I had to see the dietition today and I was late, half an hour late. I was walking to the building, notice people walking out. I got to the office and it was empty. I guess diet is not a popular 'ailment'. So the receptionist say wait while I page the doc. So I wait for a while.
Then the doc came, Emily. Funnily I recognized her as one of the person walking out of the building when I was walking in. I guess she wasn't waiting a round for me. Fortunately no-one complained that I was late.
I got weighed, 68.2kg then off to the office.
She asks me what I was eating for a typical day, I say cereals or cheese on toast for breakfast, chicken or fish for lunch and dinner, etc. She explains a balanced which has the the food pyramid.
Then she explains the side effects of the treatment: problems swallowing, dry mouth, fatigue, nausia, hair loss, skin burns, etc. There wasn't much in terms of diet except that if one's mouth becomes dry, suck on ice chips. That's it.
My main concern was whether the radiation therapy would create a nutritional deficiency which will require supplements or a special diet. She says no. However if I happen to loose weight or appetite then it may be a necessity for using (protein) supplements.
Tuesday, December 15, 2009
Sunday, November 15, 2009
the man in the plastic mask
Friday, I get to test my mask and also a CT simulation (calibration?) with contrast.
When I walk in it occurred to me that the mask was a clear plastic thing. Unlike the fishnet. With holes for my eyes nostril and mouth. Must be costly => staff, time and materials.
It did felt better though. Fits like a glove, actually a mask.
Then the CT scan...with contrast. I just offered the right hand. It was clear but the doc said yeah it does look easy but there is an artery under that. Hmm didn't know that so he went for another spot. No matter, I'm not going to look. It hurts less and it did.
The scan was as usual but I notice that here the contrast is electronically controlled ie the syringe was hooked to another machine and injected via remote (machine) control. Didn't matter, still felt the same, the hot flush feeling.
After it was finished I had a briefing about the radio therapy, where it was, side effects, schedule, etc.
Then the canulla was removed and out I go till Dec 7.
When I walk in it occurred to me that the mask was a clear plastic thing. Unlike the fishnet. With holes for my eyes nostril and mouth. Must be costly => staff, time and materials.
It did felt better though. Fits like a glove, actually a mask.
Then the CT scan...with contrast. I just offered the right hand. It was clear but the doc said yeah it does look easy but there is an artery under that. Hmm didn't know that so he went for another spot. No matter, I'm not going to look. It hurts less and it did.
The scan was as usual but I notice that here the contrast is electronically controlled ie the syringe was hooked to another machine and injected via remote (machine) control. Didn't matter, still felt the same, the hot flush feeling.
After it was finished I had a briefing about the radio therapy, where it was, side effects, schedule, etc.
Then the canulla was removed and out I go till Dec 7.
gp
I needed a referral for claiming, so I go to see a GP, general practitioner ie a doc at a clinic, any clinic.
Dr Moussa, I ask for a referral, done, check my phenytoin ok go next door.
Next door, give blood, I must be getting used to it, seems to be less painful now. Done.
OK, go home.
Dr Moussa, I ask for a referral, done, check my phenytoin ok go next door.
Next door, give blood, I must be getting used to it, seems to be less painful now. Done.
OK, go home.
radio goo goo, radio gaa gaa
It's the radio appointment. I had a list of things to ask. I thought I had stuff to ask but I couldn't think of anything much. Strange.
We see Dr Melanie, not Dr Kuan.
My questions:
1) progression of symptoms if no treatment
Not really answered, blind right eye, tumor => not sure as the swelling may cause other areas of the brain to do unknown things, stroke, coma, hand coordination, etc
2) how effective radio
Not really answer, the radio may increase the size of the target area ie swell before shrinking and may be stopping it from growing.
3) side effects/risks
89% blind in right eye, 49% in left. The vision will not be black but possible just a massive blur. U can c light and dark but thats it. Skin burn, hair loss, and lots more.
"The risk may not be that important assuming you survive that long." Straight from the horse's mouth (but not in those exact words).
4) how long treatment
2 weeks on, 2 weeks off, 2 weeks on
5) when start
dec 7th
6) biopsy results
not available yet
7) imrt
yes but will not make much difference in my case.
Eventually Dr Kuan comes in for 2 minutes then out. I managed to ask 1-2 questions then he was gone. ???
While I was here I also had a face scan. This is to create a mask. Strange I thought as in KL I had the melted fish net pulled over my face. Here I need a face mask?
The laser scan is used to create a plaster model of my face.
It didn't take long but I had to remove my 'beard'. Convenient, I was in need of it.
We see Dr Melanie, not Dr Kuan.
My questions:
1) progression of symptoms if no treatment
Not really answered, blind right eye, tumor => not sure as the swelling may cause other areas of the brain to do unknown things, stroke, coma, hand coordination, etc
2) how effective radio
Not really answer, the radio may increase the size of the target area ie swell before shrinking and may be stopping it from growing.
3) side effects/risks
89% blind in right eye, 49% in left. The vision will not be black but possible just a massive blur. U can c light and dark but thats it. Skin burn, hair loss, and lots more.
"The risk may not be that important assuming you survive that long." Straight from the horse's mouth (but not in those exact words).
4) how long treatment
2 weeks on, 2 weeks off, 2 weeks on
5) when start
dec 7th
6) biopsy results
not available yet
7) imrt
yes but will not make much difference in my case.
Eventually Dr Kuan comes in for 2 minutes then out. I managed to ask 1-2 questions then he was gone. ???
While I was here I also had a face scan. This is to create a mask. Strange I thought as in KL I had the melted fish net pulled over my face. Here I need a face mask?
The laser scan is used to create a plaster model of my face.
It didn't take long but I had to remove my 'beard'. Convenient, I was in need of it.
Thursday, November 5, 2009
ultrasound guided biopsy
This is where an ultrasound machine is used to guide a needle to a spot in your body to collect a tissue sample.
This appointment was at nine. I had to wake up really early for this and catch the city bus. Eventually I was 5 minutes late but fortunately no one complained. I had to wear a prison garb but I could keep my pants. I laid on the bed and a the doctor (Dr John) gave a run through of the lymph node. I see this black 'bubble'. Seems pretty big to me. That was it. He mentions that it may not be cancerous, possibly just a growth. Then he washed my neck with alcohol. I couldn't smell it but the fumes caught my nose. Yes this definitely was alcohol. Then an operating paper cover with a hole over the treatment area. Next the needle. "You feel a prick then a sting like a bee." Yep that was what I got. The second shot wasn't very noticeable. Wonder if there was even a third? That was it, a short wait then it was time. The pathology department also came along to make sure there was sufficient samples. This is to avoid a repeat if some sample(s) was missing. Next I feel a lean on my neck where the ultrasound was being placed. I was facing the ultrasound screen so I can see what was happening. Next thing I know I can see a needle poking into the black spot. Lucky I couldn't feel it but yes there is a needle poking into my neck. He repeated the sampling multiple times, in total probably around 10 times. Each at various places, the middle, the 'skin' of the lymph node, here, there. The last 2 samples I felt a little ache. I was wondering if the anesthetic was wearing off. Hope that was it. I always thought that the biopsy would be a poke then a pincher to take a sample. What I saw was no such thing. The doctor was jiggling the needle like he was making coffee. May as well put a blender in there, why not. Wonder if it's gonna do anything bad.
Then it was over. Thank god. I then had to wait 20 minutes.
After 20 minutes the nurse asks the doctor to check. The doctor says it may bruise, if there is pain take paracetamol and if there is major swelling, see a doctor. Thanks.
I go and wonder. If this growth is not cancer then metastasis has not occurred and the major surgery may again be possibly curative. Which means I may have the choice of doing it. Not sure whether that is a good thing. If it is cancerous, then the operation would be off and radio in. But it would mean my time would be numbered. The doc said results early next week. I wait and see.
Later in the day I had to finalise my unemployment benefits. Hope I get it. I need the money.
This appointment was at nine. I had to wake up really early for this and catch the city bus. Eventually I was 5 minutes late but fortunately no one complained. I had to wear a prison garb but I could keep my pants. I laid on the bed and a the doctor (Dr John) gave a run through of the lymph node. I see this black 'bubble'. Seems pretty big to me. That was it. He mentions that it may not be cancerous, possibly just a growth. Then he washed my neck with alcohol. I couldn't smell it but the fumes caught my nose. Yes this definitely was alcohol. Then an operating paper cover with a hole over the treatment area. Next the needle. "You feel a prick then a sting like a bee." Yep that was what I got. The second shot wasn't very noticeable. Wonder if there was even a third? That was it, a short wait then it was time. The pathology department also came along to make sure there was sufficient samples. This is to avoid a repeat if some sample(s) was missing. Next I feel a lean on my neck where the ultrasound was being placed. I was facing the ultrasound screen so I can see what was happening. Next thing I know I can see a needle poking into the black spot. Lucky I couldn't feel it but yes there is a needle poking into my neck. He repeated the sampling multiple times, in total probably around 10 times. Each at various places, the middle, the 'skin' of the lymph node, here, there. The last 2 samples I felt a little ache. I was wondering if the anesthetic was wearing off. Hope that was it. I always thought that the biopsy would be a poke then a pincher to take a sample. What I saw was no such thing. The doctor was jiggling the needle like he was making coffee. May as well put a blender in there, why not. Wonder if it's gonna do anything bad.
Then it was over. Thank god. I then had to wait 20 minutes.
After 20 minutes the nurse asks the doctor to check. The doctor says it may bruise, if there is pain take paracetamol and if there is major swelling, see a doctor. Thanks.
I go and wonder. If this growth is not cancer then metastasis has not occurred and the major surgery may again be possibly curative. Which means I may have the choice of doing it. Not sure whether that is a good thing. If it is cancerous, then the operation would be off and radio in. But it would mean my time would be numbered. The doc said results early next week. I wait and see.
Later in the day I had to finalise my unemployment benefits. Hope I get it. I need the money.
Wednesday, November 4, 2009
futility
Today is my field of vision test. Its a test where you have to look into a ball and press a button when a light flashes anywhere inside the ball. This will determine if you have any black spots. Apparently mine was normal the same as when I did it in Ipoh.
After this test was a visit to Dr Grey, the ENT. He basically said that the cancer has spread and it is not a good sign. Bad as a matter of fact. He looked in the nose like all ENT docs do. He mentioned that a previous patient had a similar procedure was older and slightly smaller problem, was in hospital for 10 days followed by after care hospital care for 2 months. And added that Prof Knuckey wanted to see me.
The prof comes. He says the cancer has spread. It's not good. This means that the radical (major) surgery will not be curative but palliative. ??? What's palliative? Well in short this means that surgery is pointless because you're gonna die anyway. The surgical team once realising the spread had felt lukewarm to the idea of surgery for the same reason. He added that they only considered surgery because of my relatively young age, if I was older they would not have considered surgery at all. He said the options was radio, surgery and nothing. I ask chemo? He said during the meetings only the radio team offered, the chemo surrendered (I guess). I then realise that it would only be a matter of time before I will be buried. I ask what will happen next, coma? He said the right eye is infected and I will probably go blind first then possibly a coma. I also weigh the options. A major surgery will not give me much in terms of life expectancy and it will be drastic. I mean drastic. Should I bother with the surgery?
In the end I opted for the radio. After all if I am to die may as well have all my parts and go down in one piece. This does mean that my life expectancy will be measured in the near term.
Monday I am to see the radio guy. I definitely have questions for him. Life expectancy and expected outcomes are the foremost. The the expected symptoms if things go bad.
After this test was a visit to Dr Grey, the ENT. He basically said that the cancer has spread and it is not a good sign. Bad as a matter of fact. He looked in the nose like all ENT docs do. He mentioned that a previous patient had a similar procedure was older and slightly smaller problem, was in hospital for 10 days followed by after care hospital care for 2 months. And added that Prof Knuckey wanted to see me.
The prof comes. He says the cancer has spread. It's not good. This means that the radical (major) surgery will not be curative but palliative. ??? What's palliative? Well in short this means that surgery is pointless because you're gonna die anyway. The surgical team once realising the spread had felt lukewarm to the idea of surgery for the same reason. He added that they only considered surgery because of my relatively young age, if I was older they would not have considered surgery at all. He said the options was radio, surgery and nothing. I ask chemo? He said during the meetings only the radio team offered, the chemo surrendered (I guess). I then realise that it would only be a matter of time before I will be buried. I ask what will happen next, coma? He said the right eye is infected and I will probably go blind first then possibly a coma. I also weigh the options. A major surgery will not give me much in terms of life expectancy and it will be drastic. I mean drastic. Should I bother with the surgery?
In the end I opted for the radio. After all if I am to die may as well have all my parts and go down in one piece. This does mean that my life expectancy will be measured in the near term.
Monday I am to see the radio guy. I definitely have questions for him. Life expectancy and expected outcomes are the foremost. The the expected symptoms if things go bad.
Tuesday, November 3, 2009
metastasis
Metastasis - when cancer starts spreading.
Today is my appointment with Prof Knuckey. My belief is to discuss the growth in my lymph node.
While waiting another doctor ask the prof if he can take the file, which happens to be mine. So I see this doctor. There wasn't much to say. Basically there was growth in my lymph node but the latest scans did not show any growth in my body. This is significant as the cancer has broken its confinement and is now mobile. It sucks to be me. They want to take a biopsy and to determine the after care required after the operation. I mention ultrasound. He added ultrasound guided ie I'm gonna get a needle.
I also ask whether the bone under the eye brows will go and yes was the answer. The eye doctor said he would not cut the eye orb but this doctor added that there will be some level of ad hoc ness involved during the operation that may change what they will do. The radio therapy group will also determine the after care but cannot determine what until after the operation.
The growth in my neck will be handled possibly by non surgical means but depends on the results of the biopsy.
I mention that I will lose feeling on the right side of my face, this was new, will there be other side effects. Seizures, mental problem. He says, maybe. Seizures possbly but usually in the first few weeks after surgery. Mental problems possibly behaviour and short term memory.
Today is my appointment with Prof Knuckey. My belief is to discuss the growth in my lymph node.
While waiting another doctor ask the prof if he can take the file, which happens to be mine. So I see this doctor. There wasn't much to say. Basically there was growth in my lymph node but the latest scans did not show any growth in my body. This is significant as the cancer has broken its confinement and is now mobile. It sucks to be me. They want to take a biopsy and to determine the after care required after the operation. I mention ultrasound. He added ultrasound guided ie I'm gonna get a needle.
I also ask whether the bone under the eye brows will go and yes was the answer. The eye doctor said he would not cut the eye orb but this doctor added that there will be some level of ad hoc ness involved during the operation that may change what they will do. The radio therapy group will also determine the after care but cannot determine what until after the operation.
The growth in my neck will be handled possibly by non surgical means but depends on the results of the biopsy.
I mention that I will lose feeling on the right side of my face, this was new, will there be other side effects. Seizures, mental problem. He says, maybe. Seizures possbly but usually in the first few weeks after surgery. Mental problems possibly behaviour and short term memory.
Monday, November 2, 2009
update
Today is my appointment with Prof Knuckey. My belief is to discuss the growth in my lymph node.
While waiting another doctor ask the prof if he can take the file, which happens to be mine. So I see this doctor. There wasn't much to say. Basically there was growth in my lymph node but the latest scans did not show any growth in my body. This is significant as the cancer has broken its confinement and is now mobile. They want to take a biopsy and to determine the after care required after the operation. I mention ultrasound. He added ultrasound guided ie I'm gonna get a needle.
I also ask whether the bone under the eye brows will go and yes was the answer. The eye doctor said he would not cut the eye orb but this doctor added that there will be some level of ad hoc ness involved during the operation that may change what they will do. The radio therapy group will also determine the after care but cannot determine what until after the operation.
The growth in my neck will be done possible by non surgical means but depends on the results of the biopsy.
While waiting another doctor ask the prof if he can take the file, which happens to be mine. So I see this doctor. There wasn't much to say. Basically there was growth in my lymph node but the latest scans did not show any growth in my body. This is significant as the cancer has broken its confinement and is now mobile. They want to take a biopsy and to determine the after care required after the operation. I mention ultrasound. He added ultrasound guided ie I'm gonna get a needle.
I also ask whether the bone under the eye brows will go and yes was the answer. The eye doctor said he would not cut the eye orb but this doctor added that there will be some level of ad hoc ness involved during the operation that may change what they will do. The radio therapy group will also determine the after care but cannot determine what until after the operation.
The growth in my neck will be done possible by non surgical means but depends on the results of the biopsy.
Saturday, October 31, 2009
steroid junky
The steroids are now kicking in full time. I am constantly hungry. Even when I am full and cannot fit anything more in my stomach I want to shove more in. I am basically now living in the kitchen. The pimples are starting to regrow and also a little fuzzy beard. Oh well I get to gain weight but loose it in hospital. Sucks to be me.
All this food is making me fart like crazy. The problem is that I cannot smell whether it smells. I have to drop it somewhere 'quiet' :) .
The additional anti seizure drugs are making me feel lethargic. Don't know why they recommend it, it should only be used when a seizure has occurred.
All this food is making me fart like crazy. The problem is that I cannot smell whether it smells. I have to drop it somewhere 'quiet' :) .
The additional anti seizure drugs are making me feel lethargic. Don't know why they recommend it, it should only be used when a seizure has occurred.
a bit of luck
Today I am going to the supermarket (which is 600m from home) to look for shark cartilage. This is what someone was supplementing themselves to aid in their cancer treatment. My brother in law also had this with the intention of giving it to me but left it overseas.
So I go and look around, nothing. The directory also showed no signs of a health shop. What a disappointment. It was too late to go to the city. Bummer. I was hoping to get something so that at least I have time to try anything before the last scan on the 10th before the operation on the 11th. On the way back I was looking for a chemist but what do you know an undocumented health store. Cool.
While looking through the seeds I found apricot seeds. $3.95 for 0.5kg. WTF. So I bought a kilo. Unbelievable. What's the chances of that. So I leave with 2 bags of seeds and shark cartilage, and my wife added some stuff for her as well. Everything on the credit card. Man my debts are ballooning!
