The End

It has been 6 years and 5 months since I had my brain tumour removed. It has been a long time since I have posted here. Mostly it is because life has become far more busy. I am not sure that I will post here again. Perhaps it is time to start a new blog about all the things that are happening around me!

Thank you so much for your love and support through the years.

5 years 10 months...

I am currently feeling the best I have felt in a long time.

I can honestly say I am happy.

I am proud of myself.

In a situation which as little as 6 months ago would have left me a useless puddle of tears on the floor, I just handled it. I took the steps I needed to take to fix the problem as best I could and got on with it.

There are still things in life which cause concern and I am not 100% fit and healthy but for now, I am where I am and I can go forward from here.

Life has been throwing me curve balls for a long time now, it is just life. I learn from my mishaps, missteps, mistakes and move forward. I change the things that need changing, I accept the things that need acceptance and I allow the things that need time, to have it.

I am not a fully evolved perfect human being. I’m not sure there is any such thing. I do know I am doing the best I can and trying to be the best I can be.

It has been a long time between posts. I am still involved in the brain tumour world and suspect I will be for life, however, for now I think as far as keeping notes on my progress and recovery, I am done for now.

2017 is just around the corner and brings many new adventures with it.

Stay safe, stay well and be good to each other

5 years *cough* months

I know. I have missed a whole bunch of posts.

5 Years 5 months

I thought that this time I would throw a bit of a timeline in. A reflection over the last 5 years by looking back at the blog posts I made at (n) Years 5 months.

A day

A found thing

I think these were words of wisdom passed on to the beautiful Ebony on her coming of age.

I just found them in a file on my computer (while looking for something else of course). Perhaps there is something in here you could use?

5 Years n Months

I have dropped the ball with the monthly 'anniversary' blog posts. This one should probably have been 5 Years 1 month however we are as close to 5 Years 2 months as we were from 5 and 1.

On Being Real

I have read and seen a lot lately about shaming and being slave to or conforming to society. Many of these have in some form been inspired by Amanda Palmer.

The way I live my life is so that I can be my real self where ever and when ever I am. For me some of those things are:

Question time

This morning I was asked by a friend

What would you say to your younger self today? When you look back you must be amazed at the path you have walked and your incredible strength

This is my rather wordy reply

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

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.

4 years, 2 months

Since last time…

I have had a funky chest infection which ran for 3 months and a bunch of antibiotics, IV and oral. It turns out that from all that coughing I developed costochondritis. I have some damage to the muscles in-between my ribs and all of the joints to my sternum and spine are inflamed. I found this out in my last trip to the emergency department and then being admitted. I was put on duragesic patches to manage the pain. I was in so much pain breathing that my brain was telling my body to breathe in a way that got ‘enough’ oxygen to the brain with the least movement. I had laryngospasm to add in there as well. Within a very short time for the first patch going on I realised I could breathe and realised that I had really been in quite a lot of pain.