My world shattered around me when I heard the words ‘four years to live’. I thought of my husband, my boys and my life. I fixated on the time scale, and still do. At times it has been so overwhelming, as if I was trapped in the darkest tunnel unable to get out.
Living with ovarian cancer is not easy to describe. Thoughts race through your mind in the early hours of the morning, tears catch you off-guard, and yet you have to continue to try to live for yourself, your family and friends. And make memories.
Two years for a diagnosis
Too many women are being diagnosed with ovarian cancer now and these diagnoses often come too late. It’s just not right. I was originally diagnosed in 2019 after experiencing problems since 2017.
My weight gain, persistent bloating, abdominal pain and gastric problems were put down to both IBS and a busy, stressful lifestyle. Then my weight loss, struggling to breathe and extreme tiredness were put down to recovering from pneumonia. In fact, all of these were symptoms linked to the ovarian cancer which was advancing.
During this time, I'd seen the GP several times and been given over the counter medicine and prescriptions. I found out later that they had at some point carried out a CA125 test as there were concerns that my symptoms were more than IBS, however the markers were below 35 and no further investigation was carried out.
I often think about the GP who did the CA125. I get angry trying to understand why I wasn’t followed up, despite my symptoms persisting. If they had done, maybe it could’ve been caught earlier. I really think I wouldn’t be where I am now.
The wake up call
Treatment was very emotional. Losing my hair, the fear that chemotherapy wouldn’t work. As I lost my hair though, my CA125 markers started to come down. It was working and I could have surgery – all the while the nurses and doctors held my hand and reassured me.
Following my recovery, as the world emerged out of the pandemic, I was told that there was no evidence of disease but I was not cured. This was a wake up call to live life, take nothing for granted, let grudges go and not to dwell on things.
Seven months on I got ready to fight again as my cancer returned in August 2021.
I knew what to expect and I took as much control of the situation as I could. I had the support of my family and my childhood friend, who’d also been treated for ovarian cancer, and knew how I was feeling. Unknown to me she had had a number of recurrences and was supporting me despite her suffering, it was unbearable to lose her to this same disease.
Managing the emotions that come with a second recurrence
Before my friend died she urged me to always ask about the status of the cancer and see the GP with any concerns. So when I started to feel tummy pain, I flagged it to the team. I have never felt as good as I have been, so I was shocked when a CT scan in November 2022 showed a small margin of growth in cancer.
Talking through treatment options was daunting, and I had an overwhelming feeling that I was being given up on.
I've felt completely scared and alone, but there are treatments and there is help out there. You go through so many feelings living with ovarian cancer and I've found that speaking to Val from Target Ovarian Cancer’s support line is invaluable.
I speak to Val a lot, and she’s been brilliant and has given me much-needed confidence at times. Now, I always connect with the Tea and Chat sessions too as these makes you feel less alone. It’s good for our souls to have a laugh when everything’s gloom and dark and forget about it for that one hour, and to feel normal. It's a good community, though not one that any of us wanted to be in.
Continuing to life live
My family have been a rock for me and fought with me. Together with my boys we ran Target Ovarian Cancer’s Run for Mum event. Originally, it was just them but I decided to take on the challenge when my friend passed away. I really struggled and didn’t think I’d make it across the line – but I did.
As with crossing that finish line, I'm determined that improvements in the diagnosis of ovarian cancer are made and I'll do anything to try and make that happen. Women shouldn’t have to go through this. Women should never be diagnosed at stage 4 and there needs to be better access to treatment for everyone. Something needs to change.
I have fought ovarian cancer, and here I am again on the second recurrence hoping to fight again.
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: [email protected]. We're open from 9am until 5pm, Monday to Friday.
If reading this story has helped you, join the Ovarian Cancer Community to connect with more people affected by ovarian cancer: www.targetovariancancer.org.uk/onlinecommunity