$8 for a kilo of seeds, whereas I had placed an order online for $35 for a kilo of apricot (kernels). I hope I didn't get scammed. We will see. At least I have some seeds in the mean time and can get more close to home.
Whatever happens of the cancer is reduced before the last scan I will be ecstatic. It would be a miracle else I will be a leper.
So I go and look around, nothing. The directory also showed no signs of a health shop. What a disappointment. It was too late to go to the city. Bummer. I was hoping to get something so that at least I have time to try anything before the last scan on the 10th before the operation on the 11th. On the way back I was looking for a chemist but what do you know an undocumented health store. Cool.
While looking through the seeds I found apricot seeds. $3.95 for 0.5kg. WTF. So I bought a kilo. Unbelievable. What's the chances of that. So I leave with 2 bags of seeds and shark cartilage, and my wife added some stuff for her as well. Everything on the credit card. Man my debts are ballooning!
$8 for a kilo of seeds, whereas I had placed an order online for $35 for a kilo of apricot (kernels). I hope I didn't get scammed. We will see. At least I have some seeds in the mean time and can get more close to home.
Whatever happens of the cancer is reduced before the last scan I will be ecstatic. It would be a miracle else I will be a leper.
Friday, October 30, 2009
tumors are not cute
as a colleague recently noted, my tumor is not cute anymore. It's an evil creature eating me alive!
Thursday, October 29, 2009
an eye for an eye
Today I get my eye checked. Dr Gajdatsy, how's that for name. Tall bugger too.
So I see him and he says basically the right eye will be sacrificed, gone in layman's terms. The socket will be reamed till uninfected bone is reached. There is also a side effect of this cleaning. The facial nerve goes through the top and bottom of the eye socket meaning the right side of my forehead and right side of my face will be numb. No feeling. I wont even feel the right side of my lip. Can you imagine drinking but not feeling the cup on your lip. The mouth may also be affected, possibly the tongue and taste.
He said he will be the one removing the eye.
Along the way he adds the pain in the eye drops. And checks my eyes. Then another doctors check my eyes as well for other things. It was uncomfortable but better to do it.
Later I ask what will happen to the eye. He said it's infected so it cannot be reused, rather it will become someone's lab specimen. The eye may have a muscle flap which will create a flat eye surface depending on what the plastic team chooses.
I will also need to do a peripheral perception test. Basically to see if I have any blackspots in my vision.
I also had a number of calls from the doctor to make appointments. One was to see professor Knuckey to discuss the additional growth in my thyroid, another was to do an ultrasound biopsy, and the other was the peripheral test. I also have to remind myself to see a GP to check my phenytoin levels. Don't really like this drug makes me weak and drowsy.
So I see him and he says basically the right eye will be sacrificed, gone in layman's terms. The socket will be reamed till uninfected bone is reached. There is also a side effect of this cleaning. The facial nerve goes through the top and bottom of the eye socket meaning the right side of my forehead and right side of my face will be numb. No feeling. I wont even feel the right side of my lip. Can you imagine drinking but not feeling the cup on your lip. The mouth may also be affected, possibly the tongue and taste.
He said he will be the one removing the eye.
Along the way he adds the pain in the eye drops. And checks my eyes. Then another doctors check my eyes as well for other things. It was uncomfortable but better to do it.
Later I ask what will happen to the eye. He said it's infected so it cannot be reused, rather it will become someone's lab specimen. The eye may have a muscle flap which will create a flat eye surface depending on what the plastic team chooses.
I will also need to do a peripheral perception test. Basically to see if I have any blackspots in my vision.
I also had a number of calls from the doctor to make appointments. One was to see professor Knuckey to discuss the additional growth in my thyroid, another was to do an ultrasound biopsy, and the other was the peripheral test. I also have to remind myself to see a GP to check my phenytoin levels. Don't really like this drug makes me weak and drowsy.
Wednesday, October 28, 2009
not dead enough
Today I am visited by a voodoo priest. He basically mentioned what I have heard before but this time something seemed to make sense. God gave us a perfect body but the devil corrupts it. And continue to corrupt it at every chance. So in order to heal one must insert some 'ayat' of goodness so the devil can't stay or enter. Thus I am given the usual magic water, black seed oil and stuff. I take it, nothing to loose.
The next day I contemplate having a peaceful day at home. Ring...Ring... this is doctor mumtaz. I'm handling your case. The radiologist noticed a blob around your neck. ! This is not good. You'll need to have your body scanned to see if the cancer have spread. This will affect your treatment.
Shit. How dead can I get. I don't think I will win this.
So I go back to the hospital to get a referral at another clinic to do the scan. I get the usual contrast, isoview or something, feel the glow, and that's it. I hope it doesn't show more spread. If so how many surgeons can I call up in an operation.
The next day I contemplate having a peaceful day at home. Ring...Ring... this is doctor mumtaz. I'm handling your case. The radiologist noticed a blob around your neck. ! This is not good. You'll need to have your body scanned to see if the cancer have spread. This will affect your treatment.
Shit. How dead can I get. I don't think I will win this.
So I go back to the hospital to get a referral at another clinic to do the scan. I get the usual contrast, isoview or something, feel the glow, and that's it. I hope it doesn't show more spread. If so how many surgeons can I call up in an operation.
Monday, October 26, 2009
the titanic still sunk
As expected the 'group' comes in. A big group of doctors lead by the neuro team. Maybe they were the neuro team. He says 'howa ya' (how are you in english). I say ok. "I hear you can go home today". News to me. Your surgery is on the 11 nov. So I don't need to answer the question. You can do the eye test as an outpatient and another MRI when you check again on the 10th.
That's it then. No turning back. If ever I am to beat this thing it will have to be before the 10th, before the MRI.
Later around 11 I say goodbye to the other inmates and was discharged. I have to see the eye doc on Thursday and get check my Phenytoin levels at a GP and check in on the 10th for and MRI. If any miracles were to happen it would have to be before the next MRI. This is the time for voodoo, herbs, diet, anything.
That's it then. No turning back. If ever I am to beat this thing it will have to be before the 10th, before the MRI.
Later around 11 I say goodbye to the other inmates and was discharged. I have to see the eye doc on Thursday and get check my Phenytoin levels at a GP and check in on the 10th for and MRI. If any miracles were to happen it would have to be before the next MRI. This is the time for voodoo, herbs, diet, anything.
Sunday, October 25, 2009
low viscoscity
The day rolls on. I'm thinking I will get the reaper today but no. Maybe tomorrow.
This is the day the peeps have a meeting on my case. Thus I expect some visitors. First to come is the plastic group. They basically say they can do stuff depending on the mess that is there. They mention the hole that is going to be there and the ways they can fix it up. The hole can be covered by muscle and some bone can be attached as well. The bone may come from the rib or my hip. The muscle from my stomach. I may look like a leper after the surgery and I may require additional surgery. I was thinking that if I go blind, what difference will it make, I won't see it and I won't see people seeing it. But unfortunately my wife will.
Next a cancer nurse/coordinator. She can help bridge the gap between doctor and patient so if you don't understand something or need more info then she can help organise something. Kinda a good thing.
Later a social worker visits regarding my benefits. "You from malaysia?" "Yeah" "I'm from Malaysia". Unbelievable. Quite a number of Malaysians here. We had a talk about my circumstance and suggest what is available. I should go on jobseeker benefits but with jobseeking exemption because I am in hospital. The wife can go on parenting allowance. I mention that I need to call the employment department and have an interview. She says ok, let me check with the other girl. She comes back and tells me I have to call the number and have the interview, they can follow up later. I say I have no money to make the call then she made arrangements to call the department. Ring ring. I gets the call and have the interview. As I expect the usual background checks, asset checks employment checks. Then please go to your nearest Department and have another interview. Lucky they made the call otherwise it would have cost a monster on my mobile, $1 per minute almost and it took over 40 minutes.
I notice my pimples are re-emerging... everywhere.
Then a long wait.
I may move to another ward. At 2pm I move to a 4 bed room. It was little awkward as I was alone now I am among strangers. The initial 'hi' was a little hard to fork out but eventually it happened. The ice is broken.
The nurse then came to take me to the eye clinic to get a perception test. When I got there they say next month. ??? I could be blind next month. Oh well never mind. Later the nurse say thursday.
I was thinking the ENT may come in but later Prof K comes in, the neuro dude. He explains what they are going to do. Cut temple to temple, open the old hatch, remove the brain...oops...tumor. The eye doctor will remove the eye. The ENT will scrape the nasal and remove the stuff behind the nose including bone. The area behind the left eye will also be worked on and may impact on the optic nerve. If the surgery does not blind me the radio therapy after it will.
There you can see the nasty cancer. You see the brain tumor, bigger than before and the mess around my nose into the right eye. This is a radical major operation involving multiple groups. It will take the whole day @10 hours. The risks is therefore higher, 20%. Also the usual risk, brain swelling, infection, bleeding and stroke. My dura will also have a hole and my brain covered by skin. This is BAD. My brain will be susceptible to infection and with the amount of wreckage that they are going to create, I fear that infection may be a complication I may not escape.
I have to make a decision by tomorrow. I dunno. I am too tired to think about. It's like being on the Titanic, no matter where you run the ship is gonna sink. So what do you do, jump in the water, look for a floating wooden door (and kick Rose off) or try the lifeboat. But not all the life boats were rescued, 1 or 2 got lost and all the occupants died before rescue. So better I just do it and get on with thinking about something else.
This is the day the peeps have a meeting on my case. Thus I expect some visitors. First to come is the plastic group. They basically say they can do stuff depending on the mess that is there. They mention the hole that is going to be there and the ways they can fix it up. The hole can be covered by muscle and some bone can be attached as well. The bone may come from the rib or my hip. The muscle from my stomach. I may look like a leper after the surgery and I may require additional surgery. I was thinking that if I go blind, what difference will it make, I won't see it and I won't see people seeing it. But unfortunately my wife will.
Next a cancer nurse/coordinator. She can help bridge the gap between doctor and patient so if you don't understand something or need more info then she can help organise something. Kinda a good thing.
Later a social worker visits regarding my benefits. "You from malaysia?" "Yeah" "I'm from Malaysia". Unbelievable. Quite a number of Malaysians here. We had a talk about my circumstance and suggest what is available. I should go on jobseeker benefits but with jobseeking exemption because I am in hospital. The wife can go on parenting allowance. I mention that I need to call the employment department and have an interview. She says ok, let me check with the other girl. She comes back and tells me I have to call the number and have the interview, they can follow up later. I say I have no money to make the call then she made arrangements to call the department. Ring ring. I gets the call and have the interview. As I expect the usual background checks, asset checks employment checks. Then please go to your nearest Department and have another interview. Lucky they made the call otherwise it would have cost a monster on my mobile, $1 per minute almost and it took over 40 minutes.
I notice my pimples are re-emerging... everywhere.
Then a long wait.
I may move to another ward. At 2pm I move to a 4 bed room. It was little awkward as I was alone now I am among strangers. The initial 'hi' was a little hard to fork out but eventually it happened. The ice is broken.
The nurse then came to take me to the eye clinic to get a perception test. When I got there they say next month. ??? I could be blind next month. Oh well never mind. Later the nurse say thursday.
I was thinking the ENT may come in but later Prof K comes in, the neuro dude. He explains what they are going to do. Cut temple to temple, open the old hatch, remove the brain...oops...tumor. The eye doctor will remove the eye. The ENT will scrape the nasal and remove the stuff behind the nose including bone. The area behind the left eye will also be worked on and may impact on the optic nerve. If the surgery does not blind me the radio therapy after it will.
There you can see the nasty cancer. You see the brain tumor, bigger than before and the mess around my nose into the right eye. This is a radical major operation involving multiple groups. It will take the whole day @10 hours. The risks is therefore higher, 20%. Also the usual risk, brain swelling, infection, bleeding and stroke. My dura will also have a hole and my brain covered by skin. This is BAD. My brain will be susceptible to infection and with the amount of wreckage that they are going to create, I fear that infection may be a complication I may not escape.
I have to make a decision by tomorrow. I dunno. I am too tired to think about. It's like being on the Titanic, no matter where you run the ship is gonna sink. So what do you do, jump in the water, look for a floating wooden door (and kick Rose off) or try the lifeboat. But not all the life boats were rescued, 1 or 2 got lost and all the occupants died before rescue. So better I just do it and get on with thinking about something else.
Friday, October 23, 2009
creep
I'm very sleepy this morning. Don't know why.
I am greeted by a blood reaper. I knew it was time. Never mind. I just let it happen. It seemed to hurt less.
I also a had feeling the neuro team would come in. Sure enough. A group of three. I had some questions but only managed to fire 1, "what's the surgical procedure?". Cut temple to temple, lift out the old hatch, scoop out the tumor or what can be scooped. The ENT will cut some more into the orbit and probably to the bridge of the nose, removing the bone and the right eye. So I will have no bone there. I will never soccer a ball again with my head. The left eye may go as they fudge around the left side. Will my smelling nerves be detached?
I feel more giddy now, maybe it's the stay maybe it's the tumor.
So now I am pondering. The future, the options. I would really like to know whats going to happen around my nose. Can I go on alternative medicine? What I would really like is to preserve my sight on the left eye and then try alternative, chemo and radio. Do I have these options?
Some time during the day the nurse comes in and we chat a little. He asks what I would like to do before the operation. I think, good question. I have thought about this before but not come to an answer. Drive, I've driven all my life, see the blue mountains the beach. So I think, finally I cam to an answer, movies. So tomorrow I will take day leave and see the surrogates. I will miss movies.
Later during the day my wife comes in some friends and relatives. It's good to have visitors they change your focus for a while.
I ugly thing that happened was that while I was talking my father was staring at me like I was a madman. I hate people looking at me like this, I felt like giving him a slap.
I am greeted by a blood reaper. I knew it was time. Never mind. I just let it happen. It seemed to hurt less.
I also a had feeling the neuro team would come in. Sure enough. A group of three. I had some questions but only managed to fire 1, "what's the surgical procedure?". Cut temple to temple, lift out the old hatch, scoop out the tumor or what can be scooped. The ENT will cut some more into the orbit and probably to the bridge of the nose, removing the bone and the right eye. So I will have no bone there. I will never soccer a ball again with my head. The left eye may go as they fudge around the left side. Will my smelling nerves be detached?
I feel more giddy now, maybe it's the stay maybe it's the tumor.
So now I am pondering. The future, the options. I would really like to know whats going to happen around my nose. Can I go on alternative medicine? What I would really like is to preserve my sight on the left eye and then try alternative, chemo and radio. Do I have these options?
Some time during the day the nurse comes in and we chat a little. He asks what I would like to do before the operation. I think, good question. I have thought about this before but not come to an answer. Drive, I've driven all my life, see the blue mountains the beach. So I think, finally I cam to an answer, movies. So tomorrow I will take day leave and see the surrogates. I will miss movies.
Later during the day my wife comes in some friends and relatives. It's good to have visitors they change your focus for a while.
I ugly thing that happened was that while I was talking my father was staring at me like I was a madman. I hate people looking at me like this, I felt like giving him a slap.
Thursday, October 22, 2009
a week goes by fast
it's friday.
The nurse comes in, it's like a different nurse a day, and introduced himself. OK. He mentions that I may have an eye test. OK. Nothing interesting.
Next the Neuro team comes in, say how you, well. ??? well what? Operate? ???
Is there some parallax error here. I don't know what's up and he's talking about acceptance. I was dumb founded. He then said they'll come in later and ask again. Think about it, talk to your wife. Then gone.
The wife came in, early. Spent the day. Talk about plans and contingencies etc, the day to day and future. She mentions going to the movies. I then wonder if I can get half price if I were blind seeing as I will not see the movie but hear the sound. :)
My loss of smell also concerns me. I have an after smell and taste of citrus but I cannot smell anything else. The taste and smell is constant in my mouth and nose. I don't know what it is. All I know is that I cannot smell. My stomach is constantly grumbling, maybe due to the steroids, so I am passing gas constantly. I worry that it smells like a toilet in this room and not know it. If I fart in my bed will the nurse smell it when they check me? :(
The nurse comes in, it's like a different nurse a day, and introduced himself. OK. He mentions that I may have an eye test. OK. Nothing interesting.
Next the Neuro team comes in, say how you, well. ??? well what? Operate? ???
Is there some parallax error here. I don't know what's up and he's talking about acceptance. I was dumb founded. He then said they'll come in later and ask again. Think about it, talk to your wife. Then gone.
The wife came in, early. Spent the day. Talk about plans and contingencies etc, the day to day and future. She mentions going to the movies. I then wonder if I can get half price if I were blind seeing as I will not see the movie but hear the sound. :)
My loss of smell also concerns me. I have an after smell and taste of citrus but I cannot smell anything else. The taste and smell is constant in my mouth and nose. I don't know what it is. All I know is that I cannot smell. My stomach is constantly grumbling, maybe due to the steroids, so I am passing gas constantly. I worry that it smells like a toilet in this room and not know it. If I fart in my bed will the nurse smell it when they check me? :(
Wednesday, October 21, 2009
low...so low it's cold
thursday (already)
No blood reaper. That's good.
Neuro comes in, hello then say how big our party is. He mentions that they are working on it and I will have to decide whether to operate when it is time.
A social worker also came in to see what they could do. Mentioned a social 'club' ie some social activity at the hospital like play games, exercise, etc. She also mentions social security help, I said no but later would like to know if there was anything that can help. Hope she can send someone who knows. I am penniless and could do with some handouts.
Later she came and mentioned the main,,,
No blood reaper. That's good.
Neuro comes in, hello then say how big our party is. He mentions that they are working on it and I will have to decide whether to operate when it is time.
A social worker also came in to see what they could do. Mentioned a social 'club' ie some social activity at the hospital like play games, exercise, etc. She also mentions social security help, I said no but later would like to know if there was anything that can help. Hope she can send someone who knows. I am penniless and could do with some handouts.
Later she came and mentioned the main,,,
kick in the guts
Today, wednesday 21 oct 2009 at SCGH. This is what the nurse asks when they check you, just in case you're dead and think you're in heaven....hell?
