They finally let me out yesterday lunchtime! and many thanks to my brother Mark for coming to my rescue and getting me out of there!
I had a quiet afternoon taking stock of myself and getting used to being home again.
After a great night's sleep I awoke feeling completely well, not a sign of feeling ill or off colour. My only symptom seems to be the fatigue. I can only walk short distances and have to avoid stairs. Any thing other than a short walk leaves me exhausted and needing to sit down. This isn't too bad as from past experience I know it passes in time. The major plus is the total absence of nausea.
My platelet levels must have dropped pretty low at some stage last week. My legs have thousands of small purple marks all over them (petechia) where the blood has leaked into surrounding tissue due to the higher blood pressure in my lower legs. This has only occurred on me once before in 2005 when I had a count of under 5, nearing fatal level. Hopefully It's now a bit higher than that as I had another unit of platelets on Thursday.
Today, as I will do everyday, I have been into ward one and had my blood taken. If there are any problems they will call me back in for a transfusion.
Today is also day ten post stem cell transplant. On a typical patient blood counts should start to recover from here on out. However I'm not typical in that my stem cell harvest was smaller than normal so it may take a bit longer. Would be nice if it didn't.
Saturday, February 28, 2009
Thursday, February 26, 2009
Two posts today!
Well I had to really, you see I made a complete liar of myself by saying I felt OK.
I really hate the food here, and I associate it with feeling ill. A couple of times I have refused to lift the lids on the plates because just the sight of food can make me feel like throwing up, so I'll only drink the soup and avoid even looking at the main.
This was the case today. I was sitting in my room feeling really quite good when the meal tray came in. I figured I had better drink the vegetable soup as I needed the sustenance.
I drank it all too.. tasted terrible though. Then all of a sudden Bam! I threw the whole lot up!. Luckily I managed to grab one of the plastic containers they have here for such incidences. I filled it to the brim.. almost a litre I'd say. Bugger!
Oddly enough I felt great after that, perhaps my body decided to reject the soup ;-)
So it's back to the 'Up & Go's' for me, I can wait another day before looking under the hood of another tray of hospital food.
The nurse came and saw me too, she added another couple of meds to my lineup.
I'm now on an antibiotic, an anti-fungal and an antiviral drug. ...Nothing can grow on this cold, barren landscape.. (Hmm where have I heard that before)
I also start back on my old friend the GCSF to help boost my non-existent white cell count. So it's more tummy injections for a week or so.
That's about it... as you were :-)
I really hate the food here, and I associate it with feeling ill. A couple of times I have refused to lift the lids on the plates because just the sight of food can make me feel like throwing up, so I'll only drink the soup and avoid even looking at the main.
This was the case today. I was sitting in my room feeling really quite good when the meal tray came in. I figured I had better drink the vegetable soup as I needed the sustenance.
I drank it all too.. tasted terrible though. Then all of a sudden Bam! I threw the whole lot up!. Luckily I managed to grab one of the plastic containers they have here for such incidences. I filled it to the brim.. almost a litre I'd say. Bugger!
Oddly enough I felt great after that, perhaps my body decided to reject the soup ;-)
So it's back to the 'Up & Go's' for me, I can wait another day before looking under the hood of another tray of hospital food.
The nurse came and saw me too, she added another couple of meds to my lineup.
I'm now on an antibiotic, an anti-fungal and an antiviral drug. ...Nothing can grow on this cold, barren landscape.. (Hmm where have I heard that before)
I also start back on my old friend the GCSF to help boost my non-existent white cell count. So it's more tummy injections for a week or so.
That's about it... as you were :-)
Stuck here for another day!
Oh bugger! Everyone decided I was going home today... everyone that is except Dr D'Souza.
My heart rate is quite fast.. around 100bpm. Which can mean an infection is starting, or it can mean any number of other things. It could just mean I have bugger all blood in my veins following high dose chemo and a body wracked by a week of gastric illness (which would be my bet), however the good Dr wants to play it safe and keep me in another day to be sure.
