We had an amazing Summer in 2022. It was my husband Neil’s 60th birthday. We had a family party in the garden and an incredible holiday travelling around Sicily when, unbeknown to Neil, I had arranged for our twin daughters, Jess and Laura, to meet us on our last stop. It was a special September.
October is always a very busy month for me work wise. Long days with ‘silly-o-clock’ in the morning starts. The whole team often come down with some kind of bug due to being run-down and exhausted, but we’ve been doing it for over 15 years so are used to hard-graft.
Around the middle of the month I started to feel bloated and hadn’t shifted the holiday weight I'd gained the month previous. I was shattered, had constant back ache and developed a really, really nasty cough.
At first I thought my symptoms were Covid, and then I put it down to my hectic work schedule. When I couldn't do my zipper on my trousers and my tummy was getting larger I thought I'd visit the GP, thinking I'd developed a food intolerance.
Meeting my GP
It was the first time I’d met my new GP. He felt my tummy and then suggested I get blood tests “just to be sure” – though he didn’t think it was anything “nasty”.
He prescribed me with Omeprazole and an appointment for bloods. We live in a semi-rural area and our surgery doesn’t offer blood tests so I needed to make an appointment at our local hospital in Bury St Edmunds. It’s often hard to get a time slot so I waited a week or so.
I remember having blood tests on the Wednesday and then a text from my GP on Thursday saying I'd been referred for an ultrasound scan. The hospital called that afternoon with an appointment for Friday. Wow! It was all super speedy.
I'd previously had an ovarian “chocolate cyst” and was having extremely heavy and frequent periods which made me anaemic but at my age, I put it all down to the menopause.
I have the NHS app so I had a look at the test results. The normal stuff: full blood count, TSH level, iron… and then I spotted one for CA125 Cancer Antigen. I’d never heard of that before so googled it and that’s when I had a sinking feeling that something wasn’t quite right.
My diagnosis
At the ultrasound scan, the radiographer mentioned that I had a build-up of fluid (by which time I was looking 6 months pregnant). My ovaries though looked “fine” but to make sure, I was booked in for a CT scan. The mention of ‘fine ovaries’ was reassuring but then when my NHS app flagged that I was being fast-tracked for suspected gynaecological cancer, I started to really worry.
A week or so passed before the CT scan. After which it was the horrible long wait for the results so I called the hospital. It was a Monday morning, 14 November 2022. Nurse June (a lovely lady) asked if I was on my own. I was – Neil was at work. She said she’d call back when he was home. I knew something was wrong so told her to tell me. The scan showed suspected ovarian cancer.
I called Neil, he came home immediately in tears. I called my mum who came up, in tears. My first thought was for my girls. How would I tell them? They knew I hadn’t been well so had planned to come up from London on Thursday evening for the weekend. We’d tell them then.
Neil picked them up from the train station and then, in the privacy of the car, he broke the news. They were devastated. Lots of tears when they got home but I said, “All will be fine – we’ll get through this.”
On the Friday, I was admitted to hospital to have the ascites drained. We had a family bet as to how much there would be. I said one and a half litres, Neil said two, Jess two and Laura four. “No Way” I said – and we all laughed. Life had to go on. It couldn’t be all about cancer.
Over six litres were drained from my abdomen and lungs. I met the consultant who confirmed that I would need to be transferred to Addenbrooke’s Hospital for treatment. I had been diagnosed with stage 4b high grade serous ovarian cancer.
I consented to genetic testing and it was later confirmed that I don’t have the BRCA mutation which is the best news ever being a mum to two gorgeous girls.
Searching for information
Like most ladies I’m sure – I googled and googled and googled for information. I’d never really heard of ovarian cancer before. Cervical cancer, yes. And breast cancer – but not ovarian.
The internet searches came back with stats and stories that painted a very bleak picture but it also came back with a link for the Target Ovarian Cancer charity.
