Next wednesday, doctor day.
I see the doctor, mention my ailments, tiredness, fatigue. She said it was normal. What about the moisturiser (sorbelene). I was lazy, better use it, twice a day, otherwise the skin will become a rash and will require antibiotic if left alone. She mention that better to use the moisturiser twice a day before things get complicated. Blah blah so I thought. She does say that it's startng to look red. She must be on weed or something I didn't notice anything.
The dexa will also have to be reduced. The side effects were too many. But I liked the side effects. What can I do. I mention the headache that may happen and she prescribed a morphine like pain killer. As long as there is no pain.
I got home and look in the mirror in the other bathroom. Bam! With the lighting in this room I saw the area around my nose and forehead WAS red and dark. I BETTER make serious attempt using the sorbelene before it becomes bad.
Monday, January 18, 2010
Friday, January 15, 2010
laziness
It's Sunday and I was getting a little lazy with the medication. I was starting to skip my midday dexa.
I got a little headache, laying on my back watching tv. This little headache started to grow and grow and didn't go. Next thing I know it was killing me. I was bed bound, for days. No appetite, no relief. Makcik also came to visit. Help put wet towel on my head. It was nice, it helped. Mum was around to help too. The peeled apple helped, I needed to eat but didn't have an appetite for anything.
I still had to go for the treatment though. I just had to suck it in.
Later on wednesday (meet the doctor day) I see Dr Melanie. I mention the headache and she prescribe something for the headache a paracetamol codeine cocktail. It helped and I sure finished it. I was also anxious to know of the biopsy results. The reception said that they were not allow to release that info only the doctor was allow to release it. Funny, the information belongs to me and I cannot read it? Anyways, it was cancer. No doubts about it now, metastasis has occurred.
I new this was a lack of steroids. So I just take the usual 2 and why not 3 while I'm at it. I'm in pain, why not take the extra to reduce the swelling.
End of the week the headache was gone. Thank god for that.
I got a little headache, laying on my back watching tv. This little headache started to grow and grow and didn't go. Next thing I know it was killing me. I was bed bound, for days. No appetite, no relief. Makcik also came to visit. Help put wet towel on my head. It was nice, it helped. Mum was around to help too. The peeled apple helped, I needed to eat but didn't have an appetite for anything.
I still had to go for the treatment though. I just had to suck it in.
Later on wednesday (meet the doctor day) I see Dr Melanie. I mention the headache and she prescribe something for the headache a paracetamol codeine cocktail. It helped and I sure finished it. I was also anxious to know of the biopsy results. The reception said that they were not allow to release that info only the doctor was allow to release it. Funny, the information belongs to me and I cannot read it? Anyways, it was cancer. No doubts about it now, metastasis has occurred.
I new this was a lack of steroids. So I just take the usual 2 and why not 3 while I'm at it. I'm in pain, why not take the extra to reduce the swelling.
End of the week the headache was gone. Thank god for that.
time to glow
This was a while back as I have been a little lazy with the blog.
This is it, radiotherapy treatment number 1. My wife and I took the bus to the hospital. I had an appointment card with a barcode. I scanned it and this registers my arrival at the 'tuart' unit. There are multiple units at the center. I sit a few minutes and then called in. The nurse introduces herself, and as usual I forget 2 minutes later. There seems to be new nurses every few days anyways. Although it would be nice to remember a name or two but this was not to be the case.
I mentioned to the nurse I had some nausea and she gave me an under the tongue pill. She said it was expensive so I was not going to get it...for free or otherwise. Just had to say I was nausious on the day and I would get a pill.I find it hard to believe these pills as if I'm gonna throw (up), throw up.
I lay on the slab, get positioned using the lasers and the mask placed to keep me in place. Then they ran out. I guess it wasn't safe. The machine moves as it shoots radiation at me. Straight through the head. 5 minutes later it was done.
Seems more work to get here than the therapy, getting up, getting ready, travelling just for 5 minutes of therapy. Oh well, better than surgery.
This is it, radiotherapy treatment number 1. My wife and I took the bus to the hospital. I had an appointment card with a barcode. I scanned it and this registers my arrival at the 'tuart' unit. There are multiple units at the center. I sit a few minutes and then called in. The nurse introduces herself, and as usual I forget 2 minutes later. There seems to be new nurses every few days anyways. Although it would be nice to remember a name or two but this was not to be the case.
I mentioned to the nurse I had some nausea and she gave me an under the tongue pill. She said it was expensive so I was not going to get it...for free or otherwise. Just had to say I was nausious on the day and I would get a pill.I find it hard to believe these pills as if I'm gonna throw (up), throw up.
I lay on the slab, get positioned using the lasers and the mask placed to keep me in place. Then they ran out. I guess it wasn't safe. The machine moves as it shoots radiation at me. Straight through the head. 5 minutes later it was done.
Seems more work to get here than the therapy, getting up, getting ready, travelling just for 5 minutes of therapy. Oh well, better than surgery.
Tuesday, December 15, 2009
you are what you eat
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.
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.
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.
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