Interview OV36

Age at interview: 61

Age at diagnosis: 54

Brief Outline: Ovarian cancer diagnosed in 1997 following abdominal pain, tiredness and bloating. Treated with bowel surgery then surgical removal of ovaries and womb, and chemotherapy. Recurrences treated with chemotherapy, accompanied by further bowel surgery.

Background: Retired headmistress, married, one grown up child.

While waiting for blood test results had to go into hospital as an emergency with a blocked bowel.

Well I started to feel under the weather in about December 1996 and to have pain in my lower abdomen, and because it was a sort of pain that you get, like period pain, even though I wasn't having a period, I didn't really do a lot about it until we came back to school after Christmas and I was going to bed with a hot water bottle every night and thought 'this is, I can't, there must be something wrong, you know, I ought to do something about it". 

So I went to the doctor and I went three times to the doctor in the space of about three weeks and didn't feel that I was really getting anywhere and, you know, it was 'oh well it's possibly a grumbling appendix' or 'well it's possibly pelvic inflammation'or... And eventually I have to say that my professional life was in [town] so I wasn't, although I lived here, my professional life was in [town] and eventually the doctor there sent me for a blood test and said 'go home to [county], and rest and we'll see what happens to the blood test, but just go and rest". 

So I came home on the Thursday, and I was by then in quite a lot of pain and that was about the 25th January, and I went to bed when I came home and I didn't get up, and in the end my husband had the doctor come here to see me and I was taken in as an emergency with a blocked bowel.

Had two operations: first an emergency operation to unblock her bowel, then a hysterectomy.

So I had the operation for a blocked bowel and he didn't actually, the surgeon who did that operation didn't, in the course of the operation, find anything that particularly worried him as far as I could gather. And then after the operation he, for some reason, decided that he would send a small piece of tissue for a biopsy and, so I'd kind of come out of the operation, which had been successful, never having heard of a blocked bowel actually before, but suddenly being told that this is quite serious, you know, and can be quite a dire thing to happen, and sort of felt 'oh that's alright then we've got that', when he then came back, very kindly, on the Monday and said that this tissue had actually shown up ovarian cancer cells and he hadn't wanted to tell me on the phone because he didn't want to spoil my weekend.  

So I sort of got over one and then discovered that this was another possibility. So as far as he was concerned he didn't really make it seem as if this was a very serious thing but he wasn't an oncologist. So he gathered round him a gynaecologist, and very fortunately in my area we have an ovarian cancer specialist oncologist, and he recruited him as well so there were three of them on the case.

And the way the oncologist worked was that he preferred to have a full scale hysterectomy first before any chemo was tried. So within three weeks of the operation for the blocked bowel where I had a portion of the bowel taken away, I then went to have a hysterectomy.  

Had five courses of four different chemotherapy drugs because her cancer kept returning.

So you've had four or five lots of chemo now?

This is my fifth, yes.

And different drugs every time or have you alternated?

I had carboplatin, cisplatin, Taxol, and then last time I had Caelyx and I'm having that again this time. When I had it I understood again from the oncologist that you couldn't have more than a maximum of X number of mls of this drug, but whether again this is research that's changed things in a short time, because things do don't they. It's wonderful really how things improve. He's quite confident now that I will be able to have another six, obviously we'll monitor it as we go along, but another six doses of Caelyx. 

And I didn't lose my hair with Caelyx, and I was treated at home on that occasion which was, I didn't know you could have chemotherapy at home, well that was quite interesting, and I think that was the drug that's caused me personally the fewest number of unpleasant side effects. Although I understand its, it has an effect on your heart and not everybody can take it because the risk to the heart is greater than the benefits, you know, to the cancer.

Diarrhoea was caused by bile salts entering the bowel after a valve was removed from her bowel.

I had the usual feelings of nausea and loss of appetite and of course I was struggling with my bowel at the same time, which made it extremely difficult because I had permanent diarrhoea for about eleven weeks until my oncologist actually suddenly understood what had happened, and that some valve had been removed when they'd removed part of the bowel, which coped with bile salts from the liver. And the valve had been removed and so nothing was doing its job, and so the bile salts were reaching a part of the bowel that they shouldn't reach and causing huge inflammation, and as soon as he had researched that and discovered and gave me some medication for that, which I still take, it was solved like at a stroke, in a day.  

