161c per litre

On any other day my response to the person standing behind the cash register who asks me 'How was your day?' would be the scripted 'fine thanks'. However this guy wanted to know more... 'Busy?' 'Yeah' 'What did you do?' *quickly think of an appropriate answer* 'Umm, I had a few appointments' 'Ok'.

How do you tell a stranger you were at your scheduled rehab meetings with a speech pathologist and an activites co-ordinator due to your acquired brain injury? Do you tell them?

I was a bit teary today kiddo but I'm fine!

Today I am thankful for...

As I left my neurosurgeon's office today I got all teary! The tears that were welling up in my eyes were tears of relief. To put it plain and simple, everything is ok! The lesions haven't increased in size and he is really impressed with my recovery.

Today was the shortest appointment I have had with my Neurosurgeon and I only had to wait 40 minutes to see him, fastest time ever. We had a quick look at the MRIs, he asked a few questions, I asked a few and decided when I should have the next MRI. As usual I was quite anxious and he told me to relax, reminding me that our human instinct can be to worry or be anxious before there is anything to worry about. How true is this. I'm going to try very hard not to worry.

The outcome of today's appointment is something that will definitely make it into my gratitude journal tonight!

proactive

I haven't blogged for a while, apologies.

When I start typing I'll usually delete the first few lines and start afresh. I've already done this about 3 times and by about the 4th attempt I tell myself 'just write the damn thing' so I'm not changing this intro. I'm just going to type the blog!

The last few weeks have been challenging but rewarding. School started three weeks ago and I whilst I am extremely tired at the end of each day I am really happy to be back at work. It has given me a boost of confidence and again reminded me of how I am constantly improving. I've remained in my class for most of the recess and lunch breaks we have at work so that I can have some quiet time and catch my breath, clear my head and prepare myself for the next lot of trouble makers. This has definitely been helpful in getting me through each day. I haven't asked another teacher to step in so I can have a quick break but did warn them that I may need some help. Thankfully I haven't needed this help.

Surgery was just over 5 months ago now. The time has flown but at the same time the healing process is a long one. Whilst I am glad surgery was "quite some time ago" I have been disappointed or perhaps more frustrated recently that most people who see me and know I have been through surgery think I am completely back to my pre-op self. It's really quite upsetting. I hope it's something that they never have to experience so I suppose I can't really expect empathy but I do hope for some sympathy when I give them a gentle reminder that I am not yet 100% better. Having said this I feel like I'm almost there.

I love reading other people's blogs and the detail that some put into them is fantastic but I always wonder how long it must take them to type up such detailed accounts of their day/week/month. I don't have the memory or enough concentration to go into such detail so here is a list of things that has happened in the last month.

• another visit to the Dr.s
• waiting anxiously for the letter from the Department of Transport informing me I am clear to drive
•  wasted $80+ dollars on medication as I forgot to take my medication out of the car and it so happened to be 46 degrees that day
• no migraines
• I returned to the gym
• new haircut/colour
• ventured into public/work without wearing a headband for the first time since surgery

On the non-medical side of things

•  my brother turned 21 so now I'm feeling quite a bit older
•  started house hunting and am not enjoying it
• experienced the hottest day/summer on record in South Australia and our house survived without air-conditioning.
• packed a bag for possible emergency evacuation as there was an uncontrolled bushfire in the nearby national park
• first "usual" paycheck since last September
• became addicted to online UNO
• Watched almost every episode of Downton Abbey

I'm feeling quite happy at the moment. I'm happy with life but excited for change. I'm particularly happy at the moment because I FINALLY received the news that I can drive again. Welcome back independence! I must admit I am quite nervous to drive independently, especially during peak hour so I will probably be venturing to work earlier than usual and leaving a tad later.

On another note, I wanted to share a TED talk. I watched it the other day when I was having some quiet time in my classroom. It's about Introverts, the positive side, which is nice to hear. As I was listening to it I was thinking to myself 'yup that's me, yup that too, and that' but it also made the point that us introverts aren't constantly introverrted, which I think was a very important thing to remember. I suppose I wanted to share this talk because I think it helps explain why being quiet, not seeking attention and enjoying solitude, doesn't mean you don't have a story to tell, an idea to share or don't connect with people. Whilst writing this blog doesn't appear to be a characteristic that an introvert might display in a way it is actually a reflection of me being a bit of an introvert. It has allowed me to ponder, reflect and search for the positive side of my situation in, what you might call, a quiet way instead of talking about it with every second person like others might. It is also a way of me connecting with others, probably sounds weird to extroverts but sorry that's the truth. Anyway if you're a bit of an introvert like me, I hope you can understand why I am posting this. It's not directly linked to my health but at the same time it is.

