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Living Through My Worst Nightmares: Episode 4

Living Through My Worst Nightmares: Episode 4

The number one question running through Ian’s mind is does my wife Joy have cancer?

Yesterday, my surgeon Dr Burman miraculously removed an almost inoperable tennis ball sized tumour on my pancreas. Though the surgery was a success, we don’t yet know if I’m cancer free or whether I’ll need further treatment.

We have to wait for the day we get my biopsy results (a.k.a the day you find out if you’re more likely to live or die).

To Ian’s surprise, I’m at peace with whatever the biopsy result will be. For what I fear most isn’t cancer, but one of the long term consequences of doing what it takes to avoid cancer.

Because the surgery involved removing a few of my organs in my digestive system, my body will never work the same again. There’s a high chance I’ll never be able to digest foods effectively again and I’ll become chronically malnourished.

This could affect my fertility and ability to have a healthy pregnancy and children. I need to figure out a way to not only survive, but heal completely.

Feeling helpless and as though our future as newlyweds is out of our control, Ian asks Dr Burman the morning after my surgery, “Is there anything we can do?! I don’t want to wait and see what happens.

Dr Burman smiles cheekily at Ian and says “I’ve done my job, I took the tumour out. Now it’s Joy’s turn. It’s her job to heal! There’s a 50% chance she’ll get at least one complication. She could bleed internally, get diabetes, pneumonia, a hernia, need another surgery… and so on.”

As I’m resting in the intensive care unit at one of London’s private hospitals, Dr Burman turns his body towards me. “Joy, if you want to avoid any consequences from the surgery, you must do everything you can to recover as healthily and quickly as possible.

Desperate to heal complication free, I willingly nod, “OK Doc. We have a deal.”

Little did I know, the journey to healing would actually be a journey through hell. I’ll have to go through a series of painful trials to simply earn the chance of healing complication free.

I’m lying in bed with a 9 inch cut across my abs, a 60cm tube going down my nose into my stomach, 2 open stab wounds on each side of my abs squeezing garden hose sized tubes deep into my core to drain any internal bleeding, and the nurses have put five other tubes in my neck, arms, hands and back to monitor me like a hawk and drip me with medication round the clock.

Even though it’s been just 12 hours since surgery, the first thing on my “healing to-do list” is to walk. Dr Burman calls over my physio Elle to help me get moving.

Bursting with energy, Elle squeals “Hi Joy! It’s time to get out of bed! Let’s take off your oxygen mask, move some of your tubes and you’ll be good to go!

I try to sit up. However, no matter how hard I try, my upper body can’t move even an inch. I then try to move my legs and discover I can’t feel or move my legs either. From the neck downwards, I’m completely numb and stuck. 

It suddenly hits me. I no longer know how to move my body, let alone get out of bed and walk.

I start to panic and stare blankly at Elle. Noticing I’m struggling, the nurses grab my body and lift me so I can sit at the edge of the bed. 

See, that wasn’t so bad was it?! You’re an athlete, this should be easy for you. Now stand up.” Elle smirks.

Out of breath without my oxygen mask, I start to get dizzy. My vision turns blurry and I can no longer see or hear anything. 

Gasping for air, I stutter, “I… can’t… breathe.

Elle repeats “Come on. Stand up!” 

Unable to, I slowly blurt out “I … can’t … breathe … I … can’t … see.” 

Noticing Elle isn’t flinching a bit, Ian shouts “She just said she can’t breathe!” 

The nurses quickly check my blood pressure, only to realise it’s dropped drastically fast.

Oh God! She’s about to collapse! Hurry!” Elle screams. 

The nurses rush towards me to lay me flat on the bed. Panicking, Ian asks “What’s happening???

With a concerned look on her face, Elle responds “She’s fainting. She just hasn’t collapsed yet. Joy’s body is so strong, she’s somehow holding herself up without being conscious. I’m surprised. Someone else would have collapsed on the floor ages ago!