So what greets me this morning? The blood reaper! Mother! I was just bled yesterday. It's like nurturing a pet vampire. Let's see what happens tomorrow.
Today the doc comes in and say hello, how are you. You're gonna see the ENT today. Good. Then left. That's it.
So I wait...and wait.
A wheelchair comes in and I must be going somewhere. "CT scan." Dang, it wasn't what I was waiting for but CT is fast. So I go. I ask at the counter, contrast? One minute...no. Good, no needles.
Please lay here, you have a cannula? No, ok we'll put one. ??? Shit man I'm gonna get a needle. At least she poked the elbow, above the other needle mark where the girl took blood out yesterday. I better get used to it. Then it was the contrast, intrivis or something, and it was over, 10 minutes or so.
Later in the afternoon the doctor comes and indicate that it is time. Come with me. So I go, in a wheel chair. Why not, I was getting lazy, don't want to faint.
This is it, the neuro I can see what they can do but what will happen after surgery will depend on what the ENT will do. The ENT holds the key. The doc was out for lunch and I have to wait. The wait was bad. Finally "come in". He asks a few simple questions. The scope, down to the throat.
Then the bad news, the brain tumor is pretty big and connected, the nasal is a bigger mess. It's behind your nose, your right is obvious and starting to intrude into the left. The right eye orbit is infected and there is also some movement towards the left.
If ...IF we operate then you will lose your right eye to scoop the cancer (because it has infected the muscle), the inner nasal is going to be bombed and what is now a small hole will be huge. The left eye may go due to chemo or radio. Then the plastic must find some meat to shove into the mess. Then there's infection due to the amount of the construction work. Basically to remove it totally they will need to remove the front of my face. The operating theatre is going to be a party, neuro, ENT, eye and plastic surgeons, wonder if there will be chips, girls and nachos. That's if they operate. And the operation is just a trimming measure! Not a cure. So wednesday was off.
Fuck (for short of a better word).
Jahanam! (a better word)
During the night a plastic surgeon touched based. Basically just an intro and she said they can't do/say anything until they know what's going to happen. I say I don't know what to ask until I know what they are going to do. So I wait, again.
So what greets me this morning? The blood reaper! Mother! I was just bled yesterday. It's like nurturing a pet vampire. Let's see what happens tomorrow.
Today the doc comes in and say hello, how are you. You're gonna see the ENT today. Good. Then left. That's it.
So I wait...and wait.
A wheelchair comes in and I must be going somewhere. "CT scan." Dang, it wasn't what I was waiting for but CT is fast. So I go. I ask at the counter, contrast? One minute...no. Good, no needles.
Please lay here, you have a cannula? No, ok we'll put one. ??? Shit man I'm gonna get a needle. At least she poked the elbow, above the other needle mark where the girl took blood out yesterday. I better get used to it. Then it was the contrast, intrivis or something, and it was over, 10 minutes or so.
Later in the afternoon the doctor comes and indicate that it is time. Come with me. So I go, in a wheel chair. Why not, I was getting lazy, don't want to faint.
This is it, the neuro I can see what they can do but what will happen after surgery will depend on what the ENT will do. The ENT holds the key. The doc was out for lunch and I have to wait. The wait was bad. Finally "come in". He asks a few simple questions. The scope, down to the throat.
Then the bad news, the brain tumor is pretty big and connected, the nasal is a bigger mess. It's behind your nose, your right is obvious and starting to intrude into the left. The right eye orbit is infected and there is also some movement towards the left.
If ...IF we operate then you will lose your right eye to scoop the cancer (because it has infected the muscle), the inner nasal is going to be bombed and what is now a small hole will be huge. The left eye may go due to chemo or radio. Then the plastic must find some meat to shove into the mess. Then there's infection due to the amount of the construction work. Basically to remove it totally they will need to remove the front of my face. The operating theatre is going to be a party, neuro, ENT, eye and plastic surgeons, wonder if there will be chips, girls and nachos. That's if they operate. And the operation is just a trimming measure! Not a cure. So wednesday was off.
Fuck (for short of a better word).
Jahanam! (a better word)
During the night a plastic surgeon touched based. Basically just an intro and she said they can't do/say anything until they know what's going to happen. I say I don't know what to ask until I know what they are going to do. So I wait, again.
Tuesday, October 20, 2009
waiting
Man HDU checks your blood pressure, temp and response every 2 hours, 24 hours! Sleeping is not allowed, well how can you sleep. Next morning, tuesday, the blood reaper was waiting.
I come to take your blood. OK. Take it. But this girl took the easy path, the exposed right hand vein. Oh well, what to do.
Afternoon, I move, to the normal ward. Relieved. And a surprise, a single room. It think it's because I have allergies, prawns and crabs.
Oh well some privacy and peace.
I come to take your blood. OK. Take it. But this girl took the easy path, the exposed right hand vein. Oh well, what to do.
Afternoon, I move, to the normal ward. Relieved. And a surprise, a single room. It think it's because I have allergies, prawns and crabs.
Oh well some privacy and peace.
a new hope
Oh its a van, thought I was gonna get an ambulance.
Got everything? Yes. The locked drugs, yes. Had to take it, I paid 50 bucks for it. Also got more. I was afraid it would get lost so I put it in my bag but they remembered and wanted it back so they can lock it up.
When I got to SCGH I thought I would get a ward but no, HDU (high dependency unit). What's that? It's one drop below ICU. Maybe it should be LICU (less intensive care unit).
I didn't like this new home, it was like living in a lab, machines, people, environment. It feels like having a hospital bed in the middle of someones living room and you are the focal point. The nurse said when a bed is free you will move. Cool, soon I hope.
Got everything? Yes. The locked drugs, yes. Had to take it, I paid 50 bucks for it. Also got more. I was afraid it would get lost so I put it in my bag but they remembered and wanted it back so they can lock it up.
When I got to SCGH I thought I would get a ward but no, HDU (high dependency unit). What's that? It's one drop below ICU. Maybe it should be LICU (less intensive care unit).
I didn't like this new home, it was like living in a lab, machines, people, environment. It feels like having a hospital bed in the middle of someones living room and you are the focal point. The nurse said when a bed is free you will move. Cool, soon I hope.
in transit
So it's Monday.
Another day. First up, the blood guy is back! Can't believe it, he already took blood on friday and first up me. What the hey, take it. I'm not gonna look this time, should hurt less. I hear I'm going to move today to SCGH, so I'm not going to see u again :)
bye
So I wait, and wait, and wait...then...ok transport ready, you, go.
Cool I go to a newer(?) hospital?
Hope I get my own room again again.
Another day. First up, the blood guy is back! Can't believe it, he already took blood on friday and first up me. What the hey, take it. I'm not gonna look this time, should hurt less. I hear I'm going to move today to SCGH, so I'm not going to see u again :)
bye
So I wait, and wait, and wait...then...ok transport ready, you, go.
Cool I go to a newer(?) hospital?
Hope I get my own room again again.
Sunday, October 18, 2009
another day
It's Sunday, another day. I was bored but I had the laptop. Did some work.
Then I decided to take another look for B17 (aka laetrile or amygdalin). I went out to the city after lunch to clear the boredom and look for this if there was a health shop or chemist on the way. Nothing.
Web surfing tells me that it may be illegal in this country. Unbelievable. Of all the places. The plum tree at home is still months away from fruits. If it can make my cancer go...where the hell am I gonna get this thing from.
Then I decided to take another look for B17 (aka laetrile or amygdalin). I went out to the city after lunch to clear the boredom and look for this if there was a health shop or chemist on the way. Nothing.
Web surfing tells me that it may be illegal in this country. Unbelievable. Of all the places. The plum tree at home is still months away from fruits. If it can make my cancer go...where the hell am I gonna get this thing from.
limited freedom
Since this was the weekend I was allowed to go home for the day and come back at night.
It was a hot day but I was free. It felt good. Hospital was making me very lazy (lazier actually, I am already lazy) and weak. I go home meet the parents, rest and feel away from all the problems (till 6pm anyways when I have to take the bus back to the hospital).
It was a hot day but I was free. It felt good. Hospital was making me very lazy (lazier actually, I am already lazy) and weak. I go home meet the parents, rest and feel away from all the problems (till 6pm anyways when I have to take the bus back to the hospital).
back to square one
When I checked in the other day Dr G also made a visit.
He had the scans and gave it to me.
I looked at it, it was bad. I couldn't believe the brain tumour had regrown since May. Large and fast. The first tumour was Danny DeVito. This was his bigger brother Arnold DeSchwarzenegger. I hope he's not terminating anymore and just governing. Then I can vote him out of my office.
The cancer around my nasal though was all over the place. It was a mess.
The brain tumour was near the frontal lobe so I knew that the neuro will be tempted to scoop it out. This was later confirmed when the Neuro Registrar (what the hell does that mean) came and suggest that surgery was the most likely scenario followed by radio therapy. If I didn't do anything I get a few months to live, with radio maybe a few years, but both maybe supression for quite a while. Great choice I had. She didn't know what the ENT would do but my guess is that with me out cold (and hopefully alive) they may kick me in the guts as well. We will see next week when I have to move to another hospital that will do the surgery and where they are based.
Can't wait.
I am now back to where I was last year but in another country.
He had the scans and gave it to me.
I looked at it, it was bad. I couldn't believe the brain tumour had regrown since May. Large and fast. The first tumour was Danny DeVito. This was his bigger brother Arnold DeSchwarzenegger. I hope he's not terminating anymore and just governing. Then I can vote him out of my office.
The cancer around my nasal though was all over the place. It was a mess.
The brain tumour was near the frontal lobe so I knew that the neuro will be tempted to scoop it out. This was later confirmed when the Neuro Registrar (what the hell does that mean) came and suggest that surgery was the most likely scenario followed by radio therapy. If I didn't do anything I get a few months to live, with radio maybe a few years, but both maybe supression for quite a while. Great choice I had. She didn't know what the ENT would do but my guess is that with me out cold (and hopefully alive) they may kick me in the guts as well. We will see next week when I have to move to another hospital that will do the surgery and where they are based.
Can't wait.
I am now back to where I was last year but in another country.
no escape
I knew it was too good. I was taking a shower and a knock was at the door. Yeah? I am here to take your blood.
10 minutes.
Then he came back. I say didn't I say come back in a year, 6 months?
He wasn't taking any of that. Nope it's torture time. I show him the big open vein on my right hand. So he says, "that would not challenge my abilities, gimme your left". Bastard. Fortunately he did have abilities and the blood flowed. There was a bulge there growing. I would have thought that if you take blood out, it would not bulge. Funny. Then he left. Since he didn't work on the weekends I said I was safe for a few days, he replied there are replacements, doh!
10 minutes.
Then he came back. I say didn't I say come back in a year, 6 months?
He wasn't taking any of that. Nope it's torture time. I show him the big open vein on my right hand. So he says, "that would not challenge my abilities, gimme your left". Bastard. Fortunately he did have abilities and the blood flowed. There was a bulge there growing. I would have thought that if you take blood out, it would not bulge. Funny. Then he left. Since he didn't work on the weekends I said I was safe for a few days, he replied there are replacements, doh!
a day in oz
So this is a day in an oz hospital.
House keeping comes in the morning. No towels, brush, soap, clothes? My wife is bringing it. So she gets the prison uniform, toothbrush, shaving cream, mouth wash, towels, razor. Nice, but it's still a hospital, a place of death and torture.
Breakfast also comes in, cereal or porridge. Cereal please. Another lady comes in and ask for my choice for the day, halal blah or halal blah for lunch, and dinner? Nice, halal western food. But you loose your appetite in hospital.
So far I have escaped the needles except for the pin pricks for checking the blood sugar levels. I still worry thought.
House keeping comes in the morning. No towels, brush, soap, clothes? My wife is bringing it. So she gets the prison uniform, toothbrush, shaving cream, mouth wash, towels, razor. Nice, but it's still a hospital, a place of death and torture.
Breakfast also comes in, cereal or porridge. Cereal please. Another lady comes in and ask for my choice for the day, halal blah or halal blah for lunch, and dinner? Nice, halal western food. But you loose your appetite in hospital.
So far I have escaped the needles except for the pin pricks for checking the blood sugar levels. I still worry thought.
day one in hospital
So the next day I take the bus to the hospital to the city. My wife was not too confident of driving so the bus was the way to go.
I get there, I register, then wait for a bed...5 hours. The nurse say you can go and come back around 2-3pm. Ok so I go to the city looking for food, halal food. Once I get there after walking so long, the hospital calls saying a doctor wanted to see me. Unbelievable, this always happens when I leave the hospital.
So I buy something from a halal cafe and go back.
The nurse pages the doc. The docs comes and in passing said that she was from Malaysia. How about that, we export something, but they never return.
I see a neuro assistant and radio oncology assistant. They do some simple tests and that was it.
Later my bed was ready. I go. It was a single room. Cool a room of my own (just lucky). I was expecting the 'prison garb' but this did not happen. I was also expecting the piping but this also did not happen. Cool and relieved.
We were chilling out when a women entered asking what I would like to eat. We have...then the halal word popped out. She says yeah we can get you that for tomorrow. There's none tonight. So I ask for vegetarian.
I get there, I register, then wait for a bed...5 hours. The nurse say you can go and come back around 2-3pm. Ok so I go to the city looking for food, halal food. Once I get there after walking so long, the hospital calls saying a doctor wanted to see me. Unbelievable, this always happens when I leave the hospital.
So I buy something from a halal cafe and go back.
The nurse pages the doc. The docs comes and in passing said that she was from Malaysia. How about that, we export something, but they never return.
I see a neuro assistant and radio oncology assistant. They do some simple tests and that was it.
Later my bed was ready. I go. It was a single room. Cool a room of my own (just lucky). I was expecting the 'prison garb' but this did not happen. I was also expecting the piping but this also did not happen. Cool and relieved.
We were chilling out when a women entered asking what I would like to eat. We have...then the halal word popped out. She says yeah we can get you that for tomorrow. There's none tonight. So I ask for vegetarian.
scans are ready
Tuesday, no calls.
Wednesday...nothing...ring. It was the doc. He said how are you, how's your headache, your brain is swelling. I knew it was not good from that alone. He says I want you to admit yourself to hospital...now...via emergency. Sounds bad. Lucky I didn't have to visit him, else straight to the ward.
It was night and I didn't feel that anything was going to happen at the hospital and having spent time in hospital, I would rather spend some more time with my wife and daughter.
I say, tomorrow? He sounded disappointed and added you better get some steroids. Yeah my favourite.
I go around looking for a chemist and luckily find an opened one. I didn't have a prescription so I had to give the chemist the doc's number. Luckily all goes well (for once) and I get my 'medicine'. Steroids $18, antacid $35. Bodybuilders pay hundreds for steroids. I get this for $18.
By the way, you cannot drive anymore.
Wednesday...nothing...ring. It was the doc. He said how are you, how's your headache, your brain is swelling. I knew it was not good from that alone. He says I want you to admit yourself to hospital...now...via emergency. Sounds bad. Lucky I didn't have to visit him, else straight to the ward.
It was night and I didn't feel that anything was going to happen at the hospital and having spent time in hospital, I would rather spend some more time with my wife and daughter.
I say, tomorrow? He sounded disappointed and added you better get some steroids. Yeah my favourite.
I go around looking for a chemist and luckily find an opened one. I didn't have a prescription so I had to give the chemist the doc's number. Luckily all goes well (for once) and I get my 'medicine'. Steroids $18, antacid $35. Bodybuilders pay hundreds for steroids. I get this for $18.
By the way, you cannot drive anymore.
my head glows
A day later the doc's office calls to say that my scan is set for Saturday.
Cool, so I go. "This is a private clinic, all charges have to be settled." This means I have to pay something. The MRI scans in Malaysia are $1200, so it ain't gonna be cheap.
I was early, for once, and they were late but I waited patiently. Then it was my turn and the piping was necessary. I hate IV piping. It didn't hurt...much ... but I still hate it. Pulling nasal or facial hair hurts more.
I had to change to the 'prison garb' and I forgot to wear underwear, hope nobody noticed. I also forgot to remove my ring! Lucky it didn't get suck into the MRI machine. It's magnetic after all.
I got earphones to listen to music. The noise from the MRI was so loud I could not hear anything anyway. Wonder what the speakers are made off, magnet safe?
After 30 minutes or so I was free.
$630+, I knew it would cost me. The gadolinium alone was $68. Lucky I didn't get the one HKL used that would have made me glow. I am penniless so on to the credit card it goes.
Your scans will be ready by Tuesday.
Cool, so I go. "This is a private clinic, all charges have to be settled." This means I have to pay something. The MRI scans in Malaysia are $1200, so it ain't gonna be cheap.
I was early, for once, and they were late but I waited patiently. Then it was my turn and the piping was necessary. I hate IV piping. It didn't hurt...much ... but I still hate it. Pulling nasal or facial hair hurts more.
I had to change to the 'prison garb' and I forgot to wear underwear, hope nobody noticed. I also forgot to remove my ring! Lucky it didn't get suck into the MRI machine. It's magnetic after all.
I got earphones to listen to music. The noise from the MRI was so loud I could not hear anything anyway. Wonder what the speakers are made off, magnet safe?
After 30 minutes or so I was free.
$630+, I knew it would cost me. The gadolinium alone was $68. Lucky I didn't get the one HKL used that would have made me glow. I am penniless so on to the credit card it goes.
Your scans will be ready by Tuesday.
first contact
So I see the doctor. Happens to originate from Ipoh, funny. (Even the chemist near my house was from Malaysia.)
Anyways, we have the small talk and look at the 'holiday photos' (scans). Blah blah blah then he suggests that I go for an MRI scan. I was eager for this as it had been a while since the last one and I was beginning to get minor headaches.
With contrast? Yep...darn I hate contrast.
Done...$139.
Anyways, we have the small talk and look at the 'holiday photos' (scans). Blah blah blah then he suggests that I go for an MRI scan. I was eager for this as it had been a while since the last one and I was beginning to get minor headaches.
With contrast? Yep...darn I hate contrast.
