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.
I went to my GP last week so they could fill out the annual form that says I'm fit to drive. It's this section that relates to me.
So have a guess which boxes my Dr. ticked. You probably guessed correctly.
Seizures and Space-occupying Lesion (brain tumour) but not Epilepsy. Ok so for the last ? years it's been Epilepsy but not now, is it no longer that? It is that isn't it?! What is it? I questioned her, 'umm why didn't you tick Epilepsy' 'well it's the tumour that gave you the seizures' 'well yes but I've been told it's caused me to have Epilepsy so why aren't you ticking it you used to tick it?'. She then ticked it and drew a line linking Epilepsy to Space-Occupying Lesion.
I'm so confused! Make up your mind Dr.s. Just tell me what I have! Write it down on a piece of paper in layman's terms so I know what to tick on my forms. Also how do I explain this to people? Epilepsy or not? Should I say 'I have brain tumours so they sparked seizures but it's not Epilepsy' or do I say 'My brain tumours triggered Epilepsy but because it's caused by brain tumours it's not really Epilepsy but at the same time it is'! Are you confused too?
This is too tricky. I just want to get into bed and hope that when I wake up all of this has just been a dream!
p.s this is a beautiful soundtrack! I find it very calming!
'So we will steer clear from radiotherapy and chemo for the time being'* 'PARDON' (says the voice inside my head). 'The scans show no change so that's great but will we be monitoring you continually.'
So as you may have gathered from that introduction I saw my neurosurgeon on Tuesday. As usual when I got to the clinic it was jam packed, but only in the section next to the desk, but down the corridor all of the seats were empty and the TV was off. So I wandered down to the end of the corridor, switched on the TV, chose the channel I wanted to watch and turned up the volume so it was audible. As a regular visitor I thought I may as well use the most of what was on offer. Anyway after another 2 hours of waiting to see my amazing Dr. I was finally called into his office. On the MRI report notes he had V.Good written, that was so beautiful to read! The fact that he mentioned radio and chemo therapy again startled me a bit. He had told me last time that it was off the radar but on reflection he didn't say I would never have to have either or both of these treatments. Next MRI is scheduled in 9 months. How on earth are you meant to choose a date that is suitable nine months in advance when you don't even know what you're doing in the coming week? Oh the joys!
Just as I was about to leave I asked whether or not I could go skydiving and bungee jumping. His facial expression showed concern yet, and I will make this well known to my mother that his answer was not a 'no'. He told me he wouldn't recommend it due to those bloody things called seizures, even though I haven't had one in over 4 years but really in the end it's my decision. So what do I do? Take a risk? Live a little? Or do I sit back and watch life go by? We also talked about reducing my medication but that means giving up driving for 3 months and if I have a seizure in those 3 months then we go back to square one. Sometimes it feels like a never ending cycle of down-heartening rules that I need to live by. He then went on to say 'I know we've got you wrapped up in cotton wool but...' In a way I was relieved to hear my surgeon say this because it kind of gave me a bit of justification for those moments when I actually feel trapped by so many things that my condition (terrible word) does to me. No this, no that, minimise this, maximise that. Oh well I'm still here!
I did have a migraine that day, it's the anxiety, the tension the uncertainty of what you will hear when you walk through that door and sit on that uncomfortable chair.
So in summary, even though I had a great night last night sitting on the banks of the river Torrens with some friends listening to The Rolling Stones playing at the Adelaide Oval I'm a bit flat today and you know what, that's OK, because as it is well known by many unless you have these crappy days you don't cherish the good ones.
So I didn't blog on my 1 year anniversary of having brain surgery! I had every intention of publishing a post that talked about what a milestone this was, how the last year has been, how I feel, what has changed and what has stayed the same but I just never got around to it. Work had been ridiculously busy and I couldn't muster up the energy to type up something. I'm now on school holidays and have a few hours to spare here or there!
So here it goes! 13 months ago there would have been two significant events that I would have thought of if you mentioned September the 11th. On that day in 2005 I hopped on a plane at the tender age of 18 to go and volunteer overseas for 6 months and also on that day in 2001 the horrible tragedy of the World Trade Center occurred. I now have 3 major events to link with that date. September 11, 2013 is when I underwent brain surgery.
387 days later I'm still here! I'm still breathing & singing and doing a few other things.
