My shock diagnosis
I was first diagnosed in January 2016. After feeling a lump in my lower abdomen, I went to see my GP. I didn’t have any other symptoms. My GP took blood and sent it straight to the hospital. I knew from her face that it was serious.
I had a consultant appointment within days; we must have been added to the list as we were the last appointment of the day. It was there that we received the news – my CA125 level was very high and I had ovarian cancer. We were in a total state of shock and had to just leave the room and go home.
My knowledge at the time was that there was no cure for ovarian cancer. It felt very isolating to just go home and try to process the limited information we had.
Kickstarting treatment
I wanted to get on with treatment immediately and actually paid to have a CT scan to speed things up. It confirmed my diagnosis as stage 3. While talking through the results with my consultant I made the mistake of asking about my prognosis. He said it was two to four years. For me it didn’t help knowing, I just had to concentrate on my treatment.
It was then that he gave me a choice of whether I started chemotherapy before surgery or had the surgery first and followed up with chemotherapy. Honestly, I didn’t know what to say. I wanted to be guided by them in terms of what would be best for me. Thankfully he then said that he could fit me in for surgery the week after, so we went for that. It felt like the quicker we got started, the better it would be.
Sadly, it was delayed another week or so due to an emergency case. I was in the hospital waiting to go down to theatre as it was cancelled. At the time it was overwhelming, I was worried that the cancer was just racing through my body the longer I had to wait. My Cancer Nurse Specialist (CNS) took the time to assure me that that wasn’t the case. She's been a lifeline throughout the last 10 years - she’s an amazing woman.
People’s perception and chemotherapy
When people learned I had ovarian cancer their face changed. I was often met with silence and a look of sadness and pity. Like what would happen next was inevitable. In the end, I stopped telling people and just let them assume which cancer I was having treatment for.
Throughout treatment my overriding feeling was this is saving my life, and I gave in to the whole process. I didn’t complain about chemotherapy or how it felt to lose my hair. I just kept reminding myself, ‘you’re alright.’
The care, kindness and dedication of my team at the University Hospital in Dorset was amazing. It helped keep me grounded and positive. I couldn’t have asked for more from everyone there.
I was blessed that my body responded really well to chemotherapy and I was moved on to bevacizumab (Avastin®) for a year.
Recurrence, COVID and PARP inhibitors
In November 2019 my CA125 levels started to go up, and I was monitored by my CNS and oncologist. Then I felt a small lump in the same area as the first one. I saw the same gynae consultant again who confirmed that it was a recurrence.
I had another operation in the December and again the surgeon was brilliant. This one included the preparation for a possible stoma as the tumour was next to my bowel. Could I cope with this as well as everything else? It seemed to worry me more than anything else up to that point.
I was incredibly grateful that the surgery did not result in a stoma and I was able to start chemotherapy again in January 2020. As we all know, 2020 was the start of the pandemic and dramatically changed healthcare settings. Thankfully, because I had already started my chemotherapy course, I was able to continue it in a different hospital.
As my treatment came to an end, I spoke to the wonderful Val through Target Ovarian Cancer’s nurse support line. We talked about what was next, the drug options available and what they may suggest. It helped me feel prepared for the next stage. I have spoken to Val on several occasions, and it has been wonderful to be able to do that.
In May 2020 I started taking Niraparib and have been on it ever since. I don’t have any side effects apart from an occasional feeling of nausea first thing which goes away if I eat a biscuit, and the odd hot flush. Minimal in relation to what it has done for me.
I started on two tablets a day which I believe is the standard dose, but it affected my blood too much. My consultant suggested I move to one tablet, which did panic me in terms of efficacy but after being monitored it was fine – just as effective. My CNS confirmed that it was clearly the correct dose for me.
My miracle drug and supporting Target Ovarian Cancer
I still have my bloods taken every 12 weeks and I receive a phone call from my CNS with the results. The prescription for Niraparib is issued by my consultant.
My CNS recently described it as remarkable that I’ve remained so stable. I feel very blessed that this amazing drug was available and has given me years of my life. But Niraparib isn’t the end. Projects into new therapies give me hope for a future where everyone with ovarian cancer has the option for an equally effective treatment.
I was introduced to Target Ovarian Cancer by my CNS who had some information about its health and support services. As a charity it has done so much for me and I think it provides hope for women living with ovarian cancer. For my birthday this year I asked for donations instead of gifts and raised an incredible £800. I can’t thank my friends and family enough for being so generous.
Sharing my story helps me continue to raise awareness in my own small way. Whether that’s talking to female friends, being part of my local WI group, or even sharing my experiences at the hairdressers. When I was first diagnosed, I was met with a constant reminder from people about how awful ovarian cancer was assumed to be – myself included. Hopefully I can provide a sense of hope that there are lots of options out there now and you can still live a good life.
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.
