News & stories Personal stories Diane In March 2013, after a tumultuous few years, I met my partner who is now my husband. Although we lived two hours apart we made it work and saw each other most weekends and spoke every evening for hours at times. We had an absolute blast that summer with music concerts, festivals, visiting places of interest and exploring the land around Glastonbury where I lived. It was a magical year, we were madly in love and we couldn’t believe our luck at our age. A few weeks before Christmas of the same year I woke with sudden pain in my lower back and abdomen. It kept me awake most of the night but subsided with no obvious explanation as to what had caused it. Being a nurse, I wouldn’t normally see my GP unless I absolutely had to, but this pain bothered me due to the intensity and I just felt something was not right. I went to see my GP that same week and although she tried to reassure me with reasonable explanations such as constipation, trapped wind and menstrual cycle issues due to menopause, I still felt that the possibilities that she put forward did not justify the intensity of pain I’d experienced. I had suffered for many years with constipation but it was more troublesome of late and I had also felt more bloated than usual. I’d noticed that I felt more tired come the winter months but this was hardly surprising given my job as a Community Palliative Care Nurse Specialist which was extremely busy in addition to the wonderful year I’d had. My GP arranged for an Ultrasound Scan in the New Year which showed up a small cyst on my ovary and the blood tests were fine apart from the CA125 being quite raised. With my professional knowledge and my gut feeling, my mind went into overdrive despite the copious reassurances from my GP. I was fast tracked to the gynaecology team and the Consultant categorically stressed to me that he thought this was a "haemorrhagic cyst" (a condition which occurs during ovulation when an egg is released through an ovarian follicle on its surface, and that follicle bleeds into a cyst) and that I should not worry about anything. He said the cyst was tiny and that he wouldn’t normally operate on something so small, but given my concern he agreed to remove it. My Mum was sat next to me and she felt so reassured by the words she heard but funnily enough, I didn't. The ‘cyst’ was removed and after surgery the Consultant came to the ward to tell me I had ovarian cancer. My poor Mum was devastated but the news didn’t come as a surprise to me really. As my sister drove us all home I remember how blue the skies were and the sunshine was so beautiful. “What a lovely day to be told I’ve got cancer”, I said to my sister and we hardly stopped laughing at that all the way home. Life had changed for me and my loved ones in a split second and yet life remained so normal still in the real world. I was quickly seen by the gynae-oncologist. I underwent a series of investigations to see if the cancer had spread and we discussed chemotherapy. I had long dread locks which were my pride and joy and I realised that I would need to get my head around the fact that my hair would fall out. In April 2014 I had my laparoscopic hysterectomy, removal of ovaries and omentum and whilst recovering in anticipation of chemo we awaited the histology. It was a long time coming but when we received the news it was not what we expected. Suddenly my diagnosis changed and I was told that I had borderline ovarian tumours and wouldn’t need chemo. This created so much confusion for me and everyone else as we had been prepared for one thing and it turned out to be something different. Borderline is a tricky disease to diagnose let alone describe in that it is not full blown cancer but it’s not "not cancer" either. Suddenly everyone around me seemed to be relieved and grateful that this was not as serious as first thought. This was not how I felt. I had been to hell and back with all the reassurances, followed by the worst possible scenario, back to a less serious scenario, plus thrown into surgical menopause with all its challenges. I didn’t feel much like myself anymore and felt pretty low during this period of time. Ovacome online was so helpful at this time because it had specific information related to borderline ovarian tumours which really clarified what this disease is and where it fits in to the picture in terms of ovarian cancer. It also had great information about menopause and intimacy, both of which were suddenly huge life changes for me as a woman. Finding credible and trusted resources is extremely difficult when you trawl the internet as there is a huge amount of information out there. I stress that not all of it is useful and can in fact be very damaging, so my advice is to only use sites like Ovacome, who proved to be an excellent resource for me and for my loved ones. I returned to work again in September, trying to get back to some sort of normality. Financially I also needed to get back to work because my sick pay was now half pay and even with benefits there was a deficit that didn’t cover all the bills and rent. I believe that my experience helped me gain so much more insight into what my patients had and were still going through and it made me a better nurse. It was hard going back because I was changed as a person thorough what I had endured and yet everyone else was the same. I returned to me gynae-oncologist a year later in