Since my 1 year anniversary I have had another MRI. It was the first MRI that didn't bring me to tears. Now that in itself folks is another milestone! I have also had an appointment with a Dr. from one of my rehab clinics and that was the last time I need to see her. I'll be seeing my Neurosurgeon in about a month and am praying it is all good news. Anxious as usual!
Last night I saw a show on TV called Brain Hospital: Saving Lives. I only saw half of it but it is basically a show that documents peoples journeys before and after brain surgery. I saw, literally, how they most probably cut through my skull, held my skin back and some other yucky stuff! Apart from those gruesome visuals, watching that show was, in a weird way, a gentle and positive reminder that I'm not alone in this part of the journey. I don't mean alone as in I have no friends and family there for me I mean that I was reminded that there are others who can genuinely empathise for me and I can empathise for them. I'm thinking of you fellow brain tumour bloggers! There's a big difference between sympathy and empathy.
I took the photo below at Brighton Beach this evening. It's a shame photos can't quite capture emotions.
Monday marked 11 months since my
surgery! That's a crazy truth. During the last couple of weeks I have been playing the days, hours and minutes that I remember before I
went into surgery over in my head. I remember the fear, the hope, the uncertainty and
the love that was constantly around me. Why do we remember such days and experiences so vividly? I couldn't tell you what I ate for breakfast on Monday but I can tell you the conversation I had with the nurse as I was wheeled into the operating theatre 11 months ago. I remember looking at myself in the mirror after all of the bandaging had been removed and seeing how much hair I'd loss but don't remember what color lipstick I wore yesterday. I remember getting cranky with the nurses who wouldn't let me shut my curtain at night so they could keep an eye on the patient in the bed next to me but not what I gave my sister for her birthday last year. Now obviously the examples that I just listed of what I do remember and what I don't are comparing major vs minor situations and that's probably why I don't remember what my breakfast was, what lipstick I wore or what I got my sister for her birthday. I don't know what the scientific reasoning behind memory is but for now I'll just take the stand that I remember these rather big occurrences as reminders of the journey I'm going through and how far I've come in the last 11 months. I feel the next month will have me thinking a lot more about what happened and at the same time will be quite emotional especially as I am due to have another MRI and see the neurologist to see where things are in September.
In the last year or so I have read many a blog by others who have brain tumors and I have been able to relate in many ways to many of the stories I read. One thing I've found useful and reassuring, albeit in a weird way, was reading other peoples accounts on the highs and lows of being on Keppra and Lamotrigine to control seizures. For me they are a God send of a gift but also a downright pain in the arse. I said to mum a couple of months ago that I do not recall the last time I woke up feeling re-energized (even before surgery). These drugs are draining, I suppose their purpose is to literally slow my brain down from going into overdrive and that they are doing but they also slow me down overall, physically and mentally. When you read the associated risks that come with taking these drugs it's a bit daunting. I realise now that the side effects, mostly tiredness, that I experience when taking this medication are nothing in comparison to some other bloggers who are also on anti seizure medication and have literally had intense suicidal thoughts. However there are other possible side effects, that at this stage in my life I need not worry about but in the next 10 years they may be cause for concern. I constantly and honestly hope that the scientific world will sooner rather than later discover some magic pill that cures all of this stuff that's happening in my brain without the risk of nasty side effects but hey we're still waiting for hover-boards.
Sometimes I feel like this blog is a bit selfish and that's why I don't blog as much as I did a first. A lot of the other blogs I read by people with brain tumours are having a shit time and here I am just reminiscing on a rather successful surgery. I'm not good or in all honesty really interested in researching diets and genetics and sharing all about them and how they relate to this and that. I suppose I prefer to live a bit naively and try not to stress myself out. Time will tell whether or not that's a good thing. Even though I don't have all of this amazing knowledge to share I'm still hoping, almost wishing, that my blog serves a purpose. I think that purpose could be one of encouragement and every now and then reminding us to keep on going and not give up in a terrible situation. I don't know what this blog's actual purpose is, apart from reflecting on experiences, but if you're reading this and about to have brain surgery or have just been through it I hope there is something amongst all of my blabbering that helps you today or tomorrow.
