News & stories Personal stories Barbara My name is Barbara and at the time of diagnosis I was a happily retired single 64 year old librarian, enjoying having no responsibilities for anyone else, having spent several years supporting elderly parents. I had a busy and fulfilling life, including a weekly Pilates class, socialising with friends and family and was involved in two lots of voluntary work. I enjoyed playing Scrabble, other word games, going to concerts and watching TV quiz shows and wild life documentaries. I also followed tennis and snooker on TV when possible. During the summer of 2015, a friend told me I was losing weight, my sister noticed I had less energy than usual when on holiday with me and I was feeling tired at weekends. Eventually I weighed myself at a friend’s house and was shocked to find I had indeed lost over a stone without any intention of doing so. Having worked at St Christopher’s Hospice as a librarian, I knew that weight loss of that magnitude could indicate there was something seriously wrong, so went to see a GP. I had been concerned with excessive bleeding from spots and after discussing this symptom, he asked me if I had lost any weight recently without intending to. When I told him over a stone, he asked to examine me and as soon as he put 2 fingers on my tummy, detected a swelling and said he would like to send me for an urgent “baby” ultrasound. I then told him that my brother had died 2 years previously from pancreatic cancer and he hastened to reassure me that it was unlikely to be that in my case as there was no jaundice. He told me it was more likely to be ovarian or bowel cancer and he would like me to have a blood test for a tumour marker called CA125, which could be an indicator of ovarian cancer. Without realising it, I was now on a cancer conveyor belt which would carry me through tests, investigations, consultations and treatment for the next 9 months. It was a surreal experience and I often felt I was living in a parallel universe, watching all that was happening to me as though it was somebody else. It is difficult to explain, but other people with OC (ovarian cancer) have told me they felt the same. It seemed like a phantom disease as I had had no symptoms prior to diagnosis apart from unintentional weight loss and feeling more tired than usual. However, an ultrasound on 24 Aug 2015 showed a tumour the size of a large grapefruit and the report said it was highly suspicious for ovarian malignancy. My own GP gave me these results next morning and explained that I would see a gynaecologist at my local hospital and treatment would be total hysterectomy followed by chemotherapy. I saw the gynaecologist on 4 September and he told me I would be transferred to a specialist cancer centre for surgery and subsequent treatment as the tumour size would make it a complicated procedure. Nearly 3 weeks later I went for my first appointment there, was given a folder of Macmillan information including a booklet entitled “Ovarian cancer” and a surgery date for 19 October. By the time I had surgery the tumour had increased to a large melon. I knew it was growing rapidly when I bought a new pair of trousers and 10 days later they wouldn’t fasten around my waist. It was scary to think this alien thing was growing so quickly inside me, and I found the 3 week wait for surgery following diagnosis, the hardest part of the whole experience. I also found from early October that my appetite had decreased and I was experiencing nausea which made me even less inclined to eat. By the time of my surgery I was only consuming fortified drinks. On 20 Oct 2015 I had a Total Abdominal Hysterectomy which went very well and I was discharged after only 5 days in hospital. Unfortunately I developed complications, so had to be readmitted for another 13 days. I came out of hospital very weak and in November I met my oncologist for the first time.' She told me I had an aggressive form of the disease (High grade serous carcinoma stage 3C) which was very responsive to chemotherapy but likely to recur. However, she assured me that if it did, there were plenty of other treatment regimes available and these days Ovarian Cancer is regarded as a chronic disease. In December 2015 I started 6 cycles of Carbo/Taxol chemotherapy, which ended in April 2016, but did not go as smoothly as expected. The first dose was fine and I lost my hair as predicted, which proved surprisingly distressing even though I had known that it would happen. After the 2nd cycle I developed a high temperature and had to be admitted via A&E to my local hospital for treatment with IV antibiotics for a chest infection. Unfortunately on day 4 of my stay, I noticed that my right leg had swelled from ankle to hip and was concerned that I had developed a DVT. It turned out there was no DVT, but when I asked what else it could be, I was told liver, heart or kidneys, which I did not find reassuring. I was discharged the same day and when I got home phoned my CNS. She explained to me that something called a seroma had developed due to the major abdominal surgery and was a fluid filled cyst which was pressing on lymph glands in my groin and stopping the leg draining properly. Usually such cysts were reabsorbed by the body within a couple of weeks and indeed that is what happened. After my 3rd cycle of chemo, I developed peripheral neuropathy in my feet and finger tips, (numbness and tingling), so my oncologist decided to leave the dose of Taxol at 75 per cent and only to increase the Carboplatin to 100 per cent as she did not want me to be left with permanent nerve damage. This proved to be a good decision as the neuropathy has stayed the same and been manageable with special shoes. My final cycle of chemo was fine with no complications and not even worse fatigue which surprised me, having been told that it is cumulative and finding that to be true with previous cycles. Two weeks later I saw my oncologist after a final CT scan, to be told my CA125 was 13 and there was no evidence of any cancer. The treatment had worked! At time of writing, I am still NED (No Evidence of Disease) over 2 years later. However, my recovery has not been as straightforward as I anticipated and I have only recently reached a new normality and can tell people I am fully recovered and back almost to pre-cancer me. Last week I reached an important milestone for me in my recovery, when I had a successful perm for the first time since completing chemotherapy, and at last the person I see in the mirror looks like the old me again. I have also had no episodes of fatigue for the past 2 months, which is a much longed for improvement. I have stopped pacing myself and am doing whatever I fancy, so far with no ill effects! Finally my sister and I have planned a wonderful trip to Australia and New Zealand next spring and we are looking forward to seeing relatives and wonderful sights.