August 2015 as a routine follow-up. I explained that I was experiencing bloating and constipation again and felt very tired which he said was highly unlikely to be anything to worry about. He sent me for a CT scan in the hope that this would convince me that I was fine. It revealed a "small" enlarged lymph node that had been missed during surgery. I had that removed and again I was reassured that it looked like healthy tissue and nothing to worry about. The histology said otherwise and I was diagnosed with low grade serous ovarian cancer. Again I was not surprised, as I just knew my own body and knew something was not right. I would advocate all women trust their instinct and if they sense something is not right please make sure they get that across to their doctors. Women know their own bodies far better than anyone else. In December 2015 I started six cycles of Carboplatin and Paclitaxel chemotherapy and on New Years Eve my hair was starting to noticeably fall out. My partner cut my beautiful dreadlocks off for me and shaved my head. He helped me a great deal at this time because he also shaved his hair off in support of me and helped me to cope with losing my hair. By February I was so ill, anaemic and neutropenic (when a person has a low level of neutophils, a type of white blood cell), so the Paclitaxel was stopped and I continued with Carboplatin. My partner traveled up to take me for some chemo appointments and my sister helped with the others, but they both worked full time so had to keep taking time off work for this. Although they helped as much as they could, I was largely on my own in between chemotherapy cycles and they couldn’t be necessarily with me when I really needed them. During chemo there was a pattern to each cycle in that on the day of chemo I was fine, albeit tired, but by day 4 I was completely exhausted, unable to eat, nauseated and generally quite poorly for about 5 days. Twice I had to go to hospital because my temperature was high, I was neutropenic and I required IV antibiotics. I completed my course of chemo in April 2016 and hoped to give myself time to recover before returning to work. However, this never happened because I didn’t pick up very quickly and my sick pay stopped. This meant that I had to make the heart-breaking decision to retire through ill health from a 34-year nursing career and I also had to give up my home in Glastonbury which was rented. To this day I still feel sad about those decisions but they did prove over time to be right. It’s not just cancer that we have to cope with but a whole host of other life changing challenges and events in the aftermath. From 2016 I was in remission for 8 months, but the cancer returned and I am living with the disease in the best way that I can. I took hormone blockers for a while but the side effects were intolerable for me and as an individual I value quality of life more than anything else. Hormone blockers can help increase the time between recurrences and they do this extremely effectively for many women. Unfortunately I developed breast cancer in January 2018 and had a wide local excision of the lump and removal of the sentinel lymph node which was clear. This was followed up with 21 doses of radiotherapy which I completed in April. I was seen by the genetics team and after testing I have been found to be BRCA negative. Living with low grade serous ovarian cancer can be extremely frustrating because it is so rare. I have had to be my own advocate and challenge clinical decisions at a time when I felt emotionally labile and less than well. Low grade ovarian cancers do not respond in the same way as high grade to chemotherapy, yet this is still the go-to treatment of choice. Hormone therapies (aromatase inhibitors) have been shown to have a good effect in low grade ovarian cancer patients and questions are being asked as to whether surgical debulking of the tumours followed by hormone therapy should be offered as first line treatment. Again, robust research needs to take place to enable low grade ovarian cancer to have its own treatment guidelines and I hope for that day to come soon. This is my story and although the disease seems to have been relentless I have never given up hope. I would say to any woman with ovarian cancer to use the support and resources out there because they really do help you and your loved ones to get your head around what is going on. Sites such as Ovacome are a wonderful resource for you so please use them. Although I didn’t use the online forum I do advocate that sharing your story, your hopes and your fears with others in the same situation is of great support. I belong to a Facebook group for low grade ovarian cancer specifically because of the rarity of this particular sub-group but you do need to make sure that wherever you get your support and information from is credible and trustworthy. Peer support is so good at making you feel less alone but don’t forget the gynae-oncology nurse specialist is always there too to help support you and clarify anything you are unsure of. You can live life with cancer. I and many like me are living proof of this so never feel alone and never give up hope. Treatments have come a long way since I started to work in the world of cancer and the one things I can tell you is that people live far longer now with cancer than ever before. Once you accept your new normal, life can resume and you can still have fun.