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.
Sunday, November 15, 2009
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.
Subscribe to:
Posts (Atom)