Interview OV17

Age at interview: 57

Age at diagnosis: 52

Brief Outline: Ovarian cancer diagnosed in 1998 following breathing and bladder problems, weight gain and bloating, and changed bowel habits. Treated by surgical removal of both ovaries and abdominal fluid, chemotherapy, then hysterectomy and further chemotherapy.

Background: Retired special needs coordinator teacher; married; 2 adult children.

Her CA125 levels rose indicating that her cancer had returned.

How did they know it came back? What was the sign?

What was the signs? Right, yes of course, I mean during the period of remission the hospital monitors how the cancer is behaving by giving CA125 tests, and we got to the stage when we had gone from one month, two months, three months, four months in between tests and that's when it came back, when we had just got about as far as four months. The count went up and then we had to sort of look to see what sort of chemotherapy to have.

Used her medical insurance to find out the results of tests taken as part of a clinical trial.

So we looked at another trial, but this time the trial was taking a sample and testing it in the laboratory to see which of the chemotherapies affected it. So we did that but I couldn't cope mentally with not knowing the results, and therefore I had to, we used our medical insurance to actually find out the results so that I could see what my cancer reacted to and which one I was going to have. So I had a combination drug and in fact that suited me really, really well.  

Because in the laboratory they offered to take, the laboratory test offered to take a piece of the tumour and to see what would affect it, and I wouldn't have that, you know, I said to my surgeon I said 'I do not want a knife to go into the tumour' so I waited until I got some ascites and then a very nice man who normally does the antenatal ladies and does the amniocentesis, he used his long needle to take out some of the ascites from that and that was sent away and I had great faith in that. I just didn't want the tumour cut, mentally I couldn't cope with that. 

So when it was sent away to the laboratory it came back and it doesn't say 'this will work', it says 'this might be helpful' and one of the combinations, which was the first one they tried on me, was gemcitabine and treosulfan, and that's the one that I had for fourteen lots every other week.

She had recently been put on morphine to control her pain.

And in fact a few days ago I had to go onto the ward, I was captured by the oncologist, she wouldn't let me go home because I was in denial about the pain that I was in. And so I was taken on the ward for several days and I've started on a regime of morphine. So with this regime of morphine comes a lot of mental pictures because people immediately think 'right, you're on morphine you must be getting nearer to the end', I mean although it's just being used as a pain control it's obvious from the nurses reaction that that's how they are treating me. 

Saw her '5 year survival' party as an occasion for her friends and family to meet before her funeral.

We had the party and that was absolutely wonderful, it was on a beautiful day and lots of people were here and we had wonderful food and wonderful conversations, and as I pointed out on the day, this day was, I didn't see why they should have a party at my funeral and I can't see what's going on, so it was a pre-funeral party that we could all enjoy and all enjoy each other's company, so when the time does come for me to have a funeral, people will know each other and be able to talk to each other, and they will be able to have that memory. So that to me will be lovely that they have got that memory.
 

Sought information and visited internet chat rooms where she could contact other women with ovarian cancer.

So did you seek out lots of information after your diagnosis, did you seek out lots of information for yourself?

Did I seek it out? Yes I did, in fact we hadn't got a computer, my husband went and bought a computer so that I could find out as much as possible. And in the middle of the night when you haven't had cancer for a long time, night time can be very dark, and it was a time when I also went in the chat rooms, I looked up information and I also went in the cancer chat rooms and talked to other people and found only one or two people with ovarian cancer but we did build up relationships and I was going to see one of them in New York and she died the month before I went, unfortunately, but, you know, we had a lot of quality time even in the chat room together.