I was experiencing symptoms in the lead up to my diagnosis, but they seemed vague and were often things I could excuse as something else. It started with just feeling a bit off and a constant level of fatigue, but I was working hard and knew I wanted to retire so just put it down to being ready. I also had quite extreme change in bowel movements that should have alerted me that something was wrong, but it wasn’t until my bloating become increasingly uncomfortable that I booked a GP appointment.
Getting a diagnosis
I thought it could be my IBS flaring up again, so the doctor gave me some medication to help with the constipation and said to come back if there was no change. Looking back, I can almost see it in photos – I can see that I wasn’t myself.
During my second appointment with the GP I said something like, “well I hope my ovaries are okay”. Honestly, I don’t know what made me say it, but I feel like it’s what prompted them to do a CA125 blood test. It came back at over 600.
From there everything moved quickly, and I was put on a two-week pathway. While waiting for my first ultrasound I had to visit A&E for the pain. The consultant I spoke with said that it was highly likely that I had ovarian cancer.
I didn’t know much about it, but what I did know wasn’t good. ‘Silent killer’ was my association with it, which I now know not to be true. The symptoms are there we just have to know and recognise them.
I had my CT scan and then had to wait for the MDT meeting the following week. That was possibly the worst wait as I was incredibly apprehensive about whether it was treatable or not.
It was confirmed that I had stage 3A ovarian cancer, and it was treatable. They referred me to The Royal Marsden, and I met my surgeon a week later. My experience of first line treatment was brilliant in that everything was so quick and cohesive.
Surgery and chemotherapy
In April I had a full hysterectomy that was deemed successful. This was followed by six rounds of chemotherapy. I was very worried about chemotherapy, how I would feel and the effect it would have on my body.
I tried acupuncture during each round and found that it really helped. It became a safe space for me to vent and/or cry and really process what was happening, which can be difficult to do in front of friends and family as they are on their own journey of acceptance.
The acupuncture has now become part of my self-care routine, and I still see him from time to time. It helps reduce stress and any symptoms that affect my digestive system.
My chemotherapy came to an end in October 2023. By the time I'd recovered from all the treatment I didn’t want to return to work - I’d been told there was no evidence of disease left, but there were still too many uncertainties.
I officially retired and I’m grateful every day for that decision. I felt we could finally start to make long term plans again which started with a great Christmas!
Retirement and recurrence
I thought I’d better just please myself once I felt a new normal had resumed. I had a great year with lots of lovely trips, and a very special holiday to southern Spain.
Although there was definitely an element of denial in my emotional response at that time, and some terrible lows too - often brought on by scrolling the internet, which can be very scary and demoralising. I do not recommend! Please stick to trusted websites for any research – charities, NHS etc.
After a while you realise it's not always about grand gestures, and big plans, it's the little things, putting yourself first in a situation or starting something new. Often my illness and treatment made me feel stuck, so that feeling of making progress with a new hobby is one I now cherish. The feeling of momentum again.
Sadly, my check up in August 2024 showed that my CA125 levels were increasing again. They had jumped from 70 to 250. I was alarmed and immediately wanted to know what happened next.
My consultant explained that my CT scan was borderline and that we may not need to jump straight back into treatment. There is a school of thought that it’s better to have more time feeling well before starting chemotherapy again but that just didn’t feel like me. I wanted to stay positive and proactive.
My world unfortunately folded again when I was troubled by increasing pelvic pain. It was unbelievably acute, and I was admitted to hospital via A&E while my scans were reviewed. We started by ruling out other things, but I knew it was back. I guess you build an instinct for these things. A second opinion on my scans confirmed that the cancer had come back.
A new consultant (not my usual one) started the conversation about how this time it would be about controlling the disease. I had done a lot of research by this point so it wasn’t as much of a shock. Still, I didn’t see anything good that could come from being defeatist – it was better to think that I would have long gaps between successful treatments.
Treatable not curable
In October, I spoke with my usual consultant who confirmed it was a recurrence and again that this time it was about controlling the disease, as it couldn’t now be eradicated. I chose to ignore that curveball of information and got down to the next lot of chemotherapy, determined to be well again.
This time the six sessions were in winter rather than summer which I much preferred as I didn’t feel I was missing out so much. I also felt more prepared this time around.
The shock value had subsided, and I was ready for the cyclical nature of it all. Knowing the days I’d feel awful and the ones when I’d feel better. As well as helping with the pain, there was also something positive about the experience. It felt like getting back on top of the cancer and being around the wonderful cancer nurse specialists (CNS) again was reassuring.
That’s not to say there wasn’t still some terrible lows. A virus led to a long delay in between two of the sessions which allowed my CA125 level to go up slightly instead of staying static.
However, this time around I chose to have regular counselling as well as my ongoing acupuncture treatment as the emotional impact was huge. That definitely helped manage it all.
My final session was in April this year... and I’m still here!
A second recurrence
Although some symptoms have been creeping back again unfortunately, I've decided to take a proactive attitude to life and have taken up playing the guitar and song writing again after many years.
I've also set up a craft room where I enjoy machine embroidery and card making. These activities led by self-expression seem to help block out the negativity and fear, making me feel more present and content.
I took Niraparib for a couple of months but sadly it didn’t really have much of an effect and my CA125 level is growing continually. By July 2025 there had been considerable progression, and my pain was also increasing. I made a decision to stop taking it as for me there were no real benefits, and I felt better day to day without it.
I was reassured on meeting my consultant this month that the next conventional treatment is available for me. However, things seem to be lining up for me to be able to access a new ‘Antibody-drug conjugate’ trial.
It feels good to potentially be a part of research into the next raft of treatment options. It will also hopefully give me a break from the systemic treatments I’ve experienced so far.
I’ve also been lucky to have access to a dedicated cancer psychologist. To have someone that fully understands and is familiar with all the elements of living with a cancer diagnosis is amazing. They’ve heard it before and know how to help. My first meeting went really well and I’m already grateful for the service.
Finding the joy
I didn’t really discover Target Ovarian Cancer until this year, when dealing with recurrence. Speaking to Val, through the nurse helpline, has been such a support for me. She has a real skill of listening and just allowing me to be – not trying to fix anything but there to support with compassionate and practical advice. I honestly feel better knowing that they're there when needed.
My partner Graeme is endlessly supportive, and best of all I just feel normal when I’m with him, forgetting about health challenges and just getting on with what we enjoy together.
My lovely son visits frequently, which is great as he’s relocated to Germany. My friends are always there too, always hitting the right balance, for which I’m so grateful. I’ve definitely been blessed in that department.
It may also be true to say there is a resilience within that I couldn’t have imagined before, enabling me to roll with the ups and downs. I hope I can continue to do so, as so many things do bring me joy.
I suppose that’s one reason to share my story, to say that you can live with this horrible disease, and to hold onto hope in the darkest hours. Hopefully it might be relatable to others and be a comfort or a support to perhaps not get overwhelmed by some of the more negative things – scrolling the internet for example.
I want people to know how and where to reach out for help earlier, but I also want to provide a level of hope. I have a great quality of life still and feel incredibly lucky to be living my dream retirement.
For me, raising awareness of those niggling symptoms is equally important. They need to be broadcast far and wide and I want to do anything I can to help with that.
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 0808 802 6000 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.
