News & stories Personal stories Gaynor Published September 2021 As someone who lives on Isle of Man, almost 60 miles away from Liverpool, this means that if we don’t have certain medical expertise on the island, we go to either Liverpool or Manchester for our care. If you are an islander or live in an extremely rural area you are probably in the same situation. What you need to appreciate is the lovely/incredible area you live in. This will help you during your ovarian cancer experience. It is going to be hard just keep positive and just appreciate everything around you… there is no doubt this helps enormously. Prior to my diagnosis, I had most of the common symptoms of ovarian cancer: I felt full, had no appetite, had a change in my bowel movements , urgency to wee, feeling extremely tired after a small amount of exercise, backache, but also had problems with indigestion. The ‘final straw’ was in November 2019, when I started spotting. As you can imagine, at the age of 71, this was an enormous shock. I didn’t actually put as much urgency on spotting as I should have done, however I did see my GP within a fortnight. She took several blood tests (included a CA125 test) and when she received the results she immediately arranged an appointment with a gynaecologist at my local hospital. That appointment was on 27 November 2019… a date I will never forget. I had two ultrasounds and a CT scan, then I spoke to the gynaecologist regarding my diagnosis. My husband and I have been married for 46 years, but at that time he couldn’t attend the hospital appointment with me, because he had had a knee replacement operation the week before. So I had to relay everything to him. Luckily my son-in-law’s mother who used to be a nurse came with me to my appointment for support. The doctor went through the CA125, ultrasound and CT scan results. My CA125 level was 180. Today, my CA125 is 8 – which shows how elevated it was before my operation and treatment. After he had given me the results of my tests, the gynaecologist asked me if I knew what my diagnosis might be. I was aware of the link between CA125 and ovarian cancer, so I suspected that this could be causing my symptoms. I just didn’t have any idea how far the disease might have progressed. The specialist told me that he suspected that I was between stage 3a and 3b, based on the scan results. He told me that I would be referred to a hospital in Liverpool, because there was no one on the Isle of Man who specialised in the treatment of advanced ovarian cancer and I was told I would need to see a specialist in Liverpool within six weeks. I saw one of the specialists in Liverpool in January, for my pre-operative appointment. We had to fly over from the Isle of Man… this is the real difficulty of living on the island – it’s a fantastic place to live, until you fall ill with a condition that requires specialist care. My medical team in UK is currently based at another hospital in Liverpool. They liaise with my specialist on the Isle of Man to discuss my case. When I have my tests and check-ups at my local hospital, the results are always transmitted to a specialist doctor/nurse in Liverpool (currently every 4 months). At my pre-operative appointment in Liverpool on 15 January I had more blood tests, then the specialist discussed my case with me. She told me that they would need to operate within six to eight weeks, as the disease was advanced. The tumours had also grown since my first scans in December, so it was a matter of urgency and I needed to begin treatment as soon as possible. She gave me the option to have my operation in six or eight weeks’ time; I elected to go for six weeks because I could see that time was of the essence. Before my surgery I was told that I might need a stoma, because the ovaries are so close to the intestines… worrying. Four weeks passed. I was informed before I flew to Liverpool that my surgery would be carried out by one of the best surgeons in the North West of England, which reassured me. When the surgeon introduced himself upon my arrival, he also introduced me to everyone else who would be involved in my operation. He went through each individual person who would be in the operating room and they individually explained their role, which was an incredible experience. I’ve had many operations in my lifetime and that was the first time that a consultant had done that for me. It gave me a lot of confidence in my surgeon. I’ve found that with some healthcare professionals, you can feel that you’re going through a factory, rather than being treated as an individual. The operation lasted five hours, as it was very extensive. I had a total abdominal hysterectomy, a bilateral salpingo-oopherectomy and I had my omentum removed. A histology report later showed that there had been cancerous cells in my omentum (the layer of fatty tissue that surrounds the abdominal organs), so my surgeon made the right decision by removing it. After the operation I was in hospital for eight days during which time storm Ceira had started up. I had to travel home across the Irish Sea, in gale force winds, which was a terrible experience. I had only had my major surgery one week earlier and the aeroplane seatbelt was very uncomfortable on my abdomen and new scar. Luckily the air stewardesses gave me plenty of cushions and padding which helped enormously. After this terrible journey, some of my wound was affected so once I got home I had to call a district nurse to come and add strips to my wound which eventually healed after 2/3 weeks . On the 15 March, I had to go back to Liverpool for my histology results, but this time I had to go via ferry to Heysham near Morecambe as the airline I would usually have taken had gone under, so I wasn’t able to fly to Liverpool. Once we arrived in Heysham, we had to travel down to Liverpool. My surgeon had done a fantastic job, although of course they weren’t able to tell me categorically that all the cancer was gone. I am aware that the disease could come back, but I try to just live for the day. The stage of my cancer was confirmed as stage 3a2. I was told that I would need to be treated with carboplatin chemotherapy. I could have gone on carboplatin with Taxol, but I was advised against this. I have a history of bad healing and I have lots of allergies, so my team were worried that the Taxol could cause sepsis. Because of this, and because my operation had been so successful, it was decided that I would have carboplatin only. I was due to start chemo on 8 April, but due to a technical issue at my local hospital, my treatment could not start and was postponed for two weeks. My first chemo was fine, then after my second round I started having pins and needles all down my right side and in my feet. After my third chemo, I had a CT scan. I was contacted by the team in Liverpool to be told that at that stage, my scans had come back clear. I was extremely happy with this after only three rounds of chemotherapy ,however there was a benign nodule on my adrenal gland, but this wasn’t a cause for concern as far as the medics were concerned. I had three more rounds of chemotherapy and my final scans results on 13 August showed no evidence of disease. Thank goodness. Throughout this time, something that stood out to me was an event that took place just before Christmas of 2019, when I was first diagnosed. My grandson who was only 10 at the time, was asked at school to share his Christmas wish-list with the class. All the children in his class stood up and asked for various toys and electronics. When it was my grandson’s turn, he stood up and told the class that he just wanted his Gran to be better. At the age of 10 he understood what I was going through. A few weeks later, he asked me whether I was going to have my chemotherapy first, or my operation first, so he’d clearly done some research. It made me realise how much I wanted to see my grandchildren grow up and that I couldn’t give up. It has been very difficult, not being able to see loved ones in UK face to face over past 18-20 months because of Covid. I believe the emotional after-effects should not be overlooked as I have found myself in tears just talking about it even when I was all clear and hence the counselling sessions I had were incredibly valuable to me as you are not aware of the huge psychological upset that can result from a cancer diagnosis and treatment. I have felt that keeping one’s mind focused on something helps… in my case my garden and genealogy. To see how my garden was and how it is now has made me much more optimistic which helps me to look forward to the future and with the support of family and friends has helped. It proves one thing: one can get through it even though at times with difficulty. After 18 months I am considered in remission, but one thing is clear: you just have to make the most of life because you do not know what is round the corner. I have had a few other medical issues over the past six months, however I have been re-assured by local consultants that they are not life-threatening and will be resolved on the Isle of Man hopefully in the next few weeks. It has to be said I am incredibly lucky that I am currently in remission but I will make every effort to enjoy years to come. The Skype meetings/ phone calls from family and friends helped enormously me through the pandemic, which was hard with us being so isolated . Now that the Pandemic situation is slowly improving we have made arrangements to see our immediate family in UK who we have not seen for 18 to 20 months. This without doubt is going to be an extremely emotional time for us.