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.
Saturday, October 31, 2009
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.
Subscribe to:
Posts (Atom)