neutropenic Alex's online moblog

by neutropenicalex

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Hello friends. This is My "moblog". I will try to update it everyday, from my lovely hospital bed.
keep updated :) and feel free to e-mail me at aj_saville@nerdshack.com. I will email you back
xxxxx

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Mr men lollies

(viewed 1411 times)
HiSorry i didn't blog last night. I was watching the champions league
final. Poor Arsenal.Anyway today i had another NPA (explained in an early post when i was at
guys hospital) because my nose was running.And they have found i have a flu virus. So have to move room to one that
has negative pressure, so i can start a nebulizer treatment.A nebulizer is a mask you wear and you breath in antibiotics (i'l have
to wear it for 2 hours....3 times a day, how annoying? And will take 7
to 10 days)
It must be in a room with negative pressure (meaning air is sucked out
rather than pumped in) so that the antibiotic doesn't flow out into the
rest on the unit.One good thing about this is that noone will come into the room while
its going on, so i get 6 hours of privacy a day. Sadly the new room is
the smallest on the unit.Oh and i think the bladder is on the mend!!! I dont scream anymore :)I can eat solid food now!
My mum has been bringing me ready to eat chinese spring rolls. Man they
are so nice.Alex saville
18th May 2006, 20:25   comments (10)

Bored bored bored

(viewed 1508 times)
Hey everyone.Im incredibly fed up with hospital now. I've been here since April
28th.
Before i came into hospital i had 2 weeks at home, because the 3 weeks
before that, guess where i was? Hospital, in isolation like this.At least i got to do a April fools prank on one of the doctors.
Im guess other countries don't celebrate this tradition... If you can
called it "celebrating".
Basically you can play a trick on someone before noon on 1st of April.
This means they are a fool. If you do it after noon though, you are the
fool. Pretty stupid really, but think its been around for couple of
hundred years?Anyway. In the morning on april the 1st i thought i would try to do a
prank on the staff. I don't usually ever do april fools, but i thought
why not?!One of the nurses came into my room. I then grabbed one of my legs and
tried to say "nurse! I can't feel my legs!", but i started laughing, and
the idea was ruined.At 11:55am one of the doctors came in for the daily check up. I knew i
had to do something now or it would be the afternoon and i would be the
fool. So when he ask "hey alex, hows everything today?", i said "mmmm
when i went and looked in the mirror this morning, i was bleeding from
the eyes".
You should have seen his face. He said "really?!".
I knew this was a pretty cruel thing to do to a doctor so i said "no,
april fool".
Man hehe he sighed.
It was perfectThough he did then say "we are going to have to do lots of horrible
tests on your eyes today". So he thought it was funny to.Nothings really happened today. Except that they think the urinal tract
infection isn't an infection, its probably bladder mucosytis. Yes that
means i probably have ulcers in my bladder!!! And they cant heal until i
have some white blood cells! Which i still don't.
Man it is agony when i pee...... Oh well. Its just another thing in this
long transplant process. Im sure there will be others, just hope they
aren't too bad.Alex saville
16th May 2006, 21:27   comments (12)

Radiation burn

(viewed 1580 times)
Hello
As you can see i have radiation burns on both my hannds, bit painful
really. Its alot like sun burn (except i have been inside for weeks now
and its 2 weeks since i had the radiotherapy) its only decided to appear
in the last few day.yesterday i was complaining about not being able to taste. I just ate 4
wlls Mini milk ice creams!!! Mmmm they were delish! I had 2 chocolate, a
strawberry and a plain milk one (and still have 3 left in the ice cube
part of my rooms fridge).amazing!! Out of all things, chocolate is the taste i can still pick
out, and man its just as good as it was.
So i think i've decided to live of ice cream till my mouth is better
(hoping it won't now)A lone fly managed to get into my room! But how?
My room has a triple glazed window that doesn't open. The only other way
in is through the door. But the door leads into a hall with all the
other rooms coming off it (once again, no windows)
At both ends of the hall there are electro magnet locked double doors,
followed by another set of electro magnet locked double doors.
i can only think the fly knew the keyboard password?
To cut a long story short, me and my mum couldn't kill it, but my friend
managed to smash it against the wall.I had the final dose of methaltrixate!!! So that should be the last ever
chemotherapy, im releave.One bad thing today though. I told the doctors it was very uncomfortable
when i urinate (or "do a number 1" or a "pee" if you like) and it seems
that i most probably now also havr a urinal tract infection..... Great,
thats 3rd infection since i've been here.
Luckily the antiboitics im on already should cover that one too.Its a laugh every minute here........ HeheAlex saville
15th May 2006, 19:58   comments (14)

