News & stories Personal stories Jem Published January 2022 For a while I had noticed that when I went for a meal and drinks with friends, by the end of the evening I was feeling very bloated with lots of flatulence – I became the joke as I trumped my way home! During the summer of 2020 I thought I had a bug as had constant gripes in my tummy, but this continued. In the August I tried a lactose free diet thinking that may help and it did for a while. However, I noticed I had become very constipated and thought this maybe the reason for the gripes. Again I took over the counter medication but still no joy in alleviating the gripes. My tummy would bloat after eating, itfelt very uncomfortable to sit and found it difficult to play with my granddaughter. I thought this was all to do with constipation. I called the doctor and with it being during the Covid pandemic, I was unable to see anyone, but discussed my symptoms over the phone. He prescribed Buscapan (which relieves stomach cramps) and Cosmocol (a laxative) for the constipation. By end of September this was not getting any better, if anything it was getting worse – so I called doctor again and this time he sent me for a full count blood test. This came back normal and I remember him telling me that this was nothing sinister and nothing to worry about. I was given omeprazole for the acid reflux I was beginning to get. I carried on with the medication, but my friend said, “Have you looked at the symptoms for ovarian cancer? They match yours”. So at the end of November, I asked for a CA125 test which I had read can be a marker for ovarian cancer. The next day I was called into the doctor’s surgery as the result was 2,101 (normal range 0-35). I was given an internal examination and referred immediately to a gynae clinic. I was seen in the hospital on 4 December. I was told there, without any examination, that this was definitely cancer. This was very hard to hear especially when every appointment and test had to be alone due to Covid. I had an examination which showed suspicious masses in my pelvis, which represented peritoneal or ovarian disease. Also a suggestion of omental disease. I was then referred for a chest, abdomen and pelvis scan. My scan was scheduled on Christmas Eve where I had a drain put in for the ascites (a build-up of fluid in the abdomen) and a biopsy of the omentum (the layer of fatty tissue that surrounds the abdominal organs). I stayed in day surgery for 12 hours where I had five litres of fluid drained and my tummy was relieved of the bloating feeling. So much so that I enjoyed my Christmas dinner with my family. However, this was not to last. Two days later I started vomiting and could not stop. I was taken in to hospital overnight for fluids and to stop the vomiting. My consultant phoned when I was home to say this was because of the type of cancer I have, and that he was referring me for chemotherapy as soon as possible. I also had a flexible sigmoidoscopy (a test to look inside the lower part of the large bowel) on 4 January 2021. I received a letter from my consultant on 15 January to tell me that the biopsy showed an ovarian cancer type called papillary serous carcinoma arising from the peritoneum and therefore stage 3 disease. The result of sigmoidoscopy showed no evidence of malignancy in my bowel. At the end of January, I was feeling so poorly and could not stop being sick and by this time I was approaching four stone in weight loss. I was so weak I actually phoned 111 and from there I was in hospital for five days on a drip and monitored. This was also very hard as I had to do all this alone again due to Covid. When I got home I was referred for chemo as soon as possible as was told this would help should I respond to this treatment – so agreed to start straight away, and signed consent forms. I was contacted daily by a dietitian as by this time I was on protein shakes but couldn’t keep these down either. Starting first week of February, I had three treatments every three weeks of carboplatin/paclitaxel along with bevacizumab – this was all very daunting as just taking the odd paracetamol was normally a big deal for me. My CA125 level came down to 628 after the first treatment and then to 15 after the second, which was great as it indicated I was responding. These long treatment days alone and the side effects were quite rough, but I soon got used to them. Losing my hair and having sores in my mouth were the two side effects that stand out for me. Others were sickness, diarrhoea, acid reflux, numb hands and feet. I was quite traumatised when I lost my hair and wore hats for a while but my confidence was rock bottom – looking so thin and gaunt, with no hair and eyebrows, I looked like a cancer victim. One of the chemo nurses suggested an NHS wig and my immediate reaction was to say no. I was going to try and buy a nice real hair one. However, she insisted I look at them and when I went I was shown some lovely wigs and found one the same colour and length as my own hair. I took it to my hairdresser and had it shaped – they were shocked at how real it looked. This was a godsend in lifting my spirit and confidence. At the end of March I had another CT scan which showed that the mass had shrunk and I was told that surgery would be possible. I had one more chemo treatment as I had to allow a six week break should I have an operation. I went to see the surgeon who was happy to do this surgery, but there were no guarantees. My operation was booked for 24 May 2021 in Southampton, as they do not do them on the island where I live. Again I had to take myself there and was alone throughout due to Covid. I had a full hysterectomy and omentectomy and stayed in hospital in a room on my own for five days. I had an incision from under my boobs to below my bikini line with 74 staples. However, I rested as instructed and eventually was well enough to start chemo again. In June I restarted chemo and had another two treatments taking me to six in total. My result of my surgery was relayed to me by phone by my specialist cancer nurse. She said I was the star of their meeting where they discuss their cases, as they were able to get rid of everything and there was no residual disease. I was put on bevacizumab (Avastin) every three weeks as a maintenance drug for another 22 sessions, this was mainly because of the ascites I originally had. I am currently on this and due to stop in March. I have since had the BRCA gene test but I do not have that. I cannot believe this has happened to me, as one minute I was out walking my dog and cycling, then the next I was suddenly thinking I might not see 2021. It was all made very hard because of Covid, as I live alone and I was not allowed anyone in to help me or have anyone accompany me to any appointment or test. It has been the toughest journey of my life but can honestly say I feel better now than I have in a long time. I am still on the maintenance drug but I am able to eat and putting the weight back on. I have been lucky and had great treatment/care by the NHS. The only complaint I have is that I wish doctors will not assume IBS (Irritable Bowel Syndrome) when a woman presents symptoms like these and that they would order a CA125 test straight away. I am now taking each day as it comes, my hair is now starting to grow back but I will still wear the wig for a little bit longer. I do think that I am cancer free or ever will be, but I know my quality of life is so much better now. I thank my friend for suggesting the test and for insisting I ask for it. I never had any gynae problem throughout my life and sailed through childbirth/menopause. I also had no family history.