You can't hold it against him, he's only trying to keep me well.
Anyway that means another day in this place and it's barely tolerable when you're sick, but when you actually feel OK it's no fun at all. Of the last 7 weeks I have spent almost 4 of them here. But to be fair I am I guess reasonably ill. Sure today I have no feelings of nausea and feel reasonably good but if I stand up too fast I almost pass out. I can only walk about 50 metres before my heart starts racing and I feel breathless (I just tested that and it's actually once around the ward ..so maybe 80metres). This morning just having a shower left me completely worn out.
If I sit perfectly still and close my eyes it is possible to convince myself that I am completely healthy and that's important because that's my benchmark, the basis for deciding how sick I am.
So take last Sunday for instance, (assuming I was actually awake).. If I had closed my eyes and took stock of how I felt I would have been nauseous, stomach cramp, headache, dizzy, racing heart, and delirious. Not a day that I would have said I was "OK".
But today I am "OK" and that's a good thing.. I'd better go and see what mischief I can cause while I can. :-)
My heart rate is quite fast.. around 100bpm. Which can mean an infection is starting, or it can mean any number of other things. It could just mean I have bugger all blood in my veins following high dose chemo and a body wracked by a week of gastric illness (which would be my bet), however the good Dr wants to play it safe and keep me in another day to be sure.
You can't hold it against him, he's only trying to keep me well.
Anyway that means another day in this place and it's barely tolerable when you're sick, but when you actually feel OK it's no fun at all. Of the last 7 weeks I have spent almost 4 of them here. But to be fair I am I guess reasonably ill. Sure today I have no feelings of nausea and feel reasonably good but if I stand up too fast I almost pass out. I can only walk about 50 metres before my heart starts racing and I feel breathless (I just tested that and it's actually once around the ward ..so maybe 80metres). This morning just having a shower left me completely worn out.
If I sit perfectly still and close my eyes it is possible to convince myself that I am completely healthy and that's important because that's my benchmark, the basis for deciding how sick I am.
So take last Sunday for instance, (assuming I was actually awake).. If I had closed my eyes and took stock of how I felt I would have been nauseous, stomach cramp, headache, dizzy, racing heart, and delirious. Not a day that I would have said I was "OK".
But today I am "OK" and that's a good thing.. I'd better go and see what mischief I can cause while I can. :-)
Wednesday, February 25, 2009
Bouncing back!
Phew! What a cool feeling it is to just feel like I'm seven days post poisoning with cytotoxic chemicals!. Rather than the nauseating, gut churning, green gilled, delirium filled world of a couple of days ago!
Today I just feel off-colour, which is exactly the way I should be feeling at this point in time.
I have no energy and if I stand up too quickly I almost faint, but that too is expected. At least my brain has come back to life.
To give you some idea of how it screws with your mind, Saturday and Sunday I was unable to hold any sort of thought in my head without it becoming surreal and melting away into some sort of nonsensical garbage. A bit like your thought patterns just as you nod off to sleep when really tired. And as for sleeping, which I did almost continuously, you don't dream as such, you just get some sort of abstract bizarre theme in your head and it goes round and round continuously like a record stuck in a groove.
By Monday night the needle would actually skip out of the track and I was able to have surreal nonsensical "bad dreams" Oh yay!.
Last night was the first night whereby I actually got a great night's sleep and woke with mental clarity.
I jumped out of bed, (yes, too quickly), and had to sit down again before I fell down, but then paced myself and had a shower before getting fully dressed. I've always said that hospitals are for sick people and certainly the last three times I've been here I always spent my days fully dressed. This time I have been bed ridden and today is the first time I been out of my "sick person" attire of shorts and a tee-shirt.
