Interview CC07

Age at interview: 49

Age at diagnosis: 41

Brief Outline: Diagnosed with cervical cancer in 1994. Wertheim's hysterectomy. Both ovaries and some lymph nodes removed.

Background: Researcher, married, no children.

Describes her experiences prior to hysterectomy.

You had an enema type suppository, enema which is one of these nasty things you have to have to empty out your insides as much as possible, to avoid complications with the surgery. Of course you're not allowed anything to eat or to drink in the morning which as I love my cups of tea first thing was a real hardship. I was lucky because I was sort of booked for 9 o clock so I didn't have long to wait. Some people have to wait for ages without anything to eat or drink. So I think almost first thing I was given a pre-med tablet or whatever it is they give you, I think it's a tablet to start with just to start sedating you a little bit. Of course the day before the anaesthetist had come along as well, talk through your medical history, any allergies and that sort of thing and sort of reassured you that he was going to be there when you went in and he was a very nice man, very calm and reassuring and sensible seeming. So then you go in the corridor on the trolley with your surgical gown on, your hair in a cap and all the rest of it. And the last thing I saw was him putting the anaesthetic thing into my wrist and I was asleep.

She describes how she has found complementary approaches useful in coping with her post-operative...

I think one thing I did while I was on sick leave the second time was I started looking at complementary therapies. The first thing I did was went to have acupuncture, specifically for the pain which I went to see somebody who was very local which was great because it's close and he's a GP as well so I had the confidence in his judgement. I'm not implying that other acupuncturists aren't very good and very well trained but that's how it helped me. And it did actually seem to help the pain and it wasn't, sometimes acupuncture can have a very good effect for back pain and things very quickly but my pain it didn't do that it was too complicated I think. But it did help me to reduce the painkillers and I think if any sort of complementary treatment is holistic, and it's helped me on other levels as well I think emotionally and that sort of thing and of course one of the reasons why this person doesn't work full time as a GP is he likes to have time with his patients and you're sort of lying there for an hour or so having your treatment and you talk to him as well about all sorts of things and that has a great benefit in itself I think. And since then I've looked into all sorts of other types of complementary therapy, herbal therapies and things like Bach Flower remedies and I've started learning Reiki myself, I went to a Reiki healer who helped a lot and I started learning that and things like meditation and relaxation and the whole sort of thing that can help people really.

She found Jo's Cervical Cancer Trust helpful to get advice about her ongoing post-operative pain.

I did actually use it in relation to my pain problems, just out of interest really, but obviously the main thing was it's so long now that there's really nothing else they can advise that I haven't already looked in to but they gave me a very reasoned thought out carefully considered answer. I think it was just one of them replied, she sent it to two experts. I think the first one probably did such a good job. He'd obviously put a lot of thought into replying to me. I'm sure, especially I would've used it if I had just been diagnosed if it had been available then, definitely and they've got a bulletin board thing that people can put up questions and correspond with each other if we want to. There some very sort of moving ones I've seen on there, very young people who are very worried about just having had an abnormal smear or something like that, hopefully getting some reassurance from it. And of course it's world wide being the internet, everybody's got access to it.

Having a cancer which has sexual connotations can be difficult to deal with.

The other thing with cervical cancer is sexual connotations and that's very difficult to deal with because there are theories you've been a bad person basically which I'm not sure how medically that pans out these days. There's various theories on people who are more prone to cervical cancer anyway. One thing, again I wish I'd known more about about at the time is that I had HPV for a long time and there was never any connection made when I was treated for that, that I should have more regular smear tests and now I think you would do which would pick it up earlier. So that's something that's progressed on since then. There wasn't the connection at the time at all I don't think.

 I think medical opinion differs anyway, I mean I don't think anyone can say it's a direct causal relationship or anything. It's just one of the factors that seems to be involved when people have cervical cancer. And I think the important thing that came out with talking to people is that people shouldn't blame themselves. Nobody really understands cancer otherwise they'd be able to cure it wouldn't they?. So there's no point blaming yourself. It's very difficult with that sort of cancer in particular in some ways because other sorts of cancers. I suppose you could blame yourself for eating the wrong food or something like that, there again if anybody wants to blame themselves I suppose they will, but there's more connotations with cervical cancer in a way I think that makes it harder for people I think.

