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.

4 years 1 month

Little bit late with this one. I’ve had a bit of an attack of life. This will be pretty short.

Amanda Palmer

I first encountered Amanda on TED talks with The Art of Asking. Since then I have followed her on twitter and Facebook. That sounds kind of Stalkery.

This is a kinda long post so I will throw some relevant pictures in here to break it up a bit :)

She has some new music out this week. You can listen to it here - Bigger on the inside

It has jumped and grabbed my heart making a rather big mess. The lyrics speak volumes. The cello, one of my favourite instruments which has always expressed emotion in a deep and soulful way, really holds me there and feeling all there is to feel and more. I have shared the link above for the song but I feel the need to post the lyrics as well so that I can explain the places that is gripped my heart and left me bare and raw.

BIGGER ON THE INSIDE

You’d think I’d shot their children
From the way that they are talking
And there’s no point in responding
Cause it will not make them stop

And I am tired of explaining
And of seeing so much hating
In the very same safe haven
Where I used to just see helping

I’ve been drunk and skipping dinner
Eating skin from off my fingers
And I tried to call my brother
But he no longer exists

I keep forgetting to remember
That he would have been much prouder
If he saw me shake these insults off
Instead of getting bitter....

I am bigger on the inside
But you have to come inside to see me
Otherwise you’re only hating
Other people’s low-res copies

You’d think I’d learn my lesson
From the way they keep on testing
My capacity for pain
And my resolve to not get violent

But though my skin is thickened
Certain spots can still be gotten
It is typically human of me
Thinking I am different

To friends hooked up to hospital machines
To fix their cancer
And there is no better place than from this
Waiting room to answer

The French kid who wrote an e-mail
To the website late last night
His father raped him and he’s scared
He asked me How do you keep fighting?

And the truth is I don’t know
I think it’s funny that he asked me
Cause I don’t feel like a fighter lately
I am too unhappy

You are bigger on the inside
But your father cannot see
You need to tell someone be strong
And somewhere some dumb rock star truly loves you

You’d think I’d get perspective
From my view here by the bedside
It is difficult to see the ones I love
So close to death

All their infections and proscriptions
And the will to live at all in question
Can I not accept that my own problems
Are so small

You took my hand when you woke up
I had been crying in the darkness
We all die alone but I am so, so glad
That you are here

You whispered:  "We are so much bigger on the inside,
You, me, everybody
Some day when you’re lying where I am
You’ll finally get it, beauty

We are so much bigger
Than another one can ever see
But Trying is the point of life

So don’t stop trying  Promise me."



And now to try and break it down without soaking my keyboard so much that is ceases to be.

You’d think I’d shot their children 
From the way that they are talking 
And there’s no point in responding 
Cause it will not make them stop  

And I am tired of explaining 
And of seeing so much hating 
In the very same safe haven 
Where I used to just see helping 

Many years ago, we were a part of a few wonderful groups of loving, giving and  supportive groups. At one point in one of the groups, we stood up for the group in a truly ugly situation and were then targeted by that group. There were emails, phone calls and drive by's (not the throwing things at your house kind). The other group turned nasty not long after I was diagnosed with my brain tumour. I have popped into a few of their events since to be told all about this evil woman (me) by people who have been there in a shorter time than I have been out. I continued to support and help the group until my mother had cancer and my own brain tumour would not allow me to continue. There was no support from this large group of people. There was either vile accusations or no contact at all.

I’ve been drunk and skipping dinner 
Eating skin from off my fingers 
And I tried to call my brother 
But he no longer exists  

I keep forgetting to remember 
That he would have been much prouder 
If he saw me shake these insults off 
Instead of getting bitter....  

I continued to sing in our band for at least a year after diagnosis and only quit when I was being taken away from gigs in an ambulance. Very rock-star, not very cool.

I have over the years lost many people I care deeply for including my parents. I do forget sometimes that they are no longer here and I cannot call them to tell them the latest news or ask advice. It hurts... a lot. There are so many things I could have been bitter about including my health but I have chosen to pick myself up, dust off and keep going.

