During the day I get a call from the hospital that my MRI was on a wednesday, i said my next appointment at the radio clinic was wednesday. She then said I call you back. Later she calls and say keep the MRI at ipoh at 8 and reschedule the radio. The MRI appointment was as usual a precious item, ie highly overbooked, don't miss it. She says the the radio will call you back.
I decide to stay at a hotel as it will cost almost as much to go home and come back but wake up at 5am or something. Next day I go straight to the hospital. I go to neuro to hand the letters. I wait, I wait, it's 8. Where is everyone. I sneak a peak to find a doc and find one. It just happens to be the doc I was supposed to see. I hand the letters and my appointment card and get the MRI letter and go to the imaging dept.
I go to the MRI area and change to the usual patient garb but get to keep my underwear. Funny, I happen to be wearing underwear today, its not the usual case. I mention the metal screws so they spend the next 15 minutes trying to get the metal detector working ie find the misplaced batteries. Eventually they just take the neuro's word that it's MRi safe and send me in.
It's nosy in the machine. After a while I get out but the doc says waiting a minute, injection time. Damn I thought I wasn't going to get the contrast. Lucky I didn't know otherwise I would have been anxious all day. But I sucked it in. I was a little uncomfortable as usual. Then back in.
Another 15 mins then it was done and get out.
I go back to the neuro and was told to deliver the other letter at the pathology dept. After handing that over I was done.
Friday, May 1, 2009
second time round
The next week, same thing, drive 3 times around the hospital looking for parking. At 10 the staff parking opens to the public. After 30 minutes plus looking for parking the staff parking opens and we take one. I go to the clinic.
I see the nurse who says wait here. I take a trip on a massaging chair while I wait. Wonder why this chair thing costs so much to buy. By the time it was my turn, the machine broke down. Damn, what a wasted trip. I need to retry next week, what's more I have to deliver 2 letters to Ipoh to get an MRI and try to get a sample of a sample they took from my tumour.
Then I go to work, waste of a morning.
I see the nurse who says wait here. I take a trip on a massaging chair while I wait. Wonder why this chair thing costs so much to buy. By the time it was my turn, the machine broke down. Damn, what a wasted trip. I need to retry next week, what's more I have to deliver 2 letters to Ipoh to get an MRI and try to get a sample of a sample they took from my tumour.
Then I go to work, waste of a morning.
radio therapy
the week I go to see the radiotherapy and oncology specialist. I was late again. The lack of parking didn't help either. It's just that there was no parking. I wonder why they made the LRT station at kg baru. There's nothing there! Why didn't they put it where it would be of great use, the hospital. It's the main hospital in the country! Such small brains.
I get there at 10 for an appointment at 9. It was packed. I sat next to a guy who has a ticket 2009. He says he's been here since 9. The current serviced number is 2001, my number was 2011. My god at this rate I won't see the doc till dinner time.
I did finally see the doc. She just asks some simple questions about my journey and that was it. The doc decided on radiotherapy. Go see the radio dept.
I go there and they give me wednesday next week. I will need to undergo a ct simulation for them to plan where to shoot the radio active stuff. And I will also need a mask to put on my head, to keep my head still and also to mark where to shoot. Better than marking my head.
Then that was it. I go. Nothing much I will also get a contrast solution when scanned. I hate contrast solution, it means a needle. I will also need to take some steroids the night before the scan and fast.
I get there at 10 for an appointment at 9. It was packed. I sat next to a guy who has a ticket 2009. He says he's been here since 9. The current serviced number is 2001, my number was 2011. My god at this rate I won't see the doc till dinner time.
I did finally see the doc. She just asks some simple questions about my journey and that was it. The doc decided on radiotherapy. Go see the radio dept.
I go there and they give me wednesday next week. I will need to undergo a ct simulation for them to plan where to shoot the radio active stuff. And I will also need a mask to put on my head, to keep my head still and also to mark where to shoot. Better than marking my head.
Then that was it. I go. Nothing much I will also get a contrast solution when scanned. I hate contrast solution, it means a needle. I will also need to take some steroids the night before the scan and fast.
Tuesday, April 21, 2009
stick a finger in your eye
Next week comes along and I have to see the eye doc, late. The nurse basically asks why are you so damn late. Sorry.
I do the spelling test. 6/9. Then see the doc. She says ok get this eye poison in there first. I get the eye drops. After a while I see the doc again. Now for the more irritating eye drops. Damn it stings a little. Then she takes a look. Looks the same left and right. She asks other questions, nothing of much interest. She asked what tests were done last time, I say the peripheral. She asked whether I did the glasses test. I say not as a pair but individually. Then she says see you in 6 months.
