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

4 years 5 months

The tide has turned

A huge pressure seems to have lifted. It is one of those things that you get used to. The weight hasn’t actually eased, you have just recalibrated. For as long as I can remember I have had that ever increasing weight hanging on my shoulders. Great responsibility at young age + motherhood in a less

4 years 4 months

Great news. No new brain tumour. My super blood test has ruled out what was a new suspect tumour, different type to the last one.

My brother had a beautiful wedding at the beginning of the month. The Walker family welcomes Claire into the family. It was nice to get all dressed up and go out with my wonderful husband. I think this is possibly the second time since we got together that we have been out together with him wearing a suit and me in a frock. Our gorgeous young man was one of the groomsmen. He looked lovely. We had our first ever dance together. Thank you to my sister in law Casey for the pictures!

We moved in to our new house the other weekend and are still living in the land of boxes. We are slowly creating rooms and spaces. I have had the dubious joy or sorting out the final week of the old house being in our financial possession. Monday night there was the furniture removalist who failed to show up to transport a final piece of furniture interstate. Today we had the mowing man come and slay the yard. He did a pretty good job considering. James rear window on his car has however been shattered. This afternoon I dropped 7 large bags of clothing, toys and shoes off to the community center who provided clothes for my friend's children. Later this week will be the skip bag pick up, fridge and freezer removal, final clean and (fingers crossed) book donation!

The only other thing of note to have happened since last post is that I will not be going back to Uni for the rest of this year.

I hope you are all happy safe and well!

4 Years 3 months

4 years 3 months

Big big things happening!

Health wise we are still on the search to find out what has been/is going on with my lungs/chest wall. Super blood test to determine the function of my adrenal glands has been done as well. I should have a clue how that went soon.