As the nurses put my breathing mask back on my face, I start to realise it may take weeks for me to do the things I used to take for granted.

I can’t get out of bed, I can’t walk, I can’t shower, I can’t even go to the toilet… I either need tubes or a nurse to help me do the most basic of things. 

Elle wraps me under the covers, leans towards my ears and says “Joy… I want you to know you’re okay. I’m going to go now. Get some sleep. It’ll help. We’ll try again later.” 

I effortlessly dose off.

Only when I fall asleep, my brain begins processing the fact that my abs have been sliced open and some of my organs have been cut, burned and removed. I subconsciously begin fighting for my life. 

In my first dream, Ian and I celebrate my release from hospital by taking an afternoon walk by a river. Without warning, a strong gush of wind throws me into the ice cold, raging water. The current is so strong, my body effortlessly flows with the river towards the ocean and I have no way of getting out.

Despite desperately trying to swim and keep my head above water, I quickly start to sink and drown in dark water. 

As I’m drowning, a powerful force I can’t see suddenly pushes me out of the river from underneath me.

Landing face down on the muddy river bank, I turn around to see what just saved me. A giant, furry, blue eyed wolf. 

Coming out the water, it begins to growl at me showing it’s bloody teeth.

I want to run away but I freeze. The wolf walks towards me in slow motion and digs it’s razor sharp fangs into the right side of my abs. The bite is so intense, so real, I scream in agony as I try to push it off me. But it instead bites more viciously into my core.

In this moment, I feel as though I’m being eaten alive.

I scream painfully until I abruptly wake up and realise I’ve been screaming the hospital down. Six nurses rush into my room thinking I’m in a critical condition… only to discover I just had a bad nightmare.

Confused by my loud cries for help, Ian gasps “What the fuck ???!!

Don’t worry. Nightmares are a side effect of the surgery,” one nurse explains.

My oncology counsellor say it’s the drugs. Dr Burman thinks I’ve suppressed my fears. I believe you don’t know really know what it’s like until you’ve had such an invasive surgery.

My nightmares were my window to an alternate reality. One that’s not life or death, but it’s in between. And in this in between moment, you don’t know whether you’re going to live or die during and after surgery.

I found myself visiting another world looking for my dead relatives and friends. Every time I’d find them I felt safe. But a strong wind would pull me away from them and hold me flying high in the sky. Wanting me to join my dead relatives, the fierce wind threw me back to the ground as violently as possible. It’d throw my face against the floor, the walls, and any furniture around me. I felt my bones breaking, I felt blood dripping down my face, I could see blood all over the floor. I’d beg for this dark force to stop. But it wouldn’t.  

It didn’t matter if I woke up, every time I’d fall back to sleep the nightmare of being violently brought down from the sky onto a planet of my dead relatives and friends continued day and night for seven consecutive days.  

To avoid nightmares, I tried to stay awake. Only, the darkness followed me into my reality. I began hallucinating.

When Ian would talk to me, I’d see a grim reaper that looked like a faceless woman. Flies would come out of her black skull. Scared what I was seeing was real, my eyes opened wide and I’d scream for help at the top of my lungs.

No matter how hard Ian would shake me and firmly shout “Wake up! Wake up! Honey, it’s me! It’s me!” I couldn’t hear him and I certainly couldn’t see him.

Only I could wake up from my nightmares and hallucinations. Nobody else could make them stop. 

By the time I got to day four after surgery, I was wiped. I had no strength or energy left.

When I slept, I was fighting for my life. And when I was awake in between my hallucinations, the nurses would inject me with drugs, pull out the 60cm tube in my nose, yank out the garden hose sized tubes inserted deep into my stomach, and withdraw three bottles of my blood from my neck everyday. I couldn’t eat anything solid, I almost fainted again the next time I tried to walk, and every time the nurses helped me get out of bed it was a painful struggle. 

I began to wonder, “What do you do when you’ve fallen and you have no strength to get up? What do you do when you feel powerless and as though you have nothing more to give?”

