Written by Alex Hill
"For years I’d seen cancer on TV and in the news but, because I didn’t have a family history of it, I was living a healthy lifestyle and had never smoked, I thought that cancer would never be something that I personally would have to deal with… in July 2022 I was proven wrong."
Alex, Ovarian Cancer Warrior
Buckle up ladies and gents! For years I’d seen cancer on TV and in the news but, because I didn’t have a family history of it, I was living a healthy lifestyle and had never smoked, I thought that cancer would never be something that I personally would have to deal with… in July 2022 I was proven wrong.
In March 2022 I began to have sporadic, mild discomfort in my lower left abdomen. It wasn’t really painful and there didn’t seem to be a pattern of when it would occur - it was completely random - so I dismissed it.
After a couple of weeks, the discomfort was still there where my ovary would be and other symptoms were starting to appear. I always thought cancer symptoms were drastic like agonising pain, vomiting, abnormal bleeding etc but I had none of that so cancer didn’t even enter my brain. I was constantly bloated (but figured that just comes with being a woman), I was peeing more frequently despite not drinking any more water and I was feeling nauseous a LOT.
I thought what any woman might’ve thought - oh my god I’m pregnant! How? When? What? I was on contraception and hadn’t missed a single pill so thought it must be the next immaculate conception. Took a pregnancy test - negative. Phew! So why was I having these symptoms? I knew all of these symptoms were hormonal-related and I began to notice my abdomen pain increasing when I had a full bladder so figured something must be pressing on it. After a little research, I diagnosed myself with an ovarian cyst and took myself to the doctors.
My doctor tried to put my symptoms down to my menstrual cycle. I knew it wasn’t. Cramps have never been one of my menstrual symptoms so I knew unequivocally it wasn’t menstrual cramps. I pushed and she referred me for an ultrasound after a painful initial assessment. Six weeks later, I had the scan. They confirmed that I had a 7cm cyst on my left ovary and validated my pain saying “you poor thing”, which made me feel heard. After this, my GP referred me to East Surrey Hospital Gynaecology for 6 weeks’ time.
Ironically, the day before my appointment, I woke up in agony. I couldn’t stand or move. An ambulance was called for me and they told me, considering it was to do with something I had an appointment for the next day, I should wait it out as A&E wait time was about 8 hours that day. After the most distressing night of my life, I made it to my appointment the following day. I was in agony and had to be wheeled to my appointment by my mum.
Image: Alex Hill
Gynaecology then said they weren’t equipped to deal with my level of pain so I should go… you guessed it… to A&E!!! I was furious (the poor receptionist got an earful)!! I demanded to see the specialist, who immediately performed an incredibly painful ultrasound (sorry to the nurses whose blood supply I cut off to their hands) and confirmed I had a dermoid cyst on my left ovary. She explained that my cyst had now grown to 12cm diameter in just 6 weeks and had become so heavy that it had caused the ovary to contort, which had also meant my ovary was now pressing on my sciatic nerve ON TOP OF the general cystic pain!
She admitted me for emergency keyhole surgery to remove the cyst and I was in the same day. Waking up, I was told the cyst had been successfully removed and she was sure it was a dermoid cyst but as per standard procedure would send it for a biopsy. She was clear that because it was a straightforward surgery, there would not be a follow up. Four weeks later, life was good: I had recovered, getting back to exercise and free of this pain that had haunted me since March.
Then I got a phone call.
I was asked to come into the hospital… same day… without an appointment… unheard of in the NHS! I remembered that my biopsy results hadn’t come back yet and they said it would only be a fortnight. I was nervous but convinced myself to be positive. It couldn’t be cancer. Not me. Not ever. Then they slid a green Macmillan card over to me and my whole world collapsed.
They passed me onto Charing Cross Hospital, who were best at dealing with my rare cancer. I had ovarian germ-cell cancer but they didn’t know my stage or grade. I learned that ‘dermoid cyst’ is a PG term for a benign tumour and that in the centre of the cyst were cancerous cells. They told me that, whilst it was rare, it was curable and had a great treatment success rate. They gave me the information leaflet and honestly I don’t remember much other than tears after that - it was all a blur.
The limbo period between the initial diagnosis and my first appointment with my new hospital was HELL… not knowing if I had limited time or what my options were was devastating. When I got to Charing Cross in September, the team was incredible and continues to be. They answered all of my questions and made me feel so comfortable. Luckily for me, my cancer was caught early so I was a Stage 1c. My previous surgeons failed to mention that the cyst burst during my surgery and cancer cells may have spilled into my body/bloodstream. We had to act fast.
A week later, I was starting my chemotherapy journey in London. I had to undergo three 3-week rounds of BEP chemo with a one-week inpatient stay at the start of every round. It was tough. The side effects, being away from home and my family, dealing with my new reality. But I did it and frankly I BOSSED it. The nurses and doctors were amazing and with me every step of the way - they heard all of my concerns and investigated as and when they arose. I finished chemo in mid-November 2022 after which, I booked myself and my amazing partner a nice, long, congratulatory holiday to Morocco.
December 2022 I was booked in to have my left ovary and fallopian tube removed as a failsafe. I was discharged on Christmas Eve. This was a large operation and I was out of action for a few months afterwards. It was a success and the scar is now a beautiful reminder of how strong I am.
Cut to now: I am still nervous about the future. I’ve been given a provisional ‘all-clear’ but am still under surveillance by the team and have regular scans and bloods. I have an appointment to begin the process of freezing my eggs this summer - I’m 25!! The fertility aspect is still sensitive for me as I’ve always wanted to carry my own children and now that future is uncertain. I wouldn’t wish what I’ve gone through upon anyone but it has given me such a unique perspective on life. I love life and I try to live in the present moment. Amazing charities like this one have given me such support and opportunities and I think it’s so important to get the message out there that it could happen to you so trust your body!
If there’s three things I want you to take away from my story it’s this:
1. Be positive - the body follows the mind.
If you’re in a negative headspace your body and physical symptoms will reflect that; stay positive and who knows what your body can do?!
2. Be spontaneous - life is too precious and short to worry about what other people think. Do what makes you happy and never look back! There are more important things than money or Netflix!
3. Be-lieve in yourself - if something doesn’t feel right, push for your voice to be heard and believe in what your body might be telling you.