Their online guides have been a huge source of information and support, providing the facts in ways we can understand, rather than being bamboozled with medical jargon and ‘doctors speak’.
Taking on treatment
My appointment with Addenbrooke’s came through fast. I met the consultant late on a Tuesday evening and was in for my first session of chemo on Saturday 3 December. Just Carboplatin to start and then they would introduce Paclitaxel and Bevacizumab from the second treatment onwards.
Jess and Laura came up for the weekend. They just wanted to be here and to see me. “All will be fine” I said, “we’ll get through this”.
When I got home, they'd put up the Christmas tree and decorated the house. My second session was Christmas Eve, so Christmas that year was a bit of a wash-out. We’ll make up for it this year.
I'm so, so grateful for how fast my GP and the NHS acted. From my initial blood test to my first session of chemo it was just six weeks. I had three sessions of chemo and then full debulking surgery. The surgeon said that the disease had been removed, bar a tiny little bit on my bowel “but the chemo should see the end of the that.”
I wasn’t prepared at all for the surgery. I’d only be in hospital once – to have Jess and Laura – and I naively thought I’d been ‘in and out’ within a matter of days.
I think I even stupidly asked if it would be key-hole surgery. I found the hospital experience really, really tough and totally underestimated how big the operation would be and how I’d feel afterwards. It was probably the worst time of my life. But I got through it and was home within a week.
I had a few problems after the surgery as my wound opened and got infected so I had to have visits to the hospital every other day to have it padded out and dressed. This went on for around three weeks, during which time I was unable to restart chemotherapy.
Once healed, the chemo started again, three sessions and then a final scan. We’d thought I’d be clear as there was just “a tiny bit left on my bowel” after surgery, however, the surgeon hadn’t spotted a 4cm area of disease on my liver.
We knew that the disease could come back at any time but we hadn’t prepared ourselves for it still being there after six rounds of chemo and surgery. “Incurable but treatable” I think were the words used.
The consultant said the plan would be to continue with the Bevacizumab for the total of 18 treatments to starve the cancer and stop it from growing and spreading. Unfortunately, after six sessions, my CA125 levels started to rise and a scan showed that the disease had progressed.
It was only at this point that we asked the question we'd been thinking about over the last year but too scared to mention. How long do I have? The consultant advised one, maybe two years. This was on 11 November – almost exactly a year to the day since my call from Nurse June.
I’ve now signed up for a clinical trial as my consultant advised that this is the best option for me at this moment in time.
It'll be intense. Five consecutive days of IV infusions, followed by 14 days off but with bloods in between. Repeat until either my body or my mind can’t take anymore. It’s going to be a struggle and a mental challenge but I need to do it for the sake of Neil, Jess and Laura.
Everyone's journey is different
I can’t decide whether it’s been the longest year of my life or the fastest. It's been a bit of a blur, to be honest. Everyone copes with cancer in their own way. Everyone’s journey is different. Me?
I feel like I’m living my life through a lens, watching myself from the side lines waiting for a momentous wobble and fall. It hasn’t happened yet, though I’d be lying if I said there’s not been low moments.
Everyone that knows me comments on how well I look. I don’t feel like someone with incurable cancer, I just feel like ‘me’...though a bit different to how I used to be.
Cancer has changed how I look, how I feel and how I think each day. It’s taken over my life like an uninvited squatter who we can’t evict but it’s not going to define who I am and I’m determined not to let it take over my life entirely.
I decided to keep working, but I had to make some adjustments. No more long days and 'silly-o'clock' starts. Hospital appointments and treatments have become a part of my routine, reshaping my life whether I liked it or not. Adapting to this 'new norm' has been my only choice.
But I’m not alone.
Connecting with other ladies in the Target Ovarian Cancer community who understand the struggle has been my lifeline. Reading stories from those who've conquered the disease, others trying new treatments, and just hearing about life with cancer – or just life in general, has provided immense comfort. Even though I've never met these wonderful ladies in person, there's a shared understanding and care.
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
