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.

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.

And then woke up and the doctor was at the end of the bed saying “Everything went well, nothing went abnormally, you didn’t lose any blood, and were going to take you up to the ward.” And I remember I just felt very like somethings had been done down here and it felt so intrusive. I expected me to be not really in pain because I thought the drugs would be so strong that I wouldn’t really be in pain but I was. I mean God knows what it wouldve been like if I wasn’t on morphine or whatever I was on. But it really felt oh God as I was being taken up in the lift. And there was a little bump and it just felt, oh God it just felt so awful. And I remember feeling glad though that it was over and I’ve had the operation. It’s done now and I just need to get better and that kind of thing.

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, shed 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 volterol, they do try and if I rang and said that I’d had pain they would bring me something.

The anaesthetist comes and gives you the option of having, I don’t know what they’re called but they’re machines that will deliver morphine on your demand after you’re hooked up to it and you can actually press the button to give you pain relief by morphine after you’ve had the operation. Which you think is a fantastic idea and it’s only afterwards that you discover that morphine makes you feel sick as a dog. And nobody tells you that, nobody tells you that slightly useful bit of information. So you go through about a day of feeling sick as a dog before somebody says “Oh it’s the morphine,” and I then decided to stop using the morphine and just let me them use some other perfectly good pain killers which apparently are actually anti inflammatories as well so they’re really good. They can actually use other tablets which are good pain killers and have anti inflammatory properties. So they give you information by which to make an educated choice but they don’t actually give you the whole story which I always thought that’s the one thing I’d tell people, don’t use too much morphine because you’ll feel dreadful and theres lots of other ways they can deal with the pain.

I think on about the third day I think I said ‘I must get up, I have got to wash my hair. And they said ‘No you can’t, you can’t. And I said ‘I am getting up and I want to wash my hair. So they did help me and I got up and I could wash my hair because by then I was a bit more with it but I was feeling lousy and I wanted to feel better so I made them get me up and wash my hair. Which is ridiculous, but. And then after that I think as the days progressed you sort of, I think the third, maybe the second day I was allowed, no maybe the third day, I think I was allowed a cup of tea and the only thing I ate, I don’t think I ate anything actually for about maybe five/six days. And as you became more with it you could actually get up and get out of bed and try and get dressed and walk around and do a little bit. And it, it wasn’t too bad. Actually waking up in the morning and because you’ve got a catheter you didn’t have to get out of bed and that was quite nice actually, I have to say.

I wouldn’t say its painful. Its just the most peculiar sensation because its obviously quite a long tube and they pull it out, its sort of, I think I had one in my sort of hip bone area and they were drains. And then they come in and say ‘OK today were going to take this drain out,’ and they will just press your stomach and pull it out and it would be like having a piece of spaghetti pulled out and you can feel it, wiggle, wiggle. I wouldn’t say it was painful I would say it was an unexpected sensation, that’s all.

And really coming home I didn’t really have any problems. I think I’d been very conservative in what I do and again not having kids I mean it’s very tempting I’m sure to lift stuff, do things, when you’ve got kids they’ve got to be looked after. In my case it was just my husband and the pets it’s not such a problem and you just make the partner or whoever do all the things that you shouldn’t be doing. That’s what you’ve got to do otherwise you prejudice your recovery. And I know of at least 2 people who’ve had hysterectomies who’ve ended up going back into hospital because they’ve just done too much, they’ve pushed it too much and gone and done aerobics. I mean even after like 3 months. I’ve just gone back to work after 3 months off and I think I needed every day of that 3 months. And my doctor, at one stage I saw one GP signing me off again and he was saying “Oh some people go back to work after 5 or 6 weeks,” and I thought gosh I can’t go back to work now. I don’t feel ready to go. And it is a bit tempting to think oh I must be making a fuss and I should go back to work. But don’t do it because if you get sick pay and all the rest of it then it’s just not worth it because in the end your recovery will be much better and much quicker if you just take it easy. I walk quite a bit and that’s fine, walk as much as you like that’s not going to make any difference to your recovery it’s good. But going and doing aerobics and gym work and lifting the kids up and down and doing all this sort of stuff before you feel really ready for it, it’s just not worth it. So in the end I’ve had no real lasting physical effects at all. It’s a bit of a shock when you look in the mirror in profile of your stomach I’ll tell you that much. Because you think blimey I had a very small stomach before and now I’ve got this sort of like double decker affair, sort of like an inverted sort of double decker looking thing and that’s a bit of a shock. But it must be very tempting for people to rush out and start doing sit-ups and going to the gym and things because they think my God I’m completely going to pot. But again it’s like you just take it slowly because the scar is going to change over time. And I think you do need to do some sort of exercise to get it back but 3′ months after my operation I’ve got no intention of starting to do anything too vigorous yet it’s just not worth it. You still get the odd twinges just doing things, just general things. So I’m still careful about how heavy things are when I lift them and just having a bit of a rest.

