Big things, SMAll things

This blog post will mostly be talking about the Supplementary Motor Area (SMA). So after seeing the surgeons this week they told me my SMA has been invaded and will need to be removed.

So basically the plan is to have a large resection of most of the tumour again, anterior, posterior and superior portions of the growth that has is occurred in the last three years. However three years ago they cut out tumour that hadn't as yet invaded important areas of the brain, (those bits were left in). this time however, they are planning on resecting the SMA because it has been invaded in its entirety now. I knew something had happened because of how useless my left hand is a lot of the time. So in the consultation i was told that i would leave surgery with a deficit in my left side. the extent of which was unpredictable, varying from lack of control and clumsiness of the left side to the complete inability to use that side. however this effect should be temporary.

Post Operative Supplementary …

Jan 01/2017 scan - surgery now necessary

Hey guys, life is okay atm, i have fairly frequent head symptoms, (dizzyness, headaches etc) but a lack of seizures so in balance its all good. my life is still plodding along as close to normal as i can keep which was the plan all along. anyway, i had a scan on 01/01/17 in my home department in wales and recently got the results in London from my neurologist. i could have the results a lot sooner considering i had the scans on a disc a month ago. but i didn't want to look at them until i had too.

so the scan results show more growth again. i'll throw the comparisons down here like last time because i found that helpful. 6 months comparison from the sagittal and 2/3 years on the axial to show you. not sure if the one the right is 2015 or 14.

As you can see the anterior portion in the frontal lobe has grown significantly this year, despite its appearance the posterior growth is more worrying as this is the growth thats into the motor cortex and is more likely unoperable and sym…

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 unfortunate…


So i travelled to London on a day off from work today to see my neuro-oncologist and have my scan with my mum and matt. The 10% of the original tumour that was left in next to my corpus callosum has been active and growing again for the past year apparently, not such good news i'm afraid.

The post contrast scan wasn't enhanced so its likely still a grade 2, which is nice considering the genetics, and, its not a surprise its back already and to be honest i'm just glad its not a higher grade Although of course, I'm very disappointed and frightened that it has started growing again. Anyway, he said the three choices we have are 1. watch and wait (recommended as i dont have bad symptoms currently, 2. have surgery again (invasive and risky) or 3. have radiotherapy (side effects, probably not effective).

As im happy with life as it as atm (minus the obvious health issues) i think i will be waiting on the next scan and kicking myself for letting my own protocols slip since i …

Personality Issues

Sorry its been such a long time since my last post. with starting work and everything else i haven't had much time and not a lot to talk about. I've been enjoying work quite a lot and everyone who works there is great but it's come with a lot of added stress to my life. and i've been upsetting people more often than i used to. i say things now without thinking them through first and have lost a lot of the social skills i used to have. things don't come easy any more and i'm quite paranoid and insecure about my ability to interact with people normally now. people, who've known me for a long time and knew me before the tumour can understand a bit more because they know i didnt used to be like this, but for all the new people i meet at work, this is the only me they know and its quite worrying.

i don't really like myself any more. i just hope it doesnt get any worse and its just a phase caused by all the changes and stress in my life. i'm paranoid becau…

Transitioning + Scan Results

So it's been a while due to university finals and my dissertation etc. But i can finally say, i passed all my exams and got a 2:1 degree and will soon have a licence to practice as radiographer. I managed to get the job i wanted in royal glamorgan hospital and i am in the process of renting an apartment in a converted chapel in llantrisant. there is lots of paperwork and stuff to go through for both the job and the apartment so i'm not sure when i'll start work yet.

I had a scan in cornwall this month, and the results suggested changes in the white matter of the brain but not tumour growth. the scans have been sent up to specialists in London to have a look at and maybe establish a better idea of what is going on. I've been really stressed lately because of exams and life in general really and symptoms have been very present frequently.

I went on holiday recently to northern italy for a family wedding which was really nice and i got to strike off visiting venice from m…

Scan Delay

Hey guys, I was supposed to have a scan on the 21st but the MRI department had a power cut so it didn't happen. we got off the train at bristol and are aiming to rearrange the scan for after exams. I've also got a job interview after exams too. so busy times ahead. everything is going okay, i built myself up for the stress of a scan and to not have it was extremely disappointing because i've got to do that all over again now.

I had my 25th birthday since my last post, which was nice! a study came out recently linking glioma growth to brain usage, which worried me a bit as i am currently writing my dissertation and studying for exams. i suppose with the location that my tumour is in it would be physical activity that pumps blood to my tumour. anyway, using your brain killing you faster is a depressing thought for sure.

Hope you are all well :)…