I’ve been laying in total darkness for goodness knows how long. I don’t know where I am or even what’s happening to me. My eyes won’t open and my body can’t move.
The only thing I hear are voices of strangers. They’re talking about me but I can’t make sense of what they’re saying.
Until one woman yells, “Guys, we need to hurry. Joy’s husband has been calling. Her family is here and they will not leave until they see her!”
Hearing the sound of my husband’s name makes my heart race. I need to get up. I have to see him.
Despite every inch of my body feeling frozen, my eyes find the will to open. The darkness disappears and my blurry vision is blinded by a white light. It’s as though I’ve woken up in the sky, where the walls and the floor are fluffy white clouds, and the angels around me are wearing blue scrubs instead of wings.
Who are these people? Why do they think I’m asleep? Why are they talking about me? Why can’t I move?
Feeling lost, stuck and completely vulnerable, my heart sinks and a tear starts to drop down my face.
“Ian…. I need…to see… Ian.” I mumble breathlessly. What may have intended to come out as a loud scream, came out like a whisper. A whisper only one nurse could hear.
“She’s awake! She’s awake! Dr Burman, Joy’s awake.” a woman squeals.
I snap back to reality when I hear one voice I recognise. The voice of my surgeon. Dr Burman, a smiling and also world leading pancreatic cancer specialist walks towards me.
He gently holds my hand and says “Joy, you’re doing great. You had a very difficult and complicated surgery, but it’s over now. Get some rest… and don’t worry, Ian’s here.”
I’d been warned there was a 30% – 50% chance of something going wrong in surgery, but in this moment, I don’t care if anything went wrong. The only thing that matters is that I’m alive. I’m freaking alive!
Just two weeks ago, I felt the darkness of death hovering over me when I was diagnosed with a rare benign tumour on my pancreas that mysteriously and exclusively grows in young, healthy women in their 20s and 30s.
A successful surgery was my only shot at staying alive.
Without it, the tumour could transform into pancreatic cancer (which has a survival rate of less than 1%). And even if it didn’t, because the tumour was larger than the size of a tennis ball, it was pressing on my major blood vessels and was likely to give me a heart attack or stop my blood from reaching my major organs.
At 26 years old, a chance at life was all I hoped for. Grateful the surgery was over, I breathe a sigh of relief, surrender and fall back to sleep.
Meanwhile, Ian and my mother are restlessly waiting for an update on my surgery. It’s been over 10 hours since the surgery began (which is two hours longer than the maximum time they were warned the surgery could take) and no nurse nor doctor have given them any clues on how I’m doing or why the surgery has taken so long.
Unsettled by the waiting, Ian blurted to my mother “Screw it! Let’s go talk to the nurses and insist we will not leave until we see Joy. We need to know if she’s okay.”
Ian and my mother desperately rush to the intensive care unit at one of London’s world renowned private hospitals.
As they get out of a painfully slow lift on the fourth floor, they chuckle at the thought that while the hospital has state-of-the-art facilities and highly qualified medical staff, the decor and aura of the building feels ancient and abandoned.
Walking through empty hallways with most lights turned off, they wonder where all the nurses, guests and patients are. Following the signs to reception, they meet a young Filipino nurse dressed in red scrubs.
“Hi, I was told my wife Joy would be here after surgery. Is she here?” Ian asks.
“Ah, you must be Ian,” the nurse smiles while reaching out for a handshake.
“Our visiting hours have closed. However, Dr Burman said you want to see Joy and because the surgery took so long, we’ve made an exception for you. She’s just finished surgery. You can see her now. Please come with me.” the nurse adds.
As they make their way to my room at the end of the hall, Ian and my mother have no idea what to expect. The nurses needed two hours to prepare my body to be seen by my family after surgery. And boy was I prepared.
Sleeping peacefully with my breathing mask, I’m wrapped in a white and blue blanket and connected to all sorts of monitoring machines that give nurses the data they need to watch me like a hawk.
You’d think the worst part of the surgery was over, when in reality, in this moment I’m holding on for dear life.
The nurse pulls back the blanket to show all the tubes they’ve put in me to keep me alive after my surgery.
To their shock, in addition to the large long cut across my abs from surgery, they discover I have:
A 60cm tube going down my nose into my stomach to empty my stomach.
A tube in my spine for pain relief.
A tube in my neck that’s used to inject me with medication.
Drips in my arms for fluids and nutrients.
