Yvonne Foong: Fighting NF

As most of you might have known, I made a speech at The One Academy last Saturday. My ex-lecturer, Pinky Khoo, and the organising committee had been very kind to invite me. I had great fun watching the interesting performances, from ballet dance, singing, panthomime, to breakdancing. Children, teenagers, and old folks of Ti-Ratana welfare society were also invited.

here are some photos taken by my new-found friend, Cecilia Chau.

Do you know what it’s like to be extremely nauseous everyday for an entire month, vomitting every single trace of food and water? Do you know what it’s like that after waking up from a 10-hour brain surgery, you find your face is dead, your mouth and tongue is numb, and you can’t even drink water properly? On top of all that, can you cope with the sudden changes, while facing this world in a lopsided view, unable to walk in a straight line, risking of tripping at every step, because the balance nerve has been removed?

You don’t know, but I do. Those times were horrible. I had my first Acoustic Neuroma removed at General Hospital Kuala Lumpur in 2002. I was only 17, scheduled to sit for the SPM examinations at the of that year. While my friends spent their days happily in school, browsing lifestyle magazines for fashion tips, I was left scrambling to pick up the pieces of my broken life, because of the poor medical expertise in this country.

My doctors did not inform me of the possibilities of complications. can you imagine? A 17 year old girl, young and tender, could have had a bright future, but suddenly found herself with a paralysed face, damaged balance, and she couldn’t eat properly. She spent an entire month at home vomitting her guts out.

And whaddya know? That tumor was not removed completely. They only removed half of it at GHKL, where there is supposedly the best facilities in the country. They couldn’t remove it because they did not know until that surgery, that tumors caused by NF2 are a lot stickier than those caused by other problems.

I suffered a lot, vomitting, having problems eating, my face is now dead, my parents suffered for having to cope with my changes and cleaning up vomits, but only half of the tumor was removed. Was it worth it?

Deafness is just a minor problem, you are correct, especially when compared to ALL THE PROBLEMS that will follow when this tumor is removed in Malaysia. The reason why I only highlighted deafness because it can be easily related by the public. If I were to explain all that I have right now, how many will actually take notice? They might even think I’m just making it up. But millions of NF patients worldwide can testify that my claims are true. My book’s foreword is also written by a surgeon familiar with this tumor in America. He has removed several thousands of them. Why is it that a fact so widely known abroad, is considered the cause of greed in this country?

Then again, what is greed? Is the desire to reduce suffering, greedy? If yes, then is suffering considered NORMAL?

I finally discovered why my left arm has been significantly weaker, which is evident when I lift weights and find that my right arm has more strength than the other. While recalling how Someone accidentally whacked me hard this morning, I subconciously ran a hand over my left arm and drats! I found another tumor, beneath the fatty tissues, above the elbow. It’s not so obvious because I’m quite chubby there.

I know, I could have blamed him for causing the lump if I had not yet been diagnosed with this genetic disorder. Haha!

Ok, jokes aside. The lumor is pretty big, as big as the one on the curvature that joins my neck and right shoulder. Tumors can be distinguished from fatty tissues, because tumors are hard in texture, and mine grow on nerves, meaning that they move sideways when you press them. Imagine a cotton ball wrapped around a string, that sways from side to side when you push it.

Many tumors have been discovered along my peripheral nerves, just beneath the skin that I never blogged about. Most of them are still tiny. There’s another big one along the jawline, near my left ear.

I feel like a wet log with mushrooms growing all over. Parasites!

It is actually easier to accept such discoveries knowing that it is normal for my condition, than to believe that I am healed, as told by some religious people, but only to doubt my faith in God when more tumors appear.

How many more surgeries will I need?