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.
Wednesday, November 4, 2009
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.
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