[pcductape] A small saga

  • From: Victor <vlfll@xxxxxxxxxxx>
  • To: SAYQ <SAYQ@xxxxxxxxxxxxxxx>
  • Date: Sat, 04 Sep 2004 09:50:25 +0200

Hi there Folks,

I'll try to write up here my latest experiences and where I am at the
moment with my treatments.

To start off - I'll just give you the general rundown off where I am at
the moment. Obviously, that is at home next to my computer - but beyond
that, my situation, feelings and thoughts [or some of them].

After almost 2 weeks of treatments [radiation, chemo and immuno] I was
"released" for a week recuperation at home - to "strengthen up" for my
next round which will start again on the coming Friday 10th.

In general, I can feel that I am rather exhausted and tired, as my body
has been and still is being bombarded by all sorts of stuff - I was sent
home with a whole "bucket" of medicines to enjoy as snacks between
meals!!! I am a lot slower than what I was, weaker and I feel that I am
thinking and concentrating a lot less well than before. All these things
 were obviously going to take place and therefore I am not so surprised
that this is how I feel. I had had much greater fears of how my body was
going to handle things and to my great surprise I was up and about for
99% of the time - driving the nurses batty. Of course there is the
accumulative affect of having so much thrown at you and I think that is
what I am feeling now - but I am not prepared, in any shape or form, to
just keel over and lie in bed - I am up and about and doing my things -
though will take care not to overdo things.
Other superficial stuff, is that I have lost some weight [not too much],
my taste buds have gone and everything tastes either plastic or metal
after the first bite [horrible] but that will come back later after the
treatment is over. My hair is starting to come out - not much yet but I
assume I will be bald at some stage soon = I promise you all some pics.
I am very very tanned in the face and neck area from the radiation, but
that too should at some stage disappear. Besides that, on the physical
side of things all is more or less okay.

The treatments themselves - well we started with a 3 day session of
radiation - one of the reasons for that is to break down the BBB barrier
- read this to understand it better
As my radiation is to my lonely IQ, the first stage of this was to have
a simulation and create a mask for me to wear during the sessions - so
as my head would always be positioned the same. All that having been
done I went in for my first "blast" - on to a slab they put you - tie
down your head in the mask and then set the machine at the correct
angle, aperture etc'. The technicians leave the area and you hear a sort
of gurgling sound from the apparatus for a couple seconds, after that
out of the corner of my left eye I noticed a red blinking light come on
and now knew "here it comes" .......... scary ......... what's going to
happen to my brain ? is it going to turn into mush? and so on - of
course you know that there is no base to thoughts like that but still it
is pretty hard to avoid those thoughts while you are lying there
motionless. During the "blast" the only thing I felt was the slight
smell of O3 being zapped very briefly. After the first blast they moved
everything round and gave me a second dose to the other half of my
brain. All in all it doesn't take long - maybe 15 minutes. I had in all
10 sessions like this, every morning at 0815 [down in cellar -2 of the
hospital] - nice way to start the day I must admit.

After those three days of initial radio we started on the chemo........
I'll be the first to admit that after seeing the people in the ward and
how they were all lying listlessly in bed all exhausted and stressed out
I was apprehensive of the effects of the chemo treatment on my body -
after all the stuff thrown at you is no fun - so on the day they hooked
me up from around noon till close to midnight - drip drip drip - I could
almost "feel" the stuff going into me........... every once in a while a
nurse would come round - push another needle full of whatever into
another bag of liquids or give me a pile of tablets or an injection - by
the end of the evening I really did feel like a voodoo doll !!! IMHO the
most "amusing" part was when they had to give me a diuretic, since one
of the things I was receiving shuts down the kidneys , so right after
that they give you a "kick" to restart them - Geez, I was running every
15 minutes to the loo, first time in my life my kidneys ever hurt me and
it is no fun ............ especially since the effects of the diuretic
doesn't stop but continues into the night making sure you get up a couple more times !!!!! But all in all besides the discomfort of being hooked up to a pole for 12 hrs or so - the pure boredom of it - and the fact that you have to muddle through it - it wasn't all too bad. After 3 full days of this I was still up and about - rather surprised at myself and my condition - sure I was tired and felt that I had been hit by
sledgehammers for hours on end, but I was still walking around and trying to make the best of being in hospital. Of course one of the things that break boredom are food - but I swear I have had better at boot camp during my service ------------ looks like plastic, tastes like plastic and it probably is plastic !!!! Never mind that - friends were constantly bringing in good food and I could always go out the ward to the cafeteria outside and get some stuff [luckily I was not bed ridden], the worse of course was "breakfast" coz at that time I really didn't feel like going to "search" for something nice to eat, but since I am no breakfast person in any case it wasn't such a hassle, though I had set a target of eating as much as possible as I was loosing weight [not much at all, but still] and the appetite had gone , on top of that my taste buds have gone too - now everything tastes like metal or plastic - the first bite is okay sort of , but after that it is force-feed myself. Also have to take care of what I eat as my sugar levels jump round a lot at the moment.

After those 3 intensive chemo days I was more or less off drip treatment and nearly everything was either injections or medicine. The amounts of medicines I have ingested during the last 2 weeks must be more than I have had during the rest of my life!!!! I am sure that this treatment also takes a toll, but I was still up and about and trying to go about things in a normal as possible fashion as possible, reading, listening to music, friends visiting, going out the ward etc etc.

Thursday I was released home for a week R&R at home to strengthen up a tad and also to relax , I am a tad slower, less able to concentrate for long periods of time, find myself sometimes just "wondering" sitting like a semi-zombie, but not to worry I am not loosing my mind - yet. Now it is Saturday morning - I am feeling much better than the last couple of days - a bit more energy and also want to get somethings done around the place. I am not pushing myself too hard and will take things easy but also not prepared to do nothing at all.

I would also like to take this opportunity to say thanks and hugs to all of you for your thoughts and wishes - your support even from afar is a great thing to have - thank you thank you thank you.

As always - you know I am always open for questions, remarks and your thoughts.

Lots of Love

TTFN - Vic

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