The patient, an IT consultant with no children, was diagnosed with cervical cancer in 2001. She had a radical hysterectomy as well as have some lymph nodes removed.
This interview has been sourced from healthtalkonline.org, award-winning research into patient experiences in conjunction with the Health Experience Research Group at Oxford University, UK.
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Explains that she experienced some temporary difficulties rebuilding her sex life after her radical hysterectomy.
When we first tried to make love again which was probably about three months after I had the operation and it was very difficult, I was very dry and small, but yes, yes I felt very upset about that. I felt that my sexual being was no longer there. Because I'm fortunate enough to have somebody who's very gentle and understanding and we, we persevered I suppose. Because my immediate reaction was to think oh well no point then is there but we felt that we should try again and once things started to become more normal and we were able to start making love more regularly and it started to feel more normal then that was fine. It was a big relief to me.
I suppose I was sort of hoping that it would be almost back to normal immediately and it wasn't. It took a little while and then everything was fine. Because I think it was the nurse when I talked to somebody about it, the nurse about it, she said that the vagina does stretch and it will stretch and everything will feel okay again. And indeed that was the case.
She explains that she experiences less intense orgasms after her hysterectomy.
One thing that didn't go back to normal, and obviously never is going to be normal, is that, and I'll be very frank here, I know some women might not be as frank. Some women have orgasms from the womb and I have realised since my operation that I was one of the those women. It hasn't stopped. I mean I can still have clitoral orgasms but the other type of orgasm is very deep and very satisfying and I think not all women have them and I miss them . But they did say, I mean the nurse had said "You will still be able to have a sex life but it will feel different," I didn't realise that that was what she meant. I would've liked to perhaps have understood that a bit more. But then I mean I think I'm an intelligent woman and I know quite a lot about my body and I hadn't actually realised until after the op that I had orgasms from the womb and obviously anybody who has even an ordinary hysterectomy that is going to disappear. So it took a while and I mean I'm lucky, well I say I'm lucky I have a very patient loving understanding man. We are able to talk about sex, we always have done, so we were able to talk about it. I was able to say to him "I'm very upset," and he was very reassuring and saying "No don't worry about it, it doesn't matter." Even after the first couple of times he was saying it doesn't matter when I felt things might never get better, they might remain sort of pretty grotty. He was very reassuring and very loving so I'm very lucky in that way. It's obviously important if somebody is in a relationship for them to talk to their other half about it.
She explains that cancer was an episode in her life which is now in the past.
I suppose you know if a woman is looking at this site because she's just been told she's got cervical cancer what I would say to them is it's definitely not a death sentence you know if they've caught it now and you know you're going to go in for the treatment and everything then the chances are that in a years time you'll feel exactly the same way as I do now, that you know it was something that happened, it was a part of your life but it's not, it's over, it's done with and get on with the rest of your life.
She asked her doctors questions about the side effects of treatments.
As I say I think they were pretty good at explaining things, the doctor, the senior registrar was very good when he explained all the different things that could go wrong and I said "Do you always tell people this," and he said "No people don't normally ask." I thought that was interesting because I can see why they wouldn't want to give people horror stories but at the same time I think people do generally like to be aware of things and with many people I think that if they explained or if they said there are potential risks with this operation. Obviously the biggest risk is if you don't have the operation you're going to die but if you talk about the potential risk I think most people that I know anyway, certainly women, and most of the people that I know would rather know. I wanted to know what the probability was of anything happening, I just felt I needed to be aware of that.
She would have liked more information about how her hysterectomy would affect her sex life.
On one of the appointments, when I went up to have the bowel and bladder investigation a nurse came to see me and asked if I had an other queries or problems. I explained that I was worried about the lymphoedema thing. I also had begun then to worry about our sex life and whether we would be able to continue to have a sex life and in what way it might affect things. She did explain that to an extent. I feel now 13, 15 months down the line that I would've liked perhaps more discussion of that, for somebody to really explain more to me about the fact that they shorten the vagina quite considerably and that in the early stages sex might be very difficult but that it does get a lot better and that everything does go back to normal, almost to normal as it were. So I feel now with hindsight that that could've been done better. But I suppose it is a delicate area and I suppose one would have to initiate it oneself possibly because a nurse might not know how open you might be about talking about your sex life and about sex and so on. It did worry me because we have a good relationship, we've been together for a very long time, but sex is till something that's quite important to both of us, and I felt that I wanted to know what was going to happen.
Explains that she was not worried prior to check-ups because she feels so well.
How did you feel before you were going for your first three month check-up?
Very positive, I felt well you know I felt, I was playing tennis again, I felt very fit, I felt well so very positive yes. And every time I go in there I just sort of breeze in and I would be astounded if they told me there was a problem actually. It would probably knock me back quite hard because I feel fine. I'm not getting any symptoms of anything and I feel well.
Describes how she rang NHS Direct after her symptoms of abnormal bleeding persisted.
In about October 2000 I'd had a period that seemed to go on for a very long time, it was dragging on for about two weeks which was most unusual. However, because I was then 51 and felt that, well 50½ or whatever I was, 51, and you know I was, you know I felt I was probably getting menopausal, I thought perhaps that was normal for a menopausal woman so I didn't worry about it. But then over the next few weeks I had some odd, what I thought of as break through bleeding, once or twice after lovemaking and again I just thought well may be this is normal.
