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Interview OV20

Age at interview: 41
Age at diagnosis: 38
Brief Outline: Ovarian cancer diagnosed in 2000 following abdominal pain and bloating, painful sex and bleeding afterwards. Treated by surgical removal of tumour, chemotherapy, then removal of ovaries and womb and more chemotherapy. Further surgery to repair a hernia.
Background: Mother, married, one child.

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Criticised the ward environment.

Criticised the ward environment.

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And what was sad whereas with the local hospital I'd been put in the gynae ward, which was quite sympathetic and, you know, a lot of women were in the same boat in that they were having hysterectomies, we were put on, well I'm not really sure what the ward was but it was to do with bladder and bowels, and it was the most unsympathetic ward I'd ever been on. Not that the nurses or the doctors weren't, it just seemed an inappropriate place to be. You know, it's a mixed ward as well and I just remember things like the smell was hideous, you know, it was quite insurmountable at times. But, you know, you get through that. And again, you know, people jollied each other along.  

 

Explains her anxiety when waiting for results of blood tests before being allowed the next...

Explains her anxiety when waiting for results of blood tests before being allowed the next...

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I'd say the hardest bit of the chemotherapy was the waiting with each session because at this particular hospital, I don't know if it was the same at all hospitals, but you had to turn up and you had to be declared fit by the doctor before they would prepare the chemotherapy. So the wait was a bit unnerving, you know, you'd think 'well I'll steel myself, this is something I've got to go through' but that hour's wait before the chemotherapy drugs came over was often, you know, just a bit unnerving. The urge to run off was great I have to say. But they were great in the chemotherapy suite so it wasn't too bad.  

 

Developed a hernia after her hysterectomy and needed another operation to put it right.

Developed a hernia after her hysterectomy and needed another operation to put it right.

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Now unfortunately with that operation I did end up with a massive hernia which wasn't diagnosed till a bit later, till I think in the January. And I remember coming out of hospital and thinking 'gosh I really am numb, I can't feel part of my abdomen, and as it turned out the reason why because it was intestine, you know, I couldn't get any, I can't think of the word, anyway at all, sensation there.  

So I then had to go on and have another operation a year later. But by that time so much of the intestine had spilled out behind the muscle wall, that it ended up quite complicated. And I mean I just looked so perverse, I really did, it was, you know, it was as though I could never leave the cancer behind, because I ended up with this comedy body as we used to call it, and still do a certain degree.  

So last Easter, not the Easter just gone, in 2002, I had what was hopefully the last operation to repair the muscles. But unfortunately because so much had spilt out it ended up quite complicated and I now have meshes in my abdomen.

 

Her doctors seemed relieved when she chose to have a hysterectomy after having her ovary and...

Her doctors seemed relieved when she chose to have a hysterectomy after having her ovary and...

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The hysterectomy, I remember we were in this room with the surgeon and the oncology team and, because all this happened at the time when there was a lot of news reports and cases brought against gynaecologists, and he was saying about "well this is the chemotherapy you need and, you know, you might want to look at a hysterectomy," but it was the way it's put "you might want to look at a hysterectomy." And then, you know, you dig a big deeper "Okay well what's the best way of walking way from this? So if it's going to be awful and sheer hell for a year as a family, how are we going to, how am I going to create the best chances of us walking away from it all?" 

And, you know, it's like "Well you don't have to do it but, you know, to have the hysterectomy and to lose the next ovary would probably be the best thing, but the choice is yours." And there was a reluctance to turn round and say it purely because there was all this litigation in the news at the time. And so it's like 'okay well I really think the only way round it is to have the hysterectomy' and as soon as I said "Yes we'll have a hysterectomy," they all went 'phew', you know, because it was just so bizarre, you could see the relief, it's like okay well that is the best decision.  

 

Had been trying to have more children and was upset at losing that chance.

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Had been trying to have more children and was upset at losing that chance.

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I found it very difficult as an issue having the hysterectomy, it made me very much feel like I was a chimera, a woman of childbearing age who wants to have children, not able to have children. I think it's a different issue when your body goes through the menopause than if it happens so brutally. You know, everybody comes out with silly phrases like "Well it's your best chance of survival," which is true, it is the best chance of survival, but you've already dealt with that yourself that it doesn't help you feeling less of a woman, you know, it's, I'm trying to think of the phrase, I could no longer fulfil my genetic imperative, but then not everybody wants to have children. I can't give my daughter a brother or sister. 

I never thought, having been a very busy career person, you know, it comes as a shock that I feel so strongly like this, seeing the woman in one of the super-store adverts there with all her daughters, you think 'gosh I'm never going to have that'. But thank goodness I do have my daughter. 

 

Felt the baldness, weight gain, scars and hernia after her treatment combined to form a 'comedy...

Felt the baldness, weight gain, scars and hernia after her treatment combined to form a 'comedy...

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So on top of being bald, overweight, oh at my worst I was fifteen stone so I was charming, and it's taken forever to lose any weight since. I also had this enormous bulge. I have intestines that had just escaped through the muscle wall, so it wasn't particularly attractive and I wasn't either. 

As far as the surgery goes, I mean that's such a big issue, that's quite a difficult issue. I looked grimly fiendish with my clothes off, and the fact that, you know, I was left with this hernia for such a long time that got bigger and bigger, that this comedy steroid body looked even more bizarre, you know, not being able to wear any clothes. And I thought 'blow me I'm not going to go and buy enormous clothes', you know, because somewhere in the back of your mind, you know, 'I'm going to have an operation, I'm going to look at lot thinner'. Well the reality is not as such, you know, because you've got the effects of the steroids and also, you know, it's a long time before your body recovers from the surgery, to get back to a more normal size. I mean I'm still a very big size but that's something I'm working on. 

 

Describes how she and her husband explained to their three-year-old daughter about her illness.

Describes how she and her husband explained to their three-year-old daughter about her illness.

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So how old was your daughter?

Three at the time, she's now six.

And what did you tell her?

Well the way we put it to her was that mummy had wonky cells and these wonky cells had made her very poorly. Because she was still quite shocked by the fact that mummy was in hospital, or had been in hospital. And I remember when they came to see me the following day after the operation she just stood there going "Mummy come home, mummy come home," and it was quite heartbreaking because she just couldn't understand. It's a big thing. I remember her even turning round and saying "Daddy will go back to work and you come home," you know, so she just wanted to get a bit of normality. And she couldn't understand why I was there and why I wasn't at home.  

And my husband was great because he said "Well do you remember on Animal Hospital how the doctors have to, you know, perform an operation to make the animals better? Well that's what's happened with mummy," and you know, and it was just a real Godsend because then immediately she could understand and she wanted to see where they'd cut me. And you were thinking 'oh no, no, no', you know, and then you thought 'well maybe it's better then she can understand' and, you know, after that she sort of realised that things weren't the same.  

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