Done...$139.
comprehensive cancer center
Well it sounded good. After parking and looking for the place, Dr G didn't work here anymore! I say that any cancer doctor will do and the answer was that a doc was going for 1 week leave and the other was taking the slack and it will be a long wait.
Unbelievable. The receptionist tracked Dr G down like a dog and faxed my referral. Dr G's office calls and say okay, 6 Oct...and...$200. Ok-lah a few days from now.
What to do.
Unbelievable. The receptionist tracked Dr G down like a dog and faxed my referral. Dr G's office calls and say okay, 6 Oct...and...$200. Ok-lah a few days from now.
What to do.
referral
A few days later armed with my new ticket I book an appointment with a general practitioner (GP).
My sister says the egyptian doctor was good but he was busy so I was left with Dr Pang.
When I met him I knew this was going to be a crappy visit. Sure was, so to cut to the point I just ask him to get a referral to another doctor. Then I was out. I don't want to see this guy anymore, a very bland visit.
My sister says the egyptian doctor was good but he was busy so I was left with Dr Pang.
When I met him I knew this was going to be a crappy visit. Sure was, so to cut to the point I just ask him to get a referral to another doctor. Then I was out. I don't want to see this guy anymore, a very bland visit.
Thursday, September 10, 2009
where are we toto?
Here we are in Oz. My sister picks me up and we go to my mom's place.
A day or two later we go to Medicare.
Our medicare card had expired, I thought that it would be easy to replace but no, nothings are NOT going to be easy for me this time. They want ID, proof of address, I mentioned I was out of the country for over 5 years, so they slap more requirements, a declaration of intent of moving to Australia, proof of sale of property, employment termination, closing bank accounts...bullshit.
I was outta there.
So I ponder, I have a credit card and the addressed changed to where I was staying. That's something, a proof of address. So I go to the bank, asked for a replacement then wait. So where did it go, interstate! Why? I ask the bank, oh the new address has not been enabled. You got to be kidding me.
I will have to wait for a statement, another week, but I cannot wait. I needed to try to get a drivers licence. At least it will have a proof of address and proof of ID. So I ask at the licensing center. What do they want? Proof of address. Shit.
By this time my parent bought me a secondhand car. God bless their soul. The change of address form does not ask for a proof of address and I can use it as a proof address. So I submitted the form and applied for the license. No problem. Bullshit man, in the end I didn't need the proof of address.
I spent several hours practicing over the example quizes for the license. Fortunately I passed.
Now let's try the medicare again.
This time I manage to get my card but my wife did not. My daughter also had problems. I needed to print her electronic visa, somehow.
A day or two later we go to Medicare.
Our medicare card had expired, I thought that it would be easy to replace but no, nothings are NOT going to be easy for me this time. They want ID, proof of address, I mentioned I was out of the country for over 5 years, so they slap more requirements, a declaration of intent of moving to Australia, proof of sale of property, employment termination, closing bank accounts...bullshit.
I was outta there.
So I ponder, I have a credit card and the addressed changed to where I was staying. That's something, a proof of address. So I go to the bank, asked for a replacement then wait. So where did it go, interstate! Why? I ask the bank, oh the new address has not been enabled. You got to be kidding me.
I will have to wait for a statement, another week, but I cannot wait. I needed to try to get a drivers licence. At least it will have a proof of address and proof of ID. So I ask at the licensing center. What do they want? Proof of address. Shit.
By this time my parent bought me a secondhand car. God bless their soul. The change of address form does not ask for a proof of address and I can use it as a proof address. So I submitted the form and applied for the license. No problem. Bullshit man, in the end I didn't need the proof of address.
I spent several hours practicing over the example quizes for the license. Fortunately I passed.
Now let's try the medicare again.
This time I manage to get my card but my wife did not. My daughter also had problems. I needed to print her electronic visa, somehow.
procrastinator to the end
So with a heavy heart I go to Oz. I didn't have a dime...mum.
Yep the last hope, mother and fortunately she obliged. The house she had was also unoccupied, great. She transferred some money which was more than enough, thought I would get something to play with but...
My daughters passport rm300, mine had expired rm300, my wife as well! rm300.
My wife's visa 700, 2 international drivers permit 150(x2=300), daughter's visa rm50. Plane rm1200. Terrible exchange rate...well I didn't have anything left.
Wonder if I'll ever get anything from my day job.
Travel date 13th at 12.05pm ie 14th. I had stuff I wanted to take, software, scanned documents, man that took forever. I left to get the wife on the 12th.
On the 13th I wasted time on the PC, left for KL at around 3pm. Had to return some stuff to Mr O, return keys to JPS, forgot to get the wireless. Went to get it. Too late to sell the kancil. Planned to return the proton at the kampung, get a taxi to follow and this at 9:30pm.
I was panicking. The wife was a little oblivious. Man I may not make it, the counter at the airport closed 1 hour before. Shit man. I get to the nearest town near my hometown and what, NO TAXIs! I absolutely don't believe it. This town that had always had taxis, not one. Unbelievable, no taxis when you need it. I had to go to the nearest big town to find a taxi. By then it was 10+, no way I'd make it.
I returned the car, took a back way to the airport, don't know if this was faster. The taxi was real slow until he got to the highway. But my watch talls me it was too late. When I get to the airport it was 11:30pm. The counter didn't have Oz anymore. The guy at the counter says 'can I help you'. I said Oz? Sorry it's already closed. 'What's my options?' One minute, I'll get the supervisor. I ask the super and he tapped on his keyboard. Gone man. To reissure, rm1200. ???That's how much to get the next flight on the next night. That was with the carry over of my original 1K. I said that I may as well use the internet and save 200 bucks but in 15 minutes? It takes that long just to boot the laptop. Shit I'm dead, oh well I have mastercard.
He says folow me. I follow then he comes back, done. Huh. Yep it was done. ???
it was done...yeah I didn't have to pay, I could not believe it! I could kiss this guy. ('could' but I didn't).
So I take a bus back to KLSentral and stayed at a crappy hotel. Next day went shopping (wife's birthday), bought a psp for the daughter (for me actually) then back to the airport.
This time no chances.
Yep the last hope, mother and fortunately she obliged. The house she had was also unoccupied, great. She transferred some money which was more than enough, thought I would get something to play with but...
My daughters passport rm300, mine had expired rm300, my wife as well! rm300.
My wife's visa 700, 2 international drivers permit 150(x2=300), daughter's visa rm50. Plane rm1200. Terrible exchange rate...well I didn't have anything left.
Wonder if I'll ever get anything from my day job.
Travel date 13th at 12.05pm ie 14th. I had stuff I wanted to take, software, scanned documents, man that took forever. I left to get the wife on the 12th.
On the 13th I wasted time on the PC, left for KL at around 3pm. Had to return some stuff to Mr O, return keys to JPS, forgot to get the wireless. Went to get it. Too late to sell the kancil. Planned to return the proton at the kampung, get a taxi to follow and this at 9:30pm.
I was panicking. The wife was a little oblivious. Man I may not make it, the counter at the airport closed 1 hour before. Shit man. I get to the nearest town near my hometown and what, NO TAXIs! I absolutely don't believe it. This town that had always had taxis, not one. Unbelievable, no taxis when you need it. I had to go to the nearest big town to find a taxi. By then it was 10+, no way I'd make it.
I returned the car, took a back way to the airport, don't know if this was faster. The taxi was real slow until he got to the highway. But my watch talls me it was too late. When I get to the airport it was 11:30pm. The counter didn't have Oz anymore. The guy at the counter says 'can I help you'. I said Oz? Sorry it's already closed. 'What's my options?' One minute, I'll get the supervisor. I ask the super and he tapped on his keyboard. Gone man. To reissure, rm1200. ???That's how much to get the next flight on the next night. That was with the carry over of my original 1K. I said that I may as well use the internet and save 200 bucks but in 15 minutes? It takes that long just to boot the laptop. Shit I'm dead, oh well I have mastercard.
He says folow me. I follow then he comes back, done. Huh. Yep it was done. ???
it was done...yeah I didn't have to pay, I could not believe it! I could kiss this guy. ('could' but I didn't).
So I take a bus back to KLSentral and stayed at a crappy hotel. Next day went shopping (wife's birthday), bought a psp for the daughter (for me actually) then back to the airport.
This time no chances.
a rock and a hard place
what to do ... what to do ... what to do
I had to tell the oncologist whether I will go ahead with the radiotherapy.
I try to tell my sister to check with Sir Charles Gairdner whether they have an IMRT machine. I wasn't able to call because my phone has been disconnected. I had to SMS instead. This was last minute the day before. Well it was too late, the day I had to let the doctor know, I had not had a reply.
I did say I was going to ask at a private hospital. In the end I procrastinated that too.
That's it off to Oz I go.
I see the doctor, told her my decision. She said ok, good luck and hurry, whatever happens, you can return and go straight to the slab, the plan has already been done. Hmm...hurry...this was from someone who took 1 month to plan.
I ask for some paper work, summary of my treatment and the scans. Ok, pick it up in 2 weeks.
bye.
I had to tell the oncologist whether I will go ahead with the radiotherapy.
I try to tell my sister to check with Sir Charles Gairdner whether they have an IMRT machine. I wasn't able to call because my phone has been disconnected. I had to SMS instead. This was last minute the day before. Well it was too late, the day I had to let the doctor know, I had not had a reply.
I did say I was going to ask at a private hospital. In the end I procrastinated that too.
That's it off to Oz I go.
I see the doctor, told her my decision. She said ok, good luck and hurry, whatever happens, you can return and go straight to the slab, the plan has already been done. Hmm...hurry...this was from someone who took 1 month to plan.
I ask for some paper work, summary of my treatment and the scans. Ok, pick it up in 2 weeks.
bye.
the ENT again
It was time to see the ENT again. There was nothing much. The doctor wasn't too concerned about the findings from the oncologist. He said the starting point was the nasal area. Don't know what would appear in the right cheek.
Oh well...what ever. I no longer feel anymore.
I told him I had to make a decision as to whether to commit to the radiotherapy.
He said drop by whenever and tell him what's happening. I say ok.
Oh well...what ever. I no longer feel anymore.
I told him I had to make a decision as to whether to commit to the radiotherapy.
He said drop by whenever and tell him what's happening. I say ok.
Thursday, July 2, 2009
b17 no it's not a plane
About a month ago Puan Norlida mentioned vitamin B17. I was complacent as usual until the MRI results. It was spreading fast. Now I wanted to get my hands on some B17. At least it's better than nothing. But getting it here in this country was not easy, it was not common and, it was expensive RM400 for a bottle of 90s. 4 bucks a pop.
Mak :)
I think it's time for another call to mom. I'll just call to 'enquire' and maybe they'll catch on...wink wink.
Mak :)
I think it's time for another call to mom. I'll just call to 'enquire' and maybe they'll catch on...wink wink.
the man in the plastic mask
Today they verify whatever they are going to do to me. I had a week to think about blindness. I have decided that I cannot accept blindness as an option.
If needs be it would be a death sentence anyways. I don't think I can live with blindness. I get into two machines, ones the CT scan with the mask and the other is like the radiotherapy machine with the mask. The mask was on for a while so when they take it off it left grooves in my face. When I went into the toilet to wash the calibration marks on my face, the impression looked like scales. I was the creature from the black lagoon! Maybe I will end up in a freak show, no sense of smell in one nostril, a hole in my base skull, blindness, maybe later deaf and no tongue.
The mask is to ensure that my head is in the same position every time to simplify being shot with radiation. I wonder if my titanium screws will absorb radiation?
I want to see the doctor. If there is no choice I will have to consider going overseas, Australia? Gamma knife in Singapore? If gamma knife can do something better (probably) then I would have to sell my house to pay for it.
Michael Jackson (or is it Mikheel) died a few days ago. Unbelievable. I guess no-one lives forever and one cannot be guaranteed of a long life even if you don't smoke, or drink, or womanise. Maybe it's not too late for all those things :D.
If needs be it would be a death sentence anyways. I don't think I can live with blindness. I get into two machines, ones the CT scan with the mask and the other is like the radiotherapy machine with the mask. The mask was on for a while so when they take it off it left grooves in my face. When I went into the toilet to wash the calibration marks on my face, the impression looked like scales. I was the creature from the black lagoon! Maybe I will end up in a freak show, no sense of smell in one nostril, a hole in my base skull, blindness, maybe later deaf and no tongue.
The mask is to ensure that my head is in the same position every time to simplify being shot with radiation. I wonder if my titanium screws will absorb radiation?
I want to see the doctor. If there is no choice I will have to consider going overseas, Australia? Gamma knife in Singapore? If gamma knife can do something better (probably) then I would have to sell my house to pay for it.
Michael Jackson (or is it Mikheel) died a few days ago. Unbelievable. I guess no-one lives forever and one cannot be guaranteed of a long life even if you don't smoke, or drink, or womanise. Maybe it's not too late for all those things :D.
maybe not
SO yesterday the nurse calls "come in the doctor wants to see you".
I wasn't expecting anything good. They say wait here. It was a long wait. They seemed carried away with the face mask thing. I guess they were taking the H1N1 seriously.
The doc comes in says hello. blah blah blah. Short story they want to do radiotherapy. She says Mr Cheang concurs. BUT the affected area is close to my optic chiasm, its where the left eye crosses to the right side of the brain and vice versa for the right eye.
The cancer needs 64 greys in order to 'kill' it while the optic chiasm has a tolerance of 54. This would mean blindness. FUCK. The last time I visit I got the impression it was for one eye, now I get total blindness into the package.
Blindness is not something I look forward to.
I wasn't expecting anything good. They say wait here. It was a long wait. They seemed carried away with the face mask thing. I guess they were taking the H1N1 seriously.
The doc comes in says hello. blah blah blah. Short story they want to do radiotherapy. She says Mr Cheang concurs. BUT the affected area is close to my optic chiasm, its where the left eye crosses to the right side of the brain and vice versa for the right eye.
The cancer needs 64 greys in order to 'kill' it while the optic chiasm has a tolerance of 54. This would mean blindness. FUCK. The last time I visit I got the impression it was for one eye, now I get total blindness into the package.
Blindness is not something I look forward to.
Monday, June 22, 2009
Maybe I will see more raya-s
I leave to neuro, disappointed. I see them again in 3 months.
I go upstairs to the ENT. I didn't want to disturb the doc, so I wait for the nurse to go out and to give it to her. So I wait then a doc I recognise came buy , I smiled and ask if doc Harv is in. Just an excuse to open the door. Then I give the nurse the scans and wait outside.
The doc asks me in. He says the scans are all screwed up. Hmm yeah, they are. But the latest is April 29. There. and the latest CT 6th May, here. I ask about the growth and he says that it's discharge...fluid. And the nasal? Leftovers from his handy work. So I'm ok? Yeah. Woohoo.
Maybe I will see more of my daughter's birthdays...I hope.
I feel better. I ask if the onkologist called, nope. Where's the scan reports...hm...gone. HKL took them. Bugger, I have scans of the reports, I'll bring to the next appointment, next month.
So I leave.
Man I need to hassle the onkologist, she said she would call them. Should have guessed, nothing.
I go upstairs to the ENT. I didn't want to disturb the doc, so I wait for the nurse to go out and to give it to her. So I wait then a doc I recognise came buy , I smiled and ask if doc Harv is in. Just an excuse to open the door. Then I give the nurse the scans and wait outside.
The doc asks me in. He says the scans are all screwed up. Hmm yeah, they are. But the latest is April 29. There. and the latest CT 6th May, here. I ask about the growth and he says that it's discharge...fluid. And the nasal? Leftovers from his handy work. So I'm ok? Yeah. Woohoo.
Maybe I will see more of my daughter's birthdays...I hope.
I feel better. I ask if the onkologist called, nope. Where's the scan reports...hm...gone. HKL took them. Bugger, I have scans of the reports, I'll bring to the next appointment, next month.
So I leave.
Man I need to hassle the onkologist, she said she would call them. Should have guessed, nothing.
neuro who?
I was going to see the neuro today. I imagine looking at my scans that I will go straight to the ward. Wouldn't that be a laugh. Yeah.
Wonder which neuro I will see. I go in and I get someone I have never met before. He knows nothing about my case and it showed. You still leaking? No. What a disappointment. Is there a chance of fits. "There's always a chance, doesn't mean you'll get it though." Great, uncertainty till the day I die, then it will be certain. Have you heard of vitamin b17. Wass that, no, believe in contemporary medicine. Everything else is crack pot. Man I hate this guy already. Attitudes like this will keep medicine where it is now, slow. Do whatever the onkologist say. Did the radiologist call? Donno.
Have you seen my scan? It's grown everywhere! Then he shuffles through it. We only deal with the brain. There's some leftovers, let the onkologist deal with it.
...???...
What a waste of time. Wish I had gotten any of the other doctors, this guy was useless.
Wonder which neuro I will see. I go in and I get someone I have never met before. He knows nothing about my case and it showed. You still leaking? No. What a disappointment. Is there a chance of fits. "There's always a chance, doesn't mean you'll get it though." Great, uncertainty till the day I die, then it will be certain. Have you heard of vitamin b17. Wass that, no, believe in contemporary medicine. Everything else is crack pot. Man I hate this guy already. Attitudes like this will keep medicine where it is now, slow. Do whatever the onkologist say. Did the radiologist call? Donno.
Have you seen my scan? It's grown everywhere! Then he shuffles through it. We only deal with the brain. There's some leftovers, let the onkologist deal with it.
...???...
What a waste of time. Wish I had gotten any of the other doctors, this guy was useless.
my last raya
At this rate I am certainly going to die soon. Man only after so months it's everywhere.
I feel sad not being able to see my daughter grow up, have birthdays.
Certainly this will be my last raya.
I feel sad not being able to see my daughter grow up, have birthdays.
Certainly this will be my last raya.
shaking the apple tree
In order to get any fruits sometimes you have to shake the tree. Something may fall.
I had to see the neuro on Monday and I ask HKL if I could pick up my scans. They say sure. I go on friday. While here I tried to get an update on my case after all it has been almost 2 MONTHS since the 'we will call you'. Man I could die before treatment.
