Issy shared her story with us before taking part in our Walk in Her Name Step Challenge, together Team Lydia raised over £6,000 for Ovarian Cancer Action. Thank you Team Lydia.
Issy and her younger sister lost their mum Lydia two years ago to ovarian cancer. Now Issy and #TeamLydia are taking part in our Walk In Her Name Step Challenge in order to raise money for a screening tool. This is Issy's story.
It was Friday 18th January 2019, and I was at a friend’s house, celebrating her birthday with drinks and a takeaway with the girls. I’d promised my husband who was at home with our one-and-a-half-year-old daughter, that I’d only be a phone call away if they needed me. So, as mums tend to do when away from their very young children - I kept my mobile close at hand all evening.
At about 9pm, my phone rang. The caller display showed my younger sister’s face; surprised to be hearing from her late in the evening, I picked up:
“Hiya, you’re calling late; is everything okay?”
“It’s Mum. She’s in the hospital.”
Mum had been complaining of bloating, breathlessness, abdominal pain and a massively decreased appetite for several months. For someone with a family history of gynaecological cancers and a personal history of spinal and breast cancer, Mum was concerned enough about it to make several appointments to see the doctor.
For some reason, and I’m still not 100% sure why (perhaps because she was - at the time - under a locum doctor instead of her usual GP, who knew her medical history), she wasn’t taken seriously. At the second or third appointment, she asked for an ultrasound scan referral and was sent away with a course of antibiotics and the words: “it’s probably just a UTI, or perhaps they’re menopausal symptoms; it might even be that you’ve just gained weight”. Trusting the doctor’s judgement, Mum didn’t make any further appointments and carried on with her day-to-day life.
January arrived, and Mum’s normal GP was back at the practice and, still not feeling ‘quite right’, she decided to get a second opinion and made an appointment to see him. Noting her symptoms, he was horrified that she’d been overlooked. That Thursday Mum was sent for an emergency ultrasound, and was told that she should have her results back by Monday morning, at which point, the doctor would see her again and review. As it turned out, she didn’t need that review because, on the Friday night she was admitted to hospital.
Prompted by her presentation, the decision was made not to wait for the results of the scan and she was x-rayed as an A&E admission. The doctors discovered a huge ‘mass’, stretching from her pelvis to her breast bone. The mass was sent for biopsy and pretty soon we were being told that it was a malignant carcinoma tumour, and that she had stage four ovarian cancer. She was terminally ill. Our Mum was dying.
For my mum, getting this news was horrible, but also baffling. As far as she was concerned, after having had a dangerous birthing experience with my younger sister, she’d had a total hysterectomy with bilateral salpingo-oophorectomy. She’d been told that it would be dangerous for her to have any more children and with this in mind, and also considering her family history of gynae cancer, she agreed to the removal of her womb, cervix, fallopian tubes and ovaries. However, it seems that whilst under general anaesthetic, the decision was made to retain her ovaries without telling her.
For my sister and I being told (at 24 and 28 years old respectively) essentially completely out of the blue, that Mum was dying, was completely surreal.
"I can still picture the three of us, sitting in a tiny room just off the surgical ward, left shell-shocked by the news the oncologist had just given us"Issy
It felt numb, and fuzzy, and as if someone had just pressed ‘pause’ on a moment in our lives: that the whole world had stopped. The entire time the doctor was talking, I found myself glued to the token hospital wall art hung in the room: a picture of a butterfly, nodding away at what she was saying, hearing her but not wanting to listen.
We were told that Mum had about a year to live. Then she developed a massive blood clot and the tumour-removal surgery that would have made her more comfortable - and given us this time together - was no longer an option. “Six months” they said.
In reality, those six months were two, and she died in the March. She is the reason my sister and I, along with a team of family, friends and supporters, are taking part in Ovarian Cancer Action’s Walk in Her Name Step Challenge.
There is currently no national screening program for ovarian cancer, and - contrary to popular belief - it cannot be detected by a smear test. The Step Challenge raises money that enables ground-breaking medical research that provides a better understanding of how ovarian cancer starts, and is funding the development of the world’s very first ovarian cancer screening tool. Had my mum been offered screening, she perhaps wouldn’t have been diagnosed so late on, and she might still be here, or at the very least we’d have all had more time together.
So, this March, two years after my brilliant mum passed away, #TeamLydia are going to be walking, dancing, wheel-chair exercising, running and pegging out the washing! As we each clock up 295,000 steps, we are 295,000 steps closer to an ovarian cancer screening program, because screening saves lives, and because that is something worth ‘stepping up’ for.
You can support Issy and #TeamLydia here.