Interview OV14

Age at interview: 54

Age at diagnosis: 53

Brief Outline:

Ovarian cancer diagnosed in 2002 following abdominal ache. Treated by surgical removal of ovaries and womb followed by chemotherapy.

Background:

Retired day centre social worker, married, 2 adult children.

Went into hospital with a suspected ovarian cyst and describes the tests she had.

Well, I was diagnosed with stage 1A ovarian cancer in April 2002, the day before my 54th birthday. And I'd been to my GP in the March. We were due to go on holiday and I'd been having just a dull ache down the lower left-hand side of my abdomen and I had some tenderness across the pubic bone area. And it wasn't really troublesome but after 4 days I went to see my GP and he examined me and felt my tummy, looked a bit concerned and said he thought he could feel what could be a large ovarian cyst. 

He asked if he could examine me vaginally and rectally to really, just to sort of confirm what he thought. He did do and he was still of the same opinion. He said that I should go straight to our local hospital, be prepared to stay in, they would want to do some tests. And he phoned them so they expected me, and he wrote a covering letter.  

One of my work colleagues took me over to the hospital, tried to contact my husband who was in a meeting so she left a message. Had quite a long wait but I was examined, I was admitted and over the next couple of days I had x-rays, blood tests, ultra-sound scans and they confirmed that yes, there was a large cyst on the left ovary and that it would have to be operated on.  

Being the only cancer patient on the ward was difficult.

I would say the nature of the surgical ward in the hospital where I had the second operation, gynae surgical, very, very busy, lots and lots of different sorts of operations taking place. And I had decided to not wear my wig in hospital because I thought it's too hot, it's going to be too uncomfortable, I'm just going to wear a headscarf. 

And I thought, actually, I was going to be fine about it, you know. People would soon realise she's lost her hair, she's in because she's got cancer, you know, and I thought it wouldn't be a problem.

But actually it was a problem because I was, I mean women get together 'oh what are you in for?'  I was quite open about, you know, why I was there, so it wasn't a problem for me to actually say to other ladies that I'd got cancer, but I felt very self-conscious about the fact that I was wearing a headscarf and that I'd obviously got no hair. And I also felt that once I'd said 'cancer' they felt sorry for me and didn't want to talk about it. And I felt that, I felt that was quite hard actually, because I didn't want them to feel sorry for me but I felt that they did. I mean, I might just have been me over-reacting, I suppose. And I actually found it quite sort of hard to be in a very busy, normal surgical ward, I suppose. But luckily I wasn't in there too long so, you're home before it sort of starts to really get to you.

Had a hysterectomy and then a second operation to remove the omentum in case of spread.

So I had, the cyst was removed, both ovaries, both fallopian tubes, the uterus and cervix were removed. It all went according to plan, it was all straightforward and when the surgeon came to see me afterwards he initially was quite reassuring. He said 'yes, it had been large, the cyst, about the size of an orange but that it had looked and felt like a dermoid cyst'. There were no adhesions and no fluid in the abdomen and the surrounding organs, from what he could see, looked healthy. But he said 'obviously, we'll have to wait for the biopsy results'.  

And when I went for my fourth chemotherapy session the oncologist said that she'd like one of the surgeons to have a word with me. 

He explained to me that when the original hysterectomy had been performed something called the omentum hadn't been removed. Now I mean, I'd got no idea what the omentum was but that was explained to me. And he said 'really' he said 'at this hospital we would really like to remove it'. He said 'I can understand your original surgeon not removing it because he felt reasonably confident that there was nothing to worry about'. He said 'but the omentum and the surrounding lymph nodes are often the first site of any spread of the cancer'. So he said 'we would like you to come in and have that removed'. He said 'I know it means another big operation' he said 'but just to be on the safe side'. So 2 weeks later I went in and I had the omentum removed and everything went well.  

Was offered a choice of carboplatin alone or combined with paclitaxel.

We did talk about the different chemotherapies but my husband and I had already come to a decision about that. The present, or at least the gold standard was a combination of Taxol and carboplatin. I'd found out that the Taxol causes the more severe side effects but the research that they had to hand then was that it produced slightly better results if you used the 2 in combination. Although I believe NICE have recently brought out a new report on that. But anyway, the present gold standard then was the combination of the two. 

Now for some women hair loss is not acceptable and they go just for the carboplatin on its own, which is, you know, fair enough. But with Taxol it is almost a certainty that you're going to lose all your hair. I'd read that a cold cap could help prevent the hair loss but I thought if my hair's just going to start thinning and look awful, I'd really rather just lose it all and have the benefit of having the Taxol as well.  

Listened to a relaxation tape and had reflexology from a volunteer to help her relax.

The nurse specialist at the hospital, she was extremely good, she contacted the palliative care team, actually, while I was in the hospital and got me on loan a relaxation tape which was actually excellent. It was very good. And she was helpful for those sort of aspects of it. And yes, I benefited from that; I had that on loan for quite a while so that was good.  

How does the reflexology help?  Does it just help to relax you?

Yes, it's just a lovely relaxing thing to have done. And one of the things out of all this, of course, is I've just sort of met some marvellously kind and dedicated people, really. And the reflexologist, she's a volunteer, a lovely lady and we just have a really nice hour together. She does the reflexology and we chat and we have the music playing and it's just a very nice relaxing experience. Yes, I find it really nice.

Accepted that her cancer could return but hoped to survive for many years.

How do you view your future?

Mostly positive and I know that I've always got to live with the fact that I've had cancer. That ovarian cancer is an aggressive cancer and that in many cases it does reoccur. So I do, I do wonder whether my life expectancy is as good as it ought to be but mainly I've got that parked right at the back of my mind and I don't think about it. And so, I'm going ahead and, you know, keeping fingers crossed and with luck I might still be here in 10 years time. I don't know but I might be, I hope I am.

Told close colleagues all about her cancer while telling clients the minimum they needed to know.

Work, I decided to be up-front from the beginning. I worked with a very close, small team. I and my 3 colleagues had worked together for 8 years and we were more than work colleagues, we were friends and so I was up-front. I came and told them exactly what was wrong. They were upset but very supportive, excellent they've been. The elderly people at work that was a different matter. We told them that I'd had to have a serious operation and that I'd be off work for a while. And as I say, because nobody knew that I'd got a wig on, it wasn't necessary to say any more. Had they noticed or what have you, it might have been different but no, we didn't say anything more to them. And when I retired we more or less just said that I had been seriously ill and that I felt that I needed some time to myself so we felt it was better to leave and they accepted that.