The counter says, ask in room 1, the planning room. So I go there, ask about the scans and my case. The guy calls the doctor and then says she wants to see me, please wait. So I wait. The doc comes in and gives me the low down. Here's what we got. You have something here behind your right cheek, something suspicious on the right nostril near your eye and leftovers in your brain. The bulk near your eye...if low dose you'll get cataracts cos it's sensitive and at high dose, well no more stereo vision. We'll need your permission. I do the usual smile and lightheartedness. Man this is what you can give me after 2 MONTHS+. This scan is almost 2 months ago. It's probably grown more by then. Fuck what are you waiting for! I will need some input from Mr Cheang or Dr Harvinder. OK. Thanks.
So I leave.
I had to see the neuro on Monday and I ask HKL if I could pick up my scans. They say sure. I go on friday. While here I tried to get an update on my case after all it has been almost 2 MONTHS since the 'we will call you'. Man I could die before treatment.
The counter says, ask in room 1, the planning room. So I go there, ask about the scans and my case. The guy calls the doctor and then says she wants to see me, please wait. So I wait. The doc comes in and gives me the low down. Here's what we got. You have something here behind your right cheek, something suspicious on the right nostril near your eye and leftovers in your brain. The bulk near your eye...if low dose you'll get cataracts cos it's sensitive and at high dose, well no more stereo vision. We'll need your permission. I do the usual smile and lightheartedness. Man this is what you can give me after 2 MONTHS+. This scan is almost 2 months ago. It's probably grown more by then. Fuck what are you waiting for! I will need some input from Mr Cheang or Dr Harvinder. OK. Thanks.
So I leave.
ENT the dragon
OK he's not a dragon but I kinda like Dr Harvinder. Don't know why, maybe because of his simplicity.
"Did you bring your scan?" asked the nurse. What? You called a few weeks ago looking for it, I say where it was (downstairs at neuro) and you didn't get it? Man.
I go in, I get a squirt, a get poked in the nostril, see what could be seen. Hmm a little booger, suck it out. "No sign of leakage". That's it, I see you in a month. I love this doctor.
I promise to bring my scans when I see the neuro next week. Bye.
That's it. How simple is that?
"Did you bring your scan?" asked the nurse. What? You called a few weeks ago looking for it, I say where it was (downstairs at neuro) and you didn't get it? Man.
I go in, I get a squirt, a get poked in the nostril, see what could be seen. Hmm a little booger, suck it out. "No sign of leakage". That's it, I see you in a month. I love this doctor.
I promise to bring my scans when I see the neuro next week. Bye.
That's it. How simple is that?
this time lucky ... or unlucky
So this time I have completed all the prerequisites, the 8hr and 2hr steroids, no food. She says OK. Yay. Wonder why I wasn't worried at all about the contrast solution, it didn't enter my head (I'm gonna pay for this). So I go in. I lay on the 'bed'. They were about to roll me into the machine but the orderly mentioned the IV line. OK. They say please wait for the doctor. So I wait. I drop my arms to let the blood flow down to enlarge my veins. It should help a little (it didn't though). I look at my hands. It's been poked too much and there didn't seem to be any 'live' veins left. Wonder where they will poke me.
The doctor comes and she looks at my hands. She asks if I wanted it in the hands or the elbow. I said hands will do. I feel the alcohol swab at the pinky end of my left hand. I've had a failed attempt there so I was not keen on it but what can I do? I just had to lump it. I feel the sting of the needle and the ache of the discovery ( ie trying to get it in the vein - more like capillary if you ask me). She then tries the test, injecting a saline solution to test if it goes in ... or not. She asks if it hurts, yeah ... YEAH. Man it DID. Oh god that hurts. She looks at my left hand looking for another candidate. Then drops it for my right hand. I feel the swab, it was the biggest 'capillary' there. So I was sort of glad, this should go in. She pokes it and I felt it. Then she injects. I say Oh, whats that? She asks, that hurts? YEAH.
Man I felt like crying. Let me out please, I wanna go home. Timeout. There goes my macho image. Sob...sob.
Then she went for the jugular, the elbow. The vein there was large. What did I do to deserve this. God help me ... oh I forgot to say a little prayer then I recited the salawat 3 times. This time I felt the sting and the ache, but felt the squirt of the saline solution going in. Thank god.
Man I will never let anyone try the pinky end of my left hand again. Will opt for the jugular next time.
(It just occurred to me that they didn't constrict my arm to enlarge the veins when they tried the IV line, they always did that when I was at Ipoh. Man I would rather be at Ipoh RPB hospital if this was a sample of their treatment.)
The scan was the usual scan. Then the contrast solution. The nurse say injecting. I felt something entering my veins, then my throat felt warm and tingly, not nice more like glowing from radiation tingle. Then around my groin then around my stomach. Now I know why they were so strict on the steroids. It was a struggle to ignore the feeling around my throat to stop from vomiting. It felt like someone was poking me in the back of the throat. Then I had the mask which I did before placed on my head, and it was over.
I can go. You will get another Xray before your radiotherapy begins. We will call you (yeah right).
The doctor comes and she looks at my hands. She asks if I wanted it in the hands or the elbow. I said hands will do. I feel the alcohol swab at the pinky end of my left hand. I've had a failed attempt there so I was not keen on it but what can I do? I just had to lump it. I feel the sting of the needle and the ache of the discovery ( ie trying to get it in the vein - more like capillary if you ask me). She then tries the test, injecting a saline solution to test if it goes in ... or not. She asks if it hurts, yeah ... YEAH. Man it DID. Oh god that hurts. She looks at my left hand looking for another candidate. Then drops it for my right hand. I feel the swab, it was the biggest 'capillary' there. So I was sort of glad, this should go in. She pokes it and I felt it. Then she injects. I say Oh, whats that? She asks, that hurts? YEAH.
Man I felt like crying. Let me out please, I wanna go home. Timeout. There goes my macho image. Sob...sob.
Then she went for the jugular, the elbow. The vein there was large. What did I do to deserve this. God help me ... oh I forgot to say a little prayer then I recited the salawat 3 times. This time I felt the sting and the ache, but felt the squirt of the saline solution going in. Thank god.
Man I will never let anyone try the pinky end of my left hand again. Will opt for the jugular next time.
(It just occurred to me that they didn't constrict my arm to enlarge the veins when they tried the IV line, they always did that when I was at Ipoh. Man I would rather be at Ipoh RPB hospital if this was a sample of their treatment.)
The scan was the usual scan. Then the contrast solution. The nurse say injecting. I felt something entering my veins, then my throat felt warm and tingly, not nice more like glowing from radiation tingle. Then around my groin then around my stomach. Now I know why they were so strict on the steroids. It was a struggle to ignore the feeling around my throat to stop from vomiting. It felt like someone was poking me in the back of the throat. Then I had the mask which I did before placed on my head, and it was over.
I can go. You will get another Xray before your radiotherapy begins. We will call you (yeah right).
third time lucky
Ok so third time to try get this CT simulation thing happening.
I had just moved from Perak and arrived late plus the removalist made an opportunistic detour to get some other things along the way. I called some friends, thanks guys L - M & Mr O (phew, lucky MrO is O if C I would get Larry Curly and Mo :D ), to help lift the big stuff, fridges, sofa etc. Man if they had not helped I would've blown my nasal hole cap ie leaked again. Thanks for waiting till 12 man. Man it'll be my treat for tea tarik when, if EVER I get money from my current project.
Thus, I forgot to take my 8hr before, steroids. Next day I had just remembered about it and took the 2hr before. Blah blah blah, I see the girl and she asked about the steroids. I said I forgot the 8hr but took the 2hr. She said one minute I will ask the doctor. She comes back and said nope. Huh. That wasn't what I had imagined would happened. Man I've taken contrast solutions before, how bad can it be!
She said come back tomorrow, get more pills and don't forget to eat them.
Man that was disappointing.
I had just moved from Perak and arrived late plus the removalist made an opportunistic detour to get some other things along the way. I called some friends, thanks guys L - M & Mr O (phew, lucky MrO is O if C I would get Larry Curly and Mo :D ), to help lift the big stuff, fridges, sofa etc. Man if they had not helped I would've blown my nasal hole cap ie leaked again. Thanks for waiting till 12 man. Man it'll be my treat for tea tarik when, if EVER I get money from my current project.
Thus, I forgot to take my 8hr before, steroids. Next day I had just remembered about it and took the 2hr before. Blah blah blah, I see the girl and she asked about the steroids. I said I forgot the 8hr but took the 2hr. She said one minute I will ask the doctor. She comes back and said nope. Huh. That wasn't what I had imagined would happened. Man I've taken contrast solutions before, how bad can it be!
She said come back tomorrow, get more pills and don't forget to eat them.
Man that was disappointing.
Friday, May 1, 2009
back to the source
During the day I get a call from the hospital that my MRI was on a wednesday, i said my next appointment at the radio clinic was wednesday. She then said I call you back. Later she calls and say keep the MRI at ipoh at 8 and reschedule the radio. The MRI appointment was as usual a precious item, ie highly overbooked, don't miss it. She says the the radio will call you back.
I decide to stay at a hotel as it will cost almost as much to go home and come back but wake up at 5am or something. Next day I go straight to the hospital. I go to neuro to hand the letters. I wait, I wait, it's 8. Where is everyone. I sneak a peak to find a doc and find one. It just happens to be the doc I was supposed to see. I hand the letters and my appointment card and get the MRI letter and go to the imaging dept.
I go to the MRI area and change to the usual patient garb but get to keep my underwear. Funny, I happen to be wearing underwear today, its not the usual case. I mention the metal screws so they spend the next 15 minutes trying to get the metal detector working ie find the misplaced batteries. Eventually they just take the neuro's word that it's MRi safe and send me in.
It's nosy in the machine. After a while I get out but the doc says waiting a minute, injection time. Damn I thought I wasn't going to get the contrast. Lucky I didn't know otherwise I would have been anxious all day. But I sucked it in. I was a little uncomfortable as usual. Then back in.
Another 15 mins then it was done and get out.
I go back to the neuro and was told to deliver the other letter at the pathology dept. After handing that over I was done.
I decide to stay at a hotel as it will cost almost as much to go home and come back but wake up at 5am or something. Next day I go straight to the hospital. I go to neuro to hand the letters. I wait, I wait, it's 8. Where is everyone. I sneak a peak to find a doc and find one. It just happens to be the doc I was supposed to see. I hand the letters and my appointment card and get the MRI letter and go to the imaging dept.
I go to the MRI area and change to the usual patient garb but get to keep my underwear. Funny, I happen to be wearing underwear today, its not the usual case. I mention the metal screws so they spend the next 15 minutes trying to get the metal detector working ie find the misplaced batteries. Eventually they just take the neuro's word that it's MRi safe and send me in.
It's nosy in the machine. After a while I get out but the doc says waiting a minute, injection time. Damn I thought I wasn't going to get the contrast. Lucky I didn't know otherwise I would have been anxious all day. But I sucked it in. I was a little uncomfortable as usual. Then back in.
Another 15 mins then it was done and get out.
I go back to the neuro and was told to deliver the other letter at the pathology dept. After handing that over I was done.
second time round
The next week, same thing, drive 3 times around the hospital looking for parking. At 10 the staff parking opens to the public. After 30 minutes plus looking for parking the staff parking opens and we take one. I go to the clinic.
I see the nurse who says wait here. I take a trip on a massaging chair while I wait. Wonder why this chair thing costs so much to buy. By the time it was my turn, the machine broke down. Damn, what a wasted trip. I need to retry next week, what's more I have to deliver 2 letters to Ipoh to get an MRI and try to get a sample of a sample they took from my tumour.
Then I go to work, waste of a morning.
I see the nurse who says wait here. I take a trip on a massaging chair while I wait. Wonder why this chair thing costs so much to buy. By the time it was my turn, the machine broke down. Damn, what a wasted trip. I need to retry next week, what's more I have to deliver 2 letters to Ipoh to get an MRI and try to get a sample of a sample they took from my tumour.
Then I go to work, waste of a morning.
radio therapy
the week I go to see the radiotherapy and oncology specialist. I was late again. The lack of parking didn't help either. It's just that there was no parking. I wonder why they made the LRT station at kg baru. There's nothing there! Why didn't they put it where it would be of great use, the hospital. It's the main hospital in the country! Such small brains.
I get there at 10 for an appointment at 9. It was packed. I sat next to a guy who has a ticket 2009. He says he's been here since 9. The current serviced number is 2001, my number was 2011. My god at this rate I won't see the doc till dinner time.
I did finally see the doc. She just asks some simple questions about my journey and that was it. The doc decided on radiotherapy. Go see the radio dept.
I go there and they give me wednesday next week. I will need to undergo a ct simulation for them to plan where to shoot the radio active stuff. And I will also need a mask to put on my head, to keep my head still and also to mark where to shoot. Better than marking my head.
Then that was it. I go. Nothing much I will also get a contrast solution when scanned. I hate contrast solution, it means a needle. I will also need to take some steroids the night before the scan and fast.
I get there at 10 for an appointment at 9. It was packed. I sat next to a guy who has a ticket 2009. He says he's been here since 9. The current serviced number is 2001, my number was 2011. My god at this rate I won't see the doc till dinner time.
I did finally see the doc. She just asks some simple questions about my journey and that was it. The doc decided on radiotherapy. Go see the radio dept.
I go there and they give me wednesday next week. I will need to undergo a ct simulation for them to plan where to shoot the radio active stuff. And I will also need a mask to put on my head, to keep my head still and also to mark where to shoot. Better than marking my head.
Then that was it. I go. Nothing much I will also get a contrast solution when scanned. I hate contrast solution, it means a needle. I will also need to take some steroids the night before the scan and fast.
Tuesday, April 21, 2009
stick a finger in your eye
Next week comes along and I have to see the eye doc, late. The nurse basically asks why are you so damn late. Sorry.
I do the spelling test. 6/9. Then see the doc. She says ok get this eye poison in there first. I get the eye drops. After a while I see the doc again. Now for the more irritating eye drops. Damn it stings a little. Then she takes a look. Looks the same left and right. She asks other questions, nothing of much interest. She asked what tests were done last time, I say the peripheral. She asked whether I did the glasses test. I say not as a pair but individually. Then she says see you in 6 months.
The nurse asks for my appointment card. I said don't have it, I ask the doc, she says don't have. Shoot. Where is it. The nurse ask who gave the ticket, she don't have it. Then I remember my pocket have it! The nurse then comments you did it on purpose or just absent minded. I says I will need another operation. She says you got operated on I says yes and I should try to get nootropil from the docs. She chuckles and give me my card but add don't be late.
I do the spelling test. 6/9. Then see the doc. She says ok get this eye poison in there first. I get the eye drops. After a while I see the doc again. Now for the more irritating eye drops. Damn it stings a little. Then she takes a look. Looks the same left and right. She asks other questions, nothing of much interest. She asked what tests were done last time, I say the peripheral. She asked whether I did the glasses test. I say not as a pair but individually. Then she says see you in 6 months.
The nurse asks for my appointment card. I said don't have it, I ask the doc, she says don't have. Shoot. Where is it. The nurse ask who gave the ticket, she don't have it. Then I remember my pocket have it! The nurse then comments you did it on purpose or just absent minded. I says I will need another operation. She says you got operated on I says yes and I should try to get nootropil from the docs. She chuckles and give me my card but add don't be late.
sniff it, sniff it real hard
The next day it was time to see the ENT, late again. I was starting to hate this late thing but first the neuro.
I bump by the doc from yesterday. He said the paperwork was ready. ask about the medic alert bracelet. He said they don't provide for my condition. They only provide it for diabetics and allergies. Screwed up man. I always thought it was for any medication condition. Kind of makes it useless. Not very flexible.
So I wait for the paperwork then go but I get a comment from the nurse not to be so late next time. OK.
I wait for the ENT. I know it's late. Hope I'm lucky. I see him and this time I sniffed more :) . Don't think it makes any difference. I stiff feel the same. The doc looks at the end of my nostril. I see that it is definitely grown from left to right. It's totally blocked. The path to the brain can also be visible and at the end of the tiny opening was my brain throbbing.
Oh well, what to do.
I tell him that I will see the oncologist next week, just after the eye doc.
He says ok, see you in 3 months.
I bump by the doc from yesterday. He said the paperwork was ready. ask about the medic alert bracelet. He said they don't provide for my condition. They only provide it for diabetics and allergies. Screwed up man. I always thought it was for any medication condition. Kind of makes it useless. Not very flexible.
So I wait for the paperwork then go but I get a comment from the nurse not to be so late next time. OK.
I wait for the ENT. I know it's late. Hope I'm lucky. I see him and this time I sniffed more :) . Don't think it makes any difference. I stiff feel the same. The doc looks at the end of my nostril. I see that it is definitely grown from left to right. It's totally blocked. The path to the brain can also be visible and at the end of the tiny opening was my brain throbbing.
Oh well, what to do.
I tell him that I will see the oncologist next week, just after the eye doc.
He says ok, see you in 3 months.
there's nothing wrong with you
So monday comes along and I have to see the Neuro.
While I wait I see Dr Thinnesh. He greets me and asks whether I am still leaking. I say nope and the medicine did it's trick. He says good, still on the brew. I said no, it's finished. I ask whether I'll get chemo or radiotherapy because the ENT asked. He said that depends on the onkologist. They vist once a month .... then the nurses calls me in. I make my excuse and see the neuro.
It was the other doctor (I alsway forget to look at his name tag). He asks whether I was leaking. I said no. He was happy. I ask about the chemo or radio. He says I will need to see the onkologist. He says he will make an appointment today. I say the ENT asked and I will see him tomorrow. He said it's up to the onkologist. He'll give me the details tomorrow plus the reference letter. I say I'll visit tomorrow before the ENT.
I ask about the medic alert bracelet. My concern was that as my right nostril was blocked and worst exposes my brain whether I can get this thing and wear it to prevent emergency staff from poking a feeding tube or de-airing tube in the right nostril. You never know, this can happen if I have an accident. He said he'll ask. He said you can put a note in your wallet. I said the emergency staff may not go through that.
