I started to notice a bit of a bulge in my tummy but just put it down to the menopause and tried to tone up. My partner also noticed I was going to the toilet more often, but I do a lot of exercise and drink lots of water anyway so again, I was able to explain it away.
An A&E diagnosis
By January 2023 I was experiencing chronic pain when going to the toilet and had noticed blood in my urine. I booked a GP appointment and was prescribed antibiotics for a bladder infection.
Two days later I was in A&E due to the pain and had an X-ray, CT scan and ultrasound. I was told that it was potentially a cyst and was kept in for further tests. By the end of the week, I was sent for an MRI scan to confirm a possible abscess.
A surgeon came to see me about a slot that afternoon to remove the abscess once the MRI results had come back. It was that same surgeon that came back later in the day to tell me that the MRI had in fact shown that I had cancer. Stage 3 high grade serous ovarian cancer (HGSOC) with a tumour measuring 21cm in length.
Surgery and a stoma
The chances of needing a stoma fitted was explained to me in the build up to my surgery – which was scheduled for early March. That was a real shock, probably more so than the initial cancer diagnosis. I remember during my first appointment with a stoma nurse just standing up mid conversation and leaving the room.
I wasn’t ready to hear what she had to say or what it [a stoma] would mean. It was the hardest part to get my head around. It just had the potential to impact so many aspects of your life. Day to day tasks, relationships, socialising, all of it.
I had my full hysterectomy on 3 March 2023. The tumour was also attached to my bladder and my bowel, but they managed to remove the entire thing.
After the surgery they explained that the tumour was solid, no fragmentation, which was good news so they were delighted with the outcome. In removing the entirety of the tumour though, I did wake up with a stoma. And still have nerve damage in my bladder to this day.
After the surgery I spent two weeks in hospital but felt like I recovered quickly. I believe a lot of this is due to my fitness regime that I had before my diagnosis – I love body combat and Ashtanga yoga.
A month later and it was onto chemotherapy, with six sessions in total. Nothing can really prepare you for what it does to your body. I experienced hair loss, debilitating joint pain and many of the other common side effects. When I stand in front of the mirror, I no longer recognise myself, the horrific scar, the stoma, my post chemo hairdo etc.
Making the most of it
I’m quite a matter-of-fact person, and mentally I’ve been ok with just getting on with what needed to be done whilst surrounded by an amazing support network of friends and family.
But whilst I have had the year from hell, it sounds strange, it’s also been a really good year. I now have the most fabulous collection of six wigs, all with names based on their cut and colour...Cher, Beyoncé, Cheryl etc. I’ve made the most of my time off work, having worked fulltime since I was 16, and I’ve had some really fantastic nights out.
I’m now trying my hand at growing veggies in my greenhouse, reading more, and even doing some yoga when my body allows it. I can still do a headstand to cancer!
Finding the My Next Steps course
During my treatment I joined various Facebook pages and researched different charities to find more information and just get a better understanding of what was happening.
The Facebook groups were also a really good place to ask the more practical questions, like how cold caps work for chemotherapy. It was on the Target Ovarian Cancer community page that I saw an advert about the My Next Steps course.
It just sounded like the perfect thing for me. After chemotherapy, your appointments become less regular, and it can feel like you’re back out there on your own. To have the opportunity to connect with other women that have been through the same thing was an exciting prospect.
Ovarian cancer affects so much of your body, it’s different to other cancers, and I didn’t know anyone else that had been through it. Until I joined the My Next Steps group.
It was this course that truly gave me all the support and information that I'd been looking for. The content of the course was exactly what I needed after finishing treatment, especially the expert advice about sex, intimacy and getting back to exercise. All the topics were empowering, giving us the chance to take back control of what happens next.
New friendships have been formed as we all just get it. We understand, we share ideas, and we support each other. Our group has stayed in touch, keeping our weekly zoom call in the diary, and we are all meeting up in York in February 2024.
Looking forward to what comes next
I don’t know what the future holds for me, but I know right now in this moment I’m loving my life.
I’m currently on Niraparib, a PARP inhibitor, and tolerating it very well. I’m busy with work and social events and have started building my fitness back up, and I’m constantly astounded by the support and love from all my friends and family. My diary is full, holidays are booked, and the word ‘no’ is no longer in my vocabulary.
I’m hoping to retire this Spring and spend some time volunteering to help raise awareness. Not just about ovarian cancer in general but also life with a stoma and all that that can mean for someone – including accessible toilets which is current passion project of mine.
I want to help people navigate their individual journeys, hopefully as much as the My Next Steps course has helped me.
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
