the pied piper

Why is it that rationality sometimes alludes us. Witch doctors make us dance to their music. If they say wipe shit on you face. You would probably do it. Why? Is it because we are desperate, that it is part of the treatment or we were hypnotised. Is it because it is mixed with religion? Dunno but we still do it even though we know it's not right.

Witch doctors probably laugh later. They could make people do anything. He could have said that I should crack a raw egg on my head and cluck like a chicken for 5 minutes.

Healing in this way requires 3 things, niat the intention of getting healed, doa HE is the real doctor, us'ha the action, can't get healed by sitting on one's butt. The action is the part that can be ridiculously taken advantage of.

retrospect

For every high there is a low. Definitely.

I think about my daughter, my wife, my son. My maybe short life. Even if I survive the operation will I have a long life? It is a malignant cancer after all.

What could have been. I wonder if my daughter will grow up safe and successful. What will she be like. Will she be happy? Whether my son will become the best that he can be. Whether my wife can handle the stress of raising 2 kids. Will she have a happier life? It weighs against me and I can't help but shed a little tear.

So many things I want to do, so little time. At least I should make a will.


http://www.birf.info/home/bi-tools/brainmap/qlinks_bramap.html

I saw the witch doctor and ...

This is another 'practitioner' known via my wife's friend.

Why not I thought. It wouldn't hurt. So we go to Kg Bakau. Meet the dude and he did a little procedure on me then do some blessing on some odd items we brought. But he added that there was some prohibitions. What? I was only expecting a 'procedure' and a thank you, bye bye. Now I have restrictions on food, no chicken,meat, apples, most fish, etc ...

This is like starving a hungry man. How the heck is a person who is now perpetually hungry going to survive on limited food choices!

There's also more. I'm supposed to wipe wet ground rice on my face with grass roots.

What can I say.

cool color vibrations

This event happened after seing the first wizard. I cannot insert a blog entry in blogspot so I will just say that this is back dated.

We hear from a relative his experience from a 'practitioner' in Penang. She explains to the wife what he's all about. Sounds witch doctory to me. I check out their web site which is some product site. They seem successful. Wonder how (I will soon know). Looks like heamotherapy to me.I have this feel that I'm gonna 'get' it (or get got). When we got there Dr Hambali greeted us. Did his magic thing with his spinning crystal pendulum. And said I was at level 3? My 'thing' had a frequency of 85 where 100 was bad. Great.

We bring some things to be blessed. Potatoes, lemons and water. He blessed them. This is the free part. Potatoes must be eaten before eating anything. Lemon is used to bathe. Water, one for drinking and one for bathing. Total course covers 7 days. Then bury the used lemons.

Then he comes out with more stuff. Rock salts, sugar tablets, a smelly herb extract and amino acids. He said something about complementary. OK. No ... not OK. After the instructions on using the stuff he pulls out the bill. Now I know how the product site pictures a big shop lot that it occupies. The 'gimmic' colour vibration therapy is to wang dangle the 'patient' then push the products. $344 bucks. I paid then left. This is the pull the cow by the nose syndrome. We are so used to seeing a doctor then get some pills and pay when we go. Such is conditioning even though we know.

Yeah I know.

CT scan at the hospital

It's time for another CT scan. One more concentrated on the tumor. The CT scan itself is nothing but I was getting anxious because of the contrast solution and also imagining the closeness of warding day. Imagining I will soon be warded and then be a vegetable being cooked on was scaring the hell out of me. CT time. The uncle in front of me had to change clothes. Fortunately I didn't have to and the great thing, no contrast solution.

I also take the chance to try to get some anticonvulsion medication so that I can drive. We manage to see one of the medical officers at the neuro clinic, The one I thought was Tinnesh, a Dr Sutharshan. I ask if I can get on anticonvulsion medication. He said that it was not a blanket medication. He asked whether I had convulsions. I said no. He also said that it had many side effects anyways, some not suitable for driving ie drowsiness and loss of muscle control, etc. So basically I'm stuck. Doing an internet search on anticonvulsion drugs shows all the drugs has bad side effects. Looks like I'm stuck.

the wizard with a title

So it's time to see Dato' Dr Hj Fadzli Cheah.

