Future Dates, Future Concerns and some Positive Thinking
Future Calendar Dates
So, we have some more moving forward with surgical
appointments. They will be more than a month after my initial scans but there is
no hurry from me anyway. Cardiff looks doubtful as to surgery as I would have
to re-register in wales to be under their care but we are going to go for an
opinion anyway. Plymouth and then maybe Bristol to follow later.
- · Cardiff Neurosurgery clinic appointment back on for the 22nd
- · Plymouth Neurosurgery clinic appointment on the 24th
- · Outlook Therapy 25th.
- · Bristol for brain functional imaging sometime after?
Personality changes and cognitive worries
One of the main issues with frontal lobe tumours is that
this area of the brain controls personality, and so alterations to the brain in
this area often lead to personality changes. Unfortunately I have already had
the displeasure of some of this effect with my anxiety issues and shorter
temper. After doing a lot of reading in the area it seems like this is something
a lot of frontal lobe patients go through, whether it be through stroke, tumour
or trauma (including surgery). And although these changes aren’t all that bad
at the moment I am worried of what will become in the future.
Now I know I’m probably thinking too far ahead, but I am
just a little bit apprehensive about any effects the approaching surgery will
have, both on my personality and cognitive function. And I suppose really I’m just trying to warn you and maybe apologise in
advance if… if, I do have some personality changes, sorry. But then maybe I could
do with a few :P
Physiotherapy
I’ve been doing some physiotherapy exercises provided to me
by the lovely beth J.
It’s a bit of a weird feeling struggling with what should be some simple tasks
but I’m enjoying it nonetheless although I’m quite shakey and it really takes
it out of me.
It’s important to keep my strength and mobility up as I’ve
had a couple of small falls in the past two days. It probably has something to
do with reducing the steroids dose. I was told it would be a rough few days as
the body adapted to a new level of cortico-steroids, so I’m thinking this kind
of thing is too be expected and just part of the ride, hopefully my legs will feel like my own again after surgery.
Imaging
Most people reading this won’t find this article anywhere
near as interesting as me. But I’m a
nerd and this was going to be my job. So this is some of the imaging I will
probably be having in the next month.
Life
Being hit with the reality of being home and not being able
to do much has taken some adjusting too, and obviously I miss not being at university, moving forward with my life, but its easy to deal with if I view it as just a
temporary set-back while treatment occurs. Trying to treat it like a holiday. I’m
sure a few of you reading would love a few weeks to lie back and do nothing at
all right now.
The foster kids came home this week too, so I made some
brownies to celebrate. It’s been really good for the family to have a sense of normality
back in life and everything seems to have skipped back into routine easily. Unfortunately the dog decided to learn to climb onto the worktops and helped herself to the left over brownies. :)
And
even better rene is coming back to cornwall for a few days, even over her
birthday to spend her time wasting away with me instead of being home. So I’m extremely happy and grateful and
will have a birthday to try and plan for. Going to spend
the next week relaxing, reading and doing all more research while I wait for
the clinics. I’ve been reading at least a book a day this week. Mostly research
about treatment or peoples diaries that got published about living with a brain
tumour. But I’ve been reading some fiction too when my head can cope with it.
Drugs
It just wouldn't be one of my blog posts without a good rant about how much i hate these drugs. So every night for the past week I’ve been waking up after
about four hours of sleep in a hot flush after having a nightmare of some sort
or just waking up feeling really alarmed for no reason and being completely
wired and restless. It’s quite an odd feeling because I’m spending most of the
day time cognitively slow and foggy and then have 3-4 hours to myself every
night feeling like I’m high on amphetamines.
I’m having so many
thoughts rush through my head and what feels like loads of conversations going
on at once. Supposedly this is the keppra side effects but after contacting the
nurse about lowering the dose I’m told that actually I’m supposed to double my
keppra now as 500mg is the normal anti-seizure dose. Ha. Might try and fight this one and refuse. Seems
counter-productive to be taking all these drugs that make you feel worse than
the actual problem did in the first place.
edit: apparently seizures can cause brain damage. guess they know best! :P
edit: apparently seizures can cause brain damage. guess they know best! :P
Thankyou
Just a quick thank-you to everyone for all their support so
far, It’s been really amazing and helpful, I’ve been very blessed. Will Keep thinking
positive. Hopefully a good week will ensue!
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