And then at the end of the November I had another period that again seemed to go on for a bit of a long time and I was a bit concerned but not too worried. And then during the December it started that every time we made love I had bleeding and it was. There was obviously something not quite right I felt, but I still didn't feel it was serious enough to bother going to the doctor because I thought well may be this happens when you have the menopause. And I asked my mother and she said she had no idea because hers had happened very suddenly, she'd had a D & C and she stopped having periods and my elder sister's on HRT and most of my friends are on HRT so nobody seemed to know.
And I actually rang NHS Direct because I had had dealings with them a few months before when I'd had sunstroke one evening, I was quite impressed with their help and I asked them what they thought. And it was quite funny actually because I spoke to the same Irish male nurse as I had spoken to with the sunstroke and I thought I'd get put through to a female nurse and he said he'd have to go and talk to his supervisor and phone me back which he did. And he said we think you should go and see your doctor and we think you should go and see your doctor very quickly.
Her medical team's attitude helped her feel positive during her recovery in hospital.
But I felt very positive, I felt good about myself because they were telling me how well I was doing, that, may be they, they probably say that to everybody. As I say the medical team I think the whole way that they work together they know what's going on, they know, you feel that they know you and that they are being very you know friendly without being pushy but you know and that they know your case, they understand what's going on. You don't get somebody coming in leafing through your notes not knowing what's happening, they all know exactly where you are and what's happening and what stage you're at and all that sort of thing.
She discusses the negative connotations associated with cervical cancer.
I read, when I had the dodgy smear and I had the colposcopy I got a book about it and some of the things that they said were starting sex life at a very early age. These are possible causes, having more than one sexual partner, I forget what the other things were.
I suspect most women in the last sort of 30 or 40 years, may be not 40 but the last 30 years, there aren't that many women who meet the person they are going to spend the rest of their life with and spend the rest of their life with one person. There are some of course but I wouldn't advocate sort of blatant promiscuity but I had a broken marriage I've had a few different relationships and I wouldn't see myself as being wildly promiscuous when I was young but nor was I a little nun either. So I don't blame myself for that, I don't sort of sit and think, because I think that's a bit futile really isn't it, what's the point me sitting around thinking oh if only I'd done this, if only I'd done that.
Describes the problems she had with her bladder after her hysterectomy.
Of course the big thrill is when you're ready to come home and that was when I had this major setback because they took the catheter out. They told me I'd be in hospital for about eleven or twelve days, so this must've been on about the tenth or eleventh day, they took the catheter out and my bladder wouldn't work I blew up like a balloon and I could pee but only a little bit and I knew there was something wrong. And so they had to put the catheter back in and I was absolutely distraught about this because I was very concerned that I was going to be incontinent or just have to have a catheter for the rest of my life and I was just so distraught.
I felt that was a major major setback for me because instead of coming home to feel that I'm getting better I felt that I was coming home with this catheter in. So I had that in for a couple of weeks and I found that very hard. I didn't find changing the thing hard, that was easy, but I just felt like an invalid. Instead of feeling well I'm getting better, I felt like an invalid.
And I had to go back in a fortnight later they said they would try to remove it. See how things were going so they said I'd stay in overnight to see whether my bladder worked and I was very worried about it. Very concerned that my bladder wouldn't work. So I went in and they took the catheter out and my bladder wouldn't work and I lay there all night just getting frantic. I didn't sleep a wink. I was so upset I just thought my bladder isn't working, it's not going to work, it's never going to work and I'm going to have to spend the rest of my life with a catheter in. And I was absolutely totally distraught. Phoned my other half first thing next morning in hysterics and said "My bladder is not working," and the nurse obviously had been in to see me and talk to me and the senior registrar came and he said "Look," he said "we're going to keep you in for another night," he said "you can stay in," he said "part of the problem is that you're so upset about it, you're actually causing part of the problem yourself." He said "Try to relax and drink lots." I said "I've been drinking gallons of the stuff." And he said "We'll see what happens." And he was very calm and tried to calm me down. And thank goodness that afternoon suddenly I was able to pee normally. And I went out to find my nurse, I'm not allowed to tell you her name but she was, and she gave me a big hug. So we had a hug because I'd peed properly and I was just so relieved. I felt that when I came home then, the next day, that I could start my recovery properly and I did.
Describes an episode where she had problems with her pain relief after her hysterectomy.
The main thing I remember about those couple of days was the nurses were in and out changing drips and they took the morphine drip out and then gave me a sort of gun thing, it's morphine in it but you can press a button which releases a certain amount of morphine so that you can't overdose and on the second or third night I was in a great deal of pain in the night and I am not a wimp, I was in a lot of pain, very acute pain and I had to ring for the nurse. And she said "Oh I'll get the pain relief people to come and see you in the morning and see what we can do." And then I realised that what had happened was that when she changed the saline drip she had actually caught the tube going from the morphine thing, she'd caught it up in the bandage and it wasn't going through. And I asked her if she would move the bandage. Now she said "I don't think that's the problem," I said "could you move it," and she did and so that was alright then. So when the pain relief team came in the morning I said "No it's actually alright, it was to do with, I'm sure that that's what the problem was." I can't lie and say that you don't have pain but they do try to manage it. They give you the morphine, they give you volterol¹, they do try and if I rang and said that I'd had pain they would bring me something.
(1) Diclofenac is the generic name for volterol.
Source: healthtalkonline.org (Cervical cancer, age 45+, interview CC24)
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Last reviewed: February 2013