3 years 2 months.......... WAY late

It seems my ability to track time has still not improved!

Quick update for this last month.

On April 2nd I was taken from campus to the QEII hospital with a neurological event. It was a bit special. I couldn’t write. Nothing I wrote down was actually what I was trying to write. I couldn’t think enough to make decisions; I had a MASSIVE headache and was shaking. My right arm was shaking pretty violently. I spent 7 hours in the acute care unit in the emergency department had a brain scan and bloods done. Brain scan was fine (YAY). I was allowed to go home after they finished the last bag of medication (4 hours for one bag).

I was then unable to attend University for a few days. I missed an exam and had to have it deferred. When I did return I received a ruling that I would no longer be able to attend chemistry labs as I was perceived to be an OHS risk. I was still quite unwell when I returned. I sat the original exam and bombed out pretty spectacularly in spite of application for special circumstances. I had to defer a different exam because I missed three crucial lectures.

I went to see my GP who called in sick. I ended up seeing another doctor who told me that I really should have taken all that til 17th off Uni. So it has been a bit crappy. I’ve had a headache since my trip to the hospital which varies in intensity. No one seems to know exactly what happened. It has been written up as “Atypical Migraine”, medical speak for ‘we have no idea but it hurt a lot’.

I have decided to drop chemistry til next year. I will have more time to work with disability services to make better arrangements for my labs; it will take some of the stress off. Taking four subjects this semester was overambitious.

I have continued with my macro project. I hit a pretty low point and was struggling to find a reason to pick up the camera at all. I gave myself a good solid boot in the backside and reminded myself that if I change my outlook and see all the things I HAVE achieved and the absolute bonuses of my life at this point instead of wading in the mire of self-doubt and misery, those things are really pretty awesome by comparison. I still have my down days and some of those days I will cycle really quickly between up and really down, but I am human just like everyone else.

I am currently on mid semester break and taking advantage of the time off. I am also allowing myself to have more pyjama days to try and drop some of that stress off.

I hope you are all well, as happy as you can be and at the very least making it through okay ♥

Taking a step back / Pyjama Day / Griffith / Houston Genaux

Almost a year post op I watched a TED talk by Dr Jill Bolte Taylor and following that read her book 'A Stroke of Insight" I emailed her and she replied with encouragement and understanding.

I decided to see if I could study and started a dual certificate in Business and Business Admin. I wanted to get in to a neuroscience field to help find a cure for brain tumours. I was 16 months post op.

I finished that 5 weeks early and decided that I would study Adult Tertiary Preparation to a) see if I could remember anything long enough to make it through assessment and b) If I could do well enough to be able to go to University and pursue my dream. I finished at 2 years 9 months post op. I had managed somehow to score honours across the board.

On my 40th birthday I was accepted into Bachelor of Science (Clinical Science) just under 3 years post op. I started Uni just after my 3 year brain birthday and have had my ups and downs.

I had to fight a long time to stay alive. I had to fight to recover and improve enough to get here. I had to fight to due to a misunderstanding re my vision. I have just lost my lab access. I have spoken with some wonderful Lecturers and other amazing people at Griffith and at Eskitis. Some times it is hard to step back and look at the big picture. Sometimes I am trying to jump hurdles that are too far away.

I am constantly amazed and thankful for all the support and encouragement I have had from family and friends around the world.

I asked for people to be references for bursaries I was applying for and received a beautiful email from my brain buddy Houston. It reads as follows -

Julia Robertson.

I am writing this I guess to give a little testimonial about Julia, Her and I have a common ground that to some would find rather astounding because our commonalty is we are both survivors of a rare brain tumor.

We met in a group on Facebook back when the numbers of the members where in the low hundreds and remained as the little group of rare tumor survivors grew to just under a thousand over seven years, in which Julia has shared her setbacks, personnel grief and accomplishments.

Many of Julia's accomplishments are simply the example she gives to others, like myself. If I am having one of those days that everything from tying my shoestrings is difficult, if she knew I was letting that stop me I am sure she would tell me to put my chin in to the wind stand up and put one foot in front of the other just as I have told her in the past.

Well a bit about what Julia has done.

She has made a tee-shirts with a survivors logo on them that she wears while running in events which draws awareness to the condition that we both share. Her running, shows others that share surviving a brain tumor that sooner or later there is a possibility that they will also.

She 'DOES STUFF', like Youtube video's that graphically show the condition, the surgery and the statistics to show others. They will learn that having it and being in the 'wait and watch' that it is not the end of the road where you use it as an excuse, rather you will stand up, brush yourself off and recover as you discover being normal for the first time.

I know she does embroidery, because she has shown pictures of outfits she has made for her brother and she is rediscovering Photography which has had an effect on me, I may not be able to run but I have taken back up an old love of riding a bike which while I am out on the Erie Canal bike path I will take pictures as I to relearn the art of photography, because Julia can, I do not have an excuse, rather just a reason to start over, she leads and she does it very well by example.

I have failed to mention I am completely on the other side of the planet, just in case you are wondering just how far her motivation can reach. Furthering my education is back on my list because of Jewels.  

           

Her Friend

Houston Genaux

Rochester NY

 As I said I am constantly amazed and thankful for all the support and encouragement I have had from family and friends around the world. Things like this letter from Houston remind me of who I am, where I have come from, where I am going and most important of all, the amazing people I have coming along on this journey with me.