While I wait I see Dr Thinnesh. He greets me and asks whether I am still leaking. I say nope and the medicine did it's trick. He says good, still on the brew. I said no, it's finished. I ask whether I'll get chemo or radiotherapy because the ENT asked. He said that depends on the onkologist. They vist once a month .... then the nurses calls me in. I make my excuse and see the neuro.
It was the other doctor (I alsway forget to look at his name tag). He asks whether I was leaking. I said no. He was happy. I ask about the chemo or radio. He says I will need to see the onkologist. He says he will make an appointment today. I say the ENT asked and I will see him tomorrow. He said it's up to the onkologist. He'll give me the details tomorrow plus the reference letter. I say I'll visit tomorrow before the ENT.
I ask about the medic alert bracelet. My concern was that as my right nostril was blocked and worst exposes my brain whether I can get this thing and wear it to prevent emergency staff from poking a feeding tube or de-airing tube in the right nostril. You never know, this can happen if I have an accident. He said he'll ask. He said you can put a note in your wallet. I said the emergency staff may not go through that.
Sunday, April 19, 2009
light at the end of the nostril
It was ENT time. I was late 12ish and the appointment was for 10. Hope no-one complained. When I went to the waiting room the nurse ecognise me and said the docs out for lunch, come back at 2pm. Not much I can do, just have to hang around and accept the 'punishment'.
2pm comes by and in I went. He managed a 'how are you' I said good, after all no CSF leak. His office was more quiet now and he seems to have more time. In went the 'anaesthetic' the cocaine. I took a sniff, wonder if it 'helps'. Don't feel any 'happier'.
Then up went the scope. I see that there is flesh from the left wall connected to the right wall. The passage now seems blocked by growth, there was 3 small openings. One seemed to go to a dead end, one to the base skull and the other I don't know. Looking at this it appears that there is no way a feeding tube can go up there. He then zoomed in to the central opening. It was dark but there seems to be a bubble like thing at the end. It was also throbbing. He says 'that's your brain throbbing'. I'm actually looking at my brain! The throbbing coincides with my heart beat so it looks like the blood rush from the my heart is showing through the hole in the base skull. I think to myself, this looks bad, the central opening goes straight to my brain. If I go into a coma hospital staff may insert a feeding tube throught the nose. If they put it through the right nostril then it will go straight to and possibly through my brain.
The white stuff that I thought was some kind of gel was still visible. This time he said he was going to remove it with tweezers. Ok. I look on as he pinches the thing and pull it out. It bled a little. It was a small thing. I thought it was bigger. Under it seems growth. Permanent growth that blocks my nostril. There was now no way anything can go through there anymore.
The doc says I'll see you in a few days. He asks if I'm gonna get radiotherapy or chemo. I said I'll see the neuro on monday, I'll find out then and let you know on tuesday.
I ask him about a medic alert badge to inform medics I cannot have tubes entering the right nostril. He said he didn't know. I voice my concern about the nostril he said he can right a memo and put it in my wallet. I said ok, maybe I can write something obvious and attention grabbing so someone can read the memo.
2pm comes by and in I went. He managed a 'how are you' I said good, after all no CSF leak. His office was more quiet now and he seems to have more time. In went the 'anaesthetic' the cocaine. I took a sniff, wonder if it 'helps'. Don't feel any 'happier'.
Then up went the scope. I see that there is flesh from the left wall connected to the right wall. The passage now seems blocked by growth, there was 3 small openings. One seemed to go to a dead end, one to the base skull and the other I don't know. Looking at this it appears that there is no way a feeding tube can go up there. He then zoomed in to the central opening. It was dark but there seems to be a bubble like thing at the end. It was also throbbing. He says 'that's your brain throbbing'. I'm actually looking at my brain! The throbbing coincides with my heart beat so it looks like the blood rush from the my heart is showing through the hole in the base skull. I think to myself, this looks bad, the central opening goes straight to my brain. If I go into a coma hospital staff may insert a feeding tube throught the nose. If they put it through the right nostril then it will go straight to and possibly through my brain.
The white stuff that I thought was some kind of gel was still visible. This time he said he was going to remove it with tweezers. Ok. I look on as he pinches the thing and pull it out. It bled a little. It was a small thing. I thought it was bigger. Under it seems growth. Permanent growth that blocks my nostril. There was now no way anything can go through there anymore.
The doc says I'll see you in a few days. He asks if I'm gonna get radiotherapy or chemo. I said I'll see the neuro on monday, I'll find out then and let you know on tuesday.
I ask him about a medic alert badge to inform medics I cannot have tubes entering the right nostril. He said he didn't know. I voice my concern about the nostril he said he can right a memo and put it in my wallet. I said ok, maybe I can write something obvious and attention grabbing so someone can read the memo.
Sunday, April 12, 2009
the postman always knock twice
I get to go home, fantastic. I didn't have to see my daughter walk home waving googdbye. I get to take her home this time.
Dr Shan does the paperwork but said I would not get any medication. I didn't feel confident. I needed the devil's brew, not for a week but a few days would do. I was worried especially with the surgeon saying I will get 'IT'. He says no, its got bad side effects especially kidney stones (so he knows about this, thats good) but I still wasn't getting any, even for a few days worth. Dr Thinnesh walked by. Says how I was. I said I was back to by 'normal' self. I was hoping the good appetite would stick but that went with the steroids. Oh well, nothing lost but the tumor. I ask if there was anything to get my 'good appetite' back, he said vitamins. He also said he'll give a weeks supply of acetazolamide. Thank god. I feel better already as the medication stopped the leak but for only 3 days wasn't good enough to instil confidence in me as I know its character, it was gonna leak if I didn't get it for a few more days. When he said that I was ecstatic. I didn't even have to ask. What a relief. Now I'm happy. I was waiting around and the nurse came. She says you going yet. I said I'm waiting for the paperwork. I ask if I can have the poison as it's lolly time. She says ok, do you want the antibiotic as well? Yeah, if it came in a drip. She says OK. Great a pill and a drip to fill the rest of the day. I feel better already. I went to pay the bills the medical assistants statrted to wish good luck but I said I'll be back after paying the bills and getting my medicine from the pharmacy (which takes ages due to the number of people that gets treated here, it's the main hospital in the state). When I got back they were out for lunch, I was a bit disapointed as I wanted to say goodbye and thanks for the smiles. But too late. I ask the staff nurse whether I needed to see the ENT again, she checked and said yes. and gave me the appointment cards for the ENT and neurosurgery clinics. She also said that if it started leaking again to go to emergency and gave me a paper with my medical summary to show the medics. Man hope that was not going to happen, then I say my goodbyes and left. I felt a little sad after being here so long.
It was good to be home. The next day I did what I didn't have to do for 2 weeks, put out the garbage. This and that, then in the afternoon, I had a funny feeling in my right nostril. Yes it leaked. One drops worth. Damn. I wasn't keen on going back. I was only out yesterday for gods sake. I said to myself I wasn't going to go back. So I say ok lets see what happens tomorrow.
The next day I was worried, morning toothbrush time was when it was going to leak, this is when it usually leaked the most. It didn't. Phew. But later that afternoon it leaked! Half a drops worth. I was stubborn, I didn't want to go back. So lets see tomorrow.
The next day the anxiety was there, morning toothbrush session passed, no leak. The afternoon I took the day off, no activity. I just laid on my back and watched tv. Of course it didn't leak. Man thank god.
The following days I took it easy, no strenuous activity. Keep the nose high, no bending forward. Thank god for the drug otherwise I would've had to go back. Wouldn't that be funny, a day out, discharged, then back the next day. No way.
I had a followup appointment with the ENT and neuro after 2 weeks of freedom. But the drug was only for one week. I then started to cut the tablets in halves then quarters to to get it to fill 2 weeks. It worked, no leaks.
Dr Shan does the paperwork but said I would not get any medication. I didn't feel confident. I needed the devil's brew, not for a week but a few days would do. I was worried especially with the surgeon saying I will get 'IT'. He says no, its got bad side effects especially kidney stones (so he knows about this, thats good) but I still wasn't getting any, even for a few days worth. Dr Thinnesh walked by. Says how I was. I said I was back to by 'normal' self. I was hoping the good appetite would stick but that went with the steroids. Oh well, nothing lost but the tumor. I ask if there was anything to get my 'good appetite' back, he said vitamins. He also said he'll give a weeks supply of acetazolamide. Thank god. I feel better already as the medication stopped the leak but for only 3 days wasn't good enough to instil confidence in me as I know its character, it was gonna leak if I didn't get it for a few more days. When he said that I was ecstatic. I didn't even have to ask. What a relief. Now I'm happy. I was waiting around and the nurse came. She says you going yet. I said I'm waiting for the paperwork. I ask if I can have the poison as it's lolly time. She says ok, do you want the antibiotic as well? Yeah, if it came in a drip. She says OK. Great a pill and a drip to fill the rest of the day. I feel better already. I went to pay the bills the medical assistants statrted to wish good luck but I said I'll be back after paying the bills and getting my medicine from the pharmacy (which takes ages due to the number of people that gets treated here, it's the main hospital in the state). When I got back they were out for lunch, I was a bit disapointed as I wanted to say goodbye and thanks for the smiles. But too late. I ask the staff nurse whether I needed to see the ENT again, she checked and said yes. and gave me the appointment cards for the ENT and neurosurgery clinics. She also said that if it started leaking again to go to emergency and gave me a paper with my medical summary to show the medics. Man hope that was not going to happen, then I say my goodbyes and left. I felt a little sad after being here so long.
It was good to be home. The next day I did what I didn't have to do for 2 weeks, put out the garbage. This and that, then in the afternoon, I had a funny feeling in my right nostril. Yes it leaked. One drops worth. Damn. I wasn't keen on going back. I was only out yesterday for gods sake. I said to myself I wasn't going to go back. So I say ok lets see what happens tomorrow.
The next day I was worried, morning toothbrush time was when it was going to leak, this is when it usually leaked the most. It didn't. Phew. But later that afternoon it leaked! Half a drops worth. I was stubborn, I didn't want to go back. So lets see tomorrow.
The next day the anxiety was there, morning toothbrush session passed, no leak. The afternoon I took the day off, no activity. I just laid on my back and watched tv. Of course it didn't leak. Man thank god.
The following days I took it easy, no strenuous activity. Keep the nose high, no bending forward. Thank god for the drug otherwise I would've had to go back. Wouldn't that be funny, a day out, discharged, then back the next day. No way.
I had a followup appointment with the ENT and neuro after 2 weeks of freedom. But the drug was only for one week. I then started to cut the tablets in halves then quarters to to get it to fill 2 weeks. It worked, no leaks.
a deal with the devil
9 days of observation and no improvement. The surgeon was itching to drill my head. I know it. Then they say that I will get a drug to see if it will work, acetazolamide, twice a day to reduce CSF. I said ok, beats surgery. After looking it up on the internet I see that it is not a user friendly drug. Used by mountain climbers this thing is like poison. It increases the risk of kidney stones. So I avoid surgery up the top but may get surgery in the middle. Great, if I was not lucky I get both. One patient had CSF leaked from the stitches on his stomach from his vp shunt. I needed this drug to work. After 2 days it still leaked. Then I get it 4 times a day. For 2 days I laid on my back, this makes the CSF settle on the back of my head and where the pressure is the least at the hole. I had to make sure my nose was as high as possible. Sure enough, it stopped leaking. For 2 days it stopped. Woohoo. It was working. Mr/ Cheang didn't need words when he saw me, just a finger jester to the nose. I said nope. Third strike lucky, the doc Dr/Mr Cheang asked if I wanted to go home. You betcha. Didn't need to tell me twice. I said I can't wait to get 'proper' food again. He said ok get outa here. Woohoo, he wasn't evil, but added if it leaked again I was gonna get 'IT'. I said ok as long as I get to get some 'real' food, I would die happy.
boring
After a week in hospital, I was getting bored. Bored as hell. All I see is what I saw yesterday and the day before. Sometimes the 'victims' change but everything else is the same. No entertainment, no nothing, only the window serves as a point of interest.
There was this patient. An old guy with tatooes on parts of his body. Man he looks like a hitman. I felt a little uncomfortable with him in the bed in front of me. He is the person someone carries around when they want their money back. Even a staff or two gave him a slightly different service than usual. It may be skin deep as this talkative guy on the bed to my left talks to him and he seems ok. But I never saw him smile. Never. A man of few words, like Clint Eastwood but without the appeal. Maybe there was a magnum in his drawer. Then I noticed his head was missing some skull ie soft tissue only. After his surgery he gets a new skull, metal maybe, a new round head. He had a lot of bleeding in the left nostril. Some rough treatment maybe. A day or two later he was gone. Man he scared me.
I then moved beds. Then another guy got admitted in the bed in front of me. This guy seems friendly but the bastard liked to smoke. In the ward! Only thinking of himself. One night there was no wind, only the ceiling fan. Initially the smoke went out the window but when in started to come back in I couldn't stand it, I couldn't breath. I can't stand second hand smoke. I told him enough. Luckily he stopped otherwise I would've had to threaten him. He was admitted with fainting spells and needed an MRI scan but the nurses said that it may take a month or two as the machine was well overbooked. It is the only public hospital MRI scanner in the state! His question was whether he had to stay for that amount of time. For a fidgity bugger like him who cannot stay put, this would be hell. Another patient mentioned that a private hospital offered MRI scans at RM300. This was an option. He took it. He went out and got scanned a day or two later but was charged RM1K. This was how much I paid at another place. Knew it was too cheap. I found out later that he had growth up there in the brain. The doctors offered to operate 4 days from now, a tuesday. But he didn't want it. He wanted to go home against doctors wishes. After getting angry he was allowed to go but without any medication. He was on steroids and anti gastric (histac) medication. Something I was on. So he left, the self centered bugger. I wonder what happened to him.
Today I had to see the ENT again. But since I saw him last week did I need to see him today? Last week I asked the ENT staff whether they need to see me today, they said we'll check. So today I ask this guy that guy, they all say I will get back. They never did. The nurse then came to take me to the ENT, the staff nurse complained that I should have informed them earlier because the apointment time had passed. ??? I was still leaking CSF that day. The funny thing was that when I went into his office, it stopped. The ENT doc scoped and said it stopped. But when I left, it started to leak again. Unpredictable this thing. I remember staying on my back a few days to stop the leak which it did but every morning when I brushed my teeth it leaked, this was when it was the most likely time for leakage. After 2 off days it leaked again. Then the doctors said, huh, because the ENT doc wrote no CSF leak on the diary. What to do, it had a mind of its own. I'm just another sim to a higher being.
On one of the days I noticed this guy get carted in from surgery. He had some spilled blood near his throat and had his head wrapped up like a mummy. An accident victim I thought. At the end of the day this guy comes in with the buffet cart ie a corpses cart. I turned to see the bed where the accident victim went was closed. I knew he didn't make it and so did another guy. He didn't last long. Such a fragile thing life, so easily taken away. So unapreciated when we have it.
After a week I was really bored. The food was repeats of repeats. I had to force feed myself to eat it. I started to try my hand at soduku out of boredom. After a few hours I finished it. Success. While I was doing soduku CSF dripped from my nose to the newspaper below me. I didn't care anymore, I had already told the doctors I was leaking anyway so it wouldn't make any difference. It just kept dripping like a slow leaky fawecet. A few days later I finished my second soduku puzzle. I wonder how they put the puzzle together because there is a solution to it but its time consuming (for me) and almost a single path. I think I can write a perl script to solve it. Along the way this guy pestered me, he said throw this number here, there. I said no, it has to be unique, after a while he understood the complexity.
His father was diagonally to my left. He always winges about the pain. The annoying thing was that when he said it hurts I felt my IV hurt. It was annoying. After a while I didn't notice anymore and he went to sleep. Later the nurse came for his shots and he said it hurts, etc. Then he slept. I asked his son what happened. He said a motobike accident (I think), he bumped his head. He said the doctors wasn't too quick on the diagnosis. I said if it was complicated, the solution may take a while. What I didn't know was that he wasn't even scanned yet. He said maybe today, maybe. Sometimes they have to change his diapers. Man it smells. Imagine doing that for a living, poor staff. He was in and out of sleep state for a while until one day he didn't respond to the morning blood pressure test. The trainee called the staff nurse. She slapped him around for a while (only joking) but also no response. She then checked his iris for autonamous response also nothing. Then she looked concerned and called the doctor. The nurse called for a heart monitor. The doctor started to poke needles and doing stuff, and closed the curtains. Then they moved him closer to the nurses desk. The next time I passed him he was on a breathing aperatus and IV everywhere, neck, thighs, etc. This is bad. When his relatives come in they were crying, one fainted. His curtains were drawn. Then I knew. He was conscious, went into a coma, then the end. A fate that could have happened to me if I didn't fortunately got scanned. Dr Muin mentioned this as what would happen if I did not get my tumor removed. I was disapointed that the sole MRI machine (for the state) was so overworked that this guy died before they could see what could have saved his life. Couldn't a CT scan helped? Such that one has to wait months to get scanned, those that can afford it had no choice but to do it privately.
After 2 weeks I was bored and frustrated. I was so BORED with the food. I wanted to take the tray and throw it at the window, and kick the tray holder. But then I would've gotten an injection and sent to the funny farm. I couldn't eat anymore but I forced myself to swallow the 'lauk'.
One day, after getting a drip I asked the medical assistant to remove the drip. He removed it, then looked around for the stopper (to plug the end of the IV), I pointed to one on the shelf behind me. After a while I wondered whether this was mine. I tried to ask around for the MA that put the drip whether he placed the stopper where I found it. I was a little worried, as it could belong to someone else , one with a contagious disease, hepatitas, whatever. I walked to check which hand the guy I shared the shelf with, the guy behind me, had the IV on the left or the right hand. It was the left, it could be his! His bed tag didn't have any contagious notes on it. But I still was not comfortable. Eventually after raising some concerns and getting more attention than I wanted, I found the MA that put the drip. I ask him where he placed the stopper. He said he couldn't remember. Then another MA said change it, I agreed, change it. So he changed it. That eased my mind but hope I didn't get anything. Up to god I guess.
