Katie Wilkin’s journey
My story starts back in 2003. I’m living the student life at Cardiff University, and am right in the middle of second year exams. I’ve been back and forth to the doctors with shooting pains in my tummy, each time being sent away with different solutions - from antibiotics for a bladder infection, to paracetamol for period pain. One morning, when I can barely climb out of bed, my housemates take me to A&E and I’m admitted to hospital. Turns out it was neither an infection nor period pain, but instead two borderline ovarian cysts - one the size of an orange, the other a grapefruit (or so I’m reliably informed afterwards).
That summer, I have surgery to remove them and like many 22 year olds with the world at her fingertips, I crack on with enjoying life, finishing my degree, climbing the career ladder and feeling invincible.
Fast forward 17 years and it’s April 2020. I’m married, living in Jersey, and there’s a global pandemic kicking off. Those familiar shooting pains had started again, but they’re only every so often… and I’m fit and healthy... it’s nothing, right? I actually think I could be pregnant - I have all the signs - bloating, cramps, tiredness.
Unfortunately, the test says otherwise, and with the pain getting worse, I book an appointment with the doctor. Because of my medical history, I know a CA125 blood test, a blood test which checks for raised levels of a protein called CA125, is the main indicator, and I make sure this is taken, with a referral for a scan. Thankfully no antibiotics or paracetamol suggested this time.
Within a week, I’m lying on the bed at the radiography clinic, knowing immediately what’s going on inside. The radiographer’s face said everything. The cysts are back… But the C-word still never crosses my mind.
The next few weeks are a blur of consultations and referrals. Because Jersey is a small island, I’m quickly referred to Mr John Butler, Consultant Gynaecological Oncology Surgeon, at The Royal Marsden in London, where more ‘complex’ cases are taken on.
I’m still working, but feeling more exhausted, and in increasing amounts of pain, popping paracetamol and ibuprofen like they’re going out of fashion. My team and boss are brilliant, taking meetings and work off my plate, allowing me to flex my working hours to start later (the pain is more acute in the morning). It’s a huge relief and one less worry.
Mr Butler has confirmed I will need surgery that will remove both ovaries, but knowing our desire to start a family, has agreed we can try egg harvesting before he operates. Before we have time to think, we’re starting the first stages of IVF as part of fertility preservation treatment.
It’s enough to say that injecting extra hormones into my already aching body is horrendous. But it’s worthwhile, and a week later, we are delighted to have two fertilised embryos in the freezer.
But there’s no time to sit back. My scans show changes and Mr Butler wants to operate quickly.
Five days later, I’m stood on the infamous steps of The Royal Marsden, saying goodbye to my husband. I know I’ll be in hospital for up to a week, and because of COVID, won’t be allowed any visitors. I feel strangely calm and composed - we got all the emotions out last night, and this morning, I’m ready.
My surgery is longer and more complex than expected, but I’m ok and they are pleased with how it went. I realise now how excruciating it is for family and friends “on the outside” waiting for that call. But I know they are all there, supporting each other and willing me back to recovery.
I build strength remarkably quickly considering I now have a scar down the length of my abdomen, and I’m out of hospital six days later. I remember the kindness of the taxi driver on the way home, driving so gently as I clutch a pillow over my tummy to reduce the impact of the bumps in the road.
A few weeks later, we’re back at The Royal Marsden for a follow up and my results. I never hear those fateful words so many others receive: “you have cancer”. Instead, Mr Butler shows me pictures, and talks me through what they found in the various biopsies and organs they’d removed in surgery. In most places, the disease was borderline (not cancerous). But in a few places, there was evidence of Low Grade Serous Ovarian Cancer - a rare variant of Ovarian Cancer, often found in younger women.
Next steps - six cycles of chemo every three weeks with two drugs called Carboplatin and Paclitaxel. And it starts in four weeks. No peace for the wicked!
Over the next few weeks I try to put cancer out my head as much as possible. It’s summer, and I am determined to enjoy some family time. I also decide I’m going to try a contraption known as the Cold Cap, as I am determined not to lose my hair - call me vain, but I just didn’t want to “look” like a cancer patient... especially as I just didn’t feel like one. I remember being confused by this dichotomy and realise now that the way cancer is portrayed in the media and online isn’t everyone’s reality. Yes, it’s terrifying, and awful, and a million other emotions, but there are things that I would never have done, or people I would never have met had it not been for cancer.
My first chemo is terrifying. But the team at The Royal Marsden are so kind. I think they see the fear in my eyes, which are wide above my face mask. It’s a long day, arriving at 9am, and not finishing until 6pm, but I get through it with the help of Netflix and many family and friends keeping me entertained on WhatsApp. I even tolerate the cold cap!
I find the first cycle the most disconcerting. Before starting treatment, I’m given a long list of side effects which may, or may not, happen. Each person responds differently, and it’s anyone’s guess which ones may hit me. I spend the three weeks of that cycle on tenterhooks, wondering if today will be the day I can’t get out of bed, or will be hugging the porcelain throne. Thankfully, nothing happens, and I get through it without issue.
In fact, the next five cycles pass with remarkable ease and I am acutely aware that in saying this, it’s not everyone’s experience - I know I am lucky. We get into a rhythm, from breakfasts at Gail’s bakery on the morning of chemo (my favourite!), to regular walks for an afternoon coffee. It all helps maintain some normality. Sure, I’m tired, and the first few days after treatment feel like a stinking hangover, without the party, but on the whole, I escape those dreadful side effects, for which I’m very grateful.
I can’t sit around doing nothing with myself between cycles. I have an idea about making Christmas tree baubles, to raise some cash for a couple of charities who have helped me - Overcome and The Royal Marsden Cancer Charity. Over 300 baubles, and £4,000 later, I never imagined they would be so popular and even enlist my mum and aunty for help! Although I’m sure Bryan is not sad to see the back of the glitter, speckled across the kitchen as a result of the bauble production line, I remain so proud of what I achieved during this time.
As the weeks tick down, there are moments of hilarity (who knew it was possible to get so emotional over losing nose hair?!), joy, and optimism. I join a Friday afternoon virtual “tea and chat” run by Ovacome charity, with other women going through similar experiences. Although we’ve never met in person, they have become close confidants, and are some of the bravest and most inspiring women I’ve had the pleasure to encounter. I also reconnect with old friends who I’ve lost touch with over the years, which has been such a joy. And I prioritise my mental health, engaging with a therapist, who is a great source of independent support, allowing me to simply sound off and share whatever’s going through my head. It all helps.
The final treatment feels like a momentous milestone. It’s only a week and a half until Christmas, and I can’t wait to see my family who I haven’t seen since before I started treatment. Unfortunately, Boris has other ideas, and like many other families across the UK, we enjoy a Zoom Christmas instead.
Fast forward to January, and I have the post-treatment consultation. I’ve had a scan a few days before, and the results are in. “No Evidence of Disease”. The magic words. I’m overjoyed, relieved and overwhelmed all at the same time.
And now, time to rebuild. I’ve taken some time to get stronger and am just now starting back to a phased return to work.
I know the fear of cancer is something I have to live alongside, and that the next year is critical. As Mr Butler reminded me when we first met - we will be lifelong friends - and I’m ok with that!
Whilst cancer will forever be part of my story, I will not allow it to define me, and will be grateful for the opportunities it has allowed me, the friendships it has given me, and the lessons it has taught me.
