News & stories Personal stories Alex January 2019 I was diagnosed at 62 with low grade serous stage 3a ovarian cancer in November 2018, following UTI after UTI and what doctors thought was IBS or thrush. After a few years of having a “sensitive bladder” and forgetting to drink enough (I talk a lot in my job), I was getting urinary tract infections quite often. A nurse I saw for a smear put it down to possible incontinence. I knew that this wasn’t the issue. Then I started having strong abdominal pain while sitting at my desk, which seemed to be a tummy upset, as on having a bowel movement any pain went. Eventually a month so later I saw a locum GP who put me down the urgent bowel cancer process. I had a colonoscopy which came back clear “but a bit pink”. Over some months I had a few stomach migraines, sickness and stomach upsets and went to a nutritionist and started eating only greens and chicken, no sugar, dairy or gluten. This helped a lot. She thought the fibroid I’d been diagnosed with a few years before the menopause may be pressing on the bladder, causing the UTIs. I delayed going back to the doctor as I didn’t want to bother them and thought it was explained by IBS as discussed with another locum after the colonoscopy. I had a lot of energy still and didn’t really feel “ill”. However things were still not right so I asked for a CA125 blood test. I was told it isn’t used as a screening method by my GP but to come in if I was worried. As the symptoms seemed to settle down I didn’t want to bother him. That was about two years ago. Things were uncomfortable when driving on uneven surfaces and I couldn’t go more than 40 minutes without urgently needing a wee. I thought I could feel my organs moving about inside me and now I know why. Another UTI in June and again in July and a feeling of general abdominal and bladder inflammation made me go to the GP (another locum) yet again. The first time they assumed it was thrush. Then a different, more senior GP in our practice palpated my tummy and said I was “growing a football in there”. That week I had an ultrasound and then a CT scan within days (in early August). My bloods were taken and my CA125 was 80 (above the norm of 35). I was terrified that it could be cancer. The consultant said she thought it may well be, but probably stage 1. I had sleepless nights and despite being a psychotherapist I became by turns a three year old emotionally and someone facing the possibility of an early death with all that entailed: needing to make it easy for others while frightening myself by reading horrible and discouraging statistics on Google. I saw the gynae consultant who explained that I had fluid in the uterus and sent it for biopsy, together with some lining of the womb. A multidisciplinary team from Oxford and Swindon discussed my case and agreed surgery would be the best way forward, then a proper biopsy could be taken post-op. I had a radical hysterectomy, ovaries, tubes, cervix and part of the omentum removed in early October where she told me the “cyst” had become attached to my pelvis, liver and kidneys. All of the cyst was removed however sadly it was bigger than they had thought and it burst during the operation. I contracted cellulitis post-op on day 3, which cleared up with yet more antibiotics. I had a catheter so I didn’t have to worry about going to the loo. I did need help untangling the catheter when I had a wash though. I wasn’t eating or drinking so was on a drip. Having a bowel movement stopped the feeling of sickness – a major milestone was being able to pass wind! The surgeon explained that the bowel has a tantrum if it is handled and tends to stop working. We had a minor hooray when a fart was released. I was discharged in 5 days, as I had been feeling sick and unable to eat until then. Even water made me feel sick. I was able to move slowly and gently and walked round the block to try and get some strength back. Constipation and piles were a problem too, which added to the overall feeling of being unwell. I was glad a nurse had suggested I have a cushion for car journeys so that the incision was protected from the seat belt. Some staples were removed on day 11 and the rest on day 14, but I had to travel to see the nurse for this. I’d naively assumed that someone would come to me as I was feeling so fragile. Thank God the nurse were so kind and gentle. I was petrified that the results of the biopsy would confirm cancer. Many sleepless nights and head in the sand pretending everything was fine. I was diagnosed at the end of October by a different female doctor standing in for my surgeon with a very brusque bedside manner, who informed me that it was cancer. Ovarian low grade serous, stage 3a. This was such a huge shock. Even though I’d been afraid of the results, I had tried to visualise it being good news. I was then told to read the Macmillan books handed to me and go and have some cake in the café. I still can’t believe the lack of empathy. We cried at home in private. I started clearing clutter; I still am. I don’t know what the future holds but I don’t want my husband to