I am bigger on the inside 
But you have to come inside to see me 
Otherwise you’re only hating 
Other people’s low-res copies  

You’d think I’d learn my lesson 
From the way they keep on testing 
My capacity for pain 
And my resolve to not get violent  

But though my skin is thickened 
Certain spots can still be gotten 
It is typically human of me 
Thinking I am different

There is so much more to me than the labels and boxes that we are put in. If you don't get to know me you won't have a clue. Pain doesn't stop. People can try and hurt you for the most insane reasons. Most of it bounces off but some of it can cut so very very deeply. I don't think of myself as different. I feel I am like everyone else who carries their own brand of hell nad deals with (Or doesn't) their own challenges.

To friends hooked up to hospital machines 
To fix their cancer 
And there is no better place than from this 
Waiting room to answer  

.....How do you keep fighting?  

And the truth is I don’t know 

I think it’s funny that he asked me 

Cause I don’t feel like a fighter lately 

I am too unhappy  

My parents both had cancer when I was a teen. Seeing my Dad hooked up to his chemo bag and watching him vomit leaves a bit of a mark. Watching the lady I called 'my spare mum' on her deathbed with cancer taking her life, makes a mark. Holding my Mum's hand (and my Dad's) as she slipped away having been fighting lung cancer, doesn't just leave a mark, it is burnt into my heart. Holding Dad's hand as he passed away did the same.

People tell me they don't know how I could have kept fighting for my life. My answer has always been "It is just what you do" like there is no other option. I don't feel much like a fighter at all over the last six months or so. I feel more like a fragile thing that cannot hold up it's own weight. I break. I break a lot.

You’d think I’d get perspective 
From my view here by the bedside 
It is difficult to see the ones I love 
So close to death  

All their infections and proscriptions 
And the will to live at all in question 
Can I not accept that my own problems 
Are so small  

You took my hand when you woke up 
I had been crying in the darkness 
We all die alone but I am so, so glad 
That you are here  

You whispered:  "We are so much bigger on the inside, 
You, me, everybody 
Some day when you’re lying where I am 
You’ll finally get it, beauty  

All of the above. Caring for my Dad, having to lift him into bed when he fell out. Checking through his prescriptions to see which ones were running out of repeats, hearing him struggle with chest infection after chest infection, buying him a wheel chair and getting him to let himself be wheeled around. He kept fighting. Right up until his last breath he fought. There was and still is to an extent a lot of crying in the darkness. Those were not the exact words that were whispered to me but largely the messages were the same. Apologising for not being the father he thought he should have been was a real kicker.

We are so much bigger 
Than another one can ever see  
But Trying is the point of life 

So don’t stop trying  Promise me."

I have found often since getting that hole drilled through my brain that I am less likely to just throw in the towel. Now I will try. It may take a whole lot more effort than before but I will give whatever it is a bloody good go. Trying is the point of life 

Largely I feel like Amanda has been in my heart and brain while writing this song. Please take a moment to step out and listen to something new. It is very much worth doing. Oh! And listen through your headphones, it is so much more immersive.

This is a link to her TED talk as well - The Art of Asking there is also a book by the same name.

Stay safe and well
J

4 years!!!!

I was lucky enough to spend Saturday celebrating my 4 year brain birthday with friends photographing the dawn at Wellington Point. I also have some very cool lithops which look like brains, on their way to me so I can plant them somewhere!

Four years ago today I was heading into and then out of surgery under the skillful hands of Dr Charles Teo aka Charlie aka the Wizard of Oz. My brain was pretty unhappy. It had been abused by the tumour sitting in the middle of it. The pressure in my brain would increase and drop off as it blocked and unblocked the flow of CSF through my brain. Consequently one half of my brain had slowly began going for a wander to meet the other half of my brain rather firmly at the front while increasing the divide at the back (that isn’t a good thing) and had as a matter of course bent the great dividing line. I was sick.

Now for some information and diagrams that you probably aren’t that interested in.