Out of ideas, I turn to Ian and sigh, “Babe… I’m tired. Really, really tired. I have no energy left.” A tear drops down my face. 

He looks at me while holding my hand and cheerfully smiles, “I know baby. But you know what? As long as you keep fighting, I’ll be with you every step of the way.

It was in this moment that I realised something. 

Ian had been by my side every minute of everyday. He took time off work so he could be with me all day, he slept in a chair next to my hospital bed every night, he showered in my bathroom, ate nothing but hospital food, and jumped at every opportunity to take care of me. He never left my side. 

When I looked into his eyes, I suddenly remembered a vow I made to him.

On our wedding day in Santorini on September 4th 2016, I said “I vow to always workout and take care of myself. So that no matter how hard life gets, I have the energy you need in a partner and in the mother of your children. I am committed to maintaining my physique for as long as my body will allow, so that even when you’re in your 50s or 60s, you have a partner to go running and see the world with.”

We joked whether I naively shot myself in the foot by promising to never let myself get unfit. 

When in reality, this would be the one vow to give me the purpose I needed to get through the hardest time in my life. This one promise would be my reason to live. My love for him would be my source of energy.

It was in this moment that I realised, it didn’t matter how much I was hurting or how horrific life was for the both of us right now. The only thing that mattered is that I do everything I can to take care of myself so that I can be the wife I want to be and promised to be. 

I decided from this moment forward, I will not worry about all the things I don’t have, all the things I can’t do and all the ways I’m hurting. From this day forward, I’ll spend everyday doing one thing I couldn’t do the day before. If I do that, I’ll get better, one step at a time. One day at a time. 

After making this decision, my recovery quickly turned around and I began healing quickly and joyfully. Instead of suffering everyday, I got better everyday. I celebrated every bit of progress, no matter how small it may be.

  • Day 1: Sit up in bed with assistance

  • Day 2 to 4: Walk a few steps with assistance

  • Day 5: Walk a few steps on my own

  • Day 6: Walk up and down 2 flights of stairs (18 steps each way)

  • Day 7: Hallucinations and nightmares stop

  • Day 8: Get out of bed on my own and walk up 6 flights of stairs (54 steps each way)

  • Day 9: Start doing daily legs and butt toning exercises

  • Day 10: Released from hospital and go home four days early

  • Day 11: Make myself a cup of tea, shower and dress myself

    See Also

  • Day 13: Walk 1 mile with my parents (took 25 minutes)

  • Day 14: Stop taking pain killers

  • Day 15: Walk up and down 12 flights of stairs (216 steps each way)

  • Day 20: Walk 1.5 miles on my own (took 41 mins)

  • Day 21: Walk 2.5 miles on my own (took 37 mins)

  • Day 26: Walk 4 miles on my own (took 1 hr 30)

  • Day 30: Walking 5 miles on my own (took 2 hours)

Before we knew it, I was back on my feet and the day of my biopsy results had arrived.

Feeling the fittest I’d felt since the surgery, Ian and I walked 4 miles to Dr Burman’s consultation room in London. We make our way through the halls of the clinic that diagnosed my tumour. I’m hoping this conversation will turn out better than the last in these four walls. 

As we take a seat in the brown leather chairs in his office, Dr Burman smiles “Joy, I have very good news for you!

I’ve received your results, and I can now confirm my diagnosis was correct! You had a Psuedopapillary tumour of the pancreas. I’m relieved to tell you I got it all out!!” he expresses proudly. 

Oh, thank Goodness!!” I let out while exhaling deeply.

He gives me a copy of my biopsy results and says “We’ve looked extensively at your gallbladder, half of your pancreas, duodenum, bile duct and 15 lymph nodes and we did not find a single trace of a malignant cancer cell. You do not have cancer.

Ian and I look at each other, grinning ear to ear. 

Now, I have to disclose that while you don’t have cancer, there’s still a 10% chance the tumour will come back more aggressively. Sometimes this happens… obviously we hope this doesn’t happen to you, however, we can’t guarantee it. So you’ll need to do an ultrasound or MRI scan at least once a year” he adds.