Go Introverts!

Smile

Don't go to bed angry! Perhaps today is your last day on earth and I wouldn't want my last day on earth to be one where I was angry at someone or something. Now saying 'perhaps today is your last day on earth so don't be angry' is something you most probably have heard before but think about it. Honestly think about it. Over the last few months and in particular over the last few weeks, I've thought about it a lot. I think it's part of my healing process. We all watch movies and read stories where an everyday character becomes sick or injured and drops dead the next day. We may shed a tear reading the story or watching the movie but we can mostly suspend out disbelief and get on with life after we've finished reading or watching this fictional story. Yet, what if I was that character in reality? If i dropped dead tomorrow I think it would be a bit hard for some people to pretend it hadn't occurred and get on with life when it has actually happened. Well in all honesty I am partly that character who may drop dead tomorrow and so are you. My point is, no-one can control tomorrow. Not a single human being has the capacity to do this. This might be your last day on earth and not because you've done something wrong, just because.

So to lead on from this point, you may be, as I was and still am, a relatively fit person who isn't all that sure what life will bring them but is thinking about what they might like to do when they retire (hmm I've only worked in my profession for 4 years) but then life throws you a curve ball and the plot twists. My brain tumours have been a pretty big plot twist and heading into surgery and even more so coming out of it I actually realised, not just "known", I have no control on how many days I will be on this earth. Do you get that? It actually makes me quite frustrated when people say 'yeah, yeah I get it' but do they?

When I went into surgery I was trusting a group of random Dr.s and Nurses to operate on my brain. Now what does my brain control? Me! It controls my physical self. Putting my life in the hands of others felt like that they were the ones who could control what happened. I had no control over the surgery and at the same time they had no control over, let's say the weather, who was to know if a bolt of lightning would come pelting through the ceiling and take out my medical team, therefore sending us elsewhere. Does that make sense? I'm actually finding it quite hard to express and I think it may be because it actually a mixture of emotional, physical and spiritual experiences. This realisation has flooded my body. In a way I feel that it is not something that can be fully cognitively understood by reading, it needs to be experienced. We will all experience it one day or another but I think it is really important to acknowledge it starting now. Don't let it stop you making plans for your future or scare you but let it help you live life to the fullest.

I would like to clarify what I mean when I say I'm frustrated when people declare they understand that they may drop dead tomorrow, but say it as if it were a passing comment. It doesn't mean I'm angry, although if I were to look in a dictionary that is probably what frustration means, it means I want people to be thankful and enjoy each day. There are obviously times that you simply cannot enjoy or hours or whatnot but surely there is a window of opportunity each day. Harder said than done I realise but have a go.

I know this post sounds quite negative but through the negativity in it I am trying to encourage you to look for the positives in your life. I don't know what they are for you but I know what mine are and I'm trying my hardest to appreciate them more and smile.

That's enough for today.

Have a great day all.

I've got this

It fascinates me how concerned about me some of the Dr.s and my immediate family were the first week after my surgery. I personally knew I was ok but they didn't. It's weird. I think talking about it with others now is interesting and can be quite amusing. My mum told me she knew I was OK the first time I turned on the TV and saw an add for a top end hairdressing salon and I then pointed to my partially shaved head and jokingly said '$20,000'. Apparently it made her smile for a few days.

On another note I also think about how painful it must be for those who know that cognitively they understand everything but they simply cannot make themselves verbally understood to others due to brain injuries or impairments they were born with. It saddens me and was actually one of my biggest fears that I may end up like that.

I'm grateful.

and two hours later!

