To do list

This Tuesday saw me heading to beloved Clinic C. After the usual lengthy wait, three hours this time, I was called in to see a different Dr.. This took me by great surprise and I questioned the new to me Dr. numerous times to make sure I was meant to be seeing them and not Dr. Straight to the Point, who is the only ever neurosurgeon I've had an appointment with. I was a little bit frustrated with this meeting because after they had talked about the larger glioma they were about to farewell me until next year but then I questioned them about the other glioma. The look of "what?" went across their face and then a lot of rustling through my file, which is getting even bigger, took place. They eventually found the information and re-assured me that there was no change with that glioma as with the other. Whilst they were looking though all of the notes they were talking in medical terms and I just wanted to stop them and remind them that what they were saying makes no sense to me so please talk to me in terms that I can understand. I sat there and thought what if I was writing a report for your child and wrote about me scaffolding them within their ZPD and encouraging them to increase their associative play as well as me seeing a change in their representational use of objects within their sociodramatic play. Would I do that? No! I wonder why not?! Anyway you're on your own until next June little gliomas. Emotional exhaustion occurs each time these meetings come around, you'd think I'd be able to handle these meetings by now.

This week was brain injury awareness week in Australia. The video that I have posted below came up in my facebook newsfeed. Although I find it a bit over dramatised, in some instances, the words the lady speaks rang so true for me a couple of years ago. I related to every single thing she said and her mentioning venturing into shopping centres, holy smokes, I recall how much of a horrendous task this was to do! I'm lucky because such experiences that the lady talks about no longer occur to me and I never want to experience these again.

Anyway in other parts of my life quite a bit has changed and these changes have been positive (mostly). Life rolls on, seasons change, people come and go but I'm still here trying to...

time for change

I've made a big decision in the last couple of days. For me it's a life changing decision, however me  implementing this decision is dependent on what happens in the next couple of weeks. I hope the next couple of weeks brings my dreams to life but if it doesn't I know what I will do. If I'm to go ahead with Project TakeALeapOfFaith it brings with it a lot of uncertainty and big changes but changes can be exciting right?!

As I finally accepting that this decision is the best one for me. I had all this anger rise up in me. I was  blaming all that hasn't happened for me in the last 3 years on my brain tumours. I honestly feel so hard done by, I've felt like it's held me back from where I want to be in life. I was speaking to my psychologist about this on Friday evening and then she interrupts and says to me 'well is it holding you back now?'. I thought that was rude, all I wanted her to do was agree with me and help me work through this pain but she is right. I have been taken down a path I didn't want to go (hence the title of my blog) but at this point in time it's not the brain tumours holding me back from where I want to be, I'm holding myself back and it's now up to me to take a chance, take a leap, dive into the unknown. That was a revelation!

I was scrolling through Facebook earlier and noticed that someone had liked this status and boy oh boy is it timely.

'You may feel like your dreams have died. Everything is coming against you. Take a new perspective. Nothing in life has happened to you. It has happened for you. God has you in the palm of His hand.'

It's all about faith I suppose!

I'm saddened my what will most probably occur over the next couple of months but deep in my heart I have this sense of peace. 

I'll keep you posted!

In other crazy news I found out on Monday that one of the girls I play netball with underwent a craniotomy 3 years ago. As I joined this team not knowing any of them I didn't know anything about their personal life nor did they of mine. I had found out a couple of months ago that 2 of the girls on the team I play with are nurses on ward 5B - the ward that I was on after surgery, which in itself was crazy but to find out about MsGD was surreal. I have a brain tumour buddy on my netball team.

Oh and lastly, just in case you were wondering, the meeting with my neurosurgeon went well. My next MRI has been bumped out to a year. 

Love and blessings to you all xoxo

387 days later!

So I didn't blog on my 1 year anniversary of having brain surgery! I had every intention of publishing a post that talked about what a milestone this was, how the last year has been, how I feel, what has changed and what has stayed the same but I just never got around to it. Work had been ridiculously busy and I couldn't muster up the energy to type up something. I'm now on school holidays and have a few hours to spare here or there!

So here it goes! 13 months ago there would have been two significant events that I would have thought of if you mentioned September the 11th. On that day in 2005 I hopped on a plane at the tender age of 18 to go and volunteer overseas for 6 months and also on that day in 2001 the horrible tragedy of the World Trade Center occurred. I now have 3 major events to link with that date. September 11, 2013 is when I underwent brain surgery.

387 days later I'm still here! I'm still breathing & singing and doing a few other things.

