Helen wearing glasses and holding a glass of wine

Helen’s story

Helen shares her difficult diagnosis, her recurrence and how it can help to speak to others who understand what you're going through.

Deciding on treatment for an ovarian cancer diagnosis can be a joint decision between you and your medical team. Helen talks about her experience of being diagnosed with stage IIIc peritoneal cancer, adapting her treatment plan and the importance of finding balance...


Cancer can very easily take the control away from you. But that doesn’t mean that you can’t adapt plans and find balance to live the way you want. Everyone is different, I’ve met women who don’t want to know anything about their cancer and find comfort in putting it solely in the hands of their doctors, and I have also met those who want to do hours and hours of research before making decisions.

If it works for you, you can work with your team to get the life you want. It’s an individual journey, and it’s up to you how you go about it. There’s no right or wrong way. 

Relief  

Prior to my diagnosis I spent two years going back and forth to the GP with various symptoms that were confused with menopause. I had constant abdominal bloating, hip pain, fatigue and a swollen abdomen. I knew quickly that something was wrong; it just didn’t feel like the menopause was the cause of all my symptoms. Unfortunately, trying to convince the GP that there was something more going on was a real struggle. I never seemed to see the same doctor twice and even when I was given a CA125 blood test I was told not to worry because, although the level was raised, it wasn’t in the thousands. I now know that was wrong – anything over 35 should prompt further tests.  

Over time the symptoms got worse to the point where even moving around caused incredible pain and I couldn’t sleep or sit without discomfort. Two days before my diagnosis I ended up in A&E. I had been in bed for a few days and had to get my husband to call an ambulance. I have never had pain like that. Fortunately, the nurses at the hospital did a marvellous job of easing my pain and worked quickly. A few days later I was diagnosed with stage IIIc high grade serous peritoneal cancer. At the time my main emotion was relief. I finally knew what was wrong with me and I was pleased to be out of pain. 

I had around seven litres of ascites fluid drained from my tummy, which was another massive relief, followed by three rounds of chemo, surgery and another three rounds of chemo.  

Recurrence 

I’d been told I showed ‘no evidence of disease’ (NED) in March, but by September of that year the familiar abdominal pain was back. Like most women, I knew that I was the expert on my body, so I insisted on a CT scan which showed the cancer had returned. I was put on a new treatment and told that I’d need to undergo more chemo – something I knew I didn’t want to do. I was very lucky that my doctor was so fantastic, and it was such a breath of fresh air to have a doctor be so approachable. Together we agreed on a plan to monitor things daily to see if I'd need more treatment. 

Unfortunately, I did eventually end up needing to be admitted to hospital. That experience was particularly difficult as Covid-19 restrictions meant I was there alone and didn’t have anyone to squeeze my hand. The staff were great though and would often stop by and chat which helped with the isolation. As soon as I got home from the hospital, I began six new rounds of chemotherapy and thanks to the hospital working with me and being accommodating I was even able to go on holiday. This made a big difference to my quality of life.   

Control 

Having cancer can make you feel out of control – it takes control away from you. So much of that is about not knowing and the stress of it all. I really wanted to share my story because I wanted other women to know that having a good team around you and working with you can make such a huge difference and help you keep leading the life you want. We all have similar treatments, but I want people to know it is possible to adapt plans to find balance and be happy with your treatment plan. It’s so important. 

A friend recommended Target Ovarian Cancer, and I joined the Facebook groups and the Tea and Chat events. I even went and met some of the women in person. It’s such a good feeling when someone else knows what you’re going through, it feels like a real force for good. Everybody I speak to online or at these events knows what it’s like to have that chemo or surgery, or how it feels to be worried about ovarian cancer. 


If you’ve been affected by this story and would like to speak to a specialist nurse, you can call our dedicated support line on 020 7923 5475 or contact us: support@targetovariancancer.org.uk. We're open from 9am until 5.30pm, Monday to Friday.