be landed with 20 years’ worth of stuff which he then has to go through. I met my consultant oncologist a few days later to discuss the chemo process and side effects and he was more reassuring. He suggested that we treat it as a long term disease. I tried to get a feel for the time available to me but no one can say as we are all so different. Not helpful when you are a bit of a control freak. The Ovacome website has been so useful in giving hope to people like me when we see that even people diagnosed with stage 4 ovarian cancer can survive for years. I started 18 weeks of chemo (3 weekly carboplatin and taxol and weekly taxol only). That has been quite hard, knowing that you’re heading for feeling awful, with the sickness, tiredness, hair loss and joint/muscle aches. At the same time you are unsure as to whether the drugs are having any effect. Some people don’t go through it and opt for other drugs if they are suitable. I am trying to get my tumour tested to see if I am suitable for others later which he suggested. Since then talk of immunotherapy has been on the news, which offers a ray of hope. I am trying very hard to stay in the now rather than look too far ahead and apart from the chemo I am feeling much better than I have for years. I don’t feel old but I am realising that I’m no spring chicken and my heart goes out to those diagnosed in earlier life. I am currently a third of the way through chemo. Arm ache is this week’s hurdle. My CA125 had gone down to 11 last week which was great news. I’ll get a scan at the end of chemo in March and have a better idea of where I am. There will be 3 monthly follow-ups to start with which, if no recurrence, will extend to 4 monthly, and so on. I’m still learning and reading and trying to find sources of support and good news. I have found this through the My Ovacome forum. There are also some very sad stories and my heart goes out to these courageous ladies. My husband has been wonderful, allowing himself to be realistic and emotionally honest, taking over a lot of the domestics which I was recovering from the operation, and being positive when I feel really afraid or start catastrophizing. I have no idea what I would do without him – I’ve always been so independent and it is strange relying on someone else. Maybe that is one of the lessons of this disease. Generally the side effected of the chemo make me very tired and I do feel the cold a lot more. I miss my hot flushes! I find taking a walk every day is important as the energy levels are kept up and I think it helps with aches and pains. My hair is thinning a lot and I’ve had it cut very short twice already. I’m having to have injections, administered by my husband, to increase my neutrophils for 5 days in each 3 week cycle, which make me feel sick and adds to the constipation. My immune system wasn’t strong enough to have chemo on one occasion, so this really remedied that. I don’t like the taste of food and can’t face much for these few days but the rest of the time it has been manageable. I am hoping that this rare and chemo-resistant type of ovarian cancer will succumb to the chemo in this case and that it decides not to return. I’m trying not to see it as an adversary but something to try and understand. I am finding that self-care is a very important part of treatment, as is making time for myself to do the things I want to do; not just to get by, but to have a good quality of life, no matter how long it is. To feel that I have some control of everything is also very important. I hope this is helpful to anyone going through this situation. The Ovacome community are wonderful; as some say it’s a group you never want to join but you are glad it is there when you have need of emotional support or information. . November 2019 I now feel physically well and take a hormone blocker letrozole. For me the side effects include joint pain (which improves moving around), insomnia and hot flushes (slightly welcome in colder weather!). I try to walk 10,000 steps a day if possible. It really helps generally,feel stronger every day. I’m throwing everything I can at this cancer. I am fundraising to support the efforts of Cure Our Ovarian Cancer (a low grade ovarian cancer research charity). I recently raffled one of my paintings. There have been promising results from a recent clinical trial for a drug called Trametinib. It's not a silver bullet for our cancer but it's progress. It is currently available to melanoma patients on the NHS. I am keen for this coverage to be extended to women with my cancer. Even as a trained councellor I struggle with the emotional side of this cancer. I try to stop the panic and fear by staying in the present rather than thinking too far ahead. I finally get to see a psychiatrist next week. I’ve got to stay well as my husband was diagnosed with bowel cancer this week, a year after my diagnosis. This on top of a kitchen flood, so chaos in the house, no washing machine or floor yet after 3 weeks. I'm spinning plates. I hope to see more research and better treatments for women with low grade serous carcinoma in my lifetime.