September 2016 Update

Hi guys, its been an awful long time, sorry. Things have been changing i just find it hard to keep putting them up here all the time. or respond to most peoples messages and texts as i'm sure a lot of you have noticed. For some reason one of the effects that has come out of this is the irrational dread of messaging people and responding to messages and for that im sorry. i'm sure i'll get over it at some point. (edit: after a number of messages from people apologising for messaging me after reading this i  think i should state that is meant to be an apology from me as to why it takes so long to get back to you. not a hint to stop messaging me! kk thankyou all who care :)

As for an update, i had a scan a few months ago, cant quite remember when, probably april. although this time i had the scan in my home department where i work in wales which was really nice. obviously i had to go to london for the results and to talk to my neuro-oncologist. it did show growth unfortunately. There is now three areas of growth surrounding the scar tissue from surgery, (anterior, superior and posteriorly of the cavity into the motor cortex. The anterior and was present was in the scan prior to my latest scan although it has grown quite a bit and the other two areas have come about significantly since the last scan although were present to small degrees just not noted upon at the time.

after trying to explain my scan to people with the image infront of them over the phone i realise it's hard to explain whats what here so im going to provide an edited scan too. red areas are areas of growth and in green is the scar tissue cavity from surgery.

For reference im going to provide the scan previous although not from the same angle, sorry, i dont have access to all of it right now. anyway in these you can see the bright white cavity and the anterior portion of the tumour infront of it.

My specialist has agreed that at this stage i do need surgery again, however its not an emergency so it will be elective surgery, which basically means, surgery is available to me when i ask for it and then when the team is ready to operate once i've decided i'm ready. The problem with that is, i dont have the courage to go through with it yet.

Brain surgery was the hardest thing i've ever done, and to be doing it all over again two years later is a bit too daunting to for me to volunteer for right now. despite the fact that i am having symtpoms again, (although coming in phases where they come for a week or two and disappear again). The constant symptoms being persistent tiredness all of the time and dizzyness when i get too overworked or stressed. which happens far easier than i'd like. The main problem is surgery isnt necessarily a fix of these symptoms. infact much of the symtpoms i have were brought on by surgery in the first place. as major brain trauma and surgery causes chronic fatigue in patients.

yes surgery will remove the pressure building up in my brain (at the expense of the risks) but if it would fix the problems which effect my day to day quality of life is unlikely. and fortunately for me, my quality of life for the most part is quite good, i feel unwell quite a lot, but i have a very flexible boss who allows me to get my contracted working hours in through flexibility of those hours. anyway i dont have the energy for proof reading this post tonight, so i hope its readable. hope your all well.

p.s. although i don't comment as much anymore, i do still continue to read my fellow brain tumour bloggers blogs all the time.


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