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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Pain...........

(viewed 1166 times)
Hi
Today i woke up in so much pain, was awful. My mouth is really bad now,
its very hard to swallow and i cant eat.
You can see in the picture, my cheeks are puffy and swollen.The nurse gave me oxycodol. A quite strong painkiller.... That did
nothing
Then they gave me my first ever injection of morphine. That calmed my
mouth down, but only for a while.
Then they sent up a pallitive care doctor, who offered me a morphine
syringe driver. 24 hour morphine syringe, that constantly injects a tiny
bit of morphine. I said that i didn't want that yet. The pallitive care
doctor is going to come see me everyday, so i can tell him what i want.
So i decided on oromorph (drinkable morphine) every 4 hours, i due one
in 10 minutes.So not a great day sadly.
It will be at least a week till the pain is all gone and my mouth slowly
recovers..... GreatAlex saville
8th May 2006, 19:54   comments (17)

White gums

(viewed 15475 times)
Hi everyone.My gums are white!!!! Ewwww. They dont really hurt but my cheeks and
tongue ache alot.
Iv been gurgling with paracetamol soluble tablets in water and difflam
mouthwash. Both kinda of numb the mouth, but its still pretty bad.I managed to eat a muller light vanilla yogurt and half a chcolate
mousse today, but they were both low fat which is great if im trying to
lose weight, but the only reason i ate was so i didn'tI had my second dose of methaltricsate today. Thats the one that causes
bad mouth ulcers.
I stil dont actually have any, and im hoping i don'tMan my head aches...Ooooh just remembered my nurse today said i could be out in about 10
days!!! That would be incredible. Though it depends on everything
running smoothly and my new bone marrow making white blood cells
quickly.
When i start making white blood i'l start posting blood results and
explaining what i need to get.
Alex saville
7th May 2006, 18:35   comments (10)

Leyton orient promoted

(viewed 968 times)
Ok ok im sorry this message won't interest you as much as me but i would
like to sayWell done to leyton orient (the football team i support) were promoted
from english football league 2 to league 1 today.Fantastic!!!! WoooI've be going to see them play for 8 years now! And they've look like
getting promoted many times but at last they have done it!
It took till the 92nd minute to clinch it which makes it even more
sweet. I wish i could have been there.
Sadly we beat oxford united, sending the out of the football league
altogether, they will be in the league conferance next season.
Too bad, i guess they still have a university to be proud of, oh and now
they'l be in the same league as cambridge. So really they should be
there.Anyway the doctor came today and told me what germ they grow in my blood
culture that they took when i had a temperature!
A bacteria called "staf epidermis" (epidermis, as in skin)
This is a bacteria that is naturally on your skin and in your body but
because i have no immune system it infected me. This is a common
opertunistic bacteria.
Luckily it already gone now because the antibiotics i've been on cover
this one :)
This is probably the first of many infection i will get, but
fingercrossed i don't get any nasty ones.Alex saville
6th May 2006, 19:38   comments (9)

Platelet rash

(viewed 1059 times)
Hello.
Last night (well 3am this morning) after i had a bag of platelets (blood
cell innvolved in the clotting of blood) i had a weird reaction.
Its not uncommon for me to react to platelets, usually i get hives on my
face, which look like blisters. They don't hurt but look pretty funny.
But last night i realised i was scratching my side because it was inchy,
so looked.
My skin was all bumpy and red all down both my arms, under my armpits
down the sides of my neck, on my upper legs and around my ankles.
(I don't know if the picture is good enough, but that is my red left
arm)The doctor came and checked it out just to see i wasn't anything
serious. I told the doctor i quite liked it because it was all warm and
cosy. Hehe
The rash was gone by the morning though.Today i had my first dose of methaltricsate (spellings is probably very
wrong). Its a chemo therapy that is being given to basically keep the
new cells at bay so that they do not multiply to quickly before the
settle and make bone marrow.That was ok, though it causes mouth ulcers, so in a few days i'l be
likely to be in a lot of pain, because my mouth is already pretty
painfully.
Alex saville
5th May 2006, 16:30   comments (6)

Guitar tablature

(viewed 910 times)
Hehe guitar tab stands for guitar tablature.
(Like sheet music, but for guitar) tells you what chords to play.I don't think i need actual tab (because im not that great at guitar)
but the chords would do me fine.Mmm i really couldn't care what tab?!? Mmm any guitar music. Rock?
(Beatles? stones? Kinks? Modern bands to?) I don't really mind.Man this is so long, im having a bag of blood (3 hours), gentomycin (1
hour), itraconazol (30 minutes), 1 pool of platelets (30 minutes) and
lastly cyclosporin (4 hours).
Luckily i can have 3 of these at a time (because of my hickman line,
have i told you guys what that is? Tube in my chest?) but its still
going to be a late night.Alex saville
4th May 2006, 22:29   comments (3)

Guitar tabs?

(viewed 897 times)
I have a guitar with me in hospital and i now realise i can store guitar
tab on my phone in the form of emails!If anyone has any guitar tab or has a faverite song (anything, i really
couldn't care what it was) then if you would feel so kind could you
email it to aj_saville@nerdshack.comHehe it would give me something fun to do in hospital
(And it may get me at least a little bit good at playing this thing)Cheers
Alex saville
4th May 2006, 21:09   comments (4)

Spiked

(viewed 929 times)
Hi.
As you know i had my new cells yesterday.
But about 7pm i started shivering and i know what that means way to
well.
I told the nurse that i thought i was "spiking" (hospital slang for
"getting a temperature". I guessing because when they draw a graph of
you temperature over a period of time it will show a sudden rise in
temperature, resembling a spike)Anyway the nurse came and did my temperature and i was right, it was
37.9.
So a nurse came and took blood cultures, this is where they take blood
tests into special bottles containing chemicals that induce germs to
grow. So after a few days if the lab can find any germs in any of the
bottles that will show if you have an infection, and what it is.My temperature is down now and i've been started of 2 antibiotics. We'l
see about the results from the blood cultures in a few days.Alex saville
4th May 2006, 11:39   comments (9)

Hehe new cells

(viewed 795 times)
Hi everyone
I just had the new cells, 2 bags of cells from a male donor of 33 years
of age. And his blood type is B+. I'm O+, but here is the magic of bone
marrow transplant! I wish now be B+.
How sweet is that?!?Now that is something i think that makes leukaemia actually quite cool,
who can say they changed blood type?!? I can. HeheEverything went fine, the cells went through in about 45 minutes, the
nurse said that sometimes the cells can take hours and hours because
stem cells are quite sticky, but these went through pretty good.Now its a matter of waiting for the cells to make bone marrow, and then
make white blood, red blood and platelets. Then i'l be ready to go
home!But these new white blood cells will have no memory of past infects.
When your born your are born with your mothers immunity, then through
childhood your body learns to fight other infection (you've seen how
baby put everything in their mouth? Thats an evolutionary advantage,
because the body learns to fight infection)My new cell will not even have my mothers, or the donors mother
immunity. So i'm guna have to relearn, which will probably mean getting
ill alot.Alex saville
3rd May 2006, 15:49   comments (10)