Interview 125

Age at interview: 48

Age at diagnosis: 41

Brief Outline: Ovarian cancer diagnosed in 1996 following abdominal swelling and pain, and depression. Treated by surgical removal of ovaries and womb followed by chemotherapy.

Background: Nurse; married, 2 adult children.

More about me...

She was diagnosed with ovarian cancer six and a half years ago. She had been suffering from excessive period pains and a week of depression. She finally saw the GP with a swollen and painful abdomen. The GP originally suspected that she was pregnant but then concluded that the heart beat detected by the sonicaid was in fact her own. After a scan the radiographer did not explain the results so she first found out about the cancer by reading the radiography results in her car. The next day the GP gave her an urgent referral to the hospital which took three or four weeks due to administration.

 

Leading up to the operation tests established that she had a large malignant cyst; however, she felt that the operation would be the end of it. On the day of her admittance before the operation she was informed – by two reluctant doctors – that there was a problem with her liver, which caused her to automatically assume that she had secondary cancer. A scan before the operation indicated no liver damage.

 

The surgeon performed a complete hysterectomy and removed a large early ovarian tumour. Other than an infection scare the recovery went smoothly. She had the choice to take part in a chemotherapy trial or alternatively have what was at the time standard chemotherapy, carboplatin. She decided not to participate in the trial because she had been diagnosed at an early stage and didn’t want to overdo the chemotherapy. The trial would also mean losing her hair which she felt was part of her identity.

 

She had six cycles of treatment, once every three weeks with blood tests in between giving her a chance to become friendly with the nurses and meet other people in a similar position; this was particularly natural being a nurse herself as she felt comfortable in the hospital environment. The side effects were described to her as ‘tiredness’, however she feels a more apt description would be ‘paralysis’. She had to plan her life around the chemotherapy, and when the treatment had to be delayed due to an exceptionally low white blood cell count she found it very hard. She got better physically fairly quickly but occasionally suffered depressive periods.

 

Throughout the therapy she had a lot of support from friends and family (her husband and two teenage children) and used talking as a coping mechanism. Her gynaecologist and Macmillan nurse were very important, helping her keep things in perspective and reassuring her about the chemotherapy. She felt that the cancer and treatment was very hard on her family particularly her daughter who was helped by support from her friends. 

 

When the treatment was finished it was a difficult time because it seemed the support networks around her had disappeared and there were no regular check-ups. Most people expected that now the treatment was over that would be the end of it, but they failed to realise she would fear a recurrence. 

 

After the treatment she had a scan to determine whether the chemotherapy had worked, the results took a long time to come through and she felt very anxious. She would also worry about check-ups and often had sleepless nights before them. She was ready for the worst and mentally prepared herself before each check-up. Some check-ups would be very thorough and reassuring and others would be brief and leave her sceptical. Excluding the time when a groin pain was being investigated – it turned out to be nothing – the frequency of follow-ups gradually decreased. She started hormone replacement therapy (HRT) but then changed to a natural remedy due to the risks involved in HRT. She was told by the doctors that it would take 6 weeks to feel normal again but in actual fact it was more like two to three years.

 

She found it difficult returning to work full time; because she worked as a nurse she had never had an opportunity to get away from healthcare. Her approach to life was very realistic and often was interpreted by other people as negative; she wouldn’t make any long-term plans in case the worst happened.

 

She is no longer a nurse and thinks in retrospect it would have been beneficial to take 6 months off work during the treatment. She now works for Ovacome, a support networks for sufferers of ovarian cancer.

 

She has never questioned why she developed ovarian cancer but often feels guilty that she has survived when so many other people haven't.

 And as time’s gone on I’ve felt incredibly guilty why, not why did I have cancer, because I’ve never been angry about it, or I’ve never asked why I’ve got it, but I do very often say, ‘Why am I OK and others aren’t?’, and it’s like survivor’s guilt really, I just spend a long time thinking why have I made it, and I can’t find any rhyme or reason, I’m just very fortunate to be where I am.

She felt that having to pay a higher premium for travel insurance after ovarian cancer was an extra hurdle.

Having been through the experience, sometimes it’s quite difficult to get on with life afterwards. For a start your perspective has changed and all sorts of things, I think I’m probably more laid back than I was, but there are other hurdles to get over. It’s almost as if you’re a leper. It’s very difficult to get insurance. I know the first time we tried to go on holiday after my treatment, they offered insurance to my husband who’d not long been in hospital for three days, for £17, but because I’d had cancer two years previously, they wanted a premium of £77 for me. And you almost feel as if people aren’t going to give you a chance.