“The plane had just landed when I felt the rush of blood. I stood up from my seat, and a heavy and immediate bleed soaked my trousers. They were covered in it, right down to the knees, and I was shrouded with embarrassment. Young and humiliated — I was only 22 at the time — I stood in the passport queue for 40 minutes with my coat tied around my waist, contemplating what had happened.
When I was finally able to retreat to a toilet, where I threw my trousers in the bin, I cried. I hadn’t been sexually active for several months but the bleed was so heavy the only explanation I could come up with was that I had been unknowingly pregnant with my ex-boyfriend’s child, and had suffered a miscarriage. In that moment, I was devastated. I was still heartbroken over the relationship, and it felt gut-wrenching to stand there, alone and covered in your own blood, wondering if you’d just lost a baby you never even knew you had.
“I was having to set alarms during the night to change my sanitary wear.”
At no point did the incident make me think about cancer, although it wasn’t the first time I’d had issues with bleeding. Months before, I’d gone to the GP after noticing I’d been bleeding during sex. I was examined and found to have an eroded cervix, which can happen to women with high levels of oestrogen over a prolonged length of time. They assumed this was to do with being on the pill, but on reflection it must have been linked to the fibroid the doctors believed they had discovered in my uterus a year earlier. A fibroid is a very common, benign, and usually harmless lump of tissue, and although it was slightly surprising because usually women over 30 get them, I wasn’t concerned about it. I’m generally not much of a worrier, and tend to underplay health issues.
My periods had grown slightly heavier in the lead up to the incident on the plane, but it wasn’t until that happened that I felt compelled to go back to the doctor. They confirmed I hadn’t miscarried, but refused to re-scan me to check everything was okay with my fibroid. Because I was young, I got the feeling they thought there wasn’t much reason to worry too extensively about my gynecological health, and instead they put my heavy bleed down to stress. I told them I hadn’t been stressed. Now I was stressed, because I wanted answers and I wasn’t getting them.
Lydia; courtesy of Lydia Brain
The weeks rolled on, and my periods became unmanageably heavy. I was having to set alarms during the night to change my sanitary wear, I was unable to exercise during my week-long period, and it was beginning to rule my life. In January 2016 I started to feel dizzy, light headed and tired. My words started to jumble, and I was unable to keep my eyes open by 2pm. I went to my GP and found I was severely anaemic. My doctor finally ordered scans, and by this point they confirmed I now had two fibroids, which needed removing.
I was finally getting taken seriously, and surgery was ordered. It took 8 months for the procedure to get booked in, but when it eventually came around, I didn’t for one moment expect they’d find what they did.
“How could I, me, have cancer?”
After removing what they’d previously assumed was a fibroid, doctors realised what I actually had was an extremely rare uterine tumour. Actually, I had two. And although they’d managed to remove one, the other was embedded deep in the wall of my womb, and wasn’t removable by surgery. I would need a complete hysterectomy, which would leave me infertile at the age of 24.
I couldn’t believe I had cancer. Apart from bleeding, I generally was fit and healthy. I ate well and exercised 5 or 6 times a week. I had abs and could hold my body weight like it was nothing. How could I, me, have cancer?
When I found out, my mind went into a weird place. It was like I was there, hearing what they were saying, but at the same time I wasn’t present. I was numb and distant. But the reality of it hit me like a ton of bricks when my clinical nurse specialist told me I would need a hysterectomy. All I’d ever wanted was children — lots of children, I wanted a busy house full of noise and chaos — but in that moment, I suddenly realised everything I’d ever wanted for myself and my future had been taken away. I came out of blurry shock mode and into the room, and I cried. I didn’t really know what to do from there.
Lydia continued to do as much exercise as she could after her diagnosis; courtesy of Lydia Brain
Following my diagnosis, I spent hours on end in waiting rooms and I couldn’t help but notice I was the youngest person there by decades. The only young women around me were going to the women’s hospital because they were pregnant. I’d sit there, watching pregnant women come in with their toddlers, full of excitement and expectation, and my heart would break every time. I wished they could understand from my perspective how lucky they are. Having children seems like the most natural thing in the world, and that makes it easy to take it for granted.
I still have ovaries — my womb and cervix were removed in the hysterectomy I had earlier this year — which means when my time comes I could technically use a surrogate and IVF to have a family. But thinking about the future is a difficult task. I don’t ever think ahead anymore. I don’t even think ahead to next month; just the next immediate task or day of relevance.
“I’ll let future Lydia worry about being infertile.”
I don’t know what’s in store for me, and I don’t even know what I want it to be anymore, because any conceivable life for me is now a plan B. The permanence and loss of control is unIike anything I’ve ever had to face before, and it’s smothering. I guess ignoring the future and keeping my mind on the present helps me put off my pain. It will come one day and I can’t ignore it forever, but for now I’ve had enough to deal with and I’m just trying to be happy.
I’ll let future Lydia worry about being infertile. I’ve lost two years of my life to this illness, feeling miserable and tired and unable to do the things I want to do. It’s time for me to make up for that and enjoy a few more years of my twenties before I face the struggle of working out how I’m going to be a mum, and the difficulty I’ll have to face to make it happen.”
In the UK, 53 women are diagnosed with a gynaecological cancer each day, and 21 will die. Not all of them are of menopausal age. Grace is a charity dedicated to supporting women with gynaecological cancers by raising awareness, funding research and providing local hospitals with vital surgical equipment. Find out more here.
From: ELLE USA