My tumour was surrounded by some of the most critical structures in the brain. Because of its location and relationship to surrounding structures, abnormal pressure caused memory issues, brain fog, insomnia, heat intolerance and more. As soon as the temperature hit 29 I would be in ridiculous amount of pain and generally unable to function.

The tumour was surrounded by the CPU or motherboard of my brain.  It connects and coordinates the lobes of the brain, the brainstem, cerebellum and spinal cord. It has four brain regions which are: the thalamus, hypothalamus, pineal gland and pituitary gland. (Highlighted in green)

It was located in the middle of some of the most fundamental and critical parts of the brain and brainstem. Atrophy of the thalamus can occur from the increased CSF pressure. The hippocampus is also affected as it forms the ‘roof’ of the ventricle and connects to the hypothalamus. The hippocampus plays an important role in memory as does the hypothalamus. (Pink)

The walls are formed by the inner structures of the thalamus. The front wall is formed by the anterior commissure which connects the left and right thalamus, and the optic chiasma. That is where the optic nerves for the left and right eye come together, as well as cross over to opposite sides before going into the thalamus and occipital lobe in the back of the brain where vision is interpreted. The posterior wall is formed by the pineal gland a structure that connects the right and left thalamus. (Blue)

The floor of the third ventricle is formed by the mammillary bodies are closely related to the hypothalamus and memories, especially memories related to smells, also connected to the hippocampus .tuber cinereum, hypothalamus, subthalamus, infundibulum, posterior perforated substance and the upper part of the midbrain called the tectum, which means roof. Remembering smells is important to all animals that forage for food. (Yellow)

The subthalamus forms a portion of the floor. The subthalamus is closely related to the hypothalamus. It also contains nerves that connect it to and allow for communication with other parts of the brain. It also communicates with the part of the brain that produces dopamine. CSF is produced from blood that has been pushed or pulled through an extra fine filter in the wall of the ventricles called the blood-brain and CSF barrier. (Purple)

This is a diagram of all the parts of my brain that were affected either by pressure from intermittent hydrocephalus pressure from the tumour itself or surgery. I had a septum pellucidotomy which is putting a window through the septum pellucidium to allow CSF pressure to equalise between ventricles.

Chances are you haven't made it this far. If you have congratulations. I hope you a happy and well!

He Killed me for $5

Nathan Weaver has, as the title says, killed me for $5. He has a new project which you can find here on fivver. For the meager sum of $5 he will write about your demise (well a character with your name) He does brilliant work!

You can read about mine here. It sounds macabre but I really enjoyed my death!

Menfolk

I am very lucky to have such amazing menfolk in my life!

Similartities

I have just put two and two together and figured out the last time I felt like this and what was going on.

Hospitalisation!

Not a part of my plan. Not that we ever plan these things!

3 years 11 months (continued)

I turned 41 this week. I am not ashamed of it, I am not embarrassed to say it. I am 41. I made it to 41. I don’t quite understand the hang ups people have with the numbers. Why is 40 so different than 40? I feel that birthdays are an important marking of time. I have a birthday in January to celebrate my birth and beginning in this life. I have a brain birthday in February to celebrate the beginning of my new life, to celebrate that miracle of surviving.

3 years 11 months

I had a great plan in my head about the things I was going to put into this post. There was my problem. The plan was in my head. I have been ill since Saturday and consequently have forgotten what my plan was.

Stories and experiences of other patients

As a part of my journey through pre op and post op I have met some amazing and inspiring people. There are some amazing stories and each of them is a testament to the power of the human spirit. Without strength, often self-advocacy and hope, getting through is very hard. One of the ladies I have met through a support group is Candy. She has allowed me to share her story with you.

Goals

Apparently this was so important that I needed to post it last night while under the influence of Stilnox (Ambien, Ambien CR, Intermezzo, Stilnoct, Sublinox, Hypnogen, Zonadin, Sanval, Zolsana and Zolfresh)

Positive post op

I know I have already posted something very much the same on Google+ however it doesn't hurt to put it out there again. I will be 4 years post op next month!

We all need a positive story to help get us through the worst of things some times so here is mine

Tl;DR - I did stuff