The nurse asks for my appointment card. I said don't have it, I ask the doc, she says don't have. Shoot. Where is it. The nurse ask who gave the ticket, she don't have it. Then I remember my pocket have it! The nurse then comments you did it on purpose or just absent minded. I says I will need another operation. She says you got operated on I says yes and I should try to get nootropil from the docs. She chuckles and give me my card but add don't be late.
I do the spelling test. 6/9. Then see the doc. She says ok get this eye poison in there first. I get the eye drops. After a while I see the doc again. Now for the more irritating eye drops. Damn it stings a little. Then she takes a look. Looks the same left and right. She asks other questions, nothing of much interest. She asked what tests were done last time, I say the peripheral. She asked whether I did the glasses test. I say not as a pair but individually. Then she says see you in 6 months.
The nurse asks for my appointment card. I said don't have it, I ask the doc, she says don't have. Shoot. Where is it. The nurse ask who gave the ticket, she don't have it. Then I remember my pocket have it! The nurse then comments you did it on purpose or just absent minded. I says I will need another operation. She says you got operated on I says yes and I should try to get nootropil from the docs. She chuckles and give me my card but add don't be late.
sniff it, sniff it real hard
The next day it was time to see the ENT, late again. I was starting to hate this late thing but first the neuro.
I bump by the doc from yesterday. He said the paperwork was ready. ask about the medic alert bracelet. He said they don't provide for my condition. They only provide it for diabetics and allergies. Screwed up man. I always thought it was for any medication condition. Kind of makes it useless. Not very flexible.
So I wait for the paperwork then go but I get a comment from the nurse not to be so late next time. OK.
I wait for the ENT. I know it's late. Hope I'm lucky. I see him and this time I sniffed more :) . Don't think it makes any difference. I stiff feel the same. The doc looks at the end of my nostril. I see that it is definitely grown from left to right. It's totally blocked. The path to the brain can also be visible and at the end of the tiny opening was my brain throbbing.
Oh well, what to do.
I tell him that I will see the oncologist next week, just after the eye doc.
He says ok, see you in 3 months.
I bump by the doc from yesterday. He said the paperwork was ready. ask about the medic alert bracelet. He said they don't provide for my condition. They only provide it for diabetics and allergies. Screwed up man. I always thought it was for any medication condition. Kind of makes it useless. Not very flexible.
So I wait for the paperwork then go but I get a comment from the nurse not to be so late next time. OK.
I wait for the ENT. I know it's late. Hope I'm lucky. I see him and this time I sniffed more :) . Don't think it makes any difference. I stiff feel the same. The doc looks at the end of my nostril. I see that it is definitely grown from left to right. It's totally blocked. The path to the brain can also be visible and at the end of the tiny opening was my brain throbbing.
Oh well, what to do.
I tell him that I will see the oncologist next week, just after the eye doc.
He says ok, see you in 3 months.
there's nothing wrong with you
So monday comes along and I have to see the Neuro.
While I wait I see Dr Thinnesh. He greets me and asks whether I am still leaking. I say nope and the medicine did it's trick. He says good, still on the brew. I said no, it's finished. I ask whether I'll get chemo or radiotherapy because the ENT asked. He said that depends on the onkologist. They vist once a month .... then the nurses calls me in. I make my excuse and see the neuro.
It was the other doctor (I alsway forget to look at his name tag). He asks whether I was leaking. I said no. He was happy. I ask about the chemo or radio. He says I will need to see the onkologist. He says he will make an appointment today. I say the ENT asked and I will see him tomorrow. He said it's up to the onkologist. He'll give me the details tomorrow plus the reference letter. I say I'll visit tomorrow before the ENT.
I ask about the medic alert bracelet. My concern was that as my right nostril was blocked and worst exposes my brain whether I can get this thing and wear it to prevent emergency staff from poking a feeding tube or de-airing tube in the right nostril. You never know, this can happen if I have an accident. He said he'll ask. He said you can put a note in your wallet. I said the emergency staff may not go through that.
While I wait I see Dr Thinnesh. He greets me and asks whether I am still leaking. I say nope and the medicine did it's trick. He says good, still on the brew. I said no, it's finished. I ask whether I'll get chemo or radiotherapy because the ENT asked. He said that depends on the onkologist. They vist once a month .... then the nurses calls me in. I make my excuse and see the neuro.