I got dressed just in time too, as the Doctors popped in the door about two seconds after I pulled my jeans on. Good news.. They have isolated the exact type of bug and can now stop the broad spectrum IV antibiotics and replace it with a tablet that is known to also be effective on that type of bug. They expect that I can go home tomorrow but not before getting another platelet transfusion before I go. (I wonder who all these kind people are whose blood it is that I'm soaking up?) .. oh and another aside.. cost to the taxpayer for me getting sick this week? approx $10K including the cost of the transfusions.. Tax $$$ well spent I say! :)
It will be nice to get outside and remember what it is to be human rather than a green-gilled glob of yukky-ness.
I think the tea-lady caught the "Up & Go" thief too! She's way too nice to tell me herself but as it all happened outside my door I kind of had an audible ringside seat to the nabbing.
Yesterday afternoon at around 3:30 (IE: just after school) I heard her growl at a young visitor who was here to see their parent. I think she had laid in wait on her suspected culprit and when they made a bee-line straight to the 'patient only' fridge she pounced.
I could hear things like "poor Mr Scanlan this..." and "Name on packaging that.." following by much plea-ing of ignorance. Case solved.
OK, The string is a lot longer today but it still has an end.. Time to relax with some daytime television... Aaaaarrrrgggghhh!!!!! ;-)
Today I just feel off-colour, which is exactly the way I should be feeling at this point in time.
I have no energy and if I stand up too quickly I almost faint, but that too is expected. At least my brain has come back to life.
To give you some idea of how it screws with your mind, Saturday and Sunday I was unable to hold any sort of thought in my head without it becoming surreal and melting away into some sort of nonsensical garbage. A bit like your thought patterns just as you nod off to sleep when really tired. And as for sleeping, which I did almost continuously, you don't dream as such, you just get some sort of abstract bizarre theme in your head and it goes round and round continuously like a record stuck in a groove.
By Monday night the needle would actually skip out of the track and I was able to have surreal nonsensical "bad dreams" Oh yay!.
Last night was the first night whereby I actually got a great night's sleep and woke with mental clarity.
I jumped out of bed, (yes, too quickly), and had to sit down again before I fell down, but then paced myself and had a shower before getting fully dressed. I've always said that hospitals are for sick people and certainly the last three times I've been here I always spent my days fully dressed. This time I have been bed ridden and today is the first time I been out of my "sick person" attire of shorts and a tee-shirt.
I got dressed just in time too, as the Doctors popped in the door about two seconds after I pulled my jeans on. Good news.. They have isolated the exact type of bug and can now stop the broad spectrum IV antibiotics and replace it with a tablet that is known to also be effective on that type of bug. They expect that I can go home tomorrow but not before getting another platelet transfusion before I go. (I wonder who all these kind people are whose blood it is that I'm soaking up?) .. oh and another aside.. cost to the taxpayer for me getting sick this week? approx $10K including the cost of the transfusions.. Tax $$$ well spent I say! :)
It will be nice to get outside and remember what it is to be human rather than a green-gilled glob of yukky-ness.
I think the tea-lady caught the "Up & Go" thief too! She's way too nice to tell me herself but as it all happened outside my door I kind of had an audible ringside seat to the nabbing.
Yesterday afternoon at around 3:30 (IE: just after school) I heard her growl at a young visitor who was here to see their parent. I think she had laid in wait on her suspected culprit and when they made a bee-line straight to the 'patient only' fridge she pounced.
I could hear things like "poor Mr Scanlan this..." and "Name on packaging that.." following by much plea-ing of ignorance. Case solved.
OK, The string is a lot longer today but it still has an end.. Time to relax with some daytime television... Aaaaarrrrgggghhh!!!!! ;-)
Tuesday, February 24, 2009
I'm so over being sick, we can stop now?
Have you ever had one of those mystery stomach bugs that lands you in bed for a week with only constant trips to the bathroom to break the monotony?
Now add to that a good dose of chemo and you may get an idea of how I feel.
I'm over it.. sigh.