Going back to work again, I wish I’d gone back part time. I did go and see the occupational therapist but I thought I was going to be fine. And I’d had three months and one week off but I was so tired after the first day, the first full day. I also felt a bit guilty that I’d had too long off but the advice I’d give is don’t feel like that because you really don’t want to rush back as soon as you can sit at your desk. You, it was psychological as well as physical getting better. And so the fact that the last month I was going out on my bike during the day, I needed that to get stronger because like I say after the first day at work which is an office job I had the following day off as annual leave because I was just so tired. I should really have gone back, phased going back, I should have done like four hours a day for a week, that kind of thing, but I didn’t I went back full time.

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, everythings wonderful again, I’m cured and that’s that. But it didn’t feel like that at the time.

The catheter came out and that was after about six days, five or six days and from then on you have to monitor how much you’re passing, obviously to make sure that everythings working OK. And it was OK at first but after the first day they said I wasn’t actually passing enough and, compared to what was, my intake. And so I started to have these bladder scans and that revealed that I had a lot more liquid left in my bladder than I really should have done, so they were going to put another catheter in which was a bit of a nuisance because that was the day I was supposed to go home and that’s when they said to me ‘Oh you can go home with it. I don’t want to and I didn’t want to so I stayed in yet another night and they still wouldn’t do it so that’s when they came up with this valve. And so I went home, I think it was for three days when they asked me to go back then, so I was actually going back to the ward. I was still under the ward and then they’d be monitoring me. It was four, I had four catheters in and out altogether over a few weeks. But I mean it did settle down and I didn’t really have any inkling that there was that much of a problem by the way I was feeling because I did go to the toilet on my own and I did think I was doing it all, but this scan was showing up something obviously not the same.

And when did that all sort itself out?

Probably about a month after the operation so a few weeks, yeah.

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 “were 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 “Well 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.

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.

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. Theres 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.

So I arranged a holiday just with my husband, going to Tuscany, doing a bit of sightseeing and walking as part of a group. And I’d started going back to the gym after the operation, obviously gradually, and I was doing OK, although my left leg was, it stiffened up when I did exercise. And I told the consultant and he said ‘Oh well it could be that your channels are finding new ways,’ but he said ‘It’ll get better. So I didn’t worry too much, or find out very much. And I went on this holiday and it involved doing some walking, obviously and no sooner had I set off walking and my leg began to hurt and over the period of the week, well over a few days it really expanded and it was painful and it was very, it was like it weighed twice as much as the other one. And it made walking difficult, and I didn’t know what it was, and so yes I was worried that it was cancer. I just didn’t know why it had swollen up so much and it was really tight because it had swollen the skin was really tight, my muscles were tight and I was miserable. And I didn’t tell the other people on holiday I’d had cervical cancer because I didn’t want to be treated differently. And so I came back from that holiday, which wasn’t a holiday. I wanted it to increase my confidence so that I felt like I was getting back to my normal life and I was sort of “normal”, and it just did the opposite, it took away my confidence. And I had my normal appointment with the consultant a few days after I came back from holiday and he said ‘Oh yes it’s the lymph fluid that’s collecting there, I’ll take it out. And so he inserted a needle, which wasn’t painful, gave me a little local anaesthetic and took out about a coffee cup full of fluid which I’d had in me from going on holiday, which had blocked the whole lymphatic drainage system. So no wonder my leg had swelled up. But I didn’t know that, no one had explained to me that this was happening.

I also went to my own GP and said ‘my leg has got stiff I’m having problems with it. And he said ‘I’ll send you to physiotherapy. Now the local hospital just down the road contacted me within a few days and made an appointment for me. And they said ‘Oh yes, its your lymphatic drainage,’ because I told them about having the fluid out and ‘We need to massage it,’ and I was then going twice a week. But by then I was back to work, so it wasn’t easy to go twice a week. I went twice a week for about four weeks and they taught me how to do my own massage, but not lymphatic massage, that’s a different thing. It was actually just fairly, fairly vigorous massage but with the onus on going upwards and trying to get the fluid here moving around my body and not accumulating and causing a blockage, like plumbing, they did explain that. And it was good to go really, it did make a difference. And then I went down to see them once a week and I don’t go anymore now. I was taught how to do that myself. But at the same time I was waiting to see the lymph nurse and it ended up being about two months. I went to see her and she said well I would need some support stockings, well really just one for my left leg, which compresses your leg and helps the drainage.

It’s surprising, because its swollen as well you can’t get in your trousers. I could wear skirts but the trousers just couldn’t bear anything on, around the scar area. But obviously as time progressed a little bit I was able to wear trousers but certainly not jeans. Oh God no, anything tight like that, it was, well I couldn’t, just couldn’t, couldn’t even zip it, oh it was horrible. So it’s taken me what, were into March, it’s taken me a good ten months to be able to not feel a lot of pain so I could wear the jeans. Because obviously jeans aren’t giving are they, they’re denim, they’re thick material so yes I’m quite sort of pleased that I can get a pair of jeans on again. It sounds daft but its amazing. I was a trouser wearing person and for oh gosh a good six months I only wore skirts. So it affected, even that affected me. It might sound something and nothing but it does affect you. It does affect you and the swelling, very, very uncomfortable.