Was very sick after chemotherapy but found out that it was caused by the way she was taking her...

So we had quite a horrible time at the beginning of the first treatment because I was on morphine and it was difficult to get the dose right and also I don't know whether I hadn't explained it, I don't really know, but I didn't feel that anybody had twigged that the morphine might be making me sick. Because I was very sick after the first chemo and my husband went back to the hospital three times for more anti-nausea tablets, and in the end the Sister said 'your wife really shouldn't be, she shouldn't really be still feeling this from the chemicals'. But nobody had said, put two and two together and decided that it was probably the morphine. 

So I thought we'd better see a pharmacist at the hospital, who really spotted the problem right away and explained that I had been taking these morphine tablets when I felt I needed them, which is not the way to do it at all apparently. You have to take them, if it says 'every four hours' every four hours, otherwise you keep feeling sick, because the effects wear off. Then you have another one to kill the pain and it causes you to feel sick. So I really was doing it myself. But everybody worked together so that when I had the second session of chemo it was all sorted, and it is.

Was disconcerted to be told to 'be her own physician' and look for signs of the cancer returning.

Presumably you were having regular follow-ups during your periods of remission?

Yes I was actually and, you know, when sort of once a fortnight then once a month and once, just gradually lengthened the periods of time, and when the consultant said to me 'you are your own physician' I found that very disconcerting and I actually rang Cancerbackup at that time because I felt completely devastated and thought 'nobody's looking after me', you know and, because you are so looked after, well I was, so well looked after, that suddenly you think you're on your own and I felt I could turn into a kind of a total hypochondriac because when somebody says 'you are responsible for yourself really and listening to your body', well you can hear your body telling you all sorts of things can't you that it isn't really, and sometimes he did used to say to me 'but Mrs xxx you can have a headache that is nothing to do with your cancer you know'. So that was a difficult period at first, getting used to listening to your own body, but now I can do that.

She recognised the symptoms that indicated her cancer had returned.

And when your tumour came back each time you said you knew before your doctors knew that it was coming back. Can you tell me how you knew, what were the clues?

Oh the same feeling of heaviness, and not inability to move your bowel, but the feeling that you need to move your bowel but the muscles aren't obeying your brain. And sometimes pain. But mostly that, that almost indescribable feeling really of, of thinking oh oh, you know, not like a pain and not having felt ill, but that was the first sign on most of the occasions, not all of them but most of them.

Praises the chemotherapy nurses - they made themselves available 24 hours a day for patients with...

I found the people at the hospital hugely helpful, the kindest people when you consider their job on a cancer ward. They were the nicest people, and the thing that impressed me most was that they sort of looked at you as you went home and said 'if you have anything at all that troubles you, always remember you do not have to put up with it' and that stuck really in my mind. I felt that was the best bit of advice I'd been given. And were always prepared to answer the phone 24, 24 if you had cancer related side effects or symptoms that you didn't understand or you couldn't cope with, very, really very helpful.

Felt unattractive and wore a wig in bed but feels that a sex life needs to be preserved.

My own image of my body was horrendous for weeks and weeks and my husband was always very reassuring and he would say to me 'you don't have to wear your wig, you know', when we went to bed. And you think 'well it is a bit silly isn't it wearing a wig in bed' but, you know, you're...  I was so thin and scrawny and, that you don't really feel attractive even if you felt you had the energy for a wildly exciting sex life, you don't, you, you often have to make yourself remember that this is quite an important part of your life and that if you don't preserve it, it isn't going to come back when you feel alright. 

I think that's really the way it's affected it, that often you maybe find yourself perhaps with less enthusiasm than you might have, but you know there is going to come a time when you are going to feel better, but as you get older you might think, 'gosh I let this go' and so perhaps more self-consciousness about it. But mostly, largely because it's very difficult, it's been very difficult for me to think that I want to be seen outside of voluminous night-dresses or pyjamas, you know, terrible, pancake bottoms and things.