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.

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.

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.

3 years 5 months

I forgot to write this one

Obviously this isn't a "looking back to see how far I have come" post. This is just going to be raw and honest and real. My other posts are raw honest and real, but this one will be emotionally ragged

My father. He had a fall. He was pretty messy when he arrived at the emergency room and it would be 'just a stitch or two, some scans and then back home.

• Then it was 'Stitch, no brain bleed or oedema, but a fractured cheekbone no surgery required'.
• Then ‘No stitch, no brain bleed or oedema, but a fractured cheekbone no surgery required, and a fracture at C4 but they went sure if it was old or new so had to send it off to another hospital to double check'
• Then ‘Fractured cheekbone (no surgery required) NEW fracture at C4 and transfer to another hospital'.
• New hospital 'Fractured cheekbone (no surgery required) fracture at C4 and C6/7 disc pressing on spinal cord'
• Then 'Fractured cheekbone (no surgery required) fracture at C4 and C6/7 disc pressing on spinal cord, two codes, get him off the blood thinners (approx. 10 days) and try to clear up chest infection to perform spinal surgery'.
• Then Fractured cheekbone (no surgery required) fracture at C4 and C6/7 disc pressing on spinal cord, two codes, get him off the blood thinners (approx. 10 days) and try to clear up chest infection to perform spinal surgery OR a chest neck brace until it healed'
• Risk of death during surgery extremely high
• Risk of death after surgery high as he wouldn't be able to cough.

As the days passed he became more confused and couldn't understand what everyone was trying to tell him. Too many people. Too much information.  I explained it to him and explained new information as it came in. I made sure the nurses had on file that I needed to see the doctors who were seeing him so that I could explain to him what was happening.

Saturday night after getting home from a friend's father's funeral, the phone rang. Dad had coded again and they were struggling to get his oxygen levels up. Call Henry and Brendan and get them up there a.s.a.p. We had to make any decisions unanimously so we all had to be there. Dad's oxygen levels had dropped to 72. Even if they could get his oxygen levels up to the high 80's he would have pretty severe brain damage. Do we continue the battle to get those levels up and preserve him for a possible death during surgery? Or do we make him comfortable and let him pass with some amount of peace and dignity with his family around him. We chose to let him go comfortably and peacefully. We all said our goodbyes and told him it was okay to let go.

He got a bit confused, asked for his grandchildren, and then for me, the thing that broke me, He thought I was Mum. I am glad it gave him comfort that He thought she was there with him. It tore my heart out and I broke. I have never collapsed so completely before. I had to walk away from his bed to Kim and then fell apart. I was doubled over and couldn't breathe. Kind of like being winded. Then I had to leave the room. I crying, wept, and hurt so very much.

After I had gotten myself together and hugged everyone. We went and sat with him. I held both of his hands and the boys were there with him too. I don't remember much of the detail there. I felt his heart and breathing slow and stop and watched his face relax as he drifted off. He passed away at 4 am July 6 th 2014.

After that, there were funeral arrangements and all things that go with the passing of a loved one. The passing of time has been for me, and I suspect for other family members, odd at best. I feel like it was yesterday he passed. It wasn't. Yesterday was the funeral. It wasn't.

I am 40, married to the most amazing man, my best friend in the world. We have four children; they each have their quirks and life lessons. I have two brothers who I love dearly. My husband, the man I only have two photos of with my father. Two, in the 19 years we have been together. Just two.

I am carrying a lot of anger for a lot of things. Things past, things to come. Things I had and have no control over.

I had considered quitting University so I could look after my father better. I don't need to now, he is gone. There is no tie to keep us in this house now. I don't need to be so close to my father to care for him. He is gone. Everything has changed.

I am now flung into the great unknown. I guess I knew this was inevitable, I wasn't expecting it now. How to I hold this family together now? How do I stop my brothers and me drifting apart? How do I preserve that family connection, the events that have kept us together? The traditions.

The thing that most brings me to tears is when people say that my mum and dad would be proud of me. I had always hoped they would be. I never felt that I would accomplish anything they would be proud of me for. Not because their standards were too high, mine were.

So, as I sit here writing this, I am weeping. This is my heart. These are the events of the last few weeks. This is the beginning of a new future without my parents in it. At 15 I was terrified they would die and we would be orphaned. At 40, it hurts just as much if not more.

They are together now. That in itself is a comfort.

3 years 4 months

Since the last episode…

I had the great opportunity to meet and spend some time with other brain tumour survivor recently. She is visiting Australia from Holland. It was quite the adventure. We had agreed to meet at a coffee shop at the airport with plenty of time before her flight to Cairns. I arrived at the airport a little early, headed up through security and for the coffee shop. I waited for about an hour and a half and she still hadn’t arrived. I filtered through Facebook to try and find a phone number to call and find out where she as and discovered I didn’t have it and no one else I could contact had it either. In future exchange numbers BEFORE meeting. So in order NOT to miss her, I headed or her departure gate. The lovely ladies at the desk put a call out to ask her to come to the gate ASAP. I wandered around between the gate and security for a few hours. Meanwhile, she was downstairs. She thought I wouldn’t be able to go through security as I wasn’t on a flight. She was in a coffee shop downstairs (I didn’t know there was one downstairs) at the same time I was walking around upstairs looking for her, she was downstairs looking for me! Eventually she came up to wait for her flight departure. We managed to have about 20 minute talking before she had to get on her flight. It was certainly a comedy of errors but well worth it in the end. 

