Interview 100

Age at interview: 47

Age at diagnosis: 35

Brief Outline: Ovarian cancer diagnosed in 1991 following night sweats. Treated by surgical removal of the affected ovary followed by chemotherapy.

Background: Complementary therapist; single; no children.

More about me...

She first realised something was wrong when she started suffering from night sweats. She made an appointment with her doctor who said that it was likely to just be hormonal and that she shouldn’t worry about it. She carried on as usual for some time but found that her night sweats got progressively worse and unbearable. She decided to go back to the doctor’s, where a locum doctor carried out an internal examination and came across a large cyst that would need to be removed. She was referred to hospital for an operation where they removed the cyst and an ovary, and conducted a biopsy. She was asked to phone the hospital to receive her results and realised then that there was a problem. The test results revealed that the cyst was malignant and it was recommended that she undergo chemotherapy. It was a ‘bit of a blow’, as they had reassured her that everything should be fine and that it was unlikely that there should be a problem. In hindsight she feels angry that her doctor had dismissed her concerns as hormonal issues and had not referred her sooner. She found the recovery from the operation straightforward, and that it did not affect her fertility.

 

She had 4 sessions of chemotherapy. She had initially felt sick after her early chemotherapy treatments but felt fine in later ones. She found that having ovarian cancer didn’t change her lifestyle despite the emotional drain. She continued to work and remained fairly active. She explained that she had been able to go on a walking holiday between her third and fourth treatment, and had continued working as well as starting a Master of Arts degree. By her fourth treatment chemotherapy had impaired her immune system, so the risks were outweighing the benefits and the treatment was stopped. Unfortunately she developed meningitis after chemotherapy damaged her immune system. She lost a lot of weight and found that it weakened her significantly. She characterised cancer as an emotional disease rather than a physical one. She found post-treatment period difficult. She felt more isolated out of the hospital environment and that she had more time to come to terms with her experience, which she found emotionally draining. 

 

She had initially found follow up appointments difficult and intense, and disliked waiting for the results. She soon found that life went on and that scans happened less frequently. She began to feel more optimistic about her future and that everything would be alright. She decided to be open with everyone about it because she felt it was better to be flippant about these things rather than bottling it up. She found her family were a great support and found comfort in good friends. She also joined a support group in the local area, which she found really helpful. She explained that it was just useful to have friends around and have people that you know that you can talk to about your cancer. 

 

She has a positive view of the future and looks forward to having great new adventures. She believes that it is important to not let health professionals take charge of you, actively seek information and ask questions, and don’t be afraid to demand answers from them. She felt that she could have benefitted from more advice on how to cope with her illness from the hospital staff. She had found her experience of cancer was rushed and quick, and that she was very much on her own once she had been treated. She found that complementary therapies were useful in minimising and managing the side effects of treatment. Her message to others is to stay positive and talk to people who have been through the same thing and survived. 

 

 

Three years after having ovarian cancer she developed a rare type of meningitis and was hospitalised for 5 months; she found the meningitis harder to deal with on a physical level than the cancer.

Whereas the cancer was a very, I think that cancer is a very emotional illness and it didn’t knock me at all physically, the meningitis was very much a physical illness. It really took my body apart. I was in hospital for 5 months with the meningitis. It took several weeks for them to actually decide that it was a type of meningitis, because it was a very rare form of meningitis. In fact, they didn’t at first think that it was meningitis; they thought it was the cancer had returned and had spread. 

 

But once it was diagnosed I was put on to a…, well they described it as a low-grade chemotherapy, which was pumped into my body via my blood supply and it went throughout the whole body. And after about 6 weeks, 5-6 weeks they thought it was caught and that it was okay and that they would take me off this particular, it’s Amphotericin B, this drug. And they thought they would take me off that and everything would be okay, but unfortunately it wasn’t. Within 5 days it was back, the meningitis, which was a fungal type of meningitis, was back. 

 

And so we had to go through the whole procedure again and my body was very much weakened. But this time they put the Amphotericin B directly into the brain and I’d had, I had a tube which is put into the brain so that they could put, take readings off, from the fluid directly off the brain. And then I had a shunt put in via the brain and that didn’t work, that furred up with the fungal infection, so they had to take that out. They put it in the brain, took it out via the brain and then they put another one in, the shunt went in at this level, and so again, it’s to take fluid off the brain. And it worked that time. They were saying, they said to a friend of mine, because I wasn’t really taking too much notice I don’t think at that time, they said to this friend, ‘well if this doesn’t work, and if this treatment doesn’t work, then we don’t hold out much hope for a treatment, a course of treatment for another 6 weeks, the body won’t survive’, because I’d lost a lot of weight; I was a good 2 stone lighter than I am today. Yes, 2 stone and it’s, being 6 stone is, I’m not built to be 6 stone. I’m built to be more like 8½ stone, and so I had lost an awful lot of weight, I was being sick all the time, I was having Amphotericin B directly into the brain. 

 

It was a physically hard disease, that was, compared with the cancer, which was an emotional, I just see them as two very separate types of disease. Cancer is an emotional, with the meningitis I felt very much as though it’s a physical thing, I’ve cracked it and that won’t come back. 

 

She had occasional epileptic fits in her youth, which stopped after she changed her behaviour. The fits returned when she developed meningitis as a complication of ovarian cancer treatment.

Is there any connection between your meningitis and the epilepsy or have you always had epilepsy?

 

I’ve always had epilepsy. I’ve had epilepsy since I was 15, I had a first fit when I was 15 and I had occasional fits throughout my teens and 20s, and then I decided I wanted to learn to drive, so I thought, ‘Well, I’ve got to change my lifestyle a little bit then’, because I probably enjoyed a glass too much of wine, staying out too late. Well the things you do when you’re in your teens and your 20s, staying out too late, going to discos, bright lights, flashing lights, too much to drink and then an early morning. And if that happened I had a very much increased risk of having a fit. And so although the fits were occasional, when I say occasional, perhaps about every once or twice a year, that’s all, it did stop me from learning to drive. And I thought, well I want to learn to drive, so I’ve got to change the way I act, and I did and I learned to drive. 

 

And in terms of fits since the meningitis, I did have fits in hospital because of the meningitis, because of the swollen meninges, and yes the epilepsy came back. I had about 4 or 5 fits because of the meningitis but then since the meningitis has gone I haven’t had a fit. So I had the meningitis in 1994, June 1994 and it’s 9 years now. So it’s 9 years again since I last had a fit. And it’s only, it would have been 20 years had I not had meningitis. 

 

But the epilepsy is extremely well controlled. I am on a number of drugs for that. Hopefully I will, I’ve been moving towards removing Phenobarbitone; I’m on Phenobarbitone and I don’t want to be on Phenobarbitone and the consultant feels that I should actually stop taking Phenobarbitone over a number of months, reduce the dosage. And then I will just be on Tegretol 400mg, 2 tablets a day, which apparently is a very low dose for maintenance, a fit free life.