Ubley yogurt....yummy

(viewed 3322 times)
Hi
Today i watchd bout 5 hours of David Attinburgh's "life of mammals" bbc
series. Hehe The best kind of television in my opinion. I cant get
enough of natural history programs.Guess what!?!
I ate for the first time in about week!! (i think?)
For lunch i ate two yogurts. Wasn't to hard to eat. Well ok it took me
about half an hour to eat them but it wasn't painful, just differcult.This evening my mum brought me pasta bolonese. That was a bit of a
different matter. I thought it would be easy to eat. It wasn't. I
managed to eat quite alot of it, but it was painful. The main problem is
your body tells you to chew it, but thats the one thing i couldn't
really do comfortably. So at time i just swllowed whole chunks of mince
meat without even chew (not a way to enjoy a meal huh?)Also another problem caused by the mucosytis was that most of the cells
on my tongue are damaged or in the process of healing, so i cant really
taste. So all i had was the uncomfortable feeling when i was chewing, to
think about. I can taste sweet thing still, but really miss savoury
food.Im having yet another bag of blood. My haemoglobin was 7.9 (the norm is
between 12.5-18) so kind of low. You can translate haemogloben level as
oxygen level really. Thats oxygen to muscles, to your brain. So you can
understand in makes you tired and your concentration is disrupted.My haemoglobin has never been up to the normal level since i got
leukaemia. Maybe soon? Hehe i don't think i remember what it feels like?
Becuase even now i don't feel to tired?Oh the nose bleeding problem has stopped.Hope you are all well.
Alex saville
14th May 2006, 21:05   comments (8)

Spiked again

(viewed 2159 times)
Sorry i didn't update yesterday. I was feeling so rough. I could hardly
move.
On thursday night i i started shaking constantly and had a bad headache.
Then my temperature shot up to 38.5 (shouldn't really go above 37.6)
They then did blood cultures, and started me on antibiotics.
In the night i throw up, even though there is nothing in my stomach.All of yesterday i was flat out. I felt awful.
My temperature stayed high all day.Last night i had yet another nose bleed, it just wouldn't stop. My
platelets (involved in clotting the blood) were 19, they should be
between 150 and 400. At times the blood was actually pouring out of my
nose.
My temperature before i went to sleep at 2am was 39.5 (incredibly high)
i had a paracetamol (which makes you sweat your temperature down) and in
4 hours my temperature was 35.4 (which is actually i bit to low, but not
bad)One good thing about yesterday was that i could actually sip water!!!!
And my mouth hurt a little less.This either means
1. My mouth is starting to get better.
2. The mucosytis is messing about with my nerves so i dont feel my mouth
as much.
3. Its just laid of for a day, but because i had methaltrixate on
thursday, i could get worse again
Anyway it feels bit betterAt this very moment im shaking a bit and my temperature has slowly gone
up to 37.4. Which means il probably get a temperature.C u later for an update (if im up to it)
Alex saville
13th May 2006, 12:11   comments (19)

Nose bleed art

(viewed 1481 times)
Im sorry about the photo. Last nite i had a nasty nose bleed, and
decided to be creative.
My friend said that "to be a true artist you have to struggle, and
stuggling artists must be resourceful" and i think that drawing with
your own nose blood is quite resourceful.On to other matters.
Today i had what maybe my last chemotherapy drug ever. I had my 3rd dose
of methaltrixate (corrected spelling) which is bound to make my mouth
even sorer over the next 5 or so days.
Depending on my mouths state the doctors will then decide whether to
give me the 4th dose (i hoping not)I also had my first dose of GCSF (grano-cyte colony stimulating factor)
today. I've had it many times before and even learned how to give myself
the injection (though i prefere someone else doing it).
GCSF stimulates the bone marrow to produce white blood cells, which will
form my new immune system. I will be having the injection once a day
till my white blood count is high enough and then i can leave hospital!
Wooo
So its finally getting done.The doctors have prescribed me oxynol injections every 4 hours, but have
also said that if they r not enough im allowed to have one each hours,
but these extra one are not compulsary.
So i could have 24 strong opiate injection in one day if i choose.
Great.Alex saville
11th May 2006, 19:57   comments (11)

Ouch ouch ouch

(viewed 1193 times)
Oh my! My mouth is in a really bad way now.
It hurts so much everytime i swallow so i cant really drink at all. I
have ulcers under my swollen bottom lip. The side on my tongue sting.Iv been dehydrating (coz i can't drink) and almost fainted in the
toilet (not actually in the toilet) so the doctors have put me on
fluids.
The mouth pain should carry on for about another 5 or 6 days, then
gradually get better.Anyway im guna have a sleepAlex saville
10th May 2006, 17:17   comments (12)

Bald!

(viewed 1219 times)
Last night i looked in the mirror and saw that i had bald patches in my
hair.
So i decided to spend the next hour of so pulling it out. Yes actually
pulling it out (in big clumps) completely painless, just falls out in
your hand.
It was so so fun :)Well this is what i look like now!
My mouth is getting worse and iv started having oxynol every 4 hrs. Its
a syrup you drink made of codine and other things. Its a pretty strong,
about morphines levels, but doesn't make you dopey like morphine. Not
bad.The doctor says i should drink Fortisip, a milkshake that you can only
get from the doctor. Its full of calories, protein and all the vitamins
and minerals you need.
He wants me to have some because if lost 9kg now.
I have got a bottle of vanilla flavour, but it comes in chocolate,
strawberry, fruitjuice (fortijuice) and a yogurt drink.
Haven't had it yet, wonder if its nice.?Alex saville
9th May 2006, 13:49   comments (15)