1 Year Brainaversary

WOW.

Today (February 16th) a year ago I was going into surgery to have a tumour removed from the middle of my brain. As I was being prepared for surgery I was told I would be having a full craniotomy. I would be losing a heap of hair and have a wicked huge scar on my head. When I woke up many hours later I had a tiny scar and tiny amount of hair gone and had endoscopic surgery. It saved my life. Without that surgery I had been given 6 months to a year at the most to live.  I did have a big bleed during surgery, it did some damage but I am still here, still alive and doing better every single day.

These things change your perspective. The little things that you thought were oh so very important before, just don't matter.

It's been an amazing year, its been challenging, frightening at times and yet it is possibly the best year I have had in a very long time. I have been working very hard to recover physically, mentally and emotionally. I have learned a lot about the brain and how it "heals" and the funny things it does when it thinks its under threat.

This really is the beginning of the rest of my life. I have a future now that I never dared to dream of having. I have sent off for information to start study again and I'll (hopefully ) start a traineeship in June. I am excited and inspired and very much looking forward to being more and more involved in life.

Next month (13 months post op) My husband an I are going to be taking part in the Twilight running festival here in Brisbane to raise funds for cancer research. My littlest brother and I are also putting together a team for Relay for Life (24 hour relay) in November also to raise funds for cancer research. I am overjoyed to now be ABLE to do these things and I love doing them.

I have a lot of people to thank For their help support and love along this journey. My family first and foremost for living with me with this beast in my head for eight years and through the last year in recovery. My beautiful friends who have been so gentle with me in my recovery. I can not begin to describe just how very much you have each helped and how very much of an impact it has had on my life.

There is just SO much running through my head this morning! I can't seem to grab the end of any one thread to nail it down :) I suspect it's going to be a big day of reflection.

Birthdays and Brainiversaries

I have just had my birthday the day before my 11 month Brainiversary. My Dad's birthday is the day before mine so we have for many years shared the celebration. When I was little we used to share a cake, half pink half blue.

This year I asked for a treadmill so that I can get back on my feet and not have to worry so much about getting caught out in the heat in summer or the cold in winter. I did get one and managed to find and identical one (I didn’t know I was getting one) for my Dad the day before. So now my Dad and I have matching treadmills! Dad has had a chest infection for a few years and consequently lost a lot of his basic fitness. This way he can rebuild it in his own time and not have to worry about running out of steam and being a long way from home or trying to keep up with anyone else. My wonderful husband organised for my family to come and visit and spent the day making amazing delicious diabetic friendly food. I cannot thank him enough. He also brought home some beautiful carnations for me.

As I mentioned it is also my 11 month Brainiversary. I have continued to work hard physically as well as mentally and fell like I am very much closer to being "Me" again. My husband commented yesterday that I have my sense of humour back and that I am standing up for myself more and not falling apart as soon as something is not "routine". I am adjusting to things and making plans! My Physiotherapist tis thrilled with my recent progress and attitude improvement. I'm very excited to have signed up for the Twilight running festival in March. I didn't think that I'd be doing this at 13 months post op but I am! The Festival is to raise money to find a cure for cancer. It’s an issue close to my heart so I thought it would be a good place to start. I am also hoping to do the relay for life in November.

Next month will be 12 months post op. I have decided to have a party to celebrate. I had thought to have one when I got home from surgery but I was far too tired and unwell to cope with a party or big groups of people. I'm not sure how I will manage with a big group of people next month but at least they will be family and friends and understand if I need time out. This has been an incredible journey. There are still some surprises, things I haven’t mentioned and have held on to since before surgery, but they give me even more reason to enjoy my life and love every minute that I have.
Life does not always work out the way we expect it to or the way we plan, some times it’s for the best. I am on a new journey of finding the best me I can be in my new brain. This year I will start doing some the things I put off for years due to my illness. The first will be climbing the Story Bridge. I also plan to climb the Sydney Harbour Bridge and the Auckland Bridge, for now though I'll settle for the Story Bridge.
There are always things in life sent to challenge us; it is up to us how we respond to them. You can bemoan your woes or you can look for the opportunity in them. Stay safe, stay healthy and happy.
Julia 

http://twilightrunningfestival2012.gofundraise.com.au/page/RobertsonJL <-- donation page

Please help make a difference

Dear friends,

Please check out my fundraising page: http://gotaf.socialtwist.com/redirect?l=2qyaz

I'm trying to make a difference for a great cause that is close to my heart.