His PR is pretty good. A stark contrast to the receptionist and nurse who seems so disconnected and unfriendly. He greets us and ask about my symptoms and then do a physical checkup. Can I have a tune-up? He also mentioned that the right eye is slightly swollen due to the swelling in the brain pressing on the optic nerve.


We talk about my condition. I ask him about the seizures and he said yes it's possible but that it may also happen after the op. What? It's gonna be a permanent souvenir like the scar! That sucks soo bad. :(

He also explained the surgical procedure. But it was very short, basically open this take it out then the ENT cracks this and take that out. That's it. I know that but the crack part was new and it's the part with sthe mell nerve. I will have to ask Dr Cheang (my designated surgeon) about this. He did mention that it should not be difficult as the tumor is close to the front and won't be a deep excavation to get at it. This was reassurring.

Also during the consultation Dr Tinnesh came for something. Dr Fadzli asked him in and asked about my case. He asked if I knew him and I just said sure. But the wife said no this was not the guy we met at the hospital. I was in a blur. But I was surprised that there was a connection between the 2 hospitals. Dr Fadzli said that they have a relationship. I guess it's a small world for them. They quickly crossed the procedure in my case and Dr Fadzli agreed with the course that the public hospital is going. This was comforting to know.

I also asked about the gamma treatment. He also concurred that it was not suitable for me due to it's size. So this is the second blow to the procedure. He (I think) says that it shrinks it but that it may reoccur.

After some more exchanges we go because he had a meeting. I forgot to ask about anti convulsion medication. Oh well I get another scan on wednesday at the hospital so I will try there lah.

oh wizard from far far away, lend me your ears

Now I really need some advice about this gamma treatment. So I fire an email to Dr A overseas.

The bait is laid. Let's wait. Ring...ring... A bite! Man I love this guy. Takes the time to call me from overseas. Have to thank him personally when he comes in to KL.

I ask him whether the gamma treatment is suitable in my case. He says not really, it's good for intracranial tumors <3cm>3cm. It will shrink it but it may reoccur. Unless they can confidently say that they can do it. OK thanks Dr A.

a spanner in the works

Mr O has a friend, datuk K. He has a friend in singapore working in the tumor field. He says wait a minute there is a technology called Gamma Knife treatment that may help.

So I look it up. Its a a machine where beams of low dose gamma rays intersects at 1 singular point. This point becomes 'hot' (not temperature hot but radioactive hot). The technology is appealling. No surgery, short 'operation' time, basically walk in shoot for @2 hours then out the door. I guess depending on where the tumor is the patient may have to be observed for a day. But no surgery required. No nerve damage if it is not shot at.

But we are talking about going to singapore. Then there is the 'after sales service' ie the follow ups. The logistics, exchange rate, etc. After all it is a semi private clinic? Know what that means.

We manage to ask the staff at the Neuro Clinic at the hospital about the gamma treatment. He says there's one at sunway. He says it used to cost $75K now its $150. What the.

The once smooth course is now hampered by this new 'opportunity'. But is it the bullet for me?

http://www.drprempillay.com

I have resigned myself to the 5th at Ipoh, unless there is some divine intervention to change my course. All the nuerosurgions I have consulted recommends surgery as soon as possible so I am not going to delay this date. The tumor is growing and my greatest fear is that it will spread to the eyes. This would mean the removal of the eye(s) because you won't be able to radio the bugger without damaging the eye(s).

I fire an email to Dr Prem asking him what procedure is most suitable for my condition. He says the scans that I have now is not 'clear' enough. I will need a 3 tesla MRI scan available at his clinic. Of course. Scanning is a good thing but man it seems these clinics are creating any excuses to get you to use it. And pay for it. Oh well I'm on a very tight budget. The Singapore project will only be viable to me if someone pays for it.