After 2 weeks of hospital food and boredom I could not take it anymore. I was going insane. We all know how cows go mad (mad cows desease). It's the food (literally).
On the 15th day the medical assistant came and took the morning blood pressure. 75/48. This was LOW, very low, very very low. The medical assistant took several readings just to make sure. He said he'll try it 2 hours later to see if it improves. I said ok ,let me go for a walk. Of course this would give false readings. 1 and a half hour later he came back. Liar. I didn't get a chance to 'improve' the readings. Yep the readings are the same. "Doctor". The doctor came and looked at the readings. I asked what are you going to do? She said fix it. Injections was what was going through my mind but I didn't ask. She asks whether I have been eating, I said no, I couldn't not stand the food anymore. She said "eat lah". I thought to myself, I better eat before they start giving me injections.
There was this patient. An old guy with tatooes on parts of his body. Man he looks like a hitman. I felt a little uncomfortable with him in the bed in front of me. He is the person someone carries around when they want their money back. Even a staff or two gave him a slightly different service than usual. It may be skin deep as this talkative guy on the bed to my left talks to him and he seems ok. But I never saw him smile. Never. A man of few words, like Clint Eastwood but without the appeal. Maybe there was a magnum in his drawer. Then I noticed his head was missing some skull ie soft tissue only. After his surgery he gets a new skull, metal maybe, a new round head. He had a lot of bleeding in the left nostril. Some rough treatment maybe. A day or two later he was gone. Man he scared me.
I then moved beds. Then another guy got admitted in the bed in front of me. This guy seems friendly but the bastard liked to smoke. In the ward! Only thinking of himself. One night there was no wind, only the ceiling fan. Initially the smoke went out the window but when in started to come back in I couldn't stand it, I couldn't breath. I can't stand second hand smoke. I told him enough. Luckily he stopped otherwise I would've had to threaten him. He was admitted with fainting spells and needed an MRI scan but the nurses said that it may take a month or two as the machine was well overbooked. It is the only public hospital MRI scanner in the state! His question was whether he had to stay for that amount of time. For a fidgity bugger like him who cannot stay put, this would be hell. Another patient mentioned that a private hospital offered MRI scans at RM300. This was an option. He took it. He went out and got scanned a day or two later but was charged RM1K. This was how much I paid at another place. Knew it was too cheap. I found out later that he had growth up there in the brain. The doctors offered to operate 4 days from now, a tuesday. But he didn't want it. He wanted to go home against doctors wishes. After getting angry he was allowed to go but without any medication. He was on steroids and anti gastric (histac) medication. Something I was on. So he left, the self centered bugger. I wonder what happened to him.
Today I had to see the ENT again. But since I saw him last week did I need to see him today? Last week I asked the ENT staff whether they need to see me today, they said we'll check. So today I ask this guy that guy, they all say I will get back. They never did. The nurse then came to take me to the ENT, the staff nurse complained that I should have informed them earlier because the apointment time had passed. ??? I was still leaking CSF that day. The funny thing was that when I went into his office, it stopped. The ENT doc scoped and said it stopped. But when I left, it started to leak again. Unpredictable this thing. I remember staying on my back a few days to stop the leak which it did but every morning when I brushed my teeth it leaked, this was when it was the most likely time for leakage. After 2 off days it leaked again. Then the doctors said, huh, because the ENT doc wrote no CSF leak on the diary. What to do, it had a mind of its own. I'm just another sim to a higher being.
On one of the days I noticed this guy get carted in from surgery. He had some spilled blood near his throat and had his head wrapped up like a mummy. An accident victim I thought. At the end of the day this guy comes in with the buffet cart ie a corpses cart. I turned to see the bed where the accident victim went was closed. I knew he didn't make it and so did another guy. He didn't last long. Such a fragile thing life, so easily taken away. So unapreciated when we have it.
After a week I was really bored. The food was repeats of repeats. I had to force feed myself to eat it. I started to try my hand at soduku out of boredom. After a few hours I finished it. Success. While I was doing soduku CSF dripped from my nose to the newspaper below me. I didn't care anymore, I had already told the doctors I was leaking anyway so it wouldn't make any difference. It just kept dripping like a slow leaky fawecet. A few days later I finished my second soduku puzzle. I wonder how they put the puzzle together because there is a solution to it but its time consuming (for me) and almost a single path. I think I can write a perl script to solve it. Along the way this guy pestered me, he said throw this number here, there. I said no, it has to be unique, after a while he understood the complexity.
His father was diagonally to my left. He always winges about the pain. The annoying thing was that when he said it hurts I felt my IV hurt. It was annoying. After a while I didn't notice anymore and he went to sleep. Later the nurse came for his shots and he said it hurts, etc. Then he slept. I asked his son what happened. He said a motobike accident (I think), he bumped his head. He said the doctors wasn't too quick on the diagnosis. I said if it was complicated, the solution may take a while. What I didn't know was that he wasn't even scanned yet. He said maybe today, maybe. Sometimes they have to change his diapers. Man it smells. Imagine doing that for a living, poor staff. He was in and out of sleep state for a while until one day he didn't respond to the morning blood pressure test. The trainee called the staff nurse. She slapped him around for a while (only joking) but also no response. She then checked his iris for autonamous response also nothing. Then she looked concerned and called the doctor. The nurse called for a heart monitor. The doctor started to poke needles and doing stuff, and closed the curtains. Then they moved him closer to the nurses desk. The next time I passed him he was on a breathing aperatus and IV everywhere, neck, thighs, etc. This is bad. When his relatives come in they were crying, one fainted. His curtains were drawn. Then I knew. He was conscious, went into a coma, then the end. A fate that could have happened to me if I didn't fortunately got scanned. Dr Muin mentioned this as what would happen if I did not get my tumor removed. I was disapointed that the sole MRI machine (for the state) was so overworked that this guy died before they could see what could have saved his life. Couldn't a CT scan helped? Such that one has to wait months to get scanned, those that can afford it had no choice but to do it privately.
After 2 weeks I was bored and frustrated. I was so BORED with the food. I wanted to take the tray and throw it at the window, and kick the tray holder. But then I would've gotten an injection and sent to the funny farm. I couldn't eat anymore but I forced myself to swallow the 'lauk'.
One day, after getting a drip I asked the medical assistant to remove the drip. He removed it, then looked around for the stopper (to plug the end of the IV), I pointed to one on the shelf behind me. After a while I wondered whether this was mine. I tried to ask around for the MA that put the drip whether he placed the stopper where I found it. I was a little worried, as it could belong to someone else , one with a contagious disease, hepatitas, whatever. I walked to check which hand the guy I shared the shelf with, the guy behind me, had the IV on the left or the right hand. It was the left, it could be his! His bed tag didn't have any contagious notes on it. But I still was not comfortable. Eventually after raising some concerns and getting more attention than I wanted, I found the MA that put the drip. I ask him where he placed the stopper. He said he couldn't remember. Then another MA said change it, I agreed, change it. So he changed it. That eased my mind but hope I didn't get anything. Up to god I guess.
After 2 weeks of hospital food and boredom I could not take it anymore. I was going insane. We all know how cows go mad (mad cows desease). It's the food (literally).
On the 15th day the medical assistant came and took the morning blood pressure. 75/48. This was LOW, very low, very very low. The medical assistant took several readings just to make sure. He said he'll try it 2 hours later to see if it improves. I said ok ,let me go for a walk. Of course this would give false readings. 1 and a half hour later he came back. Liar. I didn't get a chance to 'improve' the readings. Yep the readings are the same. "Doctor". The doctor came and looked at the readings. I asked what are you going to do? She said fix it. Injections was what was going through my mind but I didn't ask. She asks whether I have been eating, I said no, I couldn't not stand the food anymore. She said "eat lah". I thought to myself, I better eat before they start giving me injections.
Saturday, April 11, 2009
Dr Frankenstein I presume?
Days come and go, the nurse ask the same questions as the doctor, "still leaking?". I say yes, regardless of how much came out. What can I same it's true. If I say its getting less it gets more, when I say it stopped it restarts, it's as if there was someone with a remote control, turturing me. So I just it's leaking.
Several days later Dr/Mr Cheang makes a visit. He says will if the leak don't stop they'll have to make a vp shunt. A vice president shunt? Later I check on the internet that it is a ventriculo peritoneal shunt ie a vent to the peritoneal (stomach). This is a vent at the back of the head to drain the CSF ie surgery. This make the lumbar drain look more attractive seeing as it's not permanent. I thought the vp shunt was temporary and will require surgery to remove it. But no, it's to stay, a very long time. I don't like the idea of this tube to the stomach and very long time in one sentence. So I say no handstands, thinking it may go from the stomach back into the brain. He says it has a pressure valve , so only at a certain pressure does it drain and the valve prevents the fluid from going back into the brain. But the risk is that there may be infection. Great more things that can go wrong. I ask about the lumbar drain. He says that that was not going to happen.
A possible bad case is if the flesh covering the hole in my skull base breaks in which case I will get another major surgery. This time a piece of my stomach is removed, my nose cracked open and the flesh from the stomach shoved into the hole, once and for all. A 20 hour surgery!
I think he should've placed a torch under his chin and shone it upwards and rubbed his hands at the same time.
Man it's getting bad to worst.
Several days later Dr/Mr Cheang makes a visit. He says will if the leak don't stop they'll have to make a vp shunt. A vice president shunt? Later I check on the internet that it is a ventriculo peritoneal shunt ie a vent to the peritoneal (stomach). This is a vent at the back of the head to drain the CSF ie surgery. This make the lumbar drain look more attractive seeing as it's not permanent. I thought the vp shunt was temporary and will require surgery to remove it. But no, it's to stay, a very long time. I don't like the idea of this tube to the stomach and very long time in one sentence. So I say no handstands, thinking it may go from the stomach back into the brain. He says it has a pressure valve , so only at a certain pressure does it drain and the valve prevents the fluid from going back into the brain. But the risk is that there may be infection. Great more things that can go wrong. I ask about the lumbar drain. He says that that was not going to happen.
A possible bad case is if the flesh covering the hole in my skull base breaks in which case I will get another major surgery. This time a piece of my stomach is removed, my nose cracked open and the flesh from the stomach shoved into the hole, once and for all. A 20 hour surgery!
I think he should've placed a torch under his chin and shone it upwards and rubbed his hands at the same time.
Man it's getting bad to worst.
bigbrother
The 3rd day Dr Shan comes in to see me. Finally I get to be told what's happening. He asks if it is still leaking. I say you betcha. He says you will be here under observation for 10 days and be given antibiotics. Great. This will mean at least 3 IV changes. Bad. But at least I know what's happening. Will I get the lumbar drain?
up your nose with a rubber hose
The next day, day 2 I was told to see the ENT doctor. Sure why not. So I was called into the office. I noticed something different. The hussle and bussle was gone. Previously his office was like rush hour and the doctor will die of stress before I die of cancer. Everyone was after his attention. But this time it was nice and serene. He even managed a hello, how are you. Well what can you say when one is leaking brain fluid? He says "come, sit". So I do and he squirts his happy juice into my nose. What to do it was anaesthetic. I needed to wait a moment for it to work. As usual I look around, looking for interesting medical tidbits. Then I notice the label on the anaesthetic. C-o-c-a-i-n-e. Huh?. Happy juice? You gots to be kidding, cocaine! Man I needed to see this doctor more often. Can't let him have all the fun. No wonder it's always empty.
So up went the scope (a camera at the end of a stick). I see this white thing, some hardened booger on it and thats about it. But he can see more, he mentioned throbbing then he says, yes it was leaking CSF. I have no idea what he was looking at (maybe he took too much happy juice). I thought the white thing was some kind of gel to hold against the removed growth to prevent bleeding. He tried to remove the booger using a sucker. He was trying to get at it while at the same time it was like he was trying to remove my nose like Mr Potato. It was not going to come off, man it hurts. Hello, it hurts. But then he gave up his attempt to suck that stubborn booger. Man my nostril ached bad. He said he didn't want to disturb it. Better leave it alone for now, else it would bleed. Good idea. I will see you in a week. Ok.
Disclaimer: This entry is all in jest only. The cocaine is real but the implications are just for fun. No-one is inappropriately taking the juice, as far as I know anyways.
So up went the scope (a camera at the end of a stick). I see this white thing, some hardened booger on it and thats about it. But he can see more, he mentioned throbbing then he says, yes it was leaking CSF. I have no idea what he was looking at (maybe he took too much happy juice). I thought the white thing was some kind of gel to hold against the removed growth to prevent bleeding. He tried to remove the booger using a sucker. He was trying to get at it while at the same time it was like he was trying to remove my nose like Mr Potato. It was not going to come off, man it hurts. Hello, it hurts. But then he gave up his attempt to suck that stubborn booger. Man my nostril ached bad. He said he didn't want to disturb it. Better leave it alone for now, else it would bleed. Good idea. I will see you in a week. Ok.
Disclaimer: This entry is all in jest only. The cocaine is real but the implications are just for fun. No-one is inappropriately taking the juice, as far as I know anyways.
Wednesday, April 1, 2009
no escape
A new day a new worry. Yesterday I survived but I don't think I will have the same luck today. Sure enough a nurse came with the stainless steel tray. In it was my nemesis, rocephine two whoopass syringes worth. Big syringes. This was the second day of my IV line so it should not be that painful. So in it went. It did have the tinglings of pain. Not sure If I can have too many today. Then I find out that it's going to be a once a day event. So this was a relief but 2 shots at once was not going to make it better.
Rocephine is an antibiotic. Administered only via needles, no pills. It's supposed to be effective. This used to scare me every 6:30am for my morning shots. What a way to wake up.
So the next day arrives. 11:30 am, medicine time. Now I'm anxious. The nurse comes with a drip (chamber they call it). I ask what's this? She says rocephine. Great! The drip is nice and slow. Yes it was good, it was painless. Thank god.
The 5th or so day later a nurse came with the stainless steel tray. I knew this was not the drip but the double barrel. I ask where's the drip? She basically replied, bah humbug. Since she was the more senior nurses I was not going to get away with being cute. So I just have to lump it. It started to hurt. It got more and more, just tried to ignore it then I felt the pain reached a point where it popped. I hope nothing 'popped' in there. Damn it was hurting, when I looked it was only half way through the first syringe! Then the first syringe reached the end. I can't remember saying anything but she then left without giving the other shot. I wasn't sad but I was disappointed in missing a dose.
Using the drip the IV line (the pipe/tap) lasted almost 9 days. The 9nth day the drip just wouldn't flow and the nurse said it had to go. I hated that, it would mean...my other hand was going to get it. The left hand felt less sensitive but the right felt more sensitive.
A trainee nurse came with one syringe. I cowed away and said where's it evil twin brother? She said the staff nurse wanted to give 1g shots. I said I wanted the drip. "Staff nurse". The staff nurse came, I said I want the drip. She asks why, I said it hurts like hell that thing. She looks at the IV line and said maybe it's time to tap a new line. I think to myself yeah sure, easy for you to say, I hate that thing. Maybe she should get some of the same medicine :). She said the drip (chamber) is only for 2g or more doses. I said okay why not gimme 1g in drip then topup? She said no way. Then I asked for the 2g doses. Better the once a day painless drip than the slow death of 2 shots per day via syringe.
Today a doctor came with a tray. Hmm seems I wasn't due for my shots. No this was a blood sample. I said sure, I have a multi purpose pipe just here. She said no no no, thats contaminated by medicine and the blood may have clots. It will have to come from a fresh source. Man I hate needles. I've had blood taken before, it felt like your arm is sucked up like being sucked by a vacuum. She jabs that thing in, took some blood and it was over. It wasn't that bad.
The right hand only lasted 4 days. The nurse said it was swollen, I said give it a go the other hand lasted 8 days. She still said nope it had to go. Oh man. I know it hurts less than putting up with the existing line but what can I do. I wanted it to last because I didn't know how long I was going to be here and how many veins do I have? If it's gonna last 4 days and I stay 2 or 3 weeks I will need 5 changes. No way!
The doctor came. She strapped my hand with a rubber glove to help the veins pop up. Many uses these gloves. Can even be used to hold ice and placed on necessary areas of the body. Anyways she starts tapping the bottom of the left hand above my pinky to help it swell. I look at it. The veins there are small and not very straight. She is brave to try this. I close my eyes. I felt it go in. Don't know what's going on then she made the tsk sound. This can't be good and I felt the tap go out. I know it did not succeed and I was going to get another attempt. Man. I opened my eyes and see an ant hill on the back of my left hand. She tried to inject some fluid (sodium chloride I think ie salt water) but did not go through the vein but accumulated where it went in. Well now I know what happens when an attempt fails. She's pressing on it to make it dissipate. What a shocker but not as bad as what she was going to do next. She started tapping the area behind the thumb. I look at it and ask if you could see it, is there anything there. She said yeah. I close my eyes again. This time it hurts because the skin is thicker there. Usually it's not this bad as the places I have had it on before was on thin skinned areas. This felt deep. She tested the line and I did feel it go in as with the other areas. Maybe she does know something, maybe it was a bigger vein. Who cares, it was over. I ask about removing the other line but the nurse said she will do it. The line is actually a small plastic tube the needle just help it to go into the skin.
Later I find that this line isn't bad. The installation was uncomfortable but the usage was good. It was quite painless. But I still felt that the nurses were playing games with me. Trying to torture me with the syringe or the drip. I always feel anxious at medicine time because of this.
Rocephine is an antibiotic. Administered only via needles, no pills. It's supposed to be effective. This used to scare me every 6:30am for my morning shots. What a way to wake up.
So the next day arrives. 11:30 am, medicine time. Now I'm anxious. The nurse comes with a drip (chamber they call it). I ask what's this? She says rocephine. Great! The drip is nice and slow. Yes it was good, it was painless. Thank god.
