I was so angry when I was diagnosed with ovarian cancer in 2016. It was an anger that I had never felt before, taking over my entire body. I was born with a heart defect – Tetralogy of Fallot – and I have never let it hold me back despite the challenges it brings. And despite the resilience I have built, my ovarian cancer diagnosis was a huge blow – not only because of the severity of the disease but because it made me realise, I wanted something that I never thought I did. Children.
Shock
To say what I’ve experienced has been a rollercoaster of emotions doesn’t do it justice. After my diagnosis, I was suddenly thrown into a world of unfamiliarity and uncertainty and was also dealing with feelings I’d never had.
I was yearning to be a mum and have a baby. I had decided I never wanted kids, believing a pregnancy would put too much strain on my heart, but there I was with a large tumour growing inside me the same size as a box of tissues. Maybe it could’ve been possible?
I’ve never been someone to go the doctors, so when I did go it meant something was seriously making me feel unwell. After a couple of visits where I was given treatment for IBS and the menopause, it was after an appointment with my cardiologist when things happened.
They noticed I didn’t look well and suggested I went back to the GP. By the next day, a GP was examining me and thought I had a blocked bowel. My partner drove me to A&E where they scanned me and kept me in overnight.
They scanned me once again to check that I wasn’t pregnant. I was 42 at the time and didn’t consider this could even be an option, but as I sat there waiting I started to think about how great having a child of my own could be.
The scan didn’t reveal a baby though, it showed a mass. I was told then that they thought it was cancer and I went into complete shock. I can’t remember the days that followed but I know that all my family were called to my bedside. I couldn’t cope.
Risks and complications
The bloating I had experienced, which saw me go up two dress sizes, and my loss of appetite (which was unheard of as my mum is the most amazing cook) had all been symptoms of stage 3b low grade serous ovarian cancer.
I needed to have treatment as soon as possible, this included draining the ascites which made me look nine months pregnant, but there were complications.
They couldn’t drain the fluid quickly, as I was at risk of a heart attack, and the surgery I needed was extremely high risk due to my existing heart defect. My options were to take a chance and die or take a chance and live.
I was transferred to Swansea where a specialist team would look after me. Within weeks I started on chemotherapy and six months later I underwent surgery in February 2017.
Having a hysterectomy meant that I had surgically onset menopause. I feel lucky that I have an amazing network of women around me. My mum, mother-in-law and my aunties who are so open about everything. So whilst it has been hard, I have always had them to speak to and it’s been a huge support.
However, six months after surgery I went into heart failure. We’re not sure what caused it, whether it was the chemotherapy or the surgery. Again, I felt that anger surge back through me.
Always at the back of my mind
Looking back at my experience, I think there needs to be more support for GPs and healthcare professionals. They are rushed off their feet, and require a bigger workforce, and improved access to training so that women aren’t repeatedly going back and forth to the GP.
I feel sad for them because I know they don’t want to miss a diagnosis of ovarian cancer, so more help is needed.
Women know their own bodies so it’s important we persist if we’re not feeling right. I knew I was ill but I didn’t know what it was, and never suspected cancer although my nan died at 59 years old from ovarian cancer.
I didn’t know that my bloating was a symptom and I thought that I’d have been able to feel that tumour, but I didn’t. For anyone feeling concerned, like I did, please keep seeing your GP and say that you’re concerned about cancer.
I'm pleased to say though that in March 2022 my medical team discharged me. It sounded amazing, but also scary. I’m aware of the statistics and chances of a recurrence, and the thing is that although I no longer need to attend anymore appointments, I can never let the thoughts go.
It’s always at the back of my mind.
I look at my nieces and nephews and think ‘Will I be here to see your 18th?’.
There will always be moments when it just catches you. This is why I think it’s important to be aware of charities like Target Ovarian Cancer as it offers support and advice. Even before my diagnosis I was aware of the charity to see whether I needed to check my risk due to my nan’s diagnosis.
Now, I find the charity’s community and support really helpful and would recommend anyone concerned about ovarian cancer to take a look at its website.
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