It was the other doctor (I alsway forget to look at his name tag). He asks whether I was leaking. I said no. He was happy. I ask about the chemo or radio. He says I will need to see the onkologist. He says he will make an appointment today. I say the ENT asked and I will see him tomorrow. He said it's up to the onkologist. He'll give me the details tomorrow plus the reference letter. I say I'll visit tomorrow before the ENT.
I ask about the medic alert bracelet. My concern was that as my right nostril was blocked and worst exposes my brain whether I can get this thing and wear it to prevent emergency staff from poking a feeding tube or de-airing tube in the right nostril. You never know, this can happen if I have an accident. He said he'll ask. He said you can put a note in your wallet. I said the emergency staff may not go through that.
Sunday, April 19, 2009
light at the end of the nostril
It was ENT time. I was late 12ish and the appointment was for 10. Hope no-one complained. When I went to the waiting room the nurse ecognise me and said the docs out for lunch, come back at 2pm. Not much I can do, just have to hang around and accept the 'punishment'.
2pm comes by and in I went. He managed a 'how are you' I said good, after all no CSF leak. His office was more quiet now and he seems to have more time. In went the 'anaesthetic' the cocaine. I took a sniff, wonder if it 'helps'. Don't feel any 'happier'.
Then up went the scope. I see that there is flesh from the left wall connected to the right wall. The passage now seems blocked by growth, there was 3 small openings. One seemed to go to a dead end, one to the base skull and the other I don't know. Looking at this it appears that there is no way a feeding tube can go up there. He then zoomed in to the central opening. It was dark but there seems to be a bubble like thing at the end. It was also throbbing. He says 'that's your brain throbbing'. I'm actually looking at my brain! The throbbing coincides with my heart beat so it looks like the blood rush from the my heart is showing through the hole in the base skull. I think to myself, this looks bad, the central opening goes straight to my brain. If I go into a coma hospital staff may insert a feeding tube throught the nose. If they put it through the right nostril then it will go straight to and possibly through my brain.
The white stuff that I thought was some kind of gel was still visible. This time he said he was going to remove it with tweezers. Ok. I look on as he pinches the thing and pull it out. It bled a little. It was a small thing. I thought it was bigger. Under it seems growth. Permanent growth that blocks my nostril. There was now no way anything can go through there anymore.
The doc says I'll see you in a few days. He asks if I'm gonna get radiotherapy or chemo. I said I'll see the neuro on monday, I'll find out then and let you know on tuesday.
I ask him about a medic alert badge to inform medics I cannot have tubes entering the right nostril. He said he didn't know. I voice my concern about the nostril he said he can right a memo and put it in my wallet. I said ok, maybe I can write something obvious and attention grabbing so someone can read the memo.
2pm comes by and in I went. He managed a 'how are you' I said good, after all no CSF leak. His office was more quiet now and he seems to have more time. In went the 'anaesthetic' the cocaine. I took a sniff, wonder if it 'helps'. Don't feel any 'happier'.
Then up went the scope. I see that there is flesh from the left wall connected to the right wall. The passage now seems blocked by growth, there was 3 small openings. One seemed to go to a dead end, one to the base skull and the other I don't know. Looking at this it appears that there is no way a feeding tube can go up there. He then zoomed in to the central opening. It was dark but there seems to be a bubble like thing at the end. It was also throbbing. He says 'that's your brain throbbing'. I'm actually looking at my brain! The throbbing coincides with my heart beat so it looks like the blood rush from the my heart is showing through the hole in the base skull. I think to myself, this looks bad, the central opening goes straight to my brain. If I go into a coma hospital staff may insert a feeding tube throught the nose. If they put it through the right nostril then it will go straight to and possibly through my brain.
The white stuff that I thought was some kind of gel was still visible. This time he said he was going to remove it with tweezers. Ok. I look on as he pinches the thing and pull it out. It bled a little. It was a small thing. I thought it was bigger. Under it seems growth. Permanent growth that blocks my nostril. There was now no way anything can go through there anymore.
The doc says I'll see you in a few days. He asks if I'm gonna get radiotherapy or chemo. I said I'll see the neuro on monday, I'll find out then and let you know on tuesday.
I ask him about a medic alert badge to inform medics I cannot have tubes entering the right nostril. He said he didn't know. I voice my concern about the nostril he said he can right a memo and put it in my wallet. I said ok, maybe I can write something obvious and attention grabbing so someone can read the memo.
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