Since my 1 year anniversary I have had another MRI. It was the first MRI that didn't bring me to tears. Now that in itself folks is another milestone! I have also had an appointment with a Dr. from one of my rehab clinics and that was the last time I need to see her. I'll be seeing my Neurosurgeon in about a month and am praying it is all good news. Anxious as usual!

Last night I saw a show on TV called Brain Hospital: Saving Lives. I only saw half of it but it is basically a show that documents peoples journeys before and after brain surgery. I saw, literally, how they most probably cut through my skull, held my skin back and some other yucky stuff! Apart from those gruesome visuals, watching that show was, in a weird way, a gentle and positive reminder that I'm not alone in this part of the journey. I don't mean alone as in I have no friends and family there for me I mean that I was reminded that there are others who can genuinely empathise for me and I can empathise for them. I'm thinking of you fellow brain tumour bloggers! There's a big difference between sympathy and empathy.

I took the photo below at Brighton Beach this evening. It's a shame photos can't quite capture emotions.

 Psalm 103:12

 Thanks for reading!

The Festival State

Today marks six months since my surgery. That's hard to believe because it feels like yesterday but then it also feels like a lifetime ago. Whilst I'm happy that the operation is in the past, today presented itself with mixed emotions. I had to have an MRI at 4:45 this evening. Guess what?! Yup, I cried again. I hate these damn things. I think this one was particularly hard because it is the first MRI I have had since surgery and will show the changes, be they positive or negative. I couldn't stop thinking about it all day. It made me quite anxious and I just wanted it over and done with.

Last night I got a tad annoyed with myself. As it is currently Mad March (this hardly captures it all) Adelaide is running like a 24/7 festival and the The Garden of Unearthly Delights allowed me to get some henna and hair braiding done on Sunday. Now of course I wasn't thinking about my MRI as I was having metal beads and pretty coloured string wrapped around some hair but then last night it hit me. An mri uses magnets and magnets tend to attract metal and of course I have metal strung into my hair. So of course today, in my already worked up self, I had to cut off the beads that were at the end of my hair wrap. That's when the tears started. I know it sounds quite pathetic to some but it's hard to explain why it upset me. If you just think about the wonderful haircut that I've had for the last 6 months then maybe you'll get it. Oh well

Anyway that's it. Six months down, countless years to go!

 I took this photo out the front of my house on my phone tonight (hence the terribly quality). Dusk tonight was magnificent, it reminded me of the wonders in the world and how I'm so glad to be here.

check this out

The one thing (emphasis on the word one) I like about MRIs is getting to see the images of my brain when I meet with a specialist. It's fascinating. I must admit that at first I wasn't impressed that my brain showed abnormalities but I still find it fascinating to be able to see, to an extent, what my brain looks like.

I've been reading a few blogs by other people who also have Gliomas (one of mine is called a ganglioglioma and I can't remember the name of the other one) and noticed that most of them have posted images from their MRI scans so I thought I'd jump on the bandwagon.

Here you go. Good luck finding the Gliomas! Be aware that these are a just a few images from hundreds that are taken each MRI. These images are from an MRI that was taken in March 2013.

Claustrophobic

I finished work for the term yesterday. Usually one would be excited! This was not my reaction. I spent yesterday, planning, organizing resources and assessing pieces of work so that everything was prepared for the relief teacher, who started today. When I left it felt weird, I was handing over everything, including my MacBook and key, to someone I don't know. I had a few thoughts go through my head! "What if she screws everything up and I come back to a complete disaster?" but the one that I'm kind of worried about the most is "will they like her more and when I go back here them complain about missing her?", now that's really self conscious but I've spent the last 2 years (almost) building relationships with these students so I hope you can see where I'm coming from. So usually when I don't have to work I would easily sleep in but i was awake at 7:30 this morning and was thinking about the year 1s.

Moving on! Last hour I received 3 phone calls from the hospital in the space of 10 minutes. Two at the same time, meaning that when I hung up from 1, there was voicemail for me. I was confused and so were they because the communication between departments is obviously not Flinders strong point. It turns out I just have to have ANOTHER MRI before surgery! This scares me, yes I'm talking about the MRI. To make things worse I have a cold (a risk you face when you work with children who don't understand basic hygiene practices)! I don't feel terrible, but it could postpone surgery. I told the Dr that rang me and he said they'll decide Monday whether or not to postpone the surgery. I just want this over and done with so all I can really say right now is 'go away cold, you're making this worse'. 

I could write more but because I no longer have the MacBook to use I'm not enjoying typing up this blog on the iPod.

Well time to rest up now! I'm going to The Gov tonight because live music makes me happy.

Schönes Wochenende x