News & stories Personal stories Barbara I really see the value in sharing personal stories because if you were just to look at the ovarian cancer statistics online you could go away completely horrified – but reading about the number of people who are living with the disease has been really reassuring. There are lots of new treatments coming through all the time, and people are now living much longer with the disease, so reading the old statistics and horror stories online is very unhelpful. I was diagnosed with ovarian cancer in November 2020. Despite it being during the pandemic, I was very lucky and was diagnosed quickly. After my GP had given me a physical examination, I was sent straight to A&E. All tests and investigations were then carried out promptly and my surgery took place just seven weeks after I was diagnosed. I’m always horrified to read the stories of some people who went back and forth to their GP over a long period before being diagnosed, despite having had the most common symptoms of ovarian cancer. I sometimes wonder whether I was seen so quickly because of my age, seeing as ovarian cancer is more common in those over 50. I think sometimes GPs might not consider cancer soon enough in younger people. All I would say to others is: if you have any doubts, just keep pushing. I’ve always suffered with stomach cramps and other stomach issues, on and off, throughout my life. So when I started to experience bloating, which was my first symptom of ovarian cancer, I didn’t think much of it – I just thought I’d overeaten. To be honest I didn’t really know anything about the disease and its symptoms. The bloating was accompanied by a feeling of being really full and not wanting to eat as much as usual. One night, I was lying in bed and felt my abdomen. I could feel that one side was hard and the other one wasn’t. This was what prompted me to go to the GP. Luckily I was sent straight to A&E by the GP, after they had felt my abdomen. I was diagnosed with ovarian cancer soon afterwards. My surgery took place just before Christmas. I was the last person to be operated on at that hospital before they started delaying non-emergency procedures due to staff shortages and the need to expand the Covid wards. I was more afraid of the chemotherapy than the surgery, because you hear such horrible stories and I’ve known people who had chemo 10-15 years ago, who had a really rough time. They were violently sick, constantly in bed and couldn’t carry on with daily life at all. So the first thing I would want to say to anyone who is about to start chemo is that things have changed a lot. I know that some people do struggle with it, but on the whole, I found it really wasn’t as bad as you might imagine. There’s lots of anti-sickness drugs now, and your team can change your dosage if you have a bad reaction. There are medications to help with most of the side effects. So trust your medical team and make sure you tell them about any side effects you experience, so that they can help you. My other piece of advice to those starting or recovering from chemotherapy is that even if you don’t fancy food, do try and eat as much as you can. Don’t just force down the foods that you think you should be having, because that won’t help you get your appetite back. If you fancy a piece of cake, then have it. I would also say to try and exercise (gently, following the guidance of your team) as much as you can. It really does help. It can be hard to switch off when you’re going through cancer treatment, so try and make some time for relaxation. I’ve had 11 cycles of chemo in 17 months, which is quite a lot. My first line treatment of six cycles did seem to have worked, but unfortunately I had a recurrence quite soon after my treatment ended. It’s quite unusual for that to happen, especially as I was stage 2b, so I don’t want to worry others. Each person’s cancer is different, so it can be a case of trying to find the right treatment for you. There’s lots of new treatments that have become available in the last few years and there’s always clinical trials ongoing. I’m now on the Rotterdam regime, which is a combination of cisplatin and etopocide. In just two cycles of that treatment, my CA125 has gone down significantly: it went down 50 per cent after the first cycle and then 60 per cent after the second cycle. My CA125 is now within the normal range (0 – 35). My message to others would be that if the first type of chemotherapy that you try isn’t successful, don’t lose hope, as there are other treatments out there. Overall I haven’t had too many side effects from chemotherapy. However I did experience fatigue. It’s not like any tiredness I’d felt before. You completely crash, and when that happens you just have to let yourself rest and sleep. My advice is to learn your pattern; journal your week(s) after chemotherapy so that you know for future cycles which days you can expect to feel better or worse. For example, I had weekly chemotherapy on a Thursday. Because of the steroids I was given, I would always be full of energy and buzzing on the Friday, but by Saturday lunchtime I would crash. So don’t try and force yourself to feel better or book things in for those days where you’re likely to feel worse. I didn’t experience any real sickness, just bouts of nausea. Ginger really helps with this, whether it’s ginger tea or ginger chocolate – anything that you enjoy with ginger in it. Eat or drink it slowly. Some people will also get a metallic taste in their mouth after chemo – someone recommended peach juice to me for this, which I found helpful. Some of the drugs they give you can cause constipation, so be prepared for that and speak to your team about whether you can take stool softeners. I do get numbness in my toes, so I’ve invested in a little foot spa with some essential oils, as well as a little soft spikey massage ball. I also take vitamin B, which seems to help. I haven’t lost my hair at all so far, as I used the cold cap for my first line chemotherapy, though it’s a bit thinner and I now keep it in a shorter style. However I’ve been told that the regime that I’m on now may cause me to lose my hair, because it’s in tablet form and you obviously can’t wear the cold cap all day long. My hair has gone curly since my chemotherapy, when it used to be dead straight. I’ve picked up a lot of tips from other people along the way. When you go for your chemo appointments you end up chatting with the other people there. I’m part of a Whatsapp group with a group of fellow patients I met at the hospital. We now meet up and do things together. It’s nice being in touch with people who’ve been through a similar experience and understand what you’re going through. I’m a member of an ovarian cancer forum so I make sure to provide lots of responses on there, especially around positive mental attitude, self-care, and having hope. When I first joined the forum during my treatment I had lots of questions for others, whereas now I try to help other people by sharing my experience. I take part in the Ovacome online exercise class, which I’m enjoying. I’ve also found the Look Good Feel Better sessions really helpful. What I’ve enjoyed the most about these sessions is that you’re there with other people who are going through something very similar to you. When I was first diagnosed, I didn’t realise that there were so many people who lived with ovarian cancer. Not everyone’s cancer will be curable, but for those of us who are living with the disease there are lots of new treatments that can help control it. I now know that there are people who live for many years on maintenance therapies. I find it helpful to think of my cancer as a chronic illness, and I’m able to have a good quality of life despite my diagnosis. I’ve found a positive attitude to be really helpful – but don’t feel that you have to be brave all the time. If you need to have a cry and a scream then just do it. Don’t be afraid to show your emotions and let others know when you’re having a bad day. Your family and friends might not know how to behave around you, so just tell them. Help them to understand how you would like to them to support you. Being diagnosed with ovarian cancer can feel like being hit by a train out of nowhere, especially because the symptoms are often so subtle. A lot of aspects can feel completely out of your control, so I’ve found it really helpful to focus on the things that I can control, like my diet, movement and my mindset. It’s not always easy to stay positive, but if you can take it one day at a time and focus on each step of the process, that can help you to not feel completely overwhelmed from the outset. At the end of each day, I always try and think of one positive thing that happened that day and focus on that before bed. I try to leave all the bad things that happened behind, and just take that one good thing with me into the next day. I have now taken early retirement, so that I can spend time doing more of the things I enjoy. I’m looking forward to spending my spring and summer not committed to sitting at my desk all day! If there’s one positive to come from this journey it’s that it does make you re-evaluate what your priorities are and what’s most important to you.