The 5th or so day later a nurse came with the stainless steel tray. I knew this was not the drip but the double barrel. I ask where's the drip? She basically replied, bah humbug. Since she was the more senior nurses I was not going to get away with being cute. So I just have to lump it. It started to hurt. It got more and more, just tried to ignore it then I felt the pain reached a point where it popped. I hope nothing 'popped' in there. Damn it was hurting, when I looked it was only half way through the first syringe! Then the first syringe reached the end. I can't remember saying anything but she then left without giving the other shot. I wasn't sad but I was disappointed in missing a dose.
Using the drip the IV line (the pipe/tap) lasted almost 9 days. The 9nth day the drip just wouldn't flow and the nurse said it had to go. I hated that, it would mean...my other hand was going to get it. The left hand felt less sensitive but the right felt more sensitive.
A trainee nurse came with one syringe. I cowed away and said where's it evil twin brother? She said the staff nurse wanted to give 1g shots. I said I wanted the drip. "Staff nurse". The staff nurse came, I said I want the drip. She asks why, I said it hurts like hell that thing. She looks at the IV line and said maybe it's time to tap a new line. I think to myself yeah sure, easy for you to say, I hate that thing. Maybe she should get some of the same medicine :). She said the drip (chamber) is only for 2g or more doses. I said okay why not gimme 1g in drip then topup? She said no way. Then I asked for the 2g doses. Better the once a day painless drip than the slow death of 2 shots per day via syringe.
Today a doctor came with a tray. Hmm seems I wasn't due for my shots. No this was a blood sample. I said sure, I have a multi purpose pipe just here. She said no no no, thats contaminated by medicine and the blood may have clots. It will have to come from a fresh source. Man I hate needles. I've had blood taken before, it felt like your arm is sucked up like being sucked by a vacuum. She jabs that thing in, took some blood and it was over. It wasn't that bad.
The right hand only lasted 4 days. The nurse said it was swollen, I said give it a go the other hand lasted 8 days. She still said nope it had to go. Oh man. I know it hurts less than putting up with the existing line but what can I do. I wanted it to last because I didn't know how long I was going to be here and how many veins do I have? If it's gonna last 4 days and I stay 2 or 3 weeks I will need 5 changes. No way!
The doctor came. She strapped my hand with a rubber glove to help the veins pop up. Many uses these gloves. Can even be used to hold ice and placed on necessary areas of the body. Anyways she starts tapping the bottom of the left hand above my pinky to help it swell. I look at it. The veins there are small and not very straight. She is brave to try this. I close my eyes. I felt it go in. Don't know what's going on then she made the tsk sound. This can't be good and I felt the tap go out. I know it did not succeed and I was going to get another attempt. Man. I opened my eyes and see an ant hill on the back of my left hand. She tried to inject some fluid (sodium chloride I think ie salt water) but did not go through the vein but accumulated where it went in. Well now I know what happens when an attempt fails. She's pressing on it to make it dissipate. What a shocker but not as bad as what she was going to do next. She started tapping the area behind the thumb. I look at it and ask if you could see it, is there anything there. She said yeah. I close my eyes again. This time it hurts because the skin is thicker there. Usually it's not this bad as the places I have had it on before was on thin skinned areas. This felt deep. She tested the line and I did feel it go in as with the other areas. Maybe she does know something, maybe it was a bigger vein. Who cares, it was over. I ask about removing the other line but the nurse said she will do it. The line is actually a small plastic tube the needle just help it to go into the skin.
Later I find that this line isn't bad. The installation was uncomfortable but the usage was good. It was quite painless. But I still felt that the nurses were playing games with me. Trying to torture me with the syringe or the drip. I always feel anxious at medicine time because of this.
Tuesday, March 31, 2009
reunited
So I go to the ward. I wanted a class 3 bed but they were all full so I settled in the class 2 bed. People recognized me and ask why I am back, so I say I'm leaking CSF.
I then get the standard issue green uniform. One size fits all, meaning for me the pants are huge as well as the top. What to do. Once warded I knew I will get the standard issue plumbing, the IV line. I hate that thing and still do and will do till the day I die which hopefully will not be for a long time. I do admit that the pain is less than the pain of getting juice through the IV line after it has been buried in there for a few days.
You also get a complimentary name tag so you don't forget who you are.
Then the a doctor came with the stainless steel bowl/tray. I knew what that meant. It's usually something involving needles. But I already knew that it's gonna be the plumbing. So it was that I got the needle stuck behind my hand. I closed my eyes because it actually hurts less.
I got admitted at 3pm. I fear that it might be enough time to meet my old nemesis rocephine. The day wears on and no sight of rocephine. Woohoo I survive a day.
I then get the standard issue green uniform. One size fits all, meaning for me the pants are huge as well as the top. What to do. Once warded I knew I will get the standard issue plumbing, the IV line. I hate that thing and still do and will do till the day I die which hopefully will not be for a long time. I do admit that the pain is less than the pain of getting juice through the IV line after it has been buried in there for a few days.
You also get a complimentary name tag so you don't forget who you are.
Then the a doctor came with the stainless steel bowl/tray. I knew what that meant. It's usually something involving needles. But I already knew that it's gonna be the plumbing. So it was that I got the needle stuck behind my hand. I closed my eyes because it actually hurts less.
I got admitted at 3pm. I fear that it might be enough time to meet my old nemesis rocephine. The day wears on and no sight of rocephine. Woohoo I survive a day.
Sunday, March 29, 2009
what goes around...
I got home. Sweet. All I wanted to do was lay on the sofa and watch TV. Something I had not been able to do for over a week. A day later I started to get a headache and I was sweating hot and cold. Just my luck I got the flu. So i think nothing of it and just wait it out. The usual paracetamol should do the trick.
A week later it tailed out but I started getting a runny nose. Especially in my left nostril. I also managed to pull out a big booger. This biggest probably in the world, a world record, but it was a blood clot. It was an ugly thing, image jabba the hutt but black. I should've preserved it but I lost it. A few days later a genuine big booger. But something strange was happening. The right nostril was leaking more than the left and in most days the left nostril was dry. This was not good. eventually the left nostril was dry but the right leaked something that was not mucus but rather, liquid. I had a bad feeling this was brain fluid.
Regardless of what I did it still dripped. I was hoping that it would go away but it was constant. I had a follow up appointment on Monday so I was just hoping it would go away. But it didn't. On the day of the appointment it still dripped. It had a mind of its own. Enticing me to think it was ok but whenever I felt it was ok it leaked. Whenever I thought it was reduced, it increased. It driving me nuts. If I was a sim some higher being must have been really torturing me good.
I saw the doctor and she asked whether there was any leakage. I said yep. She asked whether it was a lot, on a decrease, increase? I said decrease, sort of. But at that moment a drop leaked out. So she asked the boss Mr Cheang. She says well, it's back to the ward I go. What! Now now? Sure was. She filled the form and off to admission I go. I couldn't believe it. What twist of horrible fate this was. I had a feeling I was going back to hospital but not now as in now. I didn't bring anything, I wasn't prepared for it. Man I couldn't believe it.
So I go to admit myself in disbelief. I ask for third class thinking I would only need a bed, nothing unusual no operation (so I thought) anyways by this time my finances was rock bottom. I couldn't afford second class, there wasn't much difference anyways (thanks to the british for introducing this class crap, funny how they don't apply it to themselves anymore, now they just call it economy class and business class).
And off to the ward I go.
A week later it tailed out but I started getting a runny nose. Especially in my left nostril. I also managed to pull out a big booger. This biggest probably in the world, a world record, but it was a blood clot. It was an ugly thing, image jabba the hutt but black. I should've preserved it but I lost it. A few days later a genuine big booger. But something strange was happening. The right nostril was leaking more than the left and in most days the left nostril was dry. This was not good. eventually the left nostril was dry but the right leaked something that was not mucus but rather, liquid. I had a bad feeling this was brain fluid.
Regardless of what I did it still dripped. I was hoping that it would go away but it was constant. I had a follow up appointment on Monday so I was just hoping it would go away. But it didn't. On the day of the appointment it still dripped. It had a mind of its own. Enticing me to think it was ok but whenever I felt it was ok it leaked. Whenever I thought it was reduced, it increased. It driving me nuts. If I was a sim some higher being must have been really torturing me good.
I saw the doctor and she asked whether there was any leakage. I said yep. She asked whether it was a lot, on a decrease, increase? I said decrease, sort of. But at that moment a drop leaked out. So she asked the boss Mr Cheang. She says well, it's back to the ward I go. What! Now now? Sure was. She filled the form and off to admission I go. I couldn't believe it. What twist of horrible fate this was. I had a feeling I was going back to hospital but not now as in now. I didn't bring anything, I wasn't prepared for it. Man I couldn't believe it.
So I go to admit myself in disbelief. I ask for third class thinking I would only need a bed, nothing unusual no operation (so I thought) anyways by this time my finances was rock bottom. I couldn't afford second class, there wasn't much difference anyways (thanks to the british for introducing this class crap, funny how they don't apply it to themselves anymore, now they just call it economy class and business class).
And off to the ward I go.
exit stage left
A day or two later Mr cheang visits and ask if I am leaking. I said no, so it was time to leave. After 8 days I get my freedom. I say goodbye to rocephine, the sadist, the IV line the food, everything. I ain't gonna come back! Or so I thought.
I do go with some souvenirs.
Stitches.
A bruised neck from when my scalp was cut and the blood flow blocked. Or was that the other IV line that was piped via my neck.
Bruised wrists. don't know why this happened. Maybe it happened when I was in the operation room. Must've been something 'good'.
The tiny blue dot on the middle is where the needle went in to suck my brain dry. The irritation marks you cannot believe how itchy it was. Plus some pimples due to the steroids.
I also had sensitive veins in my ankles from where they put IV lines. Didn't have bruises there though.
I do go with some souvenirs.
Stitches.
A bruised neck from when my scalp was cut and the blood flow blocked. Or was that the other IV line that was piped via my neck.
Bruised wrists. don't know why this happened. Maybe it happened when I was in the operation room. Must've been something 'good'.
The tiny blue dot on the middle is where the needle went in to suck my brain dry. The irritation marks you cannot believe how itchy it was. Plus some pimples due to the steroids.
I also had sensitive veins in my ankles from where they put IV lines. Didn't have bruises there though.
family sucks
I don't understand some attitudes of family members. They think that since they are somehow related to me that they can intrude into my privacy on the pretence of 'helping'.
These assholes have more respect for their friends then for me. Instead of asking me private questions about my finances, how much money I have in the bank, my sex life, they ask my wife. What inconsiderate bastards. These questions are irrelevant to helping. If they had asked me I would've told them to screw themselves. This really PISSED me off. I had to send them a few words via SMS and will follow it up when I see them.
One of my friends gave me some money without any conditions.I told him it was too much. He said if he won't help who would he help. Bless his soul. The best thing you can give to someone who is honestly giving is to accept. So that's what I did with many thanks. That money went a long long way, I made it stretch very far seeing as at this point I was about 4 months without income.
The best way to help someone in need is to say what you can offer, not pry then offer nothing.
These assholes have more respect for their friends then for me. Instead of asking me private questions about my finances, how much money I have in the bank, my sex life, they ask my wife. What inconsiderate bastards. These questions are irrelevant to helping. If they had asked me I would've told them to screw themselves. This really PISSED me off. I had to send them a few words via SMS and will follow it up when I see them.
One of my friends gave me some money without any conditions.I told him it was too much. He said if he won't help who would he help. Bless his soul. The best thing you can give to someone who is honestly giving is to accept. So that's what I did with many thanks. That money went a long long way, I made it stretch very far seeing as at this point I was about 4 months without income.
The best way to help someone in need is to say what you can offer, not pry then offer nothing.
Saturday, March 28, 2009
a drain on the brain
Without the urine bag I had 1 bag left. The CSF lumbar drain bag. This meant that I can have more mobility. I wasn't about to take a shower for fear that the lumbar drain might get infected, after all, this is poking into my spine. Mr cheang came around asking if I had any CSF leakage from my nose, I said no. The lumbar drain had been blocked for a while so if it were to leak I would have. So he says that it should be ok to remove the drain. I was not too keen on this as if it were to leak again puting that thing back in must be agony and not to mention dangerous. I wasn't too keen on anyone buggering around in my spine. But it was to go. On the bright side the sooner it goes the sooner I go home. Then he checked my calf and thigh muscles. He said when I get home I should do some exercises. Who me? I was fit as a fiddle. Did the exercises before being warded.
So it was to go. Dr thinnesh had the privilege of doing it. So I go to the treatment room to get it out. I laid on the bed so I couldn't see how they did. I felt some stinging feeling. Don't know if there was something strong holding it. Then one more sting to get the needle out and that was it. I was FREE! He then sprayed something probably antibacteria or something.
I was now able to move around, shower, poo etc. (I was wearing diapers all this while and I had been avoiding heavy foods to avoid soiling my daipers. There was no way I was going to poo in diapers.) I then realise what the doctor meant. My muscles had atrophied. I couldn't even squat. Damn. This is gonna take a while to recover. No wonder he said I will need to exercise. What a burden.
So it was to go. Dr thinnesh had the privilege of doing it. So I go to the treatment room to get it out. I laid on the bed so I couldn't see how they did. I felt some stinging feeling. Don't know if there was something strong holding it. Then one more sting to get the needle out and that was it. I was FREE! He then sprayed something probably antibacteria or something.
I was now able to move around, shower, poo etc. (I was wearing diapers all this while and I had been avoiding heavy foods to avoid soiling my daipers. There was no way I was going to poo in diapers.) I then realise what the doctor meant. My muscles had atrophied. I couldn't even squat. Damn. This is gonna take a while to recover. No wonder he said I will need to exercise. What a burden.
no bags please
don't know why I am having so much trouble with accessing google and yahoo. Publishing blogs is also a problem. This popped up after I did an update on OSX. I'm sure something bad happened or have my ISP given be the finger? Also the date on my pc screwed up because the cmos battery went down, can my certificates have any effect?
To continue it was time to remove the urine bag, including the tube. This is a good thing, it means I am closer to going home but I have heard stories from the ward that this is going to be an experience. One guy mentioned how painful it was to remove but said it depended on whether the balloon was deflated and who was doing it. There was also the post removal. One guy said that it was painful to urinate (excruciating actually). I've had painful urination before, the burning sensation and it IS excruciating. Urination is not an off on thing, once it comes out it gushes for a while and is difficult to quell.
Well I have no choice just trainees are going to do it! I ask them whether they have done this before, they said yeah. That's reassuring, but how pleasant is this going to be?
I take off my standard issue pants, actually this will be the first time I will have seen it because all this time I have not looked at it. I was surprised that the tube seemed relatively large for the hole that it was going into. Poor thing. Morning glories are also uncomfortable, I have to think about unpleasant things to deflate it. I do feel a tingling at the end of my 'willie'. I know what that means. Wonder if they talk about peoples sizes later in private? You know fred astaire was small but he can dance! Anyways she took a syringe and said she was going to deflate the balloon. Balloon? What the hell is a balloon doing in my bladder? Then I noticed a branch in the tube where the syringe goes. Interesting. Well she sucked all the water out of the balloon via the access tube. Then signalled she was about to remove the tube. I ask if it will hurt, she says no but adds take a deep breath. Huh? That usually mean pain. Well, what can I do? She was gonna pull it and there was nothing I can do. So she starts pulling, it wasn't painful, rather smooth but uncomfortable. The tip passed some sensitive places, the prostate, the G spot, the perineum, etc. It WAS uncomfortable. Can't imagine this tube going in although I have heard my bed neighbour getting it and sounded like it was irritating and painful.
Then it was out. It was long! Oh well it's out now and hope it's the last I'll see of it. The tip did have something like a deflated balloon at the end of it. Now I have the choice of going to the toilet and let some out probably painfully but a little or I wait as long as I can later and let the tip of my willie recover but it's gonna gush uncontrollably. I took the latter option, it's a chance. So that night I had to go, I couldn't hold it back any longer. Thoughts of agony from other 'users' crossed my mind so I try a little as best as I can and felt painless, so I let it all out, relieved like you wouldn't believe.
To continue it was time to remove the urine bag, including the tube. This is a good thing, it means I am closer to going home but I have heard stories from the ward that this is going to be an experience. One guy mentioned how painful it was to remove but said it depended on whether the balloon was deflated and who was doing it. There was also the post removal. One guy said that it was painful to urinate (excruciating actually). I've had painful urination before, the burning sensation and it IS excruciating. Urination is not an off on thing, once it comes out it gushes for a while and is difficult to quell.
Well I have no choice just trainees are going to do it! I ask them whether they have done this before, they said yeah. That's reassuring, but how pleasant is this going to be?
I take off my standard issue pants, actually this will be the first time I will have seen it because all this time I have not looked at it. I was surprised that the tube seemed relatively large for the hole that it was going into. Poor thing. Morning glories are also uncomfortable, I have to think about unpleasant things to deflate it. I do feel a tingling at the end of my 'willie'. I know what that means. Wonder if they talk about peoples sizes later in private? You know fred astaire was small but he can dance! Anyways she took a syringe and said she was going to deflate the balloon. Balloon? What the hell is a balloon doing in my bladder? Then I noticed a branch in the tube where the syringe goes. Interesting. Well she sucked all the water out of the balloon via the access tube. Then signalled she was about to remove the tube. I ask if it will hurt, she says no but adds take a deep breath. Huh? That usually mean pain. Well, what can I do? She was gonna pull it and there was nothing I can do. So she starts pulling, it wasn't painful, rather smooth but uncomfortable. The tip passed some sensitive places, the prostate, the G spot, the perineum, etc. It WAS uncomfortable. Can't imagine this tube going in although I have heard my bed neighbour getting it and sounded like it was irritating and painful.
Then it was out. It was long! Oh well it's out now and hope it's the last I'll see of it. The tip did have something like a deflated balloon at the end of it. Now I have the choice of going to the toilet and let some out probably painfully but a little or I wait as long as I can later and let the tip of my willie recover but it's gonna gush uncontrollably. I took the latter option, it's a chance. So that night I had to go, I couldn't hold it back any longer. Thoughts of agony from other 'users' crossed my mind so I try a little as best as I can and felt painless, so I let it all out, relieved like you wouldn't believe.
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