I am writing this in the middle of a study break. I have my first, of two end of semester exams starting tomorrow morning. The last will be on Thursday. I am very much looking forward to the mid-year break. I am about a week behind on my course through University of Glasgow and the one through University of Birmingham starts June 23^rd. I am also looking forward to spending a week in Sydney catching up with Rick and Loni, Alison and maybe Simon. I hope to catch up with Charlie Teo as well (not as a patient) but we’ll see how that works out.

I have been living with my Dad three days a week. He is not well and less able to care for himself. I had to pack him off to the hospital the other week as his breathing trouble had become much worse and he had a fall and couldn’t get up. They discovered he had yet another version of one of the bugs he has had on and off for the last seven years. He had a fall in the hospital and luckily didn’t break bump, bruise or damage anything. He is now home and has started some community care services including having a nurse pop in and check up on him regularly.

I had and am having a bit of a crisis of confidence and am wondering if I am going down the right path at the moment. Part of me is terrified that I will fail miserably and not be able to continue this particular degree. Part of me is telling me that I could have just been so caught up in the post-surgical wish to give others a second chance at life after a brain tumour that I have leaped into the deep end of a very large pond I should not be in. Part of me is saying it is just pre exam nerves and lack of confidence. However it works out, I have taken a course from a different degree as one of my electives for next semester.

The weekend after exams finish I will be meeting up with another survivor. I am very much looking forward to it. It is nice to be able to reach out and exchange stories, experiences and advice with other people who have been or are in the same position.

I am booked in for some more testing on the 25^th. I’d like for it to all go smoothly. I think I have had more than my share of this stuff. It is funny that even this far out I am still having to recover from the post tumour ans post surgery effects. Brain surgery and brain tumours really mess things up more than you could imagine.

Oh and the fundraising campaign for Cure Brain Cancer Foundation will wind up on 30th June. On 14th July I will post a picture showing how much my hair has grown since it was shaved and my head was painted.

Much love from my quite exhausted self

Taking a step back / Pyjama Day / Griffith / Houston Genaux

Almost a year post op I watched a TED talk by Dr Jill Bolte Taylor and following that read her book 'A Stroke of Insight" I emailed her and she replied with encouragement and understanding.

I decided to see if I could study and started a dual certificate in Business and Business Admin. I wanted to get in to a neuroscience field to help find a cure for brain tumours. I was 16 months post op.

I finished that 5 weeks early and decided that I would study Adult Tertiary Preparation to a) see if I could remember anything long enough to make it through assessment and b) If I could do well enough to be able to go to University and pursue my dream. I finished at 2 years 9 months post op. I had managed somehow to score honours across the board.

On my 40th birthday I was accepted into Bachelor of Science (Clinical Science) just under 3 years post op. I started Uni just after my 3 year brain birthday and have had my ups and downs.

I had to fight a long time to stay alive. I had to fight to recover and improve enough to get here. I had to fight to due to a misunderstanding re my vision. I have just lost my lab access. I have spoken with some wonderful Lecturers and other amazing people at Griffith and at Eskitis. Some times it is hard to step back and look at the big picture. Sometimes I am trying to jump hurdles that are too far away.

I am constantly amazed and thankful for all the support and encouragement I have had from family and friends around the world.

I asked for people to be references for bursaries I was applying for and received a beautiful email from my brain buddy Houston. It reads as follows -

Julia Robertson.

I am writing this I guess to give a little testimonial about Julia, Her and I have a common ground that to some would find rather astounding because our commonalty is we are both survivors of a rare brain tumor.

We met in a group on Facebook back when the numbers of the members where in the low hundreds and remained as the little group of rare tumor survivors grew to just under a thousand over seven years, in which Julia has shared her setbacks, personnel grief and accomplishments.

Many of Julia's accomplishments are simply the example she gives to others, like myself. If I am having one of those days that everything from tying my shoestrings is difficult, if she knew I was letting that stop me I am sure she would tell me to put my chin in to the wind stand up and put one foot in front of the other just as I have told her in the past.

Well a bit about what Julia has done.

She has made a tee-shirts with a survivors logo on them that she wears while running in events which draws awareness to the condition that we both share. Her running, shows others that share surviving a brain tumor that sooner or later there is a possibility that they will also.

She 'DOES STUFF', like Youtube video's that graphically show the condition, the surgery and the statistics to show others. They will learn that having it and being in the 'wait and watch' that it is not the end of the road where you use it as an excuse, rather you will stand up, brush yourself off and recover as you discover being normal for the first time.

I know she does embroidery, because she has shown pictures of outfits she has made for her brother and she is rediscovering Photography which has had an effect on me, I may not be able to run but I have taken back up an old love of riding a bike which while I am out on the Erie Canal bike path I will take pictures as I to relearn the art of photography, because Julia can, I do not have an excuse, rather just a reason to start over, she leads and she does it very well by example.

I have failed to mention I am completely on the other side of the planet, just in case you are wondering just how far her motivation can reach. Furthering my education is back on my list because of Jewels.  

           

Her Friend

Houston Genaux

Rochester NY

 As I said I am constantly amazed and thankful for all the support and encouragement I have had from family and friends around the world. Things like this letter from Houston remind me of who I am, where I have come from, where I am going and most important of all, the amazing people I have coming along on this journey with me.

This is of course not meant to in any way belittle the impact and support of any of the other people in my life who have helped, supported and encouraged me along the way. Houston's email was something I had not expected and surprised me by the impact I have had on his life.

This is why I do what I do. I do it for all of these people in these photos I know and for all the others I will never get to meet.