Two large stab wounds, one on each side of my abdomen. Each hole has a garden hose sized tube inserted to drain leaking blood from the surgery.
A bag on each side of the bed getting filled with my blood.
A catheter in my vagina to drain my urine.
“My baby…” my mother gasps.
Hearing their voices and feeling my mother kiss my forehead, I wake up and crack a subtle smile.
“I… love… you. I’m… so… glad… you’re both here,” I mumble while struggling to breathe.
Spotting Ian and my mother in my room, Dr Burman walks in to give us an update on the surgery. I turn my head to Dr Burman.
“How did I do?” I ask with my eyes half shut.
Looking concerned, Dr Burman repeats “Joy, you had a very difficult and complex surgery.”
“Your tumour was larger than what we expected.” he began.
“On top of that, it was tangled in your major blood vessels. When a tumor of your size is wrapped around those blood vessels, we can’t take it out.” he warned.
“But then, I noticed that a small part of your tumour was liquid. I figured if I popped it and suctioned the liquid out, I could reduce the size of your tumour and more delicately detangle it from your blood vessels. Fortunately, that worked.” Dr Burman continued.
“I was able to cut out all of your tumour! If you had been diagnosed a little later, your tumour would have been inoperable. I’m glad you agreed to do the surgery so quickly.” Dr Burman smiled.
Speechless, the only thought running through my mind is “WTF? WTF? WTF?!!!”
This is happening to me? Miss tee-total, sleep loving, organic eating, wellness enthusiast?! I’ve dedicated my entire life to making healthy choices, and I still ended up here?
Just last month, I was feeling super duper happy about life.
I recently married the love of my life in Santorini and we couldn’t wait for our honeymoon in the Caribbean. We moved into a new home because we thought it’d be the perfect place to start our family. I even got the courage to quit my job and invest my savings into starting my own health coaching practice.
I wasn’t sick. With no family lineage of cancer, I had no reason to believe I was even at risk of getting a tumour.
Then out of nowhere, I learn that for the past few years, I’ve had a pre-cancerous tumour silently growing inside me all this time. My only symptom was palpitations every doctor I’ve seen has brushed off as nothing.
If it wasn’t for the one unusual episode I had back in February where my family suspected I had a mini-stroke, I wouldn’t have investigated what was causing my heart problems.
It’s a miracle I had that one episode.
It’s a miracle that despite my GP refusing to give me a referral to see a cardiologist, I received a referral from an unknown doctor.
It’s a miracle the cardiologist spotted the tumour.
It’s a miracle my surgeon works at one of the 5% of hospitals in the UK that are qualified to do this surgery.
It’s a miracle my husbands company, Trainline, provided the medical insurance I needed to get the surgery.
It’s a miracle my surgeon was able to take out all of the tumour, given it was borderline operable.
At first I thought I was unlucky. Unlucky to be dealing with this at what was for sure the best time in my life.
When in reality, I feel so lucky. Incredibly lucky.
How did these miracles come about? I’m not quite sure yet.
The one thing I know for sure is that none of this would have been possible, if I didn’t surrender. I needed to embrace not being able to control my future.
For the only way for me to get through this was to trust in everything and everyone around me.
To have faith in everyone single person that prayed for me, even if I didn’t know them. To have confidence that I didn’t need a second opinion and this surgery was safer than alternative and less invasive cancer treatments. To believe that Dr Burman’s hand would have a healing rather than hurting effect when I was on the table.
I needed to trust in everyone around me… for there was nothing I could personally do to save my own life.
With the surgery being over and the tumour being out, I thought the worst was over.
When in reality, the surgery marked the beginning of my battle with the tumour. Turns out that doing what they call the Whipple Surgery comes with life changing risks and complications, from internal bleeding, to pneumonia, becoming a diabetic or worse never being able to digest nutrients effectively again and becoming chronically malnourished.
The cost of taking out the tumour was also having to remove my gall bladder, duodenum, bile duct and half of my pancreas. The surgeons had to re plumb my digestive system and there’s no knowing whether it’ll work effectively again.
I’ve been told it takes 6 weeks to recover. So far, this has been a recovery from hell.
In the next episode (i.e. next blog post) I’ll let you know how the recovery goes. What will the biopsy show? Will I be completely tumour and cancer free? Will it cost me becoming a diabetic or chronically malnourished?
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This is the story of my life, and you’re reading it as it happens.