Her post-operative pain from her hysterectomy affected her ability to drive her car daily to work...

I went back to work full time. I started from home because I had a very understanding employer and I started from home sort of part time and then I went back to the office part time but worked full time some from home and then in the October, I had the operation at the end of May, in October I went back to the office full time. But I was in a terrible amount of pain and I don't know why I put myself through it now because I should have realised I'm on sort of maximum doses of pain killers and in agony all the time but determined to get on and do my job and ignore it. 

I went back to the consultant and she recommended some treatment, which was a sort of heat treatment thing called Curapuls. I went to the local Physiotherapy Department for that quite close by. And they warned me that might make it feel worse to start with which it did. It made it feel a lot worse but it didn't start feeling better so in the end I stopped that before the end of the treatment because it was just too much for me. 

But around that time I actually rang up one of my colleagues in the morning and said I couldn't come into work that day and she sort of made me realise that I was going on too much and so I actually had to take another six weeks off sick leave from work. Because the first time, when I had my operation the company were very good and kept me on full pay which was wonderful but on the other hand I felt very much obliged to get back to work as soon as possible so the second time I actually took sick leave which meant the pressure was off a bit. 

Following that I arranged to work, I set up an office from home and I arranged to work from home more or less all the time rather than try and go into the office. I went in two days a week instead of five days a week and that helped because I found, even now driving is one of the things that really brings on the pain and it's a very hard thing to understand unless you're familiar with pain cycles. If you do it one day it's fine you can cope with it, if you have to do something like that three days in a row it builds up and then takes quite a while to subside again so it's a question of managing it really. As I say even now nearly eight years later if I overdo it, I get really bad pain again which is very distressing after all this time because you think you're over it and then it brings it all back again. 

I have used a TENS unit actually for the pain which has been very helpful, do you know what that is?

Tens?

It stands for, what does it stand for, it's something subcutaneous nerve or whatever. Tens TENS that's initials. What is it is little electrodes, a battery, little electrodes which vibrate. Basically even though it's scientifically accepted it actually works sort of like acupuncture principal in a way and it does for some reason it vibrates the nerve endings and manages to relieve the pain. People use it for back pain a lot as well.

Where did you find out about that?

I had read about it, I had, over my sort of search for help I had contact with all sorts of people. There's a Pain Association and they sent me a lot of information which was probably where I heard about that. When I went to pain clinic they went through all these various things further injections which was one of the options which I didn't want to take up and drugs as well. I mean I don't want to keep on taking pain killers all the time obviously. This was one of the things they suggested, I tried it and it actually left me with it to use when I need which is great. 

Describes how her emotions were very up and down after her hysterectomy because of hormonal changes.

But again I know now that a lot of the feelings you get are just partly the effects of surgery anyway on your body, and of course having an instant menopause basically having your ovaries removed, that affects you as well. Because of this Bank Holiday had happened, the labs were closed so I didn't get the results of the tests, on whether I'd need any further treatment till the day I was discharged I think, or just before. So it was nine or ten days before I knew if I still had cancer basically, so that was hanging over me all that time. But then when I did get the results, I mean first of all I was absolutely euphoric, there was this wonderful thank goodness I haven't got cancer any more, this is fantastic. And then almost immediately after that my emotions sort of seesawed the other way and I was feeling very upset because I was still in such a lot of pain and then I felt guilty because I was still in such a lot of pain and then I felt guilty because I didn't have cancer and so I shouldn't be feeling upset I should be feeling really happy (laughs). So it's this big seesaw of emotions which is natural I know but it was hard to deal with. People couldn't understand why I was so upset really about things, because all I've got to do now is get better, that's fine, everything's wonderful again, I'm cured and that's that. But it didn't feel like that at the time.