Brainaversaries/Brain Birthdays for those who don't 'get it'

There seems to be some confusion about my "Brain Birthday/Brainaversary"

This is not an annual attention seeking event. I understand that some people just won't understand.

This is my celebration of the life I have in credit. Long story short, if I had not had that brain surgery on February 16th 2011 I would absolutely be dead.

I think that celebrating the fact that I survived is worth it. It is a personal thing for me and I don't expect anyone else to behave any differently or 'join in'. I spent 8 years in excruciating pain which didn't ever actually stop. I was extremely ill and towards the end didn't get out of bed very much. If the temperature went over 29 degrees I really struggled. I dropped down to 70kgs. I missed a lot of my childrens childhood. I listened to them telling their friends 'oh we can't do that. Mum is sick' I spent a lot of time feeling that I was a burden and making life generally difficult for everyone.

Apart from having the tumour, it was shifting one half of my brain around. Even without blocking the CSF, the continued midline shift would have put me in a coma and death would have followed soon after. I have some extra fun things from the increase in intracranial pressure combined with the midline shift that my 'brain buddies' didn't have. One of them is partial deafness in my right ear.

The surgery took me from constant, unrelenting agony which I cannot compare to anything else or even try to describe, to no pain. Suddenly I was 'normal' and I could do all those things I hadn't been able to for the previous 8 years. To give you a tiny window in to it, I was in so much pain that I know I have significant pain now if my teeth are sore from clenching. Kim knows because I will start jiggling my foot or some other body part subconsciously.

There have been a number of things I have had to work very hard on since surgery. Movement, memory are just a couple of them. I would not change this, with all of its setbacks, hurdles and permanent damage and side effects for the alternative.

My Brain Birthday is very important to me. 

I would not have been able to spend that precious time with my Dad. I not have seen my son graduate from highschool. I would not have seen him turn 18. I would not have been able to plan that surprise party for Dads 70th. I would not have been here to see Kim achieve one of his lifes dreams. I would not have been here to see him graduate with his Masters.I would not have been here for Brendans wedding next year. There are so very many important things I would have missed.

I wouldn't be able to support those I do now who are going through the same thing I did.

I wouldn't have that cool party trick balancing things on my brain hole either!

3 years 5 months

I forgot to write this one

Obviously this isn't a "looking back to see how far I have come" post. This is just going to be raw and honest and real. My other posts are raw honest and real, but this one will be emotionally ragged

My father. He had a fall. He was pretty messy when he arrived at the emergency room and it would be 'just a stitch or two, some scans and then back home.

• Then it was 'Stitch, no brain bleed or oedema, but a fractured cheekbone no surgery required'.
• Then ‘No stitch, no brain bleed or oedema, but a fractured cheekbone no surgery required, and a fracture at C4 but they went sure if it was old or new so had to send it off to another hospital to double check'
• Then ‘Fractured cheekbone (no surgery required) NEW fracture at C4 and transfer to another hospital'.
• New hospital 'Fractured cheekbone (no surgery required) fracture at C4 and C6/7 disc pressing on spinal cord'
• Then 'Fractured cheekbone (no surgery required) fracture at C4 and C6/7 disc pressing on spinal cord, two codes, get him off the blood thinners (approx. 10 days) and try to clear up chest infection to perform spinal surgery'.
• Then Fractured cheekbone (no surgery required) fracture at C4 and C6/7 disc pressing on spinal cord, two codes, get him off the blood thinners (approx. 10 days) and try to clear up chest infection to perform spinal surgery OR a chest neck brace until it healed'
• Risk of death during surgery extremely high
• Risk of death after surgery high as he wouldn't be able to cough.

As the days passed he became more confused and couldn't understand what everyone was trying to tell him. Too many people. Too much information.  I explained it to him and explained new information as it came in. I made sure the nurses had on file that I needed to see the doctors who were seeing him so that I could explain to him what was happening.

Saturday night after getting home from a friend's father's funeral, the phone rang. Dad had coded again and they were struggling to get his oxygen levels up. Call Henry and Brendan and get them up there a.s.a.p. We had to make any decisions unanimously so we all had to be there. Dad's oxygen levels had dropped to 72. Even if they could get his oxygen levels up to the high 80's he would have pretty severe brain damage. Do we continue the battle to get those levels up and preserve him for a possible death during surgery? Or do we make him comfortable and let him pass with some amount of peace and dignity with his family around him. We chose to let him go comfortably and peacefully. We all said our goodbyes and told him it was okay to let go.

He got a bit confused, asked for his grandchildren, and then for me, the thing that broke me, He thought I was Mum. I am glad it gave him comfort that He thought she was there with him. It tore my heart out and I broke. I have never collapsed so completely before. I had to walk away from his bed to Kim and then fell apart. I was doubled over and couldn't breathe. Kind of like being winded. Then I had to leave the room. I crying, wept, and hurt so very much.

After I had gotten myself together and hugged everyone. We went and sat with him. I held both of his hands and the boys were there with him too. I don't remember much of the detail there. I felt his heart and breathing slow and stop and watched his face relax as he drifted off. He passed away at 4 am July 6 th 2014.

After that, there were funeral arrangements and all things that go with the passing of a loved one. The passing of time has been for me, and I suspect for other family members, odd at best. I feel like it was yesterday he passed. It wasn't. Yesterday was the funeral. It wasn't.

I am 40, married to the most amazing man, my best friend in the world. We have four children; they each have their quirks and life lessons. I have two brothers who I love dearly. My husband, the man I only have two photos of with my father. Two, in the 19 years we have been together. Just two.

I am carrying a lot of anger for a lot of things. Things past, things to come. Things I had and have no control over.

I had considered quitting University so I could look after my father better. I don't need to now, he is gone. There is no tie to keep us in this house now. I don't need to be so close to my father to care for him. He is gone. Everything has changed.

I am now flung into the great unknown. I guess I knew this was inevitable, I wasn't expecting it now. How to I hold this family together now? How do I stop my brothers and me drifting apart? How do I preserve that family connection, the events that have kept us together? The traditions.

The thing that most brings me to tears is when people say that my mum and dad would be proud of me. I had always hoped they would be. I never felt that I would accomplish anything they would be proud of me for. Not because their standards were too high, mine were.

So, as I sit here writing this, I am weeping. This is my heart. These are the events of the last few weeks. This is the beginning of a new future without my parents in it. At 15 I was terrified they would die and we would be orphaned. At 40, it hurts just as much if not more.

They are together now. That in itself is a comfort.

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.