Interview OV12

Age at interview: 49

Age at diagnosis: 48

Brief Outline: Ovarian cancer diagnosed in 2002 following abdominal swelling and frequent urination. Treated with three cycles of chemotherapy followed by debulking surgery and six further cycles of chemotherapy.

Background: Special needs teacher; living with partner; no children.

Felt her diagnosis was delivered insensitively.

I went with my partner to see the doctor 2 days later and he told me that I did actually have ovarian cancer. Which I think by then we'd kind of worked out, that it was going to be something like that. And obviously we were both very upset at the time. We then went to see the consultant at the hospital. He was a consultant gynae - cology oncologist and whereas my GP had been very sympathetic and given us lots of time, he thought he was just going to deliver the diagnosis and leave the room.

And we had to work very hard to keep him in the room to answer our questions. He also answered the phone twice in the middle of telling me that I had advanced ovarian cancer. So I wasn't very happy with that.

Did not get prompt pain relief after her operation and was moved to a different ward.

And I had, when I was admitted I went onto the oncology ward and it's a very, very nice ward. They're very caring, very quick with the pain relief if you're not well. But after the operation, because it was a bowel surgeon, I went onto a general medical ward where he had his patients, and there is a significant difference in pain relief in that ward from the oncology ward. Where they have routine times where they bring drugs, you don't get the pain relief when you need it and you ask for pain relief and it doesn't come. This is a very common experience amongst other people that I've talked to.  

There's a lot of things, difficult things about being in hospital. One is the toilets. They don't keep them very clean. It's just very unpleasant. And the drugs, they don't bring them, they often do things like bring you something but leave it out of your reach and you can't get it and so you, you know, you do need back up if you can get it. You also need to be quite articulate to defend yourself and to cope with everything that's happening.  

She eventually needed an operation to remove adhesions that were blocking her bowel.

On the second of those combined cycles, my brother was here, and he took me in for the chemotherapy, and on the way in I started to get a stomach ache and when I was waiting to see the doctor I was really in a lot of pain and doubled up in pain. And a nurse came and took me to a bed in the chemo suite and got the doctor. And by which time I was really kind of writhing around in agony, I was in a lot of pain. And they gave me some morphine that didn't really help. 

But eventually after an x-ray they discovered that I had got a blockage in my bowel, some adhesions, forced by adhesions which if you ever have an operation in that part of your body you always have these adhesions hanging down and at any point they can loop round the bowel or they can cause problems with blockages. And I have had that before in my life. And it's very, very, very, very painful. 

So I had to be admitted to hospital and I had a bowel surgeon come to see me now and he decided that the best thing to do would be to wait for a few days and see if the blockage resolved itself. It wasn't life threatening at that point.  

But then eventually what he did, he decided to operate, and so I had my second operation within about 2 months, which was not very good at all.

Was invited into a clinical trial and describes her decision to take part.

But for the trial they wanted to see which drug affected the different tumours the best and whether all women would need both drugs or whether some women could just have one drug and therefore have less toxic chemicals put into them.

So, my routine was going to be that I would have 3 cycles of Taxol, then they would do debulking surgery. Then I would have 3 cycles of Taxol mixed with carboplatin. And then finally I would have 3 cycles just of carboplatin.  

As I explained to you, it was all offered at the same time as I got the diagnosis, which was quite difficult. But we didn't agree to it that day, we took the information away and thought about it and I asked a lot of questions about it. About how it would affect me. At one point I wished I hadn't done it because I thought that I would have finished the chemotherapy quicker 'cos this was 9 cycles as opposed to 6, but the oncologist said given my condition she would probably give me nine anyway. And so, you know, it's good to go on a trial and to help other people. That's really what I wanted to do but that's why I did do it but they didn't pressurise me, they were fine. But it was there and you could do it or not do it and it wouldn't affect you either way.

'Something' was still visible on the scan after treatment.

So since then I've completed the course of chemotherapy, which is great, and I've just recently had yet another CT scan to see how it is all developing, what's happened with the treatment. And the treatment has worked well in that I have mostly lost the cancer. There's just one area around my liver which, in the very first CT scan I had, it did show that there was a rim of cancer around my liver but it hadn't actually gone into the liver. And what they can't work out from this last CT scan is if I still have cancer cells there or whether it is something else, some sort of scar tissue or something. But there's something near my liver. So I haven't quite got the all clear but, you know, my general health is getting much better.  

The Macmillan nurse discussed her illness with her and her family.

So once I had the diagnosis, I had the morphine, the pain control was much better and I had a visit from a Macmillan nurse who was very, very nice and she saw my partner and her children together and me and talked about the implications of the illness and how to manage the morphine just anything we wanted to talk about, she was really good.  

Was angry that her ovarian cancer symptoms had not been recognised sooner.

I felt that, I was quite angry that I had been with so many symptoms for so long and that I wasn't diagnosed. And that, you know, people assumed things like it's Irritable Bowel Syndrome. Quite angry that it's not, there's not a higher awareness of the symptoms of it. You know, ovarian cancer perhaps should be one of the things that's checked for, particularly for women of my age with these particular symptoms.  

Finds it difficult to adopt the low fibre diet she needs because she had had bowel blockages.

Well I have to be, since the last blockage that I had, the, they recommend that I have a low fibre diet, and this is opposite to everything that I'd been eating before; I tried to eat healthily with high fibre and lots of fruit and vegetables. And I am, I don't usually eat meat but since I'm on this low fibre diet then I have eaten a little bit of meat and I don't eat the amount of fruit and vegetables that I did. 

It's difficult because sometimes I want to eat them and I have to peel everything and I'm supposed to sort of cook the vegetables till they're soft but I don't always. So I probably don't keep to it as much as I should but like I make bread and I can't eat wholemeal bread now, I have to have white bread, so there's all those sorts of things. And it's a bit embarrassing if you're in a restaurant and you get something like potatoes and you're sitting there peeling them off, peeling your new potatoes, it just looks very strange. But so I do that.  

Describes what you are asked when applying for Disability Living Allowance; a Macmillan nurse...

What do you need to do to qualify for that then? 

For Disability Living Allowance?

You have to well you have to fill in these forms that ask you questions both about personal care and about mobility and, so they ask you things like how long it would take you to walk a certain distance. I can't remember how far it was now, 10 yards, 30 yards, something like that. And how much pain you're in and those sorts of questions. It's a form that covers a lot of disabilities so there are a lot of questions that don't apply like 'Can you use your arms and legs?' that don't apply to me. And 'Do you need help with dressing and washing?' and  those sorts of things. And then there's three rates of allowance you can get, there's higher, middle and lower. At the moment I'm on the higher rate, which is good. But the MacMillan nurse helped me fill it in and that was, she was very useful in that respect.