Interview OV16

Age at interview: 52

Age at diagnosis: 50

Brief Outline: Ovarian cancer diagnosed in 2002 following constipation, pain and bloating. Treated by surgical removal of both ovaries (previously hysterectomised) followed by chemotherapy.

Background: Housewife; married; one adult child.

Describes her experiences of catheters, drains and drips after her operations.

How long were the drain and the drip in?

About three days, yeah. And a catheter, which was a new experience for me, because I'd not had one before. During the hysterectomy, again, I had to get up, you know, to go to the toilet and so on, so, again, you was a lot more mobile a lot more quickly. But, I mean this time, I didn't question it, because I didn't, well, feel up to questioning it, you just, you know, if they say, 'You've got a drain in', you say, 'Fair enough. There's obviously a reason for it', which I hadn't needed before, when I was' perhaps it's an age thing, perhaps it's just difference, you know, in your bodily make up as you get older and' whatever reason, you know, I had a drip in.  

So between the' with just the drip, it's fine, you can walk to and from the toilet, you can walk to the shop, you can go anywhere with your little portable friend, but it's more difficult if you've got a catheter and you've got that bag, and you've got the bottle with the drain and so on, so'

Developed a deep vein thrombosis (DVT) after her hysterectomy.

What it was, I came out of hospital, I think, on a Tuesday, because I had the operation on the previous Tuesday. My husband brought me home about two o'clock. I still had the silly white knee-length sock things on, and he was doing some dinner, and about to dish it up, and he put washing on, so I said to him, 'Oh, you'd better put these in the wash', because I'd been wearing them non-stop - putting them back on again, or having them put back on for me - so, 'About time these had a wash'. So he put them in the washing machine.

I finished my dinner, and I thought, 'My leg feels a bit funny'. It was my left leg. And it felt a bit sort of stiff in the calf area. And I just, as he was out in the kitchenette, just looked down, and it was swollen, like that, it was like I'd ' my leg had a football half way up in the calf, and the ankle was quite swollen as well. And I felt it, and it was very stiff, like there was a football there, as opposed to sort of squidgy. And so I panicked because I knew the symptoms, you know, or I'd been told to look out for DVTs and that, not thinking, for one minute, that I would get one, because I'd had the silly socks and the injections and so on.

But, I went out and showed him, and he said, 'No, that don't look right, does it'. So' it wasn't painful, it wasn't red and hot, but we went to the GP, who looked at it and felt it, and said, 'Yes, it definitely is'. He sent me to the local hospital, which only does minor injuries, so they gave me another bee sting injection, with the dosage that the hospital had been giving to me.  

The next day I had to go to the hospital and have a scan, an ultrasound scan again, and they found' she went straight to it actually, she used the scan on my left groin, and that's where the clot was, it had gone from my calf to my groin, so then they put me on the Warfarin, and I was on that for about eight months all told.  

Her oncologist always seemed too rushed to spend time with her.

The one complaint, if you like, I would have, would be the Oncologist himself, he just seems so totally overworked that he is always moving at the speed of light. And I appreciate how many people they have go through Oncology, you know, because we used to, while we were up there all that time, talk to the receptionists and so on about how many patients they saw of a week, although, obviously, he specialised in gynaecology, but, he always seems in a bit of a rush. And even with the check-ups, he has a bit of a flushed face, and I often think, 'Have we got blood pressure?' you know, 'because you could quite easily have in your job'. And, as I say, he does always seem to be sort of one foot in the door and one foot out the door, and he seems to be as if he's' you know, 'Can you hurry up and finish that sentence, because I've got to be somewhere'. 

Couldn't be positive all the time but sometimes when she had bad days other people made her feel guilty.

And the book I'm reading, that I finally' well, my brother tracked down, called, 'Life After Cancer', because it's about what ' you know, how do you get back to some sort of normality, and in there it says 'It's okay to be negative. Everybody says you've got to think positive, you've got to fight cancer', and so on and so forth, all of which I followed and duly did, and maybe it made a difference to how I coped with it. But then you feel guilty if your husband or partner or friends are sitting there saying, 'Well, you know you'll be all right'. 'Come on, you'll be all right' and that, and you feel guilty for having a bad day, which you don't need to be doing, because you're feeling bad anyway.  