I have created a fundraising page through GoFundraise to help support this cause and raise some much needed funds.

I would greatly appreciate your support by making a donation to through my web page. You can also leave personal messages and get involved yourself. 

Together we can make a difference.

Thank you for your help!

http://gotaf.socialtwist.com/redirect?l=2qyaz

10 Month Brainaversary!

Things to update. I had my scan and it came back to hypolordosis and osteophytes. So no spinal surgery for me *happy dance* I will be having LOTS more physiotherapy but I can mange that. My latest round of bloods came in as well. Best bloods EVER! No cancer markers found *Happy dance again*
Have been madly preparing for Christmas which got sneaky and caught up while I wasnt looking. I have just finished the 2nd christmas cake (the first was devoured by the boys). The pudding is ready to go. Shopping is done (I think) I made a list and then promptly forgot to update it in the middle so I THINK I have everyone covered but there is a lingering doubt... the chilling thought I have forgotten someone cringe.

I made 6 million steps the other week which was incredibly awesome. It gives me a great sense of achivement. I can now start exercising properly which is something I haven't been able to do for oh............. 8 years. I have an amazing team helping me out with all of this and can not believe how lucky I am.

Have a safe an happy holiday!

Hiccups

I'm now sitting at about 9 and a half months post op. Since I last posted there have been a few developments. I am heading of for a scan of my neck (3 doctors I have seen so far are recommending surgery) for the profound weakness in my left arm. Tomorrow I have a blood test. Today I am supposed to be returning a call to "Synapse" the State Brain Injury Association. 
In a lot of ways I'm getting pretty frustrated with it all. I am not looking forward to or wanting to have ANY surgeries in the new future let alone a spinal surgery so soon after brain surgery. I am not pleased about being classified/boxed/classed as having "Acquired Brain Injury" either. However I have decided that I will use whatever resources are available to me to work as hard as I can to get better. However long it takes or hard it gets. I have fought pretty darn hard to get this far, I'm not about to give up now!
I made a video about my journey through brain surgery to help me remember things and keep things in order; it has helped me to do that and much more. Another photographer on the other side of the world to contact me as he is facing brain surgery himself and was inspired by my story that life does go on and that photography isn't something that has to go away; in fact it can be a great tool. I too have been inspired throughout this journey (it is not over yet) by some incredible artist and photographers.
I could not have done any of this without the support, love and help of my family and friends and for them I am eternally grateful. All these bumps are just hiccups in the road and can be overcome. Life does and will continue to improve and so will I.
Stay safe, inspired and look after each other.

Amazing News

I saw my neurosurgeon Dr Charlie Teo, on November 1st. He had a look at my MRI and did a check up with me. The end result is that he has cleared me. No more trips to Sydney every 6 months, no more brain scans, no tumour growing back! i have "A pristine brain" Happy happy happy days. I have my life back, I have a future I didn't dare to hope for. 
I won't be properly recovered from the surgery for 18 months to 2 years but I feel SO much better already it amazes me each day I wake up not in agonising pain. My memory is getting better too. It's like having a whole new life and I intend to make as much of it as I can. At the end of this month I am doing a trip with my father in law to Bourke, Coober Pedy and Bridsville via Lake Eyre, Warburton Grove and the Goyder Lagoon. I am really looking forward to it!

8 Month Brainiversary

Yesterday was my first post op MRI. It was a bit of a challenge. First of all I am claustrophobic so I wasn’t particularly looking forward to it. When we arrived at the centre we discovered it was directly across the road from where my mother died. It was a rude shock.  I have to wait 2 - 3 days now for the results of the MRI to arrive in the mail. Those are going to be some very long days indeed.
I have been very stressed about this scan as i tis the first since surgery. I have to say I have been terrified that something will show up on the scans and I'll have to have more brain surgery. I don't ever want to have to go through this again. Recovering my memory, my self, my life over the last eight months has been a massive journey, its been an adventure and its been frightening at times.

I have been consoling, calming and attempting to de-stress myself by drowning in my photography. Playing with ideas and things I haven’t done for a while or never tried before. I am really looking forward to catching up with family and friends while I'm away and especially once the hard part is over.

I'll update more another time. Be safe, have fun and get out there and Live life.