You’d think the chance of a recurrence was a buzz kill, but in this moment, I couldn’t care less. Having no trace of cancer cells is like being given a get out of hospital free card. I’ve been gifted my life back. 

Sitting at the edge of my seat, I respond, “Sure, no problem. Do you know anything else about the tumour? What caused it? How long I’ve had it?” 

No. We don’t know what causes it. It’s extremely rare. My guess is, you’ve had it for a few years. We do however know that yours was extremely slow growing… at a rate of 1%. For context, aggressive cancerous tumours can grow at a rate of 20% or higher. This is good because it gave you time to get diagnosed on time and also means you’re less likely to have a recurrence,” Dr Burman explains.

As I look at my biopsy results on paper, Dr Burman smiles and adds, “But that’s not all I want to discuss. Joy, remember how I said there was a 50% chance you’d get a complication?”

My heart begins to sink, “Yeah…?”

“Well, we’ve been monitoring you very closely since the surgery, and you’ve had no complications. Absolutely zero. Your scar is healing the best way I could imagine. You were so healthy before surgery, even without half of your pancreas and gall bladder your blood sugar levels are more stable than people who haven’t had your surgery. You’re not diabetic and you’re absorbing foods as well as you can hope for.” Dr Burman reveals.

Oh my god… really?” I gasp while holding my hand over my mouth. 

Dr Burman chuckles, “Yes really. So I’m taking you off all medication. I’m now giving you the green light to eat anything you want. Your diet is no longer restricted. The national guidelines recommend patients take medication and restrict their diet in some way for a few more weeks. But you’re an exception to the rule. From our assessment, you’re good to go! This is one of the best recoveries I’ve ever seen.” 

Pondering over the only elephant left in the room, Ian asks, “And … erm… when can she get pregnant?

Dr Burman laughs and says “Anytime after 6 weeks from the date of the surgery. Joy’s ability to conceive and have a healthy pregnancy has not be affected by this surgery. I’ll recommend taking it easy though. It’ll take up to 6 months for Joy’s organs to heal. By that point, she’ll definitely be as good as new

I couldn’t believe it. 

There was a one in a million chance I’d get the tumour… and I got it. Yet there was a 10% chance I had cancer and a 50% chance I’d have to deal with the consequences of doing the surgery and somehow I escaped them all. 

How did this happen? Was it pure luck? Was I spared by the grace of God and the universe? Was it the cards, e-mails, flowers and prayers I received from people I know and all the people I don’t know? Was it my marriage that got me through it?

I don’t really know. Most likely a combination of it all.

But what I do know for sure is that there’s one thing that made a difference. The moment I chose my reason to live. My reason to keep going, no matter what. 

The truth is, I haven’t escaped death. Everyone dies and one day we’ll lose everything we care about. And though the thought of this scared me, it also taught me that unless you’re dead, you have a reason to live. 

So long as you’re breathing, there’s something you can hold on to. 

The one thing I could hold onto was my husband. My love for him gave me energy when I thought I had nothing left. Focusing on the number one thing I cared about helped me overcome the things I didn’t know I could faster and easier. 

So the big question is, what do you care about? What are you holding on to?

Knowing this and living for it can do more than save your life. It can make miracles you didn’t think were possible happen to you. 

This is the story of my life, and you’re reading it as it happens.

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  • Dear Joy.. thank you for sharing your experience.. im glad to have someone else who could share similar experience – i was also diagnosed with tumor and undergo whipple at the age of 20s. It was a scary experience for me. I’m impressed on how you worded each experiences.. it was totally relatable. I wish i found your blog before my surgery, at least it could’ve helped to know if each things i undergo after the surgery is normal.
    Now I’m on my way to recovery, seeing your positive experience give me confidence to fully recover.. thank you so much! ❤️ Wishing you a happy and healthy life with your family! ❤️

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