Interview 149

Age at interview: 41

Age at diagnosis: 35

Brief Outline: Ovarian cancer diagnosed in 1997 following abdominal pain, frequent urination, vaginal bleeding, fainting fit, and rash. Treated by surgical removal of ovaries and womb followed by chemotherapy.

Background: University administrator; married; two children.

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Her symptoms started with a ‘niggle’ in the left side that didn’t go away, accompanied by an increased need to urinate and irregular menstrual bleeding. She also started to develop allergic reactions to things and decided to seek medical help when she almost fainted while out shopping.

 

Initially, her GP thought she may have fibroids, but she was admitted to hospital where she had an internal ultrasound and was eventually was told there was quite a large growth and the only way to diagnose it was to operate. The operation occurred a few weeks later. During the operation, she had a total hysterectomy, including removal of her ovaries. It was only clear that it was cancer once she’d come round from her operation. However, it wasn’t a surprise at the time, as she felt she’d prepared herself for the worst. She feels that she has had very good care, but if she could change anything it would be the way she was told her diagnosis. She was told by a consultant on the ward round just with a curtain around her bed, which wasn’t a very private place to deal with such a big diagnosis. 

 

The operation removed 90% of the tumour and she was booked in for 6 courses of chemotherapy as part of a clinical trial to treat the remaining tumour. At the time she was diagnosed, she really just wanted to focus on the treatment and getting better rather than being too upset. She recovered quite quickly from her operation and was in hospital for about a month in total. She thinks that she would have liked more children, but feels thankful that she has two healthy children from before she had the hysterectomy. 

 

She went into an ‘instant menopause’ as a result of the total hysterectomy. She feels fortunate that she didn’t have very many side effects from the menopause. Initially, she was prescribed HRT mainly for protection against osteoporosis, but this seemed to make her IBS worse and she was switched from pill-based HRT to patch HRT which seems to agree with her better. 

 

The chemotherapy gave her some side effects like indigestion and constipation, but the main one was from the steroids she had to take prior to chemotherapy which made her put on quite a lot of weight that has been hard to get off. Her hair fell out despite use of a cool cap, which she found uncomfortable and not that effective, so just shaved it all off and rarely wore a wig. 

 

She has regular CA125 tests (a test for a cancer marker in the blood) when she goes in for her regular check-ups, and it’s a worry to wait for the results to be reported back to her GP. She used to have six monthly appointments at the hospital to follow-up on her cancer recovery, but is now on yearly check-ups. She wishes she could have continued with six monthly check-ups as she felt she relied upon them for reassurance. 

 

She went back to working full-time and has had no major problems with getting back to work, and received sick pay, which helped. 

 

One thing she has done since having cancer was to help set up cancer support groups in her town. She feels very much supported through the support group, and feels it’s a good way to share information and see others who have survived cancer in the long-term. In general, she was happy with the kind of information she got about ovarian cancer from the internet and the Cancerbacup information booklets. 

 

Her children were very young when she was diagnosed, and they still don’t understand fully what happened. She feels that she will tell them in time when they ask about it. 

 

She feels that now her personality has changed and she is more likely to ‘give things a go’ and get involved with things, such as the cancer support groups, which she may not have done before her cancer diagnosis. She wonders what would happen if she had a recurrence of her cancer, as there is not a lot of information about that, but it would be good to know what the treatment options would be at that stage. 

 

Her message to other women going through ovarian cancer is not to be frightened of it, and treat it as an illness that can be treated with drugs and a positive attitude. 

 

After having ovarian cancer she had bowel symptoms investigated; after initially fearing the...

They’ve been very good; if I have any concerns they’ll follow them up. You know, part of my concern was I was having problems with my bowels, and they did follow that up, I had a full investigation, which then discovered that I had IBS. I also had some problems with one of my breasts, it was still leaking milk when it shouldn’t have been, and they followed that up. 

 

Does your IBS pre-date your ovarian cancer?

