This