I had a rare tumour grow on my right ovary. It’s called a mixed germ cell tumour- the cells are very aggressive, but the prognosis is excellent. I had stage 1 (no sign of spread), Grade 3 (aggressive cells).
I wanted to share my story because I can’t change what’s happened to me, but maybe this might help someone else or at least make people more aware.
90% of women don’t know the four main symptoms of ovarian cancer and 6 in 10 ovarian cancers cases are diagnosed at a late stage which has a devastating effect on survival rates.
I didn’t know the symptoms before I was diagnosed myself, I didn’t know anyone who’d had ovarian cancer and my symptoms were SO subtle.
Looking back there are so many ‘what if’ moments and parallels that could have prevented me going to the doctors for that first check, for not having my surgery when I had it, for not being found at stage 1 cancer, and for having a much different outlook.
Lots of people ask me how did I knew/ when did it all start. I was fit and healthy; a mum to twin four year old boys and a nurse. I was training for the London marathon. I lived an active life.
I remember saying to my husband Stu one evening, ‘I’ve still got this lump in my tummy’.
Then I thought, my periods hadn’t been there usual clockwork self. I missed a period. I never miss a period. I had done two pregnancy tests between December and February. I thought I had better go and get this lump checked. The doctor didn’t seem too worried and referred me for a non-urgent ultra-sound scan in a few months’ time. She didn’t take my bloods.
My mum said ring back and ask for bloods and to request a CA125 test. Two days later these bloods were back and abnormal. This was when the spiral of craziness began.
The doctor phoned me to come into her office and asked me if I knew what this meant. Queue panic and intensely overactive goggle searches. I went back to the doctor and told her I had symptoms of ovarian cancer, but I had thought it was all down to my marathon training.
I’d been bloated more than normal, I was up in the night weeing (which isn’t usual for me), I had swelling in my right leg, I was tired, I had pain during sex, and my bowel habits had changed.
In the two weeks following I had an urgent ultra sound, MRI, CT, bloods and was seen by a consultant gynaecologists who told me she was referring me to oncology for them to review my case. There were delays in scans being reported and these weeks were horrific, thinking I had cancer- everything I read suggested I did.
My head was a mess.
At the end of March I had a call and panic over, all the scans suggested it was benign. I felt amazing- what a drama queen I was thinking anything serious could be wrong!
We had entered a pandemic and so I was told I would have to wait for covid to be over to have my surgery. I was happy with this, although the lump was getting bigger quickly, I was feeling uncomfortable, and it was getting worse. The gynaecologist said it felt like I was 18 weeks pregnant, and that was two weeks ago and I knew it was growing quickly.
My mum was worried so she drove me straight to the private hospital where she worked. I was able to book in for surgery. Again- covid meant my surgery was cancelled. But the doctor said to me that if I get into trouble or any pain that I can’t cope with I should go to A&E.
One week later and the lump was huge, no clothes fitted, I was up 3-4 times a night for a wee, I couldn’t poo properly and when I ate I had to lie down because it was so uncomfortable. I went to bed looking second trimester pregnant. I couldn’t get comfortable and I was up pacing the hallway.
The pain was getting so unbearable that I considered ringing an ambulance, but I managed a couple of hours sleep. I woke up, packed a bag and headed to A&E. I was scared but relieved that it would hopefully all be over soon. I wasn’t allowed any visitors, no one to cuddle or hold my hand and I was worried that I would catch covid. The next day I had surgery to remove the ‘cyst’ which was now 14x14cm along with my right ovary and Fallopian Tube. I was in theatre longer than expected as they struggled to get the tumour out. They told me they always send these things to be tested just to be safe. I wasn’t worried… it was just a protocol.
Five weeks of recovery passed. I went back to work and realised I hadn’t heard anything for my follow-up. So, the next afternoon I put the TV on for boys and ran upstairs for a quick chat with my surgeon. He said the histology has come back with signs of malignancy. It might be fine, you might need chemotherapy or you might need a hysterectomy.
I felt like I had been stabbed.
What? What next? When will I know more? How bad is it? Am I going to see my boys turn five? They need me. I don’t want to die. I’m scared. I’m terrified. Tell me I’m going to be ok. I need more answers. How do I tell my family? I’m suffocating. I feel so alone. I don’t want this to happen. Why me? On repeat.
I really can’t remember what happened next. I had to walk downstairs to my little boys and pretend I was okay. More stressful weeks of waiting to be told what it is, how bad is it and what the plan is. This for me was the worst times. The waiting and the not knowing. I’m a planner. My mind would run away and the panic would set in. Finally, after being referred to a specialist in London I had answers and a plan.
I was treated with four rounds of escalated EP chemotherapy. It was scary and it was tough but I got through it and writing this now I am six months post treatment. I feel back to myself, with a whole new perspective on life.
I am passionate about sharing my story to raise awareness. For anyone reading this who is maybe worried about symptoms- please go and get checked. Talk to people about it. If you’re told it’s nothing but your symptoms persist or you are worried, go back again. It might be nothing, but it might also be something. So get checked!
During my recovery, I wrote a children’s picture book, to help children who may be going through a similar situation. Butterfly boy, is a beautiful, emotive book, encouraging children to find hope. It is available now on Amazon.