fact: I have two brain tumours! If you want to find out more then have a read.
The last few years have have been full of many trials and tribulations but I will tell you one thing, I have learnt a lot about life.
Today marks six months since my surgery. That's hard to believe because it feels like yesterday but then it also feels like a lifetime ago. Whilst I'm happy that the operation is in the past, today presented itself with mixed emotions. I had to have an MRI at 4:45 this evening. Guess what?! Yup, I cried again. I hate these damn things. I think this one was particularly hard because it is the first MRI I have had since surgery and will show the changes, be they positive or negative. I couldn't stop thinking about it all day. It made me quite anxious and I just wanted it over and done with.
Last night I got a tad annoyed with myself. As it is currently Mad March (this hardly captures it all) Adelaide is running like a 24/7 festival and the The Garden of Unearthly Delights allowed me to get some henna and hair braiding done on Sunday. Now of course I wasn't thinking about my MRI as I was having metal beads and pretty coloured string wrapped around some hair but then last night it hit me. An mri uses magnets and magnets tend to attract metal and of course I have metal strung into my hair. So of course today, in my already worked up self, I had to cut off the beads that were at the end of my hair wrap. That's when the tears started. I know it sounds quite pathetic to some but it's hard to explain why it upset me. If you just think about the wonderful haircut that I've had for the last 6 months then maybe you'll get it. Oh well
Anyway that's it. Six months down, countless years to go!
I took this photo out the front of my house on my phone tonight (hence the terribly quality). Dusk tonight was magnificent, it reminded me of the wonders in the world and how I'm so glad to be here.
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.
The chaos from the last few weeks has almost gone. It wasn't the nicest chaos so I don't feel relaxed or like I have had holidays. As everything is calming down I will say I've been pretty bored. The highlight last week was that I got to see a dear friend who had been OS since November and of course I made it eventful by almost fainting when we were in a shopping centre. Apart from that I've been going stir crazy. It's really getting to me not being able to drive again and to make matters worse my best friend is moving house today and will now no longer be living 10 minutes away but half an hour drive or 1+ hour public transport journey.
It's summer holidays, I feel like I should be having a great time and living life to the fullest but I'm not. I still have about 2 weeks before school goes back but the outlook is that I won't be having much fun before I do (pessimistic side). This coming week is going to be stinking hot. The forecast is 40+ degrees every single day with minimum temperatures in the mid 20s. I don't like summer so probably won't go out much, not that I can anyway.
Last night I was so stir crazy and had to get out of the house that I walked up to Blackwood at 9pm, had a soy, decaf cappuccino and then walked back. I slept well and this morning I got a lift to a gym class. I was pretty nervous going into the class but it went well, I made it through.
I wrote a post earlier about looking for at least one positive thing in each day, which I have found hard over the last week for a few different reasons, but yesterday as I was walking up to Blackwood I realised my surgery was 4 months ago. That was a happy moment for me as I reflected on the progress I had made. I found a positive in my day.
I will be having driving lessons at the end of this month and have started house hunting so hopefully I can focus on those posivites in the coming weeks.
Sorry for the downer of a blog but there's no point in lying about it.
Today is the 31st of December, or you could say New Years Eve. I'm not the biggest fan of NYE. Never have been. I'm not sure why. I know that a few times I have thought I had achieved nothing in the year that I was about to farewell so wanted it to go on a bit longer so I could achieve something. I think that feeling seems to show up almost every year come the 31st of December. That highlights a bit of the pessimistic side of me I suppose. I am proud to say I think I have achieved a lot this year. I battled through quite a challenging year and through this my pessimistic side has been rather subdued. It needed to be, I made it that way. Pessimism does not help anyone in times of trouble so I decided to kick that personal trait as far away as possible. It crept back occasionally but I think I did a pretty good job controlling it. If anything this year has made me more optimistic
Having said this it obviously does not mean that I have found this year incredibly enjoyable. It has been hard. I think it's fair to say this was probably one of the hardest years of my life but I made it ((well 8 hours and 10 minutes to go) sheesh pessimist). I could not have made it on my own so thanks to all of you who sent your positive thoughts and prayed for me. Yesterday after my Grandma's funeral I met so many of her friends who knew what my family and I have been through and they told me how proud my Grandma was of me. They said that they would continue to pray for me and hearing both of these things made me teary/cry, again. I'm surprised I still had tears to spill, it was a very emotional day.
Personally I don't find a need to make new years resolutions because if I decide I want to do something within a set time frame I don't feel the need to wait until the 1st of January, I set my own date, but I am glad that that date helps others. However after all of the trials this year has presented me I think I will make a resolution, not a new resolution, so to speak, but to continue with something I have done this year. I'm going to strive to stay positive whatever may happen. Having said this I really just pray this coming year does not present as many challenges as the one that will shortly end has. I don't care for brain surgery again any time soon, well never again actually.
The day my Grandma died both mum and I were wishing this year had never happened because we went through a moment of not being able to see any good in it. It was my dad that pulled us back inline and reminded us that through all of the chaos and unexpected experiences that this year has bought upon us we have learnt a lot and definitely become stronger people. Although I never wish to face a year like this again in someways this year has been a gift. A challenging gift to accept but the rewards will be long lasting.
I made a Flipagram of my 2013 (most parts of it) if you wish to have a look (if the link works).
The last blog I wrote was about enjoying every day as if it was your last. My grandma did just that. She died peacefully in her sleep on Tuesday night. That is how she wanted to die and I am so grateful I did not have to see her die in pain. It was an unexpected death and I miss her dearly. I knew she was always there for me, always. She had so many stories to share, loved a cup of weak black tea and watched every tennis tournament that she could.
She prayed for everyone in her family every single day. She was a prayer warrior and that has meant so much to me over the last couple of years.
Grandma was on a fair dose of pain relief due to some ailments that effected her mobility and a few other things but the last time I saw and spoke to her she was bright and bubbly. I always found it funny how grandma and I could have conversations with each other about our ridiculously long waiting times to see Dr.s and what medications we were on.
I love my Grandma and I know that she is in heaven. She is able to rest in peace but I know that she is also having a blast up there.
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.
The one thing (emphasis on the word one) I like about MRIs is getting to see the images of my brain when I meet with a specialist. It's fascinating. I must admit that at first I wasn't impressed that my brain showed abnormalities but I still find it fascinating to be able to see, to an extent, what my brain looks like.
I've been reading a few blogs by other people who also have Gliomas (one of mine is called a ganglioglioma and I can't remember the name of the other one) and noticed that most of them have posted images from their MRI scans so I thought I'd jump on the bandwagon.
Here you go. Good luck finding the Gliomas! Be aware that these are a just a few images from hundreds that are taken each MRI. These images are from an MRI that was taken in March 2013.