I fire another email requesting cost of treatment. We see what happens. If it is to happen it has to be soon because I don't want to cancel the 5th unless something absolutely concrete happens. The procrastinator is now getting anxious as the long 'free' time is getting shorter and surgery is just around the corner. I can't stop thinking about the movie Awake.

sweets

On another note while I'm on steroids I better pump some weights, which is what I am doing. After all I'm practically perpetually hungry. I gained almost 10K so far. Also my theory is that when you excersise your body becomes damaged. That is the pain you feel when you have not worked out for some time. The body then heals itself and compensates for the type of excersise you did, ie for strength or stamina. You will notice that as you continue to excersise the pain disappears as the body becomes efficient at healing itself. In fact body builders work extra hard just to get that pain feeling again. So when I go to surgery the body should be at an efficient level to quickly heal from it. I just have to get fit to a level that will be the most optimal for recovery.

Not sure if it's the steroids or the tumor but my mouth tastes bitter. Just want sweets because I can slightly taste it. Bitter food becomes twice as bitter. Imagine plain water tastes like bile. Appetite but not the satisfaction of tasting it. Sucks.

the grass is greener ...

On the topic of Australia I still have residency. I think I still have Medicare. Dr Avatar says go for it. The perception is that the quality of the treatment would be better. Unfortunately the dislocation would be too much for me. Imagine I will have to settle the visa for my wife and daughter. My son cannot travel for another year. So he will be left behind. The money and exchange rate, costs. We will stay in someone else's home, in unfamiliar surroundings (even though I have lived there) it will still be unfamiliar as a family unit. When thinking about this surgery I want to keep the stable parts familiar and the disruptive part as small as possible (ie the operation). I certainly don't need the stress. I might die of the stress of moving overseas before the stress of the tumor. Keep the disruption to a minimum to reduce the stress.

the wizard from far far away

Ring ring... Hello, Hi I'm A O's brother. Cool, I get more info.

Dr A tells me that it is a cancer, probably from the nose to the brain and that the nasal composition and brain tumor should be the same. I asked whether this is a short life long treatment scenario. He evaded the question cheeky bugger. He basically recommends surgery as the solution. Well It has to be removed. He said that it will be a combined neuro and ENT effort, @6-7 hours. But added that I will require cranial reconstruction as well. Huh? Doctor Avatar hinted that there will be some nose smashing required to get at the nasal tumor. Also my sense of smell will go. (Later this is because of them breaking some parts unfortunately containing the smell nerve.) Man imagine no longer having the satisfaction and enjoyment of smelling your own fart. The smell of the world will be gone? 'A' says that it is a minor thing, huh, this worries me. Is there more complicated things? Side effects? I also ask if I could drive. He says there is a 5-10% chance of seizures. So no driving. Man that sucks. Driving is lifes greatest freedoms. I thank him lots and hang up. I hope he had one of those cheap overseas call things that is so numerous in Australia.

the wizard of oz 2

Dr Tinnesh I presume?

We were expecting Dr Tinnesh the door says Tinnesh so I assume he is Tinnesh (little did I know later it was not Tinnesh :) ) Anyways we see this guy and go over my symptoms. Not really much to describe as we brought our scans and we know it's a brain tumor. Now in hindsight they had never seen my scan but he was already talking about surgery. And booked me for the 5th of feb. I can't recall whether they took my scans and made an assessment when we came in. Maybe. Well that's it, it's going to be a brain operation. 5Th of Feb ... heh heh ... no worries, still a long ways away.

For the procrastinator this is like a long time with time to spare.

I felt like a factory item, walk in, short story, and out the door with some pills. Good pills. Steroids, memory enhancer and antacid. Man the steroids are good for physical reasons. Imagine eating pretty much non stop :) all day. Then the memory enhancer piracetam is supposed to enhance cognition and memory and more. See wikipedia on it. I think I'll try to wangle this thing even after surgery. The steroids would be too much to ask for after surgery :( .

The orderly suggests we get a second opinion. After all it is a major operation. He recommends a few (2 actually) but Dato' Dr Fadzli was the name that stuck. After all a Dato' must have achieved something, hopefully in his field not due to politics. Don't want a politician operating on me they might change my mind.

So we go to KPJ Ipoh to make an appointment with Dato' Dr Hj Fadzli Cheah. The customer service dude Ariffin was a very eager beaver. He was going on saying that the doctor was around just wait he should come around. I was reluctant as I had not prepared any questions. So eventually we settled for a next day appointment. Man another long drive. But we get a second opinion from a $50K doctor.

munchkins are like wizards too

So the much anticipated moment has arrived at the ENT to see the results of the biopsy results. It was my birthday coincidently. I was hoping for some good news. Alas I was told I had a growth considered level 4. I asked is there a level 5? Like a car can I have reverse? It was not to be. Apparently level 4 is very serious. Actually I can't remember what it was meant to mean. It didn't matter really. To me it was not a lymphoma, or a benign growth, it was the other. I just hope it's not a long stoy short life affair.