I saw my beloved neurosurgeon again on Tuesday. He's actually a really nice guy, just straight to the point. At first this was obviously a hard thing to accept with him telling me he thought it would be best to have brain surgery to see what mischief my brain was getting up to. This time I was happy for him to be straight to the point about my health situation as it was a positive outcome. My two gliomas (now I'm learning and starting to understand the lingo) are both different. Which is apparently quite uncommon but the positive side is that the Dr. said that I did not need radiotherapy or chemotherapy. I was so happy when I heard this. I think I asked him 'so I don't need radiotherapy or chemotherapy?' at least twice throughout the appointment because I wanted to make sure I had heard correctly.

I will still have to have them monitored for the next 10 years or so but for the moment I'm happy. I was also happy that he was happy to see how well I'm recovering as he admitted to me that he was quite concerned when he saw me in hospital the first few times as he thought my cognitive functioning had been impaired. I thought to myself 'Pfft I'm the smartest cookie in this town!'.

Oh and the last highlight, not the biggest though, was when he said to me 'who's telling you this information? You have to enjoy life.' after I talked about how the other Dr.s had said to me not to touch alcohol for a year. So last night at the pub I had one alcoholic beverage. I felt like a rebel. Well he's the Neurosurgeon and has more knowledge on the brain than all of the other Dr.s I've dealt with so I trust him.

In Repair

Six weeks ago I was packing a couple of bags and making sure I had all the forms I needed to take to the hospital. My best friend came over in the midst of my flurried state and helped me with a few things, or rather calmed me down by helping me finish one thing before I rushed off to do another task. After she left, which involved a rather short farewell because neither of us wanted to cry,

I finished off all my packing, had a shower and got into bed having decided that I would share the link to this blog with my Facebook pals as well as writing a bit of a hmm... testimony. Testimony is probably not the best word to describe it but I'm not sure what other word I would use. It was a really hard task for me to do, I'd already posted pretty much 'The Story' of the last 5 years of my life but hadn't shared it with many people and everyone I had shared it with knew about the story already, so hey! I wasn't sure what the reaction would be, if anyone would read it or whatnot but I'm glad I shared it. I was really surprised and really touched by the well wishes I got, especially from people who I didn't have much contact with anymore. Once again, I'm glad I shared it!

Anyway, I suppose this post is for a couple of reasons, the first one being to express that I agree that time flies and the second to say thank-you to those who have read my blog, whether or not you are reading this now, and have supported me. I honestly thank-you!

Look at me now, I'm doing alright! Let's see how much more I can improve in the next 6 weeks.

Knowing me, I will post another blog tomorrow because of the six week anniversary! It might not be much to you but it's a hell of a lot to me.

Back to...normality?

Have you ever tried to take a selfie? Actually just a picture of one of your eyes! It's hard work. I couldn't do it. I wanted to do it so I could show off how far the healing process of my eye has been. It will still be a few more days before it is back to how it looked before surgery took place but my goodness it's a lot better than a week ago. I posted a photo a couple of weeks back that showed the staples in my head but if you look closely at my left eyelid you will see that it looks like it had some incredible makeup artist come along and do some fantastic eye-makeup for me. Alas it was a bruise, a bloody nasty one. It wasn't just the skin that was bruised but the eyeball and as that has no skin covering it imagine the colour it was. I can't remember, as I was under rather heavy drugs, but I couldn't close my eye because it was too swollen. I don't get how that works. Anyway surgery was 4 weeks ago yesterday WOOT but as I said the eye has a bit more healing to do. I don't know how I would cope if my vision had been impaired through this surgery. I love to travel and what I bring back from travel, apart from a few trinkets, is the memories of what I have seen and experienced. I honestly don't know what my life would be like right now if my eye wasn't OK.

Apart from that the last week has been interesting. I'm tired, once again expected. I feel the most tired around midday-3pm. I'm not sure why. I admit I haven't done enough exercise and I question myself as to whether this is why I'm not sleeping well at night or because it is actually a weird feeling to not be woken up every couple of hours as I was at hospital by nurses taking blood or giving me drugs at 3am in the morning. I've had some weird dreams as well. The type of dreams where you try to wake yourself up from but when you wake up you can't remember what the dream was about and are asleep again withing 26 seconds. I'm hoping they stop soon. Could it still be the drugs from the hospital wearing off? Possibly! Actually I have no idea. I forgot to ask the neurologist on Wednesday dang it!

