Go get it checked. That’s my message to anyone reading my story. If you’re worried that something isn’t right, don’t wait. This decision could save your life.
I’m still here today, and for as long as I am I'll continue to use my voice and share my story so that many more women survive ovarian cancer.
We've lost too many already. I believe that if it wasn’t for charities such as Target Ovarian Cancer then many of us who are here, wouldn’t be here today. These charities are doing so much to help people understand the symptoms, and encouraging governments and healthcare professionals to do more and improve how things are.
In Scotland I realised soon after my diagnosis that very little information was available in particular about the different types of ovarian cancer such as mine, a granulosa cell tumour of my left ovary. I was in limbo, not knowing who to talk to or where to turn to find out more. I looked to these charities for information and advice, which thankfully I got. Not having that information was scary.
The diagnosis I was never expecting
I've suffered with terrible period cramps for years. I'd often be at the doctors being prescribed co-codamol, but it was getting to a point where it wouldn’t even touch the pain. However, I thought it must be a side-effect of the perimenopause, which I was told I was going through.
It was when I had a terrible cough just before Christmas in 2019 that my manager at the time insisted I go to the doctors, which I did.
The GP was concerned and referred me to my local hospital for a chest X-ray. The results needed to be discussed as my lungs showed they were full of fluid. I was sent off for further scans of my abdomen and pelvis, then tests due to a swelling which had appeared in my neck.
Sitting in front of the consultant, just days before Christmas, I was told they thought I had cancer. They wouldn’t be able to confirm this though until I had surgery and a biopsy, which was daunting.
The worry washed out Christmas, and by the time the New Year arrived we were celebrating my dad’s retirement. I was really unwell by this point. I had constant heavy bleeding, and I couldn’t keep any food or water down and ended up in hospital with a kidney and urinary infection.
I could curl up in a ball and cry. Instead, I laugh, I exercise and I do everything I can to make sure someone else can be helped.
At my pre-op assessment in February, the fluid in my lungs had continued to build and it wasn’t possible to operate. However, seeing the agony I was in, my consultant reconsidered and scheduled it for a few days later. I was climbing the walls, the morphine didn’t help at all.
Although they managed to remove all the cancer, the surgeon was shocked at what she saw.
The tumour had twisted and contorted itself around my left ovary and she could tell that I had been living with this for some time. She was amazed at how I'd managed to cope. My type of tumour is a fairly slow growing type – and I feel very lucky that it was picked up, and I was able to have it removed at this stage.
Increasing knowledge of symptoms, the impact of treatment and recurrence
It was made clear to me that I'm at risk of having a recurrence of ovarian cancer. While that does cause me some worry, I try to remain positive by reminding myself of where I am now and what I can do to make a difference.
It worries me the amount of women that put things off. Two friends went with concerns after hearing my story. For one, she had a benign cyst removed, the other was diagnosed with bowel cancer.
When people ask me about the cancer I had, they’ve never heard of it and that scares me. It also makes me more determined not to give up on handing leaflets out and talking to people about the symptoms.
I encourage my friends to go and get checked out about anything that concerns them. A friend of mine, who is no longer with us, saw the GP as I told her about the abdominal pain and bloating I’d had, and she was diagnosed with bowel cancer. All we can do is fight, she said. And that’s what I’ll do.
I’ll fight for those who are no longer with us, and for those diagnosed in the future, to be armed with the knowledge of spotting the symptoms and knowing what to do and what to expect.
I had a full hysterectomy and pelvic clearance, but I wasn’t prepared for the impact of the surgery. The immediate surgical menopause and effect to my bladder.
The type of ovarian cancer I have also doesn’t respond very well to chemotherapy, so I wonder what will happen if it comes back. I had lots of questions and no idea where to turn.
That’s where the charities stepped in – Target Ovarian Cancer, Maggie’s and Ovacome. They've really helped me, all in very different ways, but it’s been a great support.
I signed the Open Letter to the UK Parliament from Target Ovarian Cancer calling for investment into awareness campaigns. More recently, following the charity’s Pathfinder Scotland report which showed only 6% of women in Scotland are very confident in naming the symptoms of ovarian cancer, the charity wrote to the Scottish government asking them to run a specific ovarian cancer awareness campaign. Let’s hope they hear our voices.
If we can get ovarian cancer on the radar of everyone, I think change can happen.
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