This is of course not meant to in any way belittle the impact and support of any of the other people in my life who have helped, supported and encouraged me along the way. Houston's email was something I had not expected and surprised me by the impact I have had on his life.

This is why I do what I do. I do it for all of these people in these photos I know and for all the others I will never get to meet.

3 Years 1 month

My beautiful friend Al has inspired me to incorporate my own version of the post she made on International Women's Day (found here ), to my monthly blog post.

A little over three years ago, when my life was running out the door I came to some sudden and life changing realisations. I could not remember a time when I felt ‘good enough’. I avoided having photos taken of myself and usually pulled faces because I did not like what I saw.

In primary school – 

When we played games around fairy tales, I was always the wicked witch, the ugly sister, the troll under the bridge or the evil step mother.

I was hit by a car when I was 5 and once healed enough to return to school, I was paraded around to every single class to show the children what it looks like if you are lucky enough to live after you are hit by a car and that looking before crossing the road is very important (it is important)

A school friend asked me to learn ballet with her but then pretended not to know me in classes and giggled and pointed at me with her other friends.

In high school, I was never part of the in crowd. I was not

Smart enough

Pretty enough

Skinny enough

I then found myself a partner who reinforced all of those things for me. 

After thirty plus years of believing this, I finally figured out that those photos are important. You children, husband and family don’t care how you ‘look’ they care that you look and are happy. I had a friend take a set of photos of me (in secret) for my husband and my children in case the surgery went horribly wrong. I gave them (framed) to my husband before we made the journey to what became the beginning of my new life.

Don’t wait. Embrace life, it doesn't matter how you look the people who love you see you as you are. Have memories that can be used to look back over your life where you are comfortable in your own skin. Don’t wait til you lose another 10 kgs, do it now. You will find a million reasons not to, don’t give in to it. 

I have probably said this before but I will say it again (and again and again and again). I embrace my greying hair, my saggy bits, my wrinkles and my scars. They are part of me, part of who I am and how I got here. I embrace them and celebrate them because I know that far too many people will never reach the age I am now. I am one of the lucky few.

This month I started University. I kicked off with the chemistry linking course and managed to get through unscathed. I have been petrified of chemistry since high school. O week was pretty fantastic and I joined a couple of clubs! The first two weeks were a little scary but settled down pretty quickly. I have thoroughly enjoyed my time at Uni… until yesterday.

Yesterday I had a call asking me for a meeting to discuss my ability to study this degree. I am to go for a meeting on Friday morning. I am to bring my course profiles, text book receipts and any documentation I  have (or can lay hands on) re my disabilities (I loathe that word). Yesterday it made me angry and more determined than ever, not only to complete this degree and go on to brain tumour research, but to do it spectacularly. There was much ranting, seething and general expressions of displeasure last night.

Today. Today sucked. Today I was overtired and fragile. I made it through my Human Biology workshop and quiz without too much bother. The wheels fell off after that. It hit very hard that this dream of mine that I have been chasing could be taken away. I cried through chemistry, I cried through my chemistry workshop, I cried through my break, I cried waiting for my last lecture of the day and I cried some more when I met my wonderful husband for dinner before his lectures started for the night. I spent today feeling like maybe they were right and I could not complete this degree, I sure didn't understand anything in any lectures today (I wonder why). I felt that I should probably just go down to student services and withdraw completely. Then my heart broke a bit more. 

I fought for my life for 8 years

I have fought to recover for the last 3 years

I fought at the end of last year to get IN to University

Why must I fight again to stay, to realise my dream of helping to find a cure for this f**king beast and make sure no one else EVER has to go through the things I and others have been through?

Tomorrow is another day. I didn't quit today.

Edit - Since this post the situation has been sorted out!

3 years and counting!

Things that are awesome (in no particular order)

• James has started his TAFE course and is on his way to where he wants to be.
  
• James has finally gotten his learner driver’s license.
  
• Kim is back at Uni this year as well
  
• I have the most amazing family and friends in the Universe!
  
• I have started going to Uni and will be doing my Chem linking course next week
  
• I am finding ways around my vision issues
  
• I have just had a clear MRI
  
• I have just had a clear EEG (No epilepsy)
  
• I have started a 365 photo project to keep myself going with my photography. Each day I take a photo and upload it to my 365 albums on Google plus, Facebook and Flickr
  
• I achieved part one (of three) of one of the goals I set myself before my surgery
  
• The Paper cranes are coming along beautifully
  
• I have had a huge boost this last week to keep me on track with knowing I am doing the right thing and following the right course.
  
• I spent a lovely sunrise and breakfast with Andrew and Kim
  
• I love my life 

Re Concerning Cake, Bilbo Baggins, and Charity

OP By Patrick Rothfuss Concerning Cake, Bilbo Baggins, and Charity

I read this post and it had me nodding and giggling and nodding some more. This part in particular was so very much up my alley so to speak.

2 years 11 months.

Well. Here we are. There has been some most amazing stuff going on since my last monthly update! Including yesterdays day of mind blowing

Originally posted on (b)human which has since lost it's legs.

It was a summer day like any other. I walked down to the school to pick up the boys just as I did every school day. Just after I walked through the school gates my head exploded with pain. I made my way slowly to a bench to sit and wait for the boys to come out from their classes. While I waited I realised this was no ordinary headache. Walking was increasingly difficult and I was extremely nauseous. I called a friend and asked her to come and pick us up from the school and drop us home as I didn’t think I would be able to walk back home again.