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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Roast turkey & stuffing, country vegetables, roast potatoes and a fresh apple

(viewed 746 times)
Hehe hi
I really don't know what they mean by "country vegetables", i don't see
any country vegetables infront of me!. What i see is tinned mixed veg,
though all credit to the guy who came up with the name. HeheGuess what just happened!? 2 women from the program "city hospital" that
is on bbc in the mornings and is filmed at Guy's Hospital came to see
me! They wanted me to do a live interview with Andy Peters (man i
remember watching him on live and kicking when i was just a lil tiny
kid) tomorrow morning, but sadly i'm going back to King's College
Hospital tonight, but they are thinking that i could do a video diary
for my room in King's.
That would so rule :)
They took my mobile number, and might even come a video me having my TBI
this afternoon. Hehe sweet i could be a star.So if i'm guna be on, i'l tell you guys on the blog, so if you live in
the UK you might watch it. HeheAlex saville
27th Apr 2006, 12:45   comments (4)

My stupid steroid face!

(viewed 7763 times)
Hello guys
I just had my 3rd to last radiotherapy treatment, so only tomorrows 2
left.
Straight after the treatment i'll be moved to kings to start some real
hardcore chemotherapy, am well looking forward to it!!!!! Well... Ok i
tell a lie i'm not at all.As you can see in the picture the silly drs have put me on steroids (for
only 4 days, monday till thurday).
I hate steroids, my face is starting to take the typical "steroid moon
face" (which is caused because of retained water and redistrabution of
fats).
Usually i would drink loads and loads of diet coke to flush out the
water because caffeine is a diretic, but i can't do that this time
because the radiotherapy leaves you dehydrated anyway, and directics
wouldn't help at all. They would only leave me very dehydrated.
Steroids also give you mood swings (really really annoying, happy one
moment, grumpy or upset the next) for no real reason.Hehe one of the rarer and more impressive of the side effects is steroid
sycosis. Hehe i have had some very strange halusinations while on
steroids before (some rather embarrassing) hehe.The reason i'm on steroids is that they increase the affectness of
anti-sickness's (so any sickness i would usually get from the
radiotherapy, is stopped or greatly reduced) .... Which i guess is worth
it really.The other quite fun thing about steroids is.... You guessed it FOOD. The
first time i was on steroids i was on 120mg of prednislone a day, an
incredibly high dose. I was actually dreaming of food! And thinking
about it 24/7. After i had finished a meal i would actually go into a
state of grieving! The thought that it was finished and there was no
more, made me physically upset.Hehe any i'l show you guys my lovely ensuite shower at kings, luxury or
what?!!!Alex saville
26th Apr 2006, 19:47   comments (5)

TBI

(viewed 906 times)
Hello
The photo today was taken by one of my wonderful radiographers.
This me in my wheel chair thingy, covered in bags of vaseline, wearing a
vest full on bags full of vaseline, and a neck brace made of a vaseline
bag too.
Hehe good fun.They put on a cd of love songs today.
The radiographers went next door and started the machine.
"If you don't don't know me by now" by harold melvin and blue notes came
on. This made me a little soppy, because a year before i was diagnosed
my i sung a this as a solo on my college choir trip backed by the whole
70 strong senior choir. but becuase you can't move your body of head at
all while you are having the therapy (on some areas of the body will
have wrong dosages) i could only move my eyes around in time to the
music, like they were dancing. The radiographers can see this in the
other room because there is a camera pointed directed at you. They
thought this was pretty funnyAnyway that is half the radiotherapy done now. Only 4 more sessions :)
then i'm off to kings college hospital for the hard bit (chemotherapy)
which will most likely be unpleasant (don't worry i won't be posting
pictures of my sick up) hehe (well i will on request, or if there if
there is anything mightily interesting in my sick)XxxAlex saville
25th Apr 2006, 20:12   comments (3)

NPA

(viewed 792 times)
Hi everyone.
This morning a went down to radiotherapy wear some fantastic boxer
shorts, with a huge a multicoloured start radiating from the crouch. The
radiographers were very impressed.When i came back up to the ward the dr came to listen to my cough (with
i've had since thursday, when i had the bone marrow harvist described in
past messages)
Anyway she decided she wanted them to do an NPA (nasio pharyngeal
asperate) Where they stick a tube up one of your nostils, down to the
back of your throat. Then then turn on a suction machine which sucks out
cells and what ever is there. This is how they check if you have a virus
(virus's can sit at the back of your throat)
This is my 3rd NPA. And they aren't terribly comfortable. But todays
wasn't to bad. Usually your eye water.
I got a physiotherapist to take the pic.Hehe cya later
Alex saville
25th Apr 2006, 12:07   comments (3)

