Wednesday, March 30, 2016

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.

February 19th and 20th was an extravaganza of epic proportions. We had so many people who volunteered their time to help us celebrate art and music while helping to raise funds for the Peace of Mind Foundation
On the Friday evening we had open mic night. Thank you to the following wonderful people for their incredible performances.
Elissa Freeman as MC
Marilyn Roberts
Lea-Anne Martin
Chris Burton
Katrina Lee
Rayvn Marnie Wynters Nyte
Francis Gilfedder
Cin De L
Violet Von Dutch (with her broken foot)
Dee Lux
Samantha Von Siren

Saturday saw the lovely Shannon Morton and the Mad hatters tea party.

Following up with the very popular Crazy Cats Bingo. The ever lovely Shannon Morton and Manna Marvel with their creative calling.

Saturday night saw the Art Show. A massive thank you to all of those who exhibited and all those who donated for the raffles. Kathy Abussi your donation was greatly appreciated.

Thank you to my incredible husband Kim Robertson for managing sound for the entire two days and then acting as DJ on the Saturday night

None of this could have happened without the creative and passionate woman Ness Jane. Supported by the fabulous Lenny Duck.

There are many more people behind the scenes who have poured the hearts into this event and I truly thank all of you for your efforts.

Ness Jane wants to make this an annual event so keep an eye out for the next Tunes for Tumours.

At the end we raised $1300 for the Peace of Mind Foundation

Many thanks to the Red Back 501st legion storm troopers for their fantastic appearance at the art show!

At the beginning of March I lost my beautiful friend Ken Rasmussen. He passed away in his sleep from a brain aneurysm. He had a huge heart and lived life in full colour. At the funeral there were so many memories shared about our Kenny. Most of them were hilarious. Ken was a funny lovable guy and will be missed dearly.

I will remember the funny little things he said and did.

He'd pat my knee excitedly and say "Hello bubby!"

He would make the most amazing things in Home Ec and then bring them to lunch with us to share whatever it was.

He'd take us all out in 'Siggy the Sigma' for drives all over the place.

When the group of us became larger, it was the 'Durvan'. we'd throw a mattress in the back and 5 or 6 of us would go to the dusk til dawn at the drive in.

We played the left right straight ahead game. Drive to an intersection and we'd each pick a direction in turn. We ended up in some of the weirdest places.

On one of our random adventures, the Urvan had a breakdown of some sort (I can't remember) when we had all had a look around to solve our problem, I noticed fluid running out of the van. I smelled it and it turned out to be ginger beer. The empty bottle had been knocked down and was flowing across the floor. That was the birth of our new war cry "It smells like........(appropriate pause).....Ginger Beer!!!"

We would occasionally be blessed with a 'Kennyism' the most memorable was "Did you know that if you park your car in the shade it doesn't get as hot?"

Kenny and Kate were the only (not family) people who came to see me when I had my fist child.

I loved my Kenny to bits. It breaks my heart that he is gone but I am lucky to have happy memories to remind me of him.

John, Kate, Pam, Daniel, Wally and Shamus, we really do need to seriously discuss having an annual (at least) dinner together. We could pick a different place each time.

I am back at Uni and studying hard. I am really enjoying Psychology. There are so many things that are making sense. There is also the added advantage that I have done so very much research in to how my own brains tumour and surgery have effected my brain that a lot of the current content is more 'ah I know a bit about this' that 'what was that??'

I have had another little hiccup (of course). A few weeks ago I was at Uni, I had just finished a lecture and felt quite odd. I had this same feeling once before. After the lecture I had around six seizures in the hall. I had another in the ambulance and a further 7 in emergency. I spent some time in resuscitation while they tried to maintain/establish airways. The following morning I had 4 seizures on the ward and coded twice. I spent a few days in hospital for further testing. I was finally given a clear diagnosis. I have non-epileptic seizure attacks.

As I understand it, at a very base level, it is like a panic attack on meth. Due to the nature of the beast, many patients feel that they are being misdiagnosed and that they may be thought to 'putting it on' 'faking it' 'mad'. I am thrilled with the diagnosis, which in itself may seem a bit crazy. Instead of having an incurable neurological disease (epilepsy) I have something that can potentially be 'cured'. It is not an electrical storm like epilepsy, it is more a problem with the way the nervous system works. The brain is in a trance like state as in hypnosis and

It is important to understand it is not epilepsy and it is not made up.

The more you can educate yourself about your condition, whatever it is, the easier it is to manage and work with.

I have managed to nail my 'trigger' down to being physically and mentally exhausted. The first time this happened was after 5 days of neuroscience/oncology conferences. Lots of processing power required and a lack of sleep. The day after this, I had my first non epileptic attack event. I spent some time in hospital and the doctors there increased my epilepsy medication. The event I had at Uni was brought on by three days of lectures, tuts, etc 9 - 5 without adequate sleep. I have to be up at 6 - 6.30 in the morning to get into campus and was going to bed far too late at night.

I was diagnosed with and treated for epilepsy for the last 5 years. Initially it was 'incase' treatment. When you have had brain surgery you tend to be more likely to have seizures so they try to head that off at the pass by medicating.

There are a few websites about NEAD which can be very helpful. I suppose the biggest thing for patients is to remember is that it is Not something they are faking. it is very real, very distressing and hard to diagnose.

Mid March was Kim's 50th. I arranged a surprise party for him at Songbirds Rain Forest Retreat. So many fiends and family came it was overwhelming. It was wonderful to see him celebrating and really enjoying himself. I could not have done it without the help of Simone Tallack. Finalising everything at songbirds was challenging. I was in hospital for the original meeting date!

This epic began in August of last year. There were lots of sneaky things happening from that time through until the day of his birthday. To throw him off, James and I took him out for a birthday lunch, it was a birthday lunch at Gold Class cinema with lunch. The movie was awesome. I told him I was taking him up the mountain for a nice dinner and that we would be staying there over night. It worked.

I may or may not do a 5 year 2 month post depending on what is happening. This has been a jam packed period. I am not planning to have another jam packed month like this one!

I hope you are all well and happy