If you've been following this blog you've probably realised that I'm a softy. I cried when I was listening
to a talkback program on the radio talking about the death of
Robin Williams and depression. Apart from the horrible way through which
he left this world, I didn't really understand at that moment why I was
so troubled by his passing. I suppose one of the reasons is that
throughout my life he has starred in movies that were some of my
childhood favorites and other movies of, one might say, real depth (Mrs.
Doubtfire, Good Will Hunting, Dead Poets Society, Jumanji, Aladdin,
Hook, Flubber, Patch Adams). However I think, once again, it just hit me
how life, and each day in it, is precious. Probably not the best day to
watch Patch Adams but this scene reminds me of certain medical professionals that I have encountered over the last few years, good and not so good ( also there's a couple of scenes throughout the movie that remind me of my time in hospital).
In other news, today is my birthday and I am now 27! I keep being reminded that it's just a number.
I'm back! I didn't actually go anywhere just haven't had anything to blog about.
Anyway, I have reached a couple of milestones in the last month so thought I would share. The most significant milestone is that my specialist believed that it was time they ended my rehab program. It brought about a mixture of emotions. I was joyful yet saddened, as well as feeling a lot more confident with myself but a bit anxious about facing the rest of the journey on my own, so to speak.
Friday just gone also marked 10 months since I had surgery. Before I know it, it will be 12 months.
Last night was also a big deal for me. I got back onto the netball court and played a whole game. I was so happy that I finally did it. That was something I had been aiming to do for the last 10 months but had been very anxious about. I was only filling in but hopefully that becomes a regular thing.
On top of this I've made it halfway through the working year. I must admit I still don't know how I've done it. Being on holidays at the moment has been great. I don't usually go away during term holidays, and haven't these holidays either but have had a great time, mainly just catching up with friends.
The following sayings pretty much summarise the last month of my life.
I disabled my facebook account about a month ago. I recommend giving it a go.
I was brought to tears when I read on my Facebook feed this morning that a young boy had lost his battle with cancer on Thursday. His body had been riddled with cancer over the last two years. He wasn't even 4 years old. I didn't know this child but I had been following his journey via the Facebook page his parents had set up. Life is unfair, there's no doubt about it. This kid suffered something that no human being should have to suffer and I ask myself 'Why?'. I don't know why, I'll never know why.
The song below has been on repeat in my head for the last couple of hours. The following lyrics are so powerful when I think about this child.
'I'm alive
Even though a part of me has died
You take my heart and breathe it back to life
I fall into Your arms open wide
When the hurt and the Healer collide'
His parents have so much faith in God, for some this must be confusing (and I admit that for a short time it was for me too) when you think about what they have been through. Yet I am assured, just as his parents are, that their child of God is no longer in pain. His story is heartbreaking but faith assures us that he has been set free from the perils of this world. This may sound cliche to you, but know that it is not, for this child has been welcomed into heaven by the the arms of the Lord. Maybe he is resting in peace or maybe he's running around non stop like a lot of little boys do.
For those of us who are stuck in this world of uncertainty regarding our health, let's try our best to keep our chins up.
I don't know anyone who likes to admit that they have seen this specialist. Maybe it's just an Australian thing, who knows! I think there's this stigma that if you access this service then people see you as if you have no emotional stability and are unable to handle life (rather broad description). I think there is next to no truth in this as I'm pretty sure a lot of us have come to the realization that we can't control a lot of what happens to us in our lives and as this is the case can we have full control on how we feel about certain things? You might say yes but I wouldn't entirely believe you. Different experiences bring different emotions with them and although the way you feel about the same situation might change I beleive there will always be an initial emotional reaction, that we don't choose, that rears its ugly or beautiful head. For example I don't remember being full of joy moments after it was recommended that I should have brain surgery.
Anyway, I realised a month or so ago that over the past 7 months I have been full steam ahead trying to return my life back to whatever normal is. I put 98% of my energy into getting back to work, going to the gym, socializing, gaining my drivers license back and trying to make myself look less like a half shaved two headed zombie, so much so that I tried to push a lot of unwanted emotions away. During my appointment on Monday I was exposed to a way of thinking that explores dealing with clean discomfort and dirty discomfort. Some of you who read this might know all about it but if not and you've done the whole 'I've got no time to feel like this, go away stupid emotion' then maybe check it out.
I'm no expert and never want to be in this field of work so I'll stop there.
Don't think of a pink elephant!*
How'd you go with that?
I failed.
Gut instinct or did you choose not to think of it? ?
