Even though I was doing well, there was still something niggling away at me. Like the feeling you have at a restaurant, when the meal you've ordered has arrived....and it's good...but you can't stop looking over at the next table cos you know you really wanted that bloody rib eye instead of the poached fish.
I quit my agency at one point, fed up with the politics and full of my own ambition to start up one of my ideas. But I lacked the courage and the confidence at the time. I didn't have any direction. I wasn't ready and unable to let go of the security a steady paycheck brings (and all the things you can buy with it). I wasn't ready to take any sort of risk. Lacked the maturity and discipline. I guess I was a pro at my job, but still an amateur when it came to my life. I didn't want it enough.
Then in 2005, during a yoga retreat we were practising self-awareness within our physical body when I became aware of this slight heaviness on the side of my face. I looked in the mirror and ... you know how when you've stared at something so long you don't see it anymore? I really SAW my face properly and noticed there was a swelling on the right, under my ear into my jaw. I didn't think much of it because it didn't hurt but went to see a doctor anyway.
He sent me for an MRI and the results shocked my entire family into silence. We immediately took the scans to the director of the National Cancer Centre in Singapore and he said"it was the worst case of salivary gland tumours" he had ever seen. There were literally hundreds of them infesting the right side of my head. Who would have thought there was so much space in my head for them??
The good news was I wasn't going to die. The bad news - to get rid of them would require extensive surgery. He would start by slicing down the side of my face from the top of my ear down to my jaw, then along my neck until under my chin, then up my chin to the cleft of my lip whereupon he would get a saw and split my head open like a watermelon (or like the Predator) and then cut away all the tumours. The surgery would most likely result in some of my facial nerves being severed resulting in permanent paralysis to the right side of my face.
We went to see every single head & neck cancer specialist in Singapore - they said the same thing. We sent the scans to specialists in Australia, they couldn't offer guarantees.
How can I explain my conviction this was not the only way? That somewhere there would be a surgeon who would be willing to use every bit of technology and time and sweat to peel away every last tumour without cutting the facial nerve? This was my fucking face. The way I communicate with the world. The mirror to my soul.
It was a hard time. Getting your hopes up every time you heard of a great surgeon. The disappointment when they see the scans and you watch their expressions change. The crash when they say the same thing. It wasn't easy falling asleep at night during that period.
But finally....finally! We found a surgeon in London who looked at my MRI and he said "I'll bet you've been to see lots of doctors and they've said this was the worse they've seen. Well, this isn't the worst I've seen." Do you believe me when I say it felt better than winning the lottery?
So Mr David Howard operated, and it took ten hours and he didn't have to split my head open nor cut my facial nerve. But guess what, my face was still paralysed at the end of it. And the recovery was fucking hard. It sucked having people stare at me. And it sucked not seeing friends in a long time and watching them do a double take. It was a real bitch going from being pretty to being different. But I could take it. Because I knew we had done everything we could possibly do to influence the outcome. We did our bloody best.
Don't get me wrong, there were days when I felt so fucking sorry for myself I wouldn't be able to get out of bed. But I would give myself permission to wallow for the day - watch movies that make me cry. Write Hate entries in my diary. Yell at my parents. Yell at my boyfriend. Whatever. But I'd only allow myself a 1-day pity party. I'd force myself get up the next. If I wasn't strong enough to see friends, then I'd take my sorry ass to a cafe and read. I made myself participate, however small the ways.
So here's the thing.
If you believe, then keep looking until you find the answer or at the very least, enough evidence to convince you that you're wrong. I could never have stepped into that operating theatre not knowing I'd exhausted every route - how could I endure the outcome otherwise?
Never ask "why me". I didn't ask "why me" when good things happened. Why should I question the bad things? Just don't waste your energy because there are plenty of other things to fret about, believe me.
Take control. I spent hours reading every medical journal, patients' forum and textbooks about my disease. We became very well acquainted, my tumours and I. Some people hide their head in the sand, scared by their disorders. You own the disease. Never let the disease own you.
Accept the diagnosis but challenge the prognosis. There are always alternatives. You pick the best option for you.
Never be a victim. It's not a good look and.....it's kind of pathetic.
Don't let other people tell you how you feel. My mum (bless her heart) kept telling me how sick I was. Not to do this, not to eat that. I didn't want to be a sick person. I trusted my body to tell me to rest when it needed to, and I listened to it. There's no need for other people to tell you what you can, or cannot do.
Do not let your illness define you. Once you let that happen, you're well & truly screwed. I loved the sympathy. It was tempting to say "but...but....BUT I HAVE CANCER!" when things didn't go my way. But don't you dare. I was really active in one of the best patient forums for parotid gland tumours, it was a wonderful support group. But there were members who had been there for years. Still talking about their disease long after it had gone. Reliving their ordeal over & over. Your disease is not your friend. It's an unwanted houseguest that has long overstayed their welcome - don't cling on to it because you think it's all you have.
My mum would say be thankful to God. I say God will only take you so far. The rest is up to you.
Things to be happy for:
- The most amazing family, boyfriend & moomoo in the world
- My friends, especially Lonzo, James and Mark, who let me be and understood when I didn't want to come out and play
- An amazing boss who looked after me every way she could, and more (thanks Caro!)
- The privilege of being able to look overseas for surgeons
- Strength of character
- A sunny disposition
- An ego that won't stay down
- An unfailing sense of humour
- Books, my constant companion for life
- The bullying and lonliness of my youth that made me strong
- Every guy who rejected me because they opened the doors for Chris, who held my hand and peeled my grapes every step of the way
Here I am today.