Yvonne Foong -

Seems like no one's commenting. Could my posts be plain boring or they are simply irrelevant to other people? I guess it's the latter. Comments are just an extra, after all, it is about the author and who would know better? But having been commented means someone cares and it is certainly heart-warming.

After a trait of poor-negative-sad post, the odds are now right behind me. I haven't forgot about them one bit, but because I am occupied with other things which buries the sad side of life. I hope it doesn't surface until my audiogram next week. Oh.. I can't wait for it!

Lately, I've been learning some exercises. One is from ancient Taiwan that deals with the 'chi'. I regret joining the lot cuz 3/4 of us are above middle age including my mom. Heck I am there to accompany her in the first place. The learning process is very slow to facilitate the elderly. But I can't quit cuz mom will be lonely and I paid RM110 for this twice a week, 6 month programme.

Also, I learn taichi in the morning from Allan, a 26-years-old Chinese national living with us. Now he's not the stereotypical chinese apek you might be picturing now. In fact he's this tall and muscular cute guy. I really enjoy myself cuz I'm learning in my own home and it's on a 1-to-1 basis. If you learn martial arts, you'll know how annoying it can get when learning in a big group. So taichi is not what I(and everyone else) think it is. It isn't as easy as it seems and requires strong legs because there's a lot of stances adding to the slow motion, which can get very confusing. Thanks to Allan, my very patient 'Sifu' (haha!). I hope to strengthen my legs in no time.

I was thinking of going back to jogging but I almost sprained my leg on the first attempt. I'll get back to this later. For now, let me just concentrate on my daily 7am routine. Aaargh...so early but what to do. Allan's classes start at 8:30am.

So if you are looking for something to do, why not learn taichi? After all, it's elegant, practical, and it tests your patience!

Oh...lastly there are 3 categories in taichi. I'm neither learning the one with very slow motion designed for the elderly nor the powerful one you can fight snath theft with.

Not too long ago I dreamt of myself seeing newborn tortoises. The newborn is my innerself and the tortoise's shell is a defensive shield. After all these years of fighting NF, I have unconciously built a firewall around myself, to safeguard my insecurities. NF taught me a lot but it's also killing me. In this mood now, I am not proud of NF at all. These insecurities haunt me every second, I hope that I won't turn senile soon. This grief is much worse than the many incisions on my body. Drugs can numb wounds, but what can ease this pain?

Everytime I have to sign my will, I always almost agree on denying medical resucitation should my heart fail in the midst of surgery. But then there is so much that I have not done. I am too attached to some things.

Then again, I am going nowhere living like this, always worried about tomorrow. I tried to break loose, I really did. But NF is undeniable. The wise were wrong. Education does not secure my future. I had once painted my future clearly but it became amidst now. How long more can I take the knife? When am I going to loose all my energy? Will I become profoundly deaf? What if I can't balance anymore? What am I to do for a living? Who's gonna take care of me when my mom leaves? Who's going to learn sign language with me? who's teaching me to lip read?

Reading CLEO made me realise that I haven't been bothered about my appearance and material gain for long. I can't afford to. Time's made of gold and I have to find a solution before the worst happens. There's so much to think of, so much to do. Now I beginning to doubt if NF could ever be better off than cancer.

Tonight I saw a show on TV about this young girl who needs a heart transplant urgently. She has no parents and her lawyer tried his best to appeal for a legal guardian but no one came forward so in a day's time, he decided to adopt her on his own. But unfortunately, she died before the surgeons could give the heart to her. The lawyer was very sad because he has had a bad childhood himself. He wanted to do something for this girl and he did his best but she just have to die.

Makes me doubt if all these struggling and trauma I put myself through is worthwhile. What if I was meant to die young after all? If ahead of me are more problems after problems, then shouldn't I just allow myself to rest now? I am seriously very tired, even it has only been 6 years since the first synthom arised which felt like a hundred years.

I've been brought up to believe that my current situation is the effect of my own actions in past lives. But I also believe that our character will not change emensely. In that case, what could I possibly done wrong? There are a lot of worse people out there but why are they better off? Were they very kind last life and became evil now?

