4 month Brainiversary

So in the last couple weeks I have had my 4 month Brainiversary. In some ways it feels like only yesterday I had the surgery and in others it feels like years ago. I'm really very thankful to be here and to be having this amazing life with my family and friends.

I'm on the second day of 1/4 dose of my original medication. It was the only thing around at the time that was making any difference at all to my quality of life and over the years it has caused hair loss, kidney damage and a pretty nasty rash on my face which flares up from time to time. Today is not very comfortable, my head is aching. I'm hoping over the next couple of days it settles down some more. I see my doctor again in a week so we'll see what she says about it all then and if we can do done to ZERO!!!! I really hope so!

The Things We Do

I am still in the process of recovering from my surgery and as time goes by it has become more and more apparent that my memory has gigantic gaping holes in it. It has effected both long and short term memory. Last month I became very depressed about it all. I was very frustrated that I couldn't remember things and that parts of my life for all intents and purposes had "vanished". So things that have been automatic for me most of my life are now things I have to think about, concentrate on or are just inaccessible. 

I have been doing some "brain training to help recover my memory and get my brain back into working order and it is slowly improving. It is however going to be a long process. I realise and accept that now. Part of the problem I was having was that I wanted it to be fixed NOW or yesterday. There is no magic pill, band aide or wand to fix this. It will take time and work to repair. So I will take it easy, do what I can and the parts that can be fixed will be fixed and they parts that can't ... I will cope with. I am thankful that I am still here and that I was able to have the surgery done before the tumour took my life.

Sometimes a change of attitude makes all the difference. So I am back to looking on the brighter side of life and will be overcoming the challenges that come my way the best way I can 

Follow Up

I flew to Sydney for my follow up with the awesome neurosurgeon and it went pretty awesomely well. He is very happy with the rate of healing. Pathology came back on my brain lump and its absolutely benign and the got the whole thing out  I will have to go back every 6 months for MRI's and check up for the next 2 years and then every 12 months for 2 - 3 years after that to make sure it hasn't grown back.. The spotty memory is totally normal and will improve over time. It happened because that part of my brain was bruised during the surgery. It just needs some time to recover.  


So for now, more resting,  medications with my local doctor and generally getting life into better than normal 

Recovery

Its been 6 weeks since I had brain surgery. Some days it feels like it was yesterday others it feels like it was years ago. My memory is a little messed up since the surgery but it is improving all the time. There are some holes in it some really big ones that frighten me a little and smaller ones which are more easily explained by tiredness + recovery = forgetting things.

The big thing that disappeared down the rabbit hole was that during surgery I lost quite a bit of blood and ended up having a transfusion. I have no memory of anyone telling me about it at all until i was my local doctor a couple of weeks ago. It was quite a shock to discover how close I had come to not making it through the surgery at all. 

Anyway. Next week I fly back down for my post op check up with the neurosurgeon so we'll see how that goes and if there are any other things to be discovered that I don't remember  Everything seems to be healing up well on the outside at least 

     Day2 Week 6

Cleaning up

 In an effort to de-clutter I have deleted for evermore my LJ account.

I am currently going through the process of having to document all logins and passwords for.. well everything so removing unnecessary logins and passwords is a good thing :) LJ was double handling and also dealing with people I didn't necessarily need to be involved with any more ... also part of the "de-cluttering"

There is paperwork to do and lists to be made as my life, as it stands, seems to resemble something more like a small collection of words and papers and less the vibrant collection of memories and joy I remember. This is not a process I recommend to the faint of heart or the weak of will. 

6 to go

 Six weeks til operation brain de-pressurisation!

The Amazing Wizard of Oz will be doing open brain surgery to remove the lump which has been intermittently blocking and unblocking the flow of CSF through my brain. Its been doing that in such a way and for long enough that it has distorted my brain and made it asymmetrical. As I have a brain of ultimate trickiness the neat tidy and minimally invasive method of endoscopy is not an option. However I have the most awesome Neurosurgeon on the planet tinkering with my brain so if he says open brain surgery is the most comfortable way for him to go with this I am not going to argue!

A friend of mine has offered to help me document this whole process. Quite a big deal really. I have the words stuck in my head and have trouble getting them out. sometimes it feels like as soon as I have an original thought it is snatched away from me as soon as I start to write, type or speak it. I also feel a lot of the time like someone stole my vocab and left me with a year 5 or 6 vocab. I KNOW I know more words than this... but I can access them.. someone locked the files. Its very frustrating. So this process of documenting could be a very big challenge for both of us. Me trying to get it out and her trying to interpret it and make it sound intelligent and beautiful. Ah well it is a challenge :)

Either way this is a journey and certainly not one that is going to be easy. Good thing I'm not afraid of hard work. Thank you to my friends who are still here with me, the new ones and the old ones. So many have left out of fear. I can't thank my family enough for the trials and the challenges they have face up to this point and the ones they will no doubt face in the future.

Internet Spaceships. Serious business!

I have been playing this game for over 4 years and last night i got to build this very cool space station! Tonight i get to do part one of the upgrade. tomorrow night part two. I am so freaking excited... and a complete geek. *grin*