 

I’m not sure, I think I probably did have a tendency towards it, but I think it’s become more pronounced since then, which of course gives me all sorts of issues as well about eating lots of fruit and stuff, I do find that hard. No I think it probably has been exacerbated by…

 

Because the symptoms can be very similar, so I was wondering whether if you had IBS before your diagnosis whether the symptoms could have been confused.

 

I think I was probably starting to get signs of it that, that you’d, that everything was happening anyway. I think my body was just a total mess and that I was depressed, I was just quite newly, a new mum, so there were all sorts of changes happening in my body and I really am not sure what to attribute them to.

 

But the IBS has continued after your hysterectomy, so it can’t just have been… 

 

No, I mean it, I think, initially when I was diagnosed with that I was quite concerned because I thought it was bowel cancer, but I have been reassured, I mean they tested me and everything that there’s nothing there. I think that you tend to lose a little bit of faith in your own body and you always think the worst now. But my doctors have convinced me now that I can have other illnesses apart from cancer and they’re not all related.

Since having ovarian cancer she is more likely to get involved in doing things that she might not...

Oh, have you changed your life style at all as a result of your illness?

 

With two young children it’s difficult. Working full time it’s also difficult. You have restrictions that are in-built there, I do try and take more time for myself but that’s hard. I do try not to worry so much, but sometimes that’s difficult, but I think I do achieve that most of the time. I do try and fill every moment of every day, I don’t like to waste time now, I value every minute that I have. I do rest more than I used to. When I’m tired I just go to bed, I probably would have soldiered on and been up to all hours trying to do things, I don’t do that anymore. But I can’t say that I’ve got any major life changes. 

 

I think my personality’s changed. I certainly wouldn’t have been doing something like this before. I wouldn’t have got involved with support groups before. I certainly wouldn’t have been involved with anything that involved me speaking in public, like a committee. I’m more inclined to do things that are suggested to me, previously I would have tried to weigh up all the pros and cons, but I’m a bit more inclined to give it a go now. But I can’t think of anything major.

She felt isolated when she left hospital after ovarian cancer treatment; after talking to her...

Tell me about your involvement with your support group. Do you do it out of a sense that you want to help other people or do you get something back for yourself?

 

I think it’s a mixture of these two things. When I came out of hospital to start with I was getting support from the Macmillan social worker, and I quickly realised that apart from that I was very isolated. In hospital you’re quite cosseted, you feel looked after, you have people to talk to if you’re not sure what this ache or pain is, or what this feeling is. But when you’re out in the wider world the people you come across who have ovarian cancer, or even who, you know, who have cancer, are very limited. People don’t tend to go round wearing, as somebody said to me, wearing a badge saying “I’ve had cancer”. You don’t know. And your family can’t really empathise with how you’re feeling because they haven’t been through it, they don’t know what you’re experiencing and, you know, through talking this over with my social worker I realised that probably there was a need for something in the local area and nobody seemed to be getting up off their backsides and organising anything. 

 

So, with his help, myself and another lady decided to meet up, and basically through this meeting opened to anybody else who was interested and we were amazed at the response. I think the group took off with great gusto and at some points we were having forty people coming along to a meeting, and the benefits are tremendous. You feel supported; you can share your experience with people who understand. I was fortunate in that one lady who came to the group had had ovarian cancer and she was two years further down the line than me, and it was good to see that, yes, you know, I can aim for that, I can get there, somebody else has got there before me. And she actually had had much worse ovarian cancer than myself, and it was good because some of the niggles I had, odd aches and pains, she also had experienced, it was good in that respect. 

 

There’s lots of information available, you get tasters of complementary therapies, health professionals come along and talk, it’s all very interesting and informative and, as I said, it’s good to see people who have survived cancer and are still going strong. I’m also very conscious that I’ve survived cancer thanks to medical skill, and I’m quite happy to put as much back as I can, and if it’s going along to a support group and showing people that it’s not a death sentence, that you can live normal lives, you can have families and it can all be well, that’s fine. I can’t give a lot money-wise but I can give time, and that’s basically why I’ve become involved.