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Interview 18

Age at interview: 33
Age at diagnosis: 28
Brief Outline: Diagnosed with colorectal cancer 1996. Under went surgery, temporary ileostomy and chemotherapy.

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She could not express some of her feelings to her family members.

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I think the whole, the whole year really after diagnosis and surgery was a very, very difficult year and it took a lot of encouragement really and like my husband was really fantastic and very, very supportive and had quite a lot of time off work to, to be with me.

And a lot of the time I had family at the hospital as well, so I did have a huge amount of emotional support, but it was all from, from family and friends.

And there was something also quite frustrating about that I think in that I couldn't say certain things to them like worrying about dying or sort of the, the bleakest things without them trying to make me feel better. And that was very hard, that made me feel quite angry really, that I couldn't express myself, you know how I really felt without really upsetting other people.

It was different with different people because certainly with my husband I could talk about fears and things but it so directly affected him that that was really difficult. You know I felt like I couldn't sort of go on about it because it would hurt him too much to hear it really.

Certainly with my mum I felt like she couldn't cope with it basically, like she was so upset herself. And I mean there was a whole different variety of responses from friends really but I suppose what I, I did really feel like there was nobody I could talk to about how desperate I felt sometimes and how fearful I was without seeing them get really upset. And I felt like there needed to be someone more outside of the situation.

 
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She was too debilitated by chemotherapy to go back to work.

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That was quite a low point then really, sort of starting chemotherapy and I had my chemotherapy, a continuous infusion of chemotherapy with a drug which wasn't supposed to be, like a really strong chemotherapy drug, but I actually found it very debilitating. I really couldn't do much.

You know I was told that I might be able to go back to work but there was no way that I could have worked whilst I was having chemotherapy. I couldn't do very much at all.

And I had quite a lot of side effects. I didn't lose my hair which was something I was really worried about but I was quite sick and I lost my appetite and I lost a lot of weight and I didn't, I didn't have much will to live at that time.

 
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Recalls how frightened she was when she woke after surgery.

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It was very frightening in intensive care in the first few days after the surgery.

All the monitors, all the noises and the beeps, and I kept thinking "I'm gonna die" because of the beeps going funny and you know "Why is the alarm going off?" And then you can hear, you know there was a man next to me who was on a ventilator and couldn't breath and they kept having to come and like resuscitate him and it was just all really alarming.

And having all these different tubes coming out of me in different places. It was very frightening coming round from the operation and just, I remember like they were rigging it up basically, they were still putting things in and talking and heard them say "She lost a lot of blood in theatre and we've got to get the blood up," and you just kind of hear all these things and I couldn't really talk, because I'd got a pi, you know a tube in my mouth. And, it was scary, yeah, very scary.

 
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Her epidural fell out and she had difficulty getting the situation resolved.

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It was really difficult actually because I remember I kept on having to wait for top-ups of the epidural. And the anaesthetist kept being somewhere else so it was taking ages to get this thing topped-up and in the end I suppose because I told people I was in excruciating pain even though they were topping up, that's when they realised and had a look and saw that it had come out, by the end, it had actually come out and it was at night time and it was night staff and it was really difficult to get somebody to come.

I suspect part of it's down to me, part of it's down with how much fuss I didn't want to make basically, I didn't, you know I didn't want to scream, I didn't want people to sort of get really upset about me and, and that sort of thing, that I think I would do differently another time.

Once the problem was discovered how was the pain management then?

And then it was much better because then it was, it was changed to pethidine injections and, and they were effective. I mean that's what should have been, you know it should have been effective pain management from the beginning. I don't think you have to go through a lot of pain after surgery like that.

So I suppose it was, it was about three days after my operation before I had really good pain control.

 
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Explains how her information and support needs were well met.

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I think that bit was managed really well actually because the, the nurse, the particular nurse, specialist nurse for, was really, she was a really lovely person. And she spent time with me before kind of showing, sort of you know drawing pictures to show me what it was like and what it was, what it was going to look like, where it was going to be.

She showed me the different bags that you could have on them. What I was likely to have to have and then she was around a lot you know, she kept popping in and out sort of before the operation and afterwards.

