Interview 134

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.

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She felt ‘under the weather’, tired, had a feeling of fullness and period-type pain in her lower abdomen. She would feel that she needed to go to the toilet but that her muscles would not respond. When these symptoms did not pass, she visited her GP three times, and was told it could be a grumbling appendix or pelvic inflammatory disease. She was eventually given a blood test, but while waiting for the results she was in increasing pain, and was admitted to hospital with a blocked bowel. She had surgery and a small piece of bowel was removed and sent for a biopsy, and this showed that ovarian cancer cells were present. Her oncologist recommended a hysterectomy prior to starting chemotherapy, and this was conducted three weeks later. It was confirmed that she had a stage 3/4 cancer which could not be removed as it was too firmly attached to her bladder and bowel. She felt shocked at the diagnosis and that she was ‘carried away on a huge wave’ of agreeing to treatment. She does not feel she was given the choice not to have chemotherapy, but she would have accepted anyway. She felt that she did not have enough information given to her at times. She read an article in a newspaper that described ovarian cancer as being like ‘lots of little rice crispies’ rather than one large tumour, which she found helped her understand it. She found telling her Mum and son about her diagnosis hard. Her elderly mother was particularly anxious and she found managing her fears particularly difficult to deal with. Her friends were incredibly supportive, as was her husband. She feels that he is still quite tense, and can find it difficult to let her do things herself when she is well. 

 

Three weeks after her surgery she had her first course of chemotherapy. She found that Cancerbackup (since merged with Macmillan) provided useful information on the different chemotherapy drugs, and the hospital-based help centre offered valuable support. At the beginning of her treatment she had thought that she would be able to go back to work, and reflects that this was partly a coping strategy. She realised during her treatment that she would not feel able to return to work, so retired on medical grounds. Accepting this was difficult. Her treatment was successful but she had a recurrence of the cancer two years later. She has had four recurrences in total and two bowel operations. Of the chemotherapy drugs she has received (carboplatin, cisplatin, Taxol and caelyx), she found that caelyx gave her the fewest side effects. Her doctor told her to listen to her body, and it was she who alerted her oncologist to the fact that her cancer had returned. At the time of interview, she is currently part way through her fifth course of chemotherapy. She has kept a diary of the symptoms and side effects she has experienced during treatment. She lost weight and found her thin appearance more upsetting than losing her hair. She became anaemic during chemotherapy and had a blood transfusion which made her feel unwell. She now has Eprex injections to boost her red blood cells. She found it frightening when her check-up appointments became less frequent, and it took her time to accept that not every pain she had meant that the cancer was recurring. 

 

She found the staff she came into contact with helpful and very kind, and offered her on-going support. She was offered a course of reiki, which she found relaxing, and she started to take maitake mushrooms, which she still continues to take. She says that she and her husband enjoy life more now than they did before she had cancer, and are more spontaneous in doing things. She enjoys going on holiday but likes to be reasonably close to home. She has accepted that she has a recurrent cancer and finds her spirituality a source of comfort. She believes it is vital not to ‘give in’ and to continue getting up each morning and keep on going. She is happy not knowing her prognosis at the moment. She does not want to feel like a victim, and encourages people not to treat her or others as such. She has campaigned to a national newspaper about the use of the word ‘cancer’ and its casual usage to denote something dirty or unpleasant. She encourages women to listen to their bodies and not to be ‘fobbed off’ by doctors attributing symptoms to their age or stress, for example. She urges people to be persistent with their GP if they are feeling unwell. 

 

After 3 operations for her ovarian cancer and losing her hair through chemotherapy, she feels unattractive and doesn't want her husband to see her naked, but wants to keep her sex life going.

Has it affected your relationship in any physical ways, your sex life and so on, or would you not want to talk about it?

 

Well it has, I mean obviously it has, I don’t particularly want to talk about it but it has in the sense that your own image, my own image of my body was horrendous for weeks and weeks and my husband was always very reassuring and 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 often have to make yourself remember that this is quite an important part of your life and that if you don’t preserve 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.

 

Her husband had done everything for her while she was ill with ovarian cancer but now that she was well he found it difficult to let go and still wanted to be in control of everything.

And how’s your husband coped generally?

 

Very well, but it’s left him with a great need to control every situation, because for so long I suppose, in the beginning and then twice more when I was really touch and go, your carers have to do everything, don’t they? You know, think of every meal, think of things that will tempt you to eat, change the beds, do the washing, sort out somebody to do the cleaning, make sure there’s food in the larder, remember everybody’s birthday. 

 

They have to do everything and care for you as well, and then when you get better that’s really hard isn’t it? Because the patient gets better and says, “I can do this, I can drive myself to Tesco, I can shop”. “Oh no, no I don’t think you should do that”, and so it, it’s left him in, not knowing really how to cope when the situation changes. And so you maybe have frictions where I have to understand that if he feels I shouldn’t do things or can’t do things, it’s not because he’s controlling my life, it’s because he’s used to having to think these thoughts and to do it.

 

So I think that has made him more tense. But he’s not a verbaliser and he’s not a moaner, and we both tried from the beginning to make sure that the bits of his life that are his, like going to rowing at regattas, and being in the domino team, and going to play poker in the poker school whenever it’s on, and going to the bridge club, that he never stopped doing that.

 

And all my friends were great in that they would say, you know, to my husband, “If you want to go to bridge I’ll come and sit with…”, me, and that was important to me as well, and often he would only just go up to the pub but he would leave the number by the bed. I only once ever had to ring to ask him to come back but it was important for both of us that normal life carries on. So I think he’s been very good at that and that’s really the only relatively small thing, although it seems like a big thing when you’re bickering about who can drive the car or whatever, you know.

 

She has had 4 recurrences of ovarian cancer with a 'reasonable life' in between treatment episodes. The first was a blow as although she knew it was likely, she had hoped it wouldn't happen to her.

And I gradually got better and managed that first time to be free of the cancer for two years, about twenty-three months, before it came back again.

 

But I did know that it wasn’t going to go away, so it wasn’t, I mean it was a blow when it came back because you always feel that you’re special, don’t you, and it isn’t going to happen to you. But it was two years, and during that time my oncologist, who was and is a pessimist, but I was grateful for that in the end, because that has been better for me to adjust to my life than having been told, “We can make you better and you can go back to work”, you know. 

 

So I was actually quite grateful, but he did say that, he explained that the nature, as I understand it, the nature of ovarian cancer is that you are very much yourself your own physician and must listen to your body and must be able to recognise for yourself what your own symptoms are, and to be alert, because even the scan and the blood test aren’t necessarily going to identify what you maybe can feel for yourself in little ways. And I think it’s been true that each time I have alerted him to the fact that I think that the cancer’s active again.

 

So the first time it was two years, and the second time it was about thirteen months. The third time it was only about seven months, and this time it’s been eleven months. And my understanding is that if it can be sort of ten, nine or ten months, and your body, and obviously everybody’s body is different, but if your body can respond reasonably well to the treatment and has a reasonable recovery rate, that you can continue to be treated, even though you’re never going to be cured, and have a reasonable life in the twelve months in-between. 

 

She usually experienced the same symptoms whenever her ovarian cancer came back, so she could alert her doctors.

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 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.