And at the end of the day, I say to my husband, 'Yeah, but' though you'd miss me, it's still me that it's happening to'. You know, as close as you are, when it comes to it, to me, a man is an island, you are actually on your own when it comes down to dealing with the' the real nitty-gritty of it, if you've got to go in for another operation or start another course of treatment. You know people are there, but it's you that's, you know, looking at that sign, and thinking, 'God, it's Oncology', you know, and what it means and so on. And it says, 'You mustn't think badly of yourself for having negative days. It's okay'. Because they say, it says in there that heart patients aren't told to fight, stroke patients aren't told to fight, you know, but with cancer, it's, 'Well, you've got to fight it. You've got to think positive all the time', you know, 'Attitude makes a big difference and that'.  Why doesn't it make a difference to heart patients or stroke patients, or' any other illness.
 

Lost her job when she went off sick: her employer would not keep it open for her.

I was working when I had the scan, and then when they told me what it was, that it was a cyst this size, I knew I'd have to go in hospital and have it removed, so I knew that was going to be quite a' by the size of it, it would be a major, not a keyhole operation and so on, so I put it to the boss, and he had a word with his boss, and basically, they said they couldn't really keep the job open for me on a long-term basis and whatever. So I said, 'Right, I'll have to give it up, then'.  

And' that was basically how it came about, I had to give it up. I couldn't physically have done it since the cancer, anyway, because of the' hernia, now, because, obviously, being shop-work, it was a lot of lifting and physical work, and with the DVT' there was a lot of standing, so' it spoilt it for me anyway. But I'd only been working there about ten months, I think, so' and I think you've got to be working somewhere for about two years to be in with a chance of, you know, they've got to keep your job open until such times and so on. So it wasn't really discrimination.  

So has that have a big impact, financially?

It did have an impact, yes, I must admit. Well, it's still having an impact. And' I mean, I didn't earn a fortune because I didn't work that many hours, but what I did earn more or less paid the mortgage of a month, so yes, that has made a difference.

Was concerned about telling her husband and elderly parents that she had cancer.

Was it difficult telling other people about your diagnosis?

I think I was probably more bothered for them than I was for myself. Certainly with my husband, I was' I was dreading telling him. I think, I knew that I'd handle it better than he would. And he was out at work at the time, and I phoned him, and the line went quiet, so I knew he was crying. And he said, 'Right, I'll be there', you know, and even though he's out delivering and whatever, but I was quite calm and collected really.  

I was bothered about telling my parents, I think because of my mum being ill, you know, and I felt sorry' and them being of an age, I felt sorry for my dad especially, because, you know, he had his wife and his daughter all at the same time to deal with, sort of thing, you know, and he was more or less my mum's' well, he was my mum's main carer, so he had it all to do, and he suffers from emphysema anyway, so it was difficult for him.  

Benefited from the experiences of other ovarian cancer survivors by subscribing to Ovacome's regular newsletter and 'Fone Friends' facility.

So that's when I joined ' the Ovacome, that's advertised in the ' the Support Group for Ovarian Cancer, in the Backup book, and got their newsletters, and they were very helpful because they gave other people that had been in the same position, their letters. And some sad stories, but there were good stories too.  

You want reassurance all the time, and you can only really get that to a certain degree, and I suppose the 'Fone Friend' that I speak to from Ovacome says that now she's eight years down the line, which, again, was reassuring to hear, she doesn't' she gets her check-ups once a year, and she has to really make sure that she writes it in big letters on the calendar, because a year's such a long time, and it's so not part of her life any more that she genuinely forgets.
 

Found it easier to take in information when at home and asked her husband to read information too.

You seem to have been relatively well provided with information.

Yes.

Do you feel you had enough information?

I think I did. What I would say is, I had the information, quite a lot of information, more so than my mum did, I feel, and as I say, she was diagnosed in [town], but in my particular part of the world, I feel I was catered for. All I would say is that it didn't automatically mean a lot, because I would read it and not take it in, because of the state of mind at the time, you know, so it was good when I was calmer, you know, when someone else' I got my husband to read everything, so that he could point out things to me that, perhaps, had gone completely over my head, or, you know, I wasn't taking in for whatever reason, because I was so' well' I don't know quite what the word is, but' not coping that day, sort of thing. So, yes, the information was there, but it seems, as well, like you can never have too much.