Latex free

(viewed 810 times)
No your eye ares not deceiving you . I am oindeed wearing"SAFESKIN
powder-free purple nitrile Exam gloves (latex-free)", or should i say
modelling?
They are for nurses use, but noone seems to use the purple ones, even
though they are quite obviously fare better than the plain whitey yellow
ones?
I say these will be the biggest thing in a year or 2, and i don't just
mean hospital fashion, i mean there will be name brands jumping on the
band wagon.Sorry i'm getting carried away, truth is i just thought it would be fun
to walk around the ward doing a lil bit of a michael jackson impression
hehe.Any there is a deeper meaning to this email
I'm in a band (well we haven't done much in a few months, but it makes
thats understandable coz the guitarist is in oxford studying physics,
the bassist is in edinburgh studying maths, the drummer is in london at
college and i have leukaemiawww.myspace.com/soundandlight3000Any way check out 4 of our songs, that we recorded in december just
after christmas.
The EP has a clever title, "The Hickman Line".
The hickman line is a tube in my chest on the right side, where
chemotherapy, blood, platelets, plasma, antibiotics can be given. Also
blood the daily blood test can be down without the nurse needing to
puncher my viens at all.The EP cover is a chest x-ray of me, with multi coloured hickmanline,
check it out.
And comment on what you think
The voice you here is mine..
Xxx
Alex saville
24th Apr 2006, 21:00   comments (6)

Touch screen tv!!

(viewed 752 times)
To answer a question about neutropenia.
I have been in and out of "neutropenia" since september. Leukaemia is a
mutation in white blood cell. To kill the cancer you are given
cytotoxins (this is chemotherapy).
The cytotoxins target and destroy (in different ways depending on the
drug) white blood cell, good and bad.
So the leukaemia is destroy, but so are your good working white blood
cells, including Neutrophils that are involved in fighting infection. So
though you gettin rid of you mutated cancerous cell you also in the
process destroy you immune system.
When your neutrophil count is below 1.0 (normal being about 3.5-5.5?)
you are neutropenic (prone to infection)
When i start my pre transplant chemotherapy my neutrophil count will
quickly drop to 0.0 (no immune system at all, i will be moved to a clean
room to lower chance of infection)Hehe good fun.
I'l explain more soonPs. My neutrophil count is 2.4, so i'm immunocomprimised but not to
badly.Pps. The photo is of a overpriced touch screen sky tv, internet and
games that is on a long arm that can swing down to you bed. You pay
using a charge card (a little like an oyster card on london transport?)
Hehe and there is a card in it.... It has about ?2.50 on (enough for tv
for about a day and a half) you think i should use it? Its in the name
of the guy who was in the bed before me.Alex saville
24th Apr 2006, 15:01   comments (4)

Wow that was so so odd

(viewed 721 times)
Good morning.
I just had my first of 2 doses of TBI (total body iradiation) today. It
was one of the oddest experiences in my life.
The radiography department that i had it is in the basement of Guys
Hospital. All of the corridors obviously haven't been redecorated since
the 70's. Everything would dark wood veneer.
Anyway when i got into the radiotherapy room i had to strip down to
boxers, then sit on a weird wheelchair thingy.
I was then covered in little metal pieces that they scan after the
treatment to check i'm getting an equal dosage to all places.
Then i was covered in little bags filled with vaseline (because the
machine only gives doses of radiation in cubes, so the radiography were
trying to make me a cube shape.
Then they put a big plastic screen next to me, and a piece of lead in
between my head and the machine. They put some music on, and left the
room, i had to remain completely still for 7 minutes, then was spun
around and they did 7 minutes from the other direction.So so so odd.
I'm going to take my phone down there later, and i'll get radiographers
to take pics of me in the chairCya laterYou like the pic of me in my sun glasses?
It wasn't even sunny yesterday when i took it, and i'm in hospital, but
what the heckAlex saville
24th Apr 2006, 10:42   comments (3)

A view from Guys Hospital, London Bridge

(viewed 1101 times)
Hello everyone. You like the view from my hospital bed?
If only my camera was better you would see that the tini wini speck on
the horizon smack bam in the centre is Tower Bridge, and Big Ben to is
right and the London Eye to the right on that.
So not bad really?
It was hell getting here on the bus, who decided to have the London
marathon today, damn them.Guess what? Guys hospital give you ice in your water, and the breakfast
is served buffet style. A bit posh.I start my first of 4 days of TBI tomorrow.
I've been told that i have to cover myself top to toe in aqueous cream
twice a day. I have to also use aqueous cream as shower gel! And i'm not
allow to wear any deoderant! or this will irritate my skin.
I'm suprised they didn't say i have to use aqueous cream for tooth
paste.i think i prefere the nurses uniforms at Kings, as opposed to Guys
green.Cya tomorrow for a full description of the wonder that is total body
iradiationAlex saville
23rd Apr 2006, 19:53   comments (3)