I am not a gambler and I dare not bet on my future. It gets scarier everyday, I wish this will all end. I have the authority to refuse all attempts during critical situations and leave the rest to the person who put me through this because suicide is another spiritual crime.

The good news is, I found a chance to save my hearing. It's the Fractionated Stereotactic Radiosurgery(FSR). It's delivered by multiple fractionated dosage so the beams are not too strong to damage the good tissues. There have been a number of NF2 patients who successfully had their AN killed by the FSR and there were no reoccurence like it would happen with SRS. Their hearing became better when the tumor shrank. This is so amazing. I thought there is no second chance for NF2 patients to keep their hearing and now I found it! Thanks to the internet. I also found Dr. Gil Lederman who has the most experienced radiosurgeon with FSR especially on NF2. Dr. Lederman also uses the lowest protocol in the world which is 2000 rads fractionated over a few treatments. John Hopkins is also a world reowned radiosurgery team but their protocol is slightly higher, 2500 rads. I've yet to read up stats on them.

The bad news is the FSR costs a whopping USD35,000. But with donations from the public to Dr. Lederman's program, it costs USD15,000. Now THAT is a lot of money. Not to forget all the mischellenous charges. If only the FSR can be done in Malaysia. But although it is being used at quite a number of places for over 20 years, the FSR is still rather new and the expertise have yet to reach Malaysia.

Now I see myself fitting into the chinese proverb, "Don't wear a hat bigger than your head". Dr. Friedman agreed to do the next surgery for free and it depends on the hospital whether they are still willing to let me stay for free. Actually Dr. Friedman is really an excellent surgeon and I am in good hands at St. Vincent. The only downside of his opinion is to loose my hearing permanently, but my life is saved, at least from Acoustic Neuroma.

I am definitely not going to miss this opportunity. Anyone would like to join me? I booked 2 tickets this morning and there were about 20+ RM30 seats left so you better hurry!

I am glad to find an article in the Malay Mail today, depicting the bad attitudes of our doctors. You can count on me to confirm that doctors in this country, especially those in government general hospitals, have terrible bedside manners. In addition to that, there is very limited communication between patient and doctor. I didn't even know who was my operating surgeon until 1 month after surgery! Though he was sound enough to give my mom a call before my second surgery, which was to remove the acoustic neuroma, but that is because it was a more than major surgery and still he wasn't any close to my current surgeon. Ok.. I should avoid making any comparisons here. But their attitude left me baffled and I had to find out what NF was all by myself.

I remember overhearing a conversation in the ward. A lady had just been admitted through emergency and was in terrible headache. She was crying for pain and a doctor on-call came by her bedside and told her, "it's not our fault and there's nothing we can do about it". Unfortunately, the same doctor also caused me a lot of stress. I had a spine surgery to remove multiple tumors and after surgery, the spine needed time to shift position. I was in a vegetable state, no sensations from waist down. Only after a couple of weeks I began to be able to move my legs again. Even so, when the physiotherapist helped me up, my feet could not feel the floor and she needed to position my legs and keep them in place when I was held upright. But that notorious doctor who knows nothing about physiology, came to me and said that if I don't get up, I won't be able to walk ever again, with a scowl on his face. At that time, I wish I could have stood up and slapped the hell out of him. To understand the situation, these doctors and nurses did not know that I could not use my legs. But I still cannot find a reasonable excuse to forgive them, especially the doctors.

I count myself one of the odds of all the patients in that hospital who is fully educated about our own condition. What's happening to the world of medicine? So for all to know, medical schools in this country do not teach their student about bedside manners. And when they go for their fellowship at government hospitals, they are placed under supervision of 'senior' doctors who, undoubtly, graduated from the same environment as they did, where bedside manners and patient-doctor communication is unheard of.

Sorry for those who have been surfing onto my blog to discover a hiatus. It's not that I've been away. In fact, I am my most loyal visitor. But there's nothing really much to blog about. Yes my life has been happening but I don't see any 'kick' in 'em that I'd be so excited about blogging it. But just a run through of how I have been...