Looking at the biopsy report the words carcinoma and malignant were the words that stood out. The combination of the 2 is not good ie malignant cancer.
It was bad news alright. Dr Ali couldn't do any more and Dr Avatar expresses his sadness at giving bad news. He then disappears but later comes back saying that a surgical procedure was not recommended. That it may have a high morbidity incidence. He suggests chemo and radio as the solution. However he made an appointment with the neurosurgion clinic at Ipoh a Dr Tinnesh.

time to spread it through the grapevine

Better inform those waiting for me what's going on. So I informed my project managers that I had a headache for almost 2 months and couldn't do much work. And that the headache was due to a brain tumor.

As a coincidence my friend A called. Says what's up how I was etc. Told him I had a brain tumor. Such is life. I suggested a teh tarik, then he offered lunch? OK. Subway. We decided to bring some friends along, if they are available. Mr S and my project manager Z (known to both of us) was invited as well. So we had a few laughs, talked about my condition etc. It was good.

I also had lunch with my other project manager Mr O. Including old work mates. Showed them my pet tumor. Mr O then tells me that his brother is a neurosurgion in the UK. What's the chance of that. He said he will send my scans to his brother for comments. So I got to have a few laughs here as well. It's good to have friends. Oh Mr O thanks for the king prawn. It was nice. And L the 'help' was very handy. Still living off it.

Actually quite a few people extended help in one form or another. Thank you so much.

munchkins are cool too

So the long awaited meeting with the ENT arrives. To avoid any hard thinking on the doctors we came armed with the scans. We get in and explained some symptoms then straight to the point. Here's our scan and we need a biopsy. He then proceeded with spraying my nose with bitter crap. Thanks, at least he managed a hello before doing it. He suggests we see the neurosurgion at Ipoh. Huh? That's going to take an apointment and more delays. We mentioned that the neurosurgion at the private hospital referred us to an ENT to do the biopsy. So he went to consult his colleague. His colleague comes in and yes we should do it. Now. What? Now? The private hospital wants warding overnight. So I say when will I be warded? He says no warding as it will only take a minute. Now I feel some apprehension. He says kids take it ok and I say kids know nothing, they just take it. I was thinking of the pain that I will feel. So he gives me more aneasthetic. Here goes. I couldn't watch. I tell you it sure feels snug when stuff is shoved up your nose. One big sample and another smaller deeper sample. Done.

Actually that wasn't bad, sure saved me $4k.

As a reward the doctor gives pain killers df118 or something. He offered morphine :) but I kindly declined. Wonder if it would have been good to try. It's not everyday you get prescribed dope :).

He also said no nose picking as it might scratch the biopsy point and bleed possibly badly. Man that sucks cos I love picking my nose.

He then booked me for another day to discuss the biopsy results.

the wizard of oz 1

So today we get to see the wizard of oz. The wizard, Dr Muin Ishak, see the scans and say that we will get a better picture after doing an MRI scan (with contrast - contrast means injection). After the CT experience I was loath to having another IV.

I guess they wanted to cash in on some scanning as well.

Into the lions den anyways. I get into the MRI minus metallic stuff near my head. The machine whines and cracks. It's like a disco in here. Sometimes like someone is playing a video game. It was noisy. My belt buckle started to vibrate then my zip. Later out came the doctor for the contrast solution. This was going to suck but I got it via a normal injection. Man that was a relief. Then it was done.

Back at the docs. He suggests surgery to remove it as soon as possible. After some talking, which I can't remember, he says that the brain tumor extends to the nasal cavity. In this situation the tumor may be a lymphoma, glioblasma and one more I can't remember. The lymphoma can be treated using chemo and radio therapy whereas the other is benign and can be removed and forgotten. The glioblasma though will require removal and chemo and radio.

