Interview CC25

Age at interview: 27

Age at diagnosis: 25

Brief Outline: Diagnosed in 2002. Treatment - 4 chemotherapy sessions alongside 20 radiotherapy sessions on the pelvis and 25 sessions on the para-aortic area. Followed by 19 hours selectron (internal radiotherapy). Total pelvic exenteration - June 2003.

Background: Management Accountant. Married, no children. Ethnic group' White-British.

Describes her feelings the morning of her pelvic exenteration operation.

The morning of the operation they woke me up early about 6 o'clock and I went and had a bath and then I came back and sat on the bed, and it was then that I started to cry and the tears came, I hadn't really cried before then but the tears, I was just sobbing and thinking this is the last time I'm going to be this person, it's going to be the last time I'm going to look like this.  So that was quite hard.

So you were feeling that this, that they were taking away parts of you?

Yeah that was the last time I was going to look, physically look the same, you know things were going to be different from now on, I wasn't going to be able to go to the toilet the same, there was going to be no interaction sexually any more. It wasn't until that morning that the reality really hit, that I was going to be different, a different person.  So that was quite hard. And I remember the trolley coming for me dead on half past 8 and he came down and I don't know from when he got there I started being joky and jovial.  I thought no point going down there negative. This must be hard for the people involved as it is for me so, you know I was quite joky.

Her first six weeks recovering from her pelvic exenteration surgery were difficult.

I was discharged home after three weeks and a day and I went home and I just went down hill really. It was really hot because it was in the summer so I was dehydrated, even though I was drinking because I wasn't eating, I wasn't getting my salt so that was making me sick even when I was just having something to drink. And I was malnourished because I wasn't eating and I just got really poorly.  

So after two weeks at home I re-admitted myself to hospital and I was in for five days and in them five days they took me down to the theatre and they drained the abscess on my bottom, which made me feel a lot better because that smell went. Huh.

So you came home with that as well?

Yeah, I went home with that, yeah. So they drained the bottom, which meant the smell went which made me feel much better. It was much more comfortable for me to sit as well.

And they rehydrated me and everything and I finally started to be able to eat, I started to feel better. They changed my tablets. Some of the painkillers I was on were really, really strong and they were making me just sleep all the time and making me feel sick and they changed all my tablets around. And I started to feel myself.  And for the first time I walked outside, so this was nearly six weeks after the operation and I finally started to walk a bit and walk outside and start to get my confidence back a little bit. And it was the turning point really.

When I went home because I'd had the abscess drained it meant that I had to have my bottom packed every day as well. So every day I was having the district nurse come to change the dressings on my stomach, from my wound that was healing, and to pack my bottom because that was a wound now that needed to be healed as well. So that was a bit of a nightmare really.

That must have been quite hard?

Yeah, having them every day. Yeah and it was uncomfortable, it's not nice to have your bottom packed.  But as I started to eat they, they started to heal quicker.

Yeah it was just really strange for a long time, I never thought I was going to recover. But after six weeks and after being re-admitted it was just the turning point really.  I got my mum to take me in to work to see all my old friends in the wheelchair.  And I just started to want to see people again, before that I wouldn't see anybody and it just changed. 

Using colostomy and stoma bags became easier and didn't stop her doing her normal activities.

Yeah, it's not easy and you do have accidents, no point in saying you don't because they happen. But you learn to deal with them. And as time goes on you get in to a routine, you get into a way of dealing with things and it just becomes part of your life really. At first there's a big hold up around it but now it's just normal and it's part of your daily routine.

How does it affect your daily life, in terms of, particularly the bags, in terms of the things that you can do, maybe going out and doing activities?

At first you are scared to do them different things and the activities but now you know that you can do everything that you did before. You have to be prepared for things. You have to have a change of bags with you at all times just in case your bags need changing. You can still go swimming, you can still take exercise. You can do everything the same.  

If something made you a bit loose on the toilet before, it'll make you a bit loose on the toilet now, which just means that you need to make sure that you have extra bags with you. You can still do everything the same but it's just building that confidence. It doesn't happen overnight, it just comes with time really. And trying different things.

And what different things did you try?

I tried different bags to find the ones that I felt comfortable with really and once you find them ones you want to get comfortable with, it's then getting used to, to going out with them and changing your bags in a public toilet and things like that but once you've done it once, each time becomes easier. You get used to what you need to pack in your bag to take out with you.  And I bought myself a bag that I take with me. I changed my handbag so I can have them in my handbag so it doesn't look like, it doesn't look odd that I'm going to the toilet with supplies and such like. And you soon get used to it.

She built up her confidence gradually before she went back to work after her pelvic exenteration.

Yes, just before I went back to work I started to get involved in things. I started going in to town shopping again. I started going out again with my husband to the local pub, for dinner or things like that, things that I was scared of doing, going out for a meal, you wondered if you had an accident or things like that. I just started to build that confidence gradually.

I went to a friend's wedding. Unfortunately I had an accident at my friend's wedding but it was fine, we sorted it, we dealt with it. It was just all about me building confidence before I went back to work. I visited people, we went for lunch and learning to do them things, learning to drive longer distances again whereas rather than just popping here and there, doing longer spells at things. And I just built on it really. Just ready for going back to work.

Her work colleagues were very supportive when she returned to work after her pelvic exenteration.

I actually went back in to a new position, which was a bit of a promotion for me. It was in a different building in a different location so some of the people knew me and some of the people didn't, which was quite good for me because it was my decision if I wanted to tell anybody or not. But I went, I had the operation at the beginning of June and I went back to work part time at the end of September and I had initially been told it would be probably a year so I was quite pleased that I was back early. And by Christmas I was back full time.

And it was strange you know being back at work, making sure you had your supplies and everything. But my work had been really good and really supportive and I've told my colleagues what I've got, so if an accident does happen or if I need to rush to the toilet they know why. But they're really good and they're really supportive and, and when I have a check up they always ask you know 'How did it go?'  'Oh fine.'  You know. And they're interested as much as anything.

You can live a full life after total pelvic exenteration surgery.

I think you will always have the times or the bad days when you get upset, you get angry, why did it happen to me, why, what have I done wrong, why wasn't it picked up sooner, why, you'll always have them days where you'll get a bit down and think why do I have to deal with this. But it is once in a blue moon that it happens and ninety-nine percent of the time I'm just living a normal life and nobody knows I've got my bags. Nobody knows I've had this operation unless I tell them and you just carry on as normal.

You can be completely normal and live a full life. You know I've been abroad now. I've been swimming abroad. I've been on a aeroplane with my bags and everything. I've been to concerts, I've been having meals out. You know all the normal things that everybody does in their normal day life. You just have to plan a bit more than what you usually would.

Recovery from pelvic exenteration is hard work but you can live a full life afterwards.

It's hard to say 'don't worry' because you will worry you know it's a major operation and even when you go down you don't know if they're going to be able to do it or not, you could still be terminal and I know how that feels. I've been there. But if the exenteration is successful you can still live a full life, you can be normal. Recovering isn't easy, it's hard work and you do go through a real rough time but it's certainly worth it because it gives you your life. And it does cure you.