started to go down downhill pretty rapidly, I was getting very tired. I was getting slightly, slightly sore, not completely sore but just very, very slightly. I wasn't getting any sickness as I said before so I was pleased about that. So there were pros and cons. I mean some people get things in varying degrees and that was okay. Towards the end I suppose of the third week, going into the fourth week, that's when it really started to kick in. I was really, really feeling tired, I was getting extremely sore, I was getting very, very irritable, extremely irritable because at that stage although I could still do things for myself. I could still get myself up and get dressed and ready and so on, I had to get up earlier because it was taking longer. I wasn't sleeping well, my sleep patterns went all over the shop. I was finding that sometimes I couldn't sleep at all and other times it wasn't like going to sleep, it was almost like passing out, but I was feeling tired at strange times of the day. 

She advises questioning doctors about symptoms or treatment if you have doubts about the advice...

And if you don't feel comfortable with some of the things they're telling you, with some of the treatments that are being offered ask why they feel that is the appropriate treatment. Are there any alternatives to that treatment? What will happen if you don't have that treatment? Many women just take a doctor's or a consultant's word as being that's, just accept it. I've learnt along the way that you don't have to just accept it, they're human. I know that I accepted my locum's word that I was going through an early menopause. And if I'd perhaps not been as na've and more informed at the time I might have been more able to say "Are you sure, are you sure that perhaps I didn't ought to be referred to the hospital?" But at the time I didn't know and at the time I did not feel able to question a doctor. But don't be afraid to ask questions. They do know more about the body's working than the average person but at the end of the day if something is not right for you personally, if it's not normal for you personally, then this is what the doctors and the medical profession are there for, to investigate abnormalities in your normal self.

She encourages women to ask their doctors questions and to take a friend or relative to...

And don't be afraid to ask questions. It's your body at the end of the day, ask questions. If you don't understand what's being said to you ask what that means. I would always advise women to take somebody with them, whether it be their partner, a friend, somebody to go along with them who can also listen to get another viewpoint. Because once, if you go into a state of shock or whatever, you don't hear what's being said. It goes straight over your head and in my case I just picked out the worst bits. I'd didn't hear the fact that I could be treated and so on, and what was going to happen, I didn't hear any of that. So another viewpoint is very useful. Write questions down. If something occurs to you write it down and when you go to see your consultant ask the questions.