Confidence

Hello fellow Brain Tumour Bloggers and to anyone else who reads this. I hope this post finds you in good spirits. I've been wanting to post all day and have been thinking about what I should post but even as I type this I'm still not really sure what the end product will really be about.

Health wise I don't have anything to report on apart from a few really nasty migraines and a few panic moments when I thought I was going to have a seizure. I blame those silly moments on my über tiredness that work is providing me with. My next MRI is getting closer, June, and as usual I try not to think about that.

Today is Good Friday and personally I find Easter the most important time in the Christian calendar. I remember a few years ago on a Good Friday I rocked up to my usual church and just questioned Easter and therefore Christianity as I sat there and heard the same story again. 'Like seriously, this is ridiculous! Some guy a couple of thousand years ago dies on a cross and now I'm saved. What am I saved from? Oh and yeah, then he rises from the dead and drifts on up into "heaven"!' these were the types of thoughts that went through my mind when I sat in church that Good Friday morning. I spoke to a friend after the service and moaned to her about how when we talk about it logically the whole story is ridiculous. We'd been told this story since our birth, it was ingrained in us, the names of the people and the places and the concepts of sin and grace were things we just knew. She agreed but whilst we were talking about it she eventually reminded me, as Os Guinness writes, "If ours is an examined faith, we should be unafraid to doubt. If doubt is eventually justified, we were believing what clearly was not worth believing. But if doubt is answered, our faith has grown stronger. It knows God more certainly and it can enjoy God more deeply."

Anyway I'm still a bit unsure where this is headed but I know that the doubt that bombarded me all those years ago on Good Friday most definitely led me to strengthening my faith and as I mention in previous posts, pre-surgery posts, my faith has helped me a lot over the last couple of years. There are days where I am afraid of what will show up on the MRI, in fact I'm always worried by that, or I'll have a seizure but my faith brings me hope and offers me peace.

Last weekend I was at a church and the sermon talked briefly about having the confidence on your last day on earth that God loves you and you are saved by grace. Talking about one's last day on earth is not something that I am afraid of yet at the same time not one that I would regularly wish to converse about. One reason is because pre-surgery I felt very vulnerable to the fact that I may experience my last day on earth before surgery and didn't want that to be the case, not because of fear but because there is so much more that I wish to do and see. I have thought about the words of that sermon over the last week and whilst I know that life with a brain tumour, or two, brings with it a lot of uncertainty about one's time on earth, even after successful surgery, I am confident that whatever day is my last day on earth I am loved by God and saved by grace.

I love reading other Brain Tumour Bloggers blogs, they help, encourage and inspire me. I suppose it's the one positive thing about having and following blogs about brain tumours. This post doesn't offer any information about therapies or the latest research into brain tumours but through this post I wish to wish everyone and anyone who reads this a blessed Easter weekend. Smile, laugh, show and accept love and make sure you eat a hot cross bun or three!

There are few modern day worships songs that really resonate with me, the one I have I shared below is one of those.

You were as I
Tempted and tried
Human

Romans 5:6-10

For while we were still weak, at the right time Christ died for the ungodly. For one will scarcely die for a righteous person—though perhaps for a good person one would dare even to die— but God shows his love for us in that while we were still sinners, Christ died for us. Since, therefore, we have now been justified by his blood, much more shall we be saved by him from the wrath of God. For if while we were enemies we were reconciled to God by the death of his Son, much more, now that we are reconciled, shall we be saved by his life.

We're all getting older!

So yesterday my little brother turned 22 and until 11pm last night it had slipped my mind that on top of that joyous celebration, the 4th of February (yesterday) marks the anniversary of my last seizure. Earlier this evening I couldn't remember if my sister was 24 or 25. Time really is flying by and sometimes that's a good thing

5 years seizure free! 

p.s. my sister is 25!

What is my diagnosis?

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!

Red Bull does not give you wings!

'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.

In other news I currently have clinomania!

*Or something to that effect

387 days later!

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.

 Psalm 103:12

 Thanks for reading!

Time flies when you've had brain surgery!

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.

2400

Hello everyone,

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.

 

 

Have a good day everyone! xoxo