Yesterday was Cheryl's b'day party. It was a big throw for a 21-years-old. (God she's already 21? No! It can't be!) It's great to see her and Jie Yow again. There were also Yewin, Xiong Yeu, the rest of her friends and her sister's friends and her parent's friends and relatives. Thanks to good ol' Elena for accompanying me, otherwise I'd look like a parasite leaching around her house.

I filled up the application and will mail it to Southern College one of these days. I was rather undecisive before this but after seing their prospectus, my hopes went up a few notches. Southern College doesn't sound so SOUTHERN after all. It is 3 times bigger than SMSJ. (something like a chinese independant school or a non-malaysian college) I imagine myself cycling to get around college. Maybe I should get a scooter (those without engine). Thinking about studying in a small town of Johor, just minutes away from Singapore, away from the hustles of city life. Sounds good to me. And they have a beatiful replica of Suzhou District in China for when you want to lay-off. 2 years is not long before I go off to complete a BA in English. I did consider Singapore, the Univ. of London external programme but I am not sure if I want to major in literature and the living cost in the Lion City is VERY HIGH! The average cost to rent a room is S$500 a month! But if you have the money for living and you are keen in literature, I suggest you take that offer because it only costs RM20k ++ for a British honors degree.

As for my health, I am seing Mr. Saffari at GHKL on Wednesday and hopefully schedule for an MRI and an audiometry. I am also keeping in contact with a friend who is also a patient of Dr. Friedman.

I am resuming my vocal training at Artistic Conservatoire next month under the guidance of Maria, a student of Cecilia. She sings great opera, I just don't understand why isn't she given any chance. Damn those buyers out there. Also, I went for the audition for M! at Istana Budaya last Thursday. I sang a non-operatic repetoire with straight-tone and the interviewer says, "You've a beatiful voice but you have to understand that you do not fit into what we are looking for". Haha...! whatever. I wasn't keen at all. But the trip back home was bad cuz it was difficult to hail a cab outside Istana Budaya.

Ok I am having that post-blog-brain-freeze again so.. toodles!

It's been quite a few days since I last blogged. I've been very busy and blogging is one of the last things on my mind. Yuki doubts that my friends can be busier than me. Well, this lad sure understands me. The two people who really understands me is Yuki and Elena. Now.. I mean REALLY understand and not just simply 'know'. Like Elena, I almost never have to finish my sentence before she knows what I am thinking. And with so many disabilities, she's one of the only person who really accomodates me. And as for Yuki, either we have the same character or .. well somehow. Then there is Kenrick, my partner in crime. He's a terrific person for when I want to chill at the mall and what not. But when it comes to the inside, he's a complete opposite. And I find myself having difficulties talking to him most of the time.

Elena would probably say that we can't expect people to understand us. Well you know what? I've just found 2!

I am going beserk soon! Aaaah! It is true when they say that it is impossible to avoid problems. So now I have my right AN removed with complete facial nerve preservation, very thankful for that but I'm now left with a new worry that is the same exact tumor on the left hemisphere of my peanut brain. Oh god this is my residual hearing please don't take it away from me.

So I am out of the hospital I should be getting back onto my tracks but... I am left to worry about my AN. Dr. Friedman chooses an approach that can preserve my hearing for some time but it will one day go away. Stereotactic radiosurgery has been to known to produce good results but the result varies for NF2 patients because our tumor is slightly different. For normal ANs, it contains schwann cells but ours are neurofibroma cells which is thougher to tackle. Some says the result is good while some, including publications by universities I have found, insists of failure. I can't just give it a go like that cuz he says that facial nerve preservation have been difficult after SRS treatments.

That's that for me to worry. I'll continue my research and hopefully get my next MRI done soon enough cuz I swear a change of hearing nowadays. On the other hand, I've to worry about my education. Yes you can quote me on my words to take a different approach to life but heck for the fact that I am sick and being the only child, I seriously need a sound education for survival. (after all who's going to pay my medical bills?) so okay after I get this AN handled I will go back to college.

Ah...it's been happening nowadays. I often start off with loads of things to blog but they tend to dissapear somewhere in the middle... what is wrong with me?