On the good news front my temperature has now stabilised at around 36C and I should be out of here in a couple of days. Of course that doesn't mean I won't be back within days with a new infection. One can only hope. It's the naturally occurring bugs that live within me that are the problem. Other peoples coughs and colds are apparently not a threat.
I haven't really eaten much since Friday, I can't bear to even look at food. The stuff they serve here isn't all that great and at home I've been eating really soft food to protect my mouth. In hospital the "soft" food is just the normal menu put through a blender.
So I got Sarah to bring me some "Up & Go" meal replacement drinks which she put into the little fridge outside my room and marked them with my name. That didn't stop them from being stolen within just a few hours of being placed there. The staff were quite annoyed about it and with my room being in the isolation part of the ward it can only be assumed that another patient's visitors have taken them. I can't imagine what sort of person would steal food from cancer patients. Grrr! Had I been strong enough I was tempted to check the other rooms bins for the empties.. but hey I guess that's life. Sarah will bring me some more and I will remove the straws from the packs and only place them in the fridge an hour or so before I need them.
Ok time to put the laptop away, I think I just reached the end of my string and need to rest for a while..
Now add to that a good dose of chemo and you may get an idea of how I feel.
I'm over it.. sigh.
On the good news front my temperature has now stabilised at around 36C and I should be out of here in a couple of days. Of course that doesn't mean I won't be back within days with a new infection. One can only hope. It's the naturally occurring bugs that live within me that are the problem. Other peoples coughs and colds are apparently not a threat.
I haven't really eaten much since Friday, I can't bear to even look at food. The stuff they serve here isn't all that great and at home I've been eating really soft food to protect my mouth. In hospital the "soft" food is just the normal menu put through a blender.
So I got Sarah to bring me some "Up & Go" meal replacement drinks which she put into the little fridge outside my room and marked them with my name. That didn't stop them from being stolen within just a few hours of being placed there. The staff were quite annoyed about it and with my room being in the isolation part of the ward it can only be assumed that another patient's visitors have taken them. I can't imagine what sort of person would steal food from cancer patients. Grrr! Had I been strong enough I was tempted to check the other rooms bins for the empties.. but hey I guess that's life. Sarah will bring me some more and I will remove the straws from the packs and only place them in the fridge an hour or so before I need them.
Ok time to put the laptop away, I think I just reached the end of my string and need to rest for a while..
Monday, February 23, 2009
Oh Dear!
I started to feel a little unwell on Friday night.. a bit nauseous and a little tender in the tummy.
By Saturday morning I was very ill, and having trouble standing. My temperature was an extremely high 39C and I felt terrible. I phoned ward one and they told me to go to the emergency dept and I would be admitted from there. A blood test when I arrived showed my haemoglobin level was just 59 (half the normal level) no wonder I was having trouble standing!.
Jump forward two days and throw in some heavy duty antibiotics, four units of whole blood and one of platelets and I'm finally feeling well enough to lift my head from the pillow. Blood cultures show that I had an extremely nasty bug that had gotten into my blood stream. The doctors said they were expecting me to develop a few infections while I have no immune system but that I had managed to get one of the more virulent nastys. It's amazing how fast it hit me. I'm really glad I went into hospital when I did, otherwise who knows how bad things could have gotten.
By Saturday morning I was very ill, and having trouble standing. My temperature was an extremely high 39C and I felt terrible. I phoned ward one and they told me to go to the emergency dept and I would be admitted from there. A blood test when I arrived showed my haemoglobin level was just 59 (half the normal level) no wonder I was having trouble standing!.
Jump forward two days and throw in some heavy duty antibiotics, four units of whole blood and one of platelets and I'm finally feeling well enough to lift my head from the pillow. Blood cultures show that I had an extremely nasty bug that had gotten into my blood stream. The doctors said they were expecting me to develop a few infections while I have no immune system but that I had managed to get one of the more virulent nastys. It's amazing how fast it hit me. I'm really glad I went into hospital when I did, otherwise who knows how bad things could have gotten.
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