Interview OV23

Age at interview: 53

Age at diagnosis: 52

Brief Outline: Ovarian cancer diagnosed in 2002 following abdominal swelling. Treated by surgical removal of ovaries and womb followed by chemotherapy, complicated by kidney problems.

Background: Teacher, married, two adult children.

Realised what her diagnosis was after reading the ultrasound report.

So they whipped you into hospital and gave you a complete hysterectomy, and at what point did they give you the diagnosis?

Well I have to say that I knew, I knew as soon as I had had the ultrasound because I was in with the radiographer and he was doing the ultrasound and I could see this huge mass on the screen and he gave me the report to take it straight to the doctor and it said 'papillatory projections, pathology required'. And so when I took it into the doctor, realised the speed of everything.

That night at home I just had kind of like one of those 'aha' moments where I kind of woke up bolt upright in bed and said 'oh my God I've got ovarian cancer'. So it happened in such kind of a lightening-bolt thing. So I ran downstairs and grabbed all of my books that might have something relating to that and read everything I could and, you know, I knew then, and after that time of course the doctors say 'well we have to do the pathology reports before we know exactly' but even when I was in the hospital after I'd had the radical hysterectomy, you know, I pretty much knew that it was ovarian cancer and then they kind of just confirmed that.

Attributed her symptoms to mid-life changes.

Sometimes it's interesting to examine the causal links, like for example there was no ovarian cancer in my family and ovarian cancer is called the 'silent killer' for a reason because, you know, I think women always have pains and because I was reaching menopausal age I really kind of thought these pains were related to my ovaries drying up or, you know, your body going through the change because you expect that. You think 'well of course, you're 52 your body's going to go through change' so you tend to incorporate those pains and not necessarily think that they're linked so something that's, you know, worrying.

Describes the process of being given chemotherapy and other drugs to minimise unwanted effects.

Yes it's a very long process actually because you go in about 9 o'clock in the morning and then they have to do routine blood work and then they analyse that and then they put all of the, I suppose, components in to figure out what you are going to be getting that day, and they have to put in anti-emetics and steroids.

You get those first and then you get a main drug say like carboplatin, and that takes two hours, they have to do that separately. And then they have to maybe put something else in first, another bag of fluid and then they'll start the Taxol. But it is a process from say 9.00 to 6.30, 9.00 till 7.00 at night, I've been there quite late.
 

Had a tube inserted to drain urine from an obstructed kidney to a bag strapped to her leg.

And when I had an ultrasound at the beginning of February they found that my left kidney wasn't draining, and so basically all of the chemotherapy that was going into my system - anything going into my system - wasn't draining, it was just sitting there in pockets, and so they halted the chemotherapy after two sessions to try to resolve the kidney problem and they did two surgical attempts to put the stent through the ureter so there would be drainage into the bladder but both attempts were unsuccessful.

I was kind of awake during the surgery and it was kind of like they hit a brick wall, the doctor described it as scar tissue but I'm not sure that that's what it is and I don't know if they know what it is, so in the meantime I've had to kind of adjust to having a cable, an open wound in my back and a leg-bag that drains everything from that kidney and that's kind of been, is probably as equal and traumatic as definitely going through chemotherapy.

Reacted calmly to her diagnosis and decided she just had to deal with it.

As soon as I was diagnosed I was able to say 'I have ovarian cancer' and I think you've got to be able to admit it to yourself and not be afraid of it because, you know, it's just part of life. And I think because I was able to talk about it and, you know, not feel this, I don't know, shame or embarrassment or anything, I never really fell into like a depression or anything like that because it was just kind of assimilated into my life and you just get on with it, it's just part of the journey.

Experienced hot flushes when she entered the menopause as a result of her treatment.

The only negative is going into an instant menopause, that's been the hardest symptom that I've had to deal with, that's better than, that's worse I should say, than all the effects of chemotherapy, because, you know, it's just that heat and that lack of control, and I know it's your body's thermometer, but you don't realise how that thermometer, if it's not working, can be just so extreme, and the effects of chemotherapy, you know what's happening, but the trouble with hot flushes is that they just can come at any time and they can be so awkward because you just don't know when to expect them. 

And you'll be talking to someone or in a situation where you are meeting people and you feel like you're wearing a neon sign, even if you are shopping and it happens you just think people are looking at you like 'what's wrong with her?' Because that's what it does to your body, it makes you feel that incredibly affected, and I think with a radical hysterectomy, because they've taken everything out, it's probably much more pronounced than it would be just to go through a natural menopause.

Accepted that she might die from cancer but didn't want a lingering death or have others being responsible for her.

So realistically I have to think well ovarian cancer will probably be the demise of me but I don't know when and I think you, everyone's like that, you know, we're all kind of like going to an end eventually, so that doesn't necessarily bother me.

I never thought of myself being sick though and I certainly don't want to live years of being incapacitated or having other people have to be responsible for me. So if I had a fear it would be that, where I would be too sick to do anything and like linger on for years, I wouldn't want that. I hope they approve euthanasia for terminally ill patients actually, less drain on the NHS as well.