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.
Wednesday, October 28, 2009
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.
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