The only way was a biopsy. The surgeon says that if he were to get it then may as well do the surgery to remove it as the brain would have to be opened to get the sample why not remove it anyway. That was not reassuring. However since the tumor has an extension to the nose he refers me to the ENT (ear nose and throat).

The doc says that I may have a chance of seizures so no driving. Why not cuts my legs at the same time. Man driving is a pleasure and necessity. If I was rich I can get a driver.

Talking with my wife she mistakenly on a few occasions refer to biopsy as autopsy. I'M NOT DEAD YET!

The ENT sprays some bitter crap into my nose as a welcome. Thanks nice to meet you too. Talked about my symptoms then showed the scans. Yes there is a growth there or some giant boogey. So he says let me show you the growth. He shoves a camera up my nose and there it was quietly and peacefully sleeping in the corner of my nose. (But I know it's just a roost because it must be growing.) We say we need a biopsy to better decide on our next course of action. He says OK. We will do it painlessly. Ward you for a day and remove some of it. It will only cost @4K. Wow general aneasthetic and painless, cool.

He also cleaned my ears on the way.

I say I have an appointment with an ENT at the government hospital at taiping on thursday. He says OK. Else Monday we remove a sample of your tumor.

Bill: MRI+consultation $1200, ENT @$160 (got charged for cleaning the ears)

backstabbers

When tragedy befalls someone this is usually the time when some bastard stick out their nose and say yeah, they deserve this. They sinned against so and so, they did this they did that. Trying to earn some point or be smart somehow. They are so ignorant that they don't realise that it is a sin to behave this way and have this attitude. I pity these people.

I prefer a more positive view. I usually pray to be put on the righteous path. A path of devotion to god. But the the energy has never reached the point that I make the transition. Maybe this is the pill I needed (stimulated by prescription steroids :) ). Every soul a different pill...

start of the yellow brick road

My sisters and their husbands had a quick chat and suggested we go see our cousin who works at a clinic to get us into a place where we can get my head scanned. (The irony is that what I really needed was to get my head shrinked.)

Went to see the doctor ...blah blah blah.... she arranged us to see a neurologist at Kajang. OK. we go there and see Dr Soezyani, and I get a little check up. Brain tumor didn't seem the topic to appear. More like TB and others, vertigo? Time to face the CT scanner. I also get a chest x ray. The CT scan also included a contrast solution. This was done via an IV with a long needle. DAMN it burns when the needle goes in. Why not use a normal syringe damn it.


key: 3 = brain, 2 = tumor. :D

Only joking, 1 = swelling, 2 = brain, 3 = tumor

Now back at the docs. She shows us the scan and said "see that grey patch about a third of your brain?" That's my brain swelling. Dang, this clear evidence that I had something real and it was not imaginary and gonna go away. I felt relieved that there was something I can point at. Then the bad news, it was caused by a tumor. Yes that's right I had a tumor. Damn. She said she can't do anything and had to refer me to a neurosurgion. The nearest affiliated was at Ampang. So we go there. Got charged for the CT @$700. Man these private hospitals make you pay.

So the good witch suggests we see the wizard of oz.

Due to some miscomunication the neurosurgion had gone out. So we were out of luck and booked an appointment and left.

bomoh number 1

This guy was supposed to be able to do something. Anyways he gave me the usual which doctor thing. Rub my head then ask me to drink the blessed water. And out you go.

Next day same as usual. I guess there is no magic happening.

My sister was not happy and suggested that I get a scan.

visitors

Beep Beep. What's this sms. Oh it's my sister wanting to visit. Come on by. They come and introduce me to the new member of the family. Ask how I was and mentioned my headache. Then they go.

Beep Beep. Another sms this time from my other sister. They hear that I was not well so they came to visit. So I mentioned my headache. She mentioned something about scan. Can't remember now.

This part of the story is a little vague so I will skip the finer details.

I can't remember if kak Y came back to visit. I recall her husband talking about urut. At this point I was a little bed ridden and felt like the pressure points on my head was exascurbating my condition. I needed my neck 'cracked' like you wouldn't believe. But a head massage would be good.

So we all got together and went to batu 3.

the stray

When I got home things were as usual but the headache followed. I thought I was tired.

Next day take Milidon and hope for the best. Nope. The next, the next, the next ...

