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


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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