5 years

As of today (14/02/2016) I am 5 years post op.

I am very very very lucky to be alive and I am very well aware of it. There are so many who don't make it this far.

This year instead of my annual trip to take photographs of the sunrise with friends, I will be at Tunes for Tumours an event this weekend to raise funds for the Peace of Mind Foundation.

4 Years 11 months

One to go!!!!! Not really a lot in this blog.

December was a bit crazy as per any other December. There was family, food, and fun. Having the Robertson clan here for Christmas was wonderful. Having Kaitlin, Sarah and Adam here was fantastic.

I've been accepted back into University this year. I have switched to neuro-psych instead of neuro-science. I am really looking forward to it and to being back at Uni!

Next month Tunes for Tumours will be hitting the ground running. We have 4 events over 2 days, all culminating in the art show (with Stormtroopers) You can find out more at tinyurl.com/tttickets There are links there to take you to the ticketing pages. $11.90 per event is not bad at all. That is a grand total of $47.60 for 2 days. Funds are being raised for the Peace of Mind Foundation http://www.peaceofmindfoundation.org.au this all coincides with my 5 year brainaversary on February 16th

Of course there is the BTAA meeting in Canberra as well!

4 Years 10 months

It is that time again. It seems to have come around a lot sooner than I was expecting!

Today is the anniversary of my Mum's passing. She was a big Christmas nut. Everything Christmas would come out. Decorations, crockery, glasses with little glass markers on them, the big meals to feed a small nation. There was a new Christmas T-shirt and flashing Christmas earrings. It is something I miss but I also have fond memories of all those Christmas's and the time spent with family. I have the remaining decorations that belonged to my Grandma and my Mum, I also have a little box with some of Mum's cute Christmas earrings. This is the second Christmas without my Dad.

4 Years 9 months

I left you last time with my impending week of extreme thinking. I went to the Synapse AGM, the BTAA summit, COGNO and then the Cure Cancer Foundation fun run.

4 years 8 months

It's that time of the month again. Blog post time!

Things have been pretty amazing since last post.

The lovely +Charles Strebor came to visit. +Cathy Samuels +Hendrik Ebber +Leigh Wheeler +Richard Bell +Kim Robertson and I alll went to play with fire in the rain. The next day Charles, Kim and I went to Springbrook and had some lovely quiet time together.

Things aka 4 years 7 months

"When you are a Bear of Very Little Brain, and you Think of Things, you find sometimes that a Thing which seemed very Thingish inside you is quite different when it gets out into the open and has other people looking at it"

By the time my monthly post rolls around, there will be more things to think that I can honestly remember.

4 years 6 months

4 Years 6 months

Things have changed again!

I have ended up with a whole lot of travel going on over the next few months!

This month we will be going to the Sunshine Coast for our anniversary. I'll be volunteering at a brain tumour charity fun run followed by a brain tumour conference. September Kim and I are going to Tasmania for a week! Kim and James heading off to Adelaide on their own adventure. October I head to Melbourne to volunteer at a women’s retreat for brain cancer patients followed by the BTAA summit and the COGNO ASM. Finally (as far as I know) I will be heading to Melbourne again for BioMed Link 2015!

I have, in the last few weeks, joined the Hand Up Creatives team and am organising an event in February 2016 to raise funds for another brain tumour support charity. Lots and lots of things going on that all look to be positive! I am really enjoying doing the work for the Hand Up Creatives event and overjoyed to be able to help. The purpose of the group is something that really appeals to me and the people involved are fantastic.

I feel like I have really turned a corner with everything. I am coping with life generally a lot better. I am looking forward to things and enjoying life. I actually feel happy! I've picked up photography again. That horrific 7 month chest infection/pneumonia/asthma ride truly sucked but I through that now. I am still having to deal with the effects of it like increasing my fitness, seeing a muscular-skeleto specialist about the costochondritis, a respiratory specialist for the brittle asthma, I'm still on steroids, Salbutamol, Atrovent, and Fentanyl. It could be worse!

At 4 years and 6 months I feel that I have managed to heal and get through most of the post op issues I had. I still have some memory problems and a change in my learning ability. Everything else seems to be fine. I have had the very special opportunity to walk through the pre op and post op experience with a wonderful woman on the other side of the world. Her op went very well and she is having a great recovery. I am so happy that these surgeries can go so well.

I wrote a piece for LinkedIn a couple of weeks ago about brain tumours and the assumptions people make when confronted by someone’s brain tumour diagnosis. It also explains the areas of the brain that can be effected by surgery and of elevated CFS levels in the brain. I have a couple of courses coming up which will add to those I have already completed.

All in all, life is good.

I hope you are all well and enjoying life