She was very good on the emotional side as well because she did talk to me about how I felt about it and she gave me lots of encouragement, that I was doing really well with it and kind of, I think she had one herself actually, I think she did.

I think she was actually like an example of someone who lives with it and who was also like, she was an incredibly good looking woman and you wouldn't know, like from looking at her, so that kind of gave me, sort of inspired me really, it was something that I could manage.

 
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Describes why she found her ileostomy disturbing and didn't want others to help her with it.

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It was pretty grotesque really. It was just so weird to have this bit of your inside popping out. Yeah. And also to think that you've got like "poo" on the outside of your body, you know sort of carried with you rather than just got rid of. It was really hard to get my head round that.

I found it really difficult having people helping with that aspect as well. Because I had to have nurses come and change the bag in the, in the first few days after surgery and I, you know I didn't want anyone else to have to do it really.

But anyway, actually kind of dealing with it on a sort of day-to-day basis I did it but I never liked it, I could never accept it as part of my body. I was always waiting for it to be put back really.

And again like I didn't want my husband to like have anything to do with like touching it or you know he wanted to kind of learn how to look after it but I didn't let him, I didn't want him to.

 
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She was left completely alone after her diagnosis.

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OK he probably didn't have a lot of time but there should have been a nurse available to, to sit with me for half an hour and just kind of, just talk or let me be upset or, whatever really, but just to sort of contain me in some way before I left the hospital.

And I think you know that person could then have asked how I was going to get home, did I need to call anybody. Because it was, you know, the fact that I was just sort of left in this really helpless and bewildered kind of state, but it felt like nobody cared about, really.

 
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Medical students were allowed to look at her tumour before she was told she had cancer.

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I went to see my GP and she referred me pretty quickly after doing a rectal examination. She did it in the surgery and she actually said um "You know I'm sure its not cancer."

And so I went alone to the appointment where I was actually diagnosed which I thought afterwards was a big mistake actually, but of course I didn't know.

I then saw a consultant who did another sigmoidoscopy. But it was a pretty traumatic diagnosis for me because he had um, four medical students in the room and he showed them the tumour before he actually told me I had cancer. So whilst he didn't say to them "This young lady's got cancer" he, he was saying "Look at the wavy lines," and, you know it was fairly obvious that they were looking at something quite unusual.

So it was after that that he told me from doing the sigmoidoscopy that I had rectal cancer. The consultant said "We'll operate next week." You know, he said sort of "Go home and cancel your papers and get someone to look after your cats and we'll operate on you next Monday." And I was obviously thrown into shock at this point.

I think that having seen that I'd got cancer it was my right to know as a patient that, before medical students were given the opportunity to have a look. So I don't think that they should have been allowed to look at that point without me knowing what was going on.

 
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She wonders whether a traumatic experience earlier in life could have played a part in her...

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You know I don't, I've kind of thought about sort of traumatic things as well that have happened, a traumatic thing that happened in my childhood when my parents separated and somehow that might have somehow got kind of translated into bodily symptoms as well and I think that sort of plays a part maybe in when it happens.

I think it was going to happen you know but when it happens I think can be kind of emotionally affected. But I don't wanna go too far down that road because I feel like that very easily gets into like self-blame actually and, and doesn't feel particularly helpful really.

 
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She feared that chemotherapy would leave her infertile until an alternative drug was proposed.

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When I was still in hospital after the operation I saw an oncologist there and he said that I needed a particularly strong kind of chemotherapy treatment because of my age basically, and because of the type of tumour and that would have made me infertile.

So for about a week that's what I thought I had to have and I thought that I was never gonna be able to have children and that was a really devastating time actually. But again I was persuaded to go for a second opinion, which I did, more locally because my surgery didn't take place close to home, it took place in another area so then I sort of came back to nearer where I lived, to a specialist cancer hospital and saw somebody who, who just didn't, who had a very different opinion about it really. 

And was again somebody who was quite, doing a lot of research in the field and thought that I could have this, this type of chemotherapy which would make me stop ovulating, but temporarily and that, you know, it was thought that my fertility would go back to normal again after the treatment.

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