News & stories Personal stories Lorraine I was diagnosed with ovarian cancer in June 2018. I felt that I had been putting on weight and was quite tired. I went back and forth to the doctor who didn’t take me very seriously. They checked my tummy but couldn’t feel anything, so said it was just the ‘middle age spread’. Then I went on holiday to Sicily and it got so bad that I couldn’t breathe, couldn’t eat, and looked like I was nine months pregnant. I had another three or four visits to the doctor. When I finally had a scan, it showed fluid around my lungs, which needed to be drained. However this couldn’t be done as it was too close to my heart. The consultant spoke to me and said that he wanted to order a scan of my abdomen. This was done on the same day. After the scan, he said he would get me seen by a consultant gynaecologist as soon as possible. I saw that gynaecologist a week later, who ordered a biopsy. I then had to have ascites (fluid) drained from my abdomen, as by this point I was feeling very sick. I was referred to oncology after that. My treatment plan for ovarian cancer was to be three chemotherapy sessions, major surgery, and then three more chemo sessions. I was going to receive carboplatin and paclitaxel, and then Avastin. I was then asked whether I wanted to join two clinical trials. One was on the use of MRI in preparation for surgery, to see whether this could improve outcomes by giving a clearer picture before the operation. I agreed to this trial. The other trial was looking at the possibility of spreading dosage out, giving it every week instead of every three weeks. I eventually pulled out of this trial as there were several delays, and I couldn’t wait any longer to start treatment as I was so unwell. I started my chemotherapy, which went fine, but there were long delays in getting my surgery. So I ended up having five chemotherapy sessions before my operation, and had one more afterwards. They thought that I would need a stoma, but this didn’t end up being the case. Initially I was told that the surgeons had managed to remove all visible disease, but when I had a scan there was still residual disease. Once I finished my chemo, I had Avastin for a year. My CA125 came down from over 4,000 to 9. One thing I do want to say is that you tend to think your treatment will go to plan – but it rarely does. You have to be prepared for things to change. You might show up at hospital and your blood pressure is too high, or your blood tests for liver function aren’t in a normal range, etc. So your treatment could be delayed or adapted several times. At my second chemotherapy appointment I had an allergic reaction to the paclitaxel so I had to move to carboplatin only. This concerned me as I was worried it wouldn’t be as effective. Since I’ve had a look at the Ovacome website, I’ve read about other women on different treatments. I was never told about these or given much information about the different options. Similarly, I was offered those two clinical trials but not told about any others that I might have been eligible for or interested in. So I would really encourage everyone to inform themselves. I was first given an Ovacome leaflet while I was in hospital. I started looking into the community and finding information, being more proactive. I started eating a healthier diet, doing a bit more exercise, and focusing more on relaxation and meditation. I became far more positive and am living every day like it’s my last. I joined a sewing class to learn new skills and meet new people. Then Covid hit, which was quite difficult. Anyway, I decided that to get through it, I would set myself the challenge of walking 100 miles on coastal paths. We’re very fortunate to live by the beach. It was a lovely experience. My friends and family helped me along the way and I got lots of sponsorship which I gave to various charities. It just made me so much more appreciative of what I’ve got and what life is really all about. . . Last year I had some bleeding when I went to the toilet. Any sort of symptoms like that you get extremely anxious about. I went to the doctor thinking the worst, but it ended up being kidney stones. In November 2020 my CA125 started rising, and it was up again in January – although it was still within the normal range. The consultant sent me for another scan, which showed no evidence of disease. So it’s been nearly four years since I was diagnosed. My mantra is “every day spent sad is a day wasted”. That’s not to say that I don’t ever feel sad or angry, but I don’t dwell on those thoughts. We had planned to travel and volunteer overseas after my retirement which we haven’t been able to do, because of my diagnosis and Covid. But I try to look at it like this: my dreams haven’t been shattered, I just need to adapt them.