So yes, I saw my neurologist again on Wednesday. I was hoping he would have the biopsy results to talk through with me but nope, this was not the case! I won't know the actual results until next time I see my neurosurgeon in December. I'm assuming this means it's not an urgent matter as I can't see him before then and he hasn't contacted me. In addition, at the hospital, the neurosurgeon and the neurologist have said they don't expect radiotherapy will be necessary but we shall see when I speak to my neurosurgeon later. I passed on a report from Hamstead to my neurologist and he wasn't shocked by anything. It was a long appointment, which like every other 3rd or 4th day in hospital had him checking my reflexes and eyes. I passed with flying colours, well at least I passed. I went to pay the dreaded bill after discussing what needs to be checked and when I need another appointment and the lady at the desk informed me that my Dr. had bulk billed me for that session. WOO HOO otherwise it would have cost me $220ish dollars. Praise the Lord! I have no sick leave left and am currently waiting to see if Centrelink will pay me sickness leave. That was an alright way to end an appointment I always dread, even though my neurologist is really nice.

After that I headed off to Centrelink to lodge my sickness claim. I waited about 40 minutes, I felt like I was going to fall asleep at one stage, until someone was free to help. I handed over all of the necessary information and hopefully I will get some money to help with bills and possibly let me go out for a coffee once a week. Lastly I went over to the gym and gave them a copy of my sickness certificate so that they don't charge me whilst I'm unable to do strenuous activity.

Overall I was out doing this simple chores from about 10am - 3pm and I was so tired by the end of it all. It's frustrating but as I finish writing this it's almost 12:40am and whilst I'm tired I don't feel as tired as I did at around 3pm. One of the main things I have definitely learnt over the last month is that the body is an amazing thing/object/mechanism and this odd sleep pattern is a simple example of the complexities of it. It's not because I've been out partying til the wee hours of the morning. I've done nothing, some days literally nothing. For goodness sake I only lasted until 9ish on Saturday night and was just out for dinner.

As I was writing this blog, with a heavy focus on eyes at the beginning, it reminded me of this quote (pretty close to what he said) from a friend when I was in year 12 that I doubt I will ever forget. 'Cass you have green in your eyes!' I was bawling my eyes out at the time, about what I don't know. Typical 17 year old boy :D I admit I love Coldplay (mainly their early stuff).

Now I'm tired, gosh this is weird!

It's time!

I'm not lying when I say the last few days have been hard. I have cried, I have been really angry a few times, I am generally scared and had a few yucky "what if" moments but I think that's all normal.

Tomorrow is the day (refer to previous posts if you're not sure what I'm talking about). It's almost 11pm and I've set my alarm for 5:30am. I'm feeling ok. I'm not feeling great, I'm definitely not excited but I WILL BE OK! Yes I say this with passion. Why? Well, today when people have said to me 'I hope it goes well' I have replied 'It WILL'. because I have been reminded of Mark 11: 24 ' Therefore I tell you, whatever you ask for in prayer, believe you have received it and it will be yours.' so what so you think I have been praying for and what does this verse mean for me right now? It means that all will go well. Now I'm def not the best when it comes to talking about my faith and I know many of you who may read this may not have faith in Christ but I wanted to point something out. I have heard so many times people say to me "you are so strong, you are so brave, I couldn't hold myself together like you are etc etc" but I confess that it is not my personal strength that is getting me through this time but my strength that comes from my faith in God. Without this, I would not have been able to get out of bed every day over the last few months. Don't get me wrong, there has been times when all I have wanted to do, or actually done, is shake my fist at the heavens in anger but that does me no good. I have no control over the world or what happens but I have faith in God and need to remember that God  'commanded [me] to be strong and brave. Don't ever be afraid or discouraged! [for He] is the Lord [my] God and will be there to help me wherever [I] go.' Johsua 1:9. Is that mindboggling? Does that seem just weird? Yes! Will I fail at what I am told to do? From time to time yes I will, but God's love is unfailing, honestly.

Just before I started finishing this blog I started listening to a Podcast about healing and this verse was referred to. I find it rather fitting.

3 John 1:2

Dear friend, I’m praying that all is well with you and that you enjoy good health in the same way that you prosper spiritually.

This song has helped me sleep lately. I will play it as I turn off the light shortly.I find the story behind this song so moving, perhaps you will too.

Now it's almost 12!

Night x

Oh and here's another song that has helped me... because I can share it!