All I could do was try to sleep it off. Nope. The wifie thought I was just faking it. But it didn't go away. Dang. On 4-5 occasions I wake up in the early morning to vomit accompanied by a severe headache. It's time to go to the clinic. I go to clinic Thong. Explained the symptoms. The prognosis, vertigo. Here's some pills, gimme $30 and go. I recall the wife mentioning a scan but he didn't even acknowledge it as a good course of action. Dumb ass. Doctors are supposed to have an open mind to the possibilities. Now you have to know what's wrong with yourself and ask for them to sign the medicine. I told him I had a headache for over a month for god sake. I would've thought he would have enough of a brain to suggest something substansive rather than give a few pills for vertigo.

After 2 months my wife was fed up. Suggested I go to emergency. But I didn't think it was an emegency. Didn't know how to explain it as an emergency. So I refused. As a compromise I agreed to go to the government clinic. Explained the symptoms etc. He also thought that it was vertigo. This time I said that the headaches had been around for 2 months. He then referred me to the ENT clinic at the hospital. At least there is some progress. I vagely recall that he may have mentioned whether I wanted a scan. I may have said that it was not necessary. In hindsight I should have said yes. I think I was not open to the possibilities. I still thought that it was nothing and eventually it would go away. Also I should have listened to the wife and go to emergency. The day when I vomitted would have been good as it was like a migrain and the pain was excruciating. Man if I had a pistol...

We then tried to book an apointment with the ENT. Next free 3 weeks from now. What! Oh well what to do.

the tingle

I have to do a demo to my benefactors. The items I wanted to show wasn't finished so I worked on it all night just to show something that would satisfy what was wanted. The meeting was early morning around 9am, 10 most I assume.

I worked trying to get it working till early in the morning. I was hoping I will still have time to cover the journey from home to work. This is a 300km journey which is usually 5 hours or if I have a fast car and a good sleep I might be able to do in 3 and a half hours. Unfortunately this was not to happen. I finished around 8'ish. No way I was going to make it. But I had to go anyways even if I was going to be late.

Along the way my boss sms asking where I was. I had no phone credit to answer. The highway has few facilities for topping up mobiles and I didn't want to topup $10 at the petrol station, which was far and few anyway. So I just kept going.

Finally I get to the office at 3:45pm. 'Slightly' late :) . The door at the entrance was locked but this is just the door to gain access to the office. I then try calling the girl who should be in the office. No answer. After a few tries I blah lah. Went to the KL home which is pretty much empty. This is my pad when I need to go to KL.

I get some snacks to last me the night then watch TV. Next day I had nothing plan so I watched more TV and read the news. All the while lying on the back of my head. I was too lazy to go out and buy food but eventually had to. Starving and lack of water. Resting on the back of the head over an extended period of time tends to give you a headache. This I now have.

On friday I planned to go to the office but due to procrastination it eventually become to late. All the while my boss was calling. I wasn't too keen to face the music so I made myself invisible and watched TV. I also tried to do some work as well. By this time I had a headache. Lack of water and food I guess. Was too lazy to go out and buy some.

Next day I went home, 300km and 6 hours later I was back with the family.

looking for the smoking gun

This is just my suspicion. Mum's car has some rust here and there, in the boot and in and around the doors and top. This is typical of the Proton Megavalve to have this rust at the 'standard' places. I thought that I had better try to arrest the problem before pot holes become caves. Thus I started to get the enamel paint with rust proofing.

I did this for the inside of the boot. Since the boot is a little hard to reach and paint in the sides I thought I would get comfortable by lying in the boot. The fumes were 'fantastic'.

Then the doors and the top of the car, which I did from the inside of the car. The windows I recall was closed but the doors were open. The enclosed space was like a sauna of paint fumes. Oh well, what to do.

After a couples of hours my head was starting to feel the effects of the fumes. Now it's time to lay down as it had given me a headache. The headache lasted the next day and the next.

Man, don't think I'll do this again. Glad it's done.

Paint fumes are known to be a carcinogen. Is this the culprit?

the opening

This is my blog to friends and family wishing to know how I am progressing with my tumor. I will try to update as often as possible. Hopefully people might gain from my experience.