See I didn't mention the P word!
Anyway, time to get ready for the second lot of semi finals for Eurovision (yes some of us watch this in Australia and yes we are behind in the broadcast so no spoilers please)
Actually I'd probably prefer to see these guys tonight at the Entertainment Centre (it's sold out dang it)!
* This test might only work if the command is vocal. Like I said, I'm no expert!
I went to the local dawn service for ANZAC day today. It's such a simple way to show respect for those who fought, and those who continue to serve, for all Australian and New Zealand citizens.
It's days like today that put life back into perspective.
I had another meeting that was draining and makes you ask yourself 'why is this happening to me?' yesterday but last night I didn't worry about a thing. I just enjoyed myself. I went to see John Mayer and loved every single minute of it. I had that feeling where you think to yourself 'if only I felt this amazing all the time'. Well let me tell you, seeing John Mayer can most definitely give you that feeling, not a biased opinion at all. Who would have thought after 10 years he would still be my favourite artist and every time I have seen him, he has played my favourite song, thanks John. Last night's show was just for me (just like every other big John Mayer fan says). I should have proposed then and there. I'm still on a high! Life can be good if you let it be!
We were only 8 rows back stage left but the photos make it look as if were miles away!
We finally got to see John Mayer together. Only took us 8 years :D
I took so many photos and even though the camera on my ph is pretty good I didn't take many good shots. How do others do it? Is there a course for taking photos with your phone?
We were the happiest 5 girls on planet earth last night! Thanks for the photo Megs
It's been a very long week but thinking about it now makes me realise it was quite a significant one.
Yesterday marked 7 months since surgery! I have no idea where the last 7 months have gone. Having said that I did spend one of them sleeping most of the time, but I'm not sure what filled the other 6 months up. On top of that yesterday was the last day of school for the term (unfortunately it didn't end as one would hope it to end as two 4yr olds were so engrossed in their play that I ended up having to change wet clothing and another teacher had to disinfect the slippery dip). I'm really happy I made it through this term. Retrospectively I shouldn't have gone back to my full workload at the beginning of the term because those first few weeks of work really knocked me around. It was definitely hard and I definitely had moments where I thought I would not make it but I did.
I had a meeting with my boss and my main consultant from my rehabilitation program on Tuesday to discuss next term. Our main focus was trying to explain the type of fatigue that I still feel and how I use almost every break to regain some energy so I can make it through the next lesson. I find brain fatigue a really hard thing to explain, and as my specialist points out, unless you experience it you can't understand it. Anyway, I've been let off of yard duties again this term but I have a sense there are a few people who aren't happy with this. If I muster up the courage my speechy and I will talk a bit about this fatigue during a staff meeting so hopefully these few people won't be grumpy about it, not that I actually care about how they feel about it, because frankly it's not up to them.
After Tuesday's meeting I felt a bit more relaxed about next term but then the thought of Wednesday afternoon was a bit daunting. I yet again had a meeting with my neurologist booked in. I was a bit annoyed that I had to see him because I'd seen my neurosurgeon only a few weeks previously and was given the 'all clear' for the time being so felt like I was just going to see him to have the same thing told to me again. Having to pay $1** to see my neurologist added to the frustration however when I left I no longer cared that I had paid over half a day's pay to see him for 20 minutes. The reason for this was because he told me that he didn't believe it was necessary to continue to make appointments with him as I've been seizure free for just over 4 years and my surgery went well. It was a shock to hear this. I still have to see my neurosurgeon for ? years as he will monitor any change in my tumours but the thought of not having to see my neurologist was hard to comprehend. I've seen this Dr. over the last 6 years plenty of times. He was the one who shocked me 6 years ago telling me I had tumors and epilepsy, then he helped get my seizures under control, he was then the one who suggested that I have a consultation with my neurosurgeon. All of these experiences stirred different feelings from anxiety to rage, not at him, yet I always felt comfortable with what he was saying and trusted him and his suggestions. The thought of not having to see him makes me feels like I have reached another milestone on this long journey. It's also quite a weird thing to accept because there's now room for more uncertainty in where things are headed. I'm going to take the standpoint that things are continually getting better. He made it clear that I am more than welcome to make appointments to see him if I want to and that in itself made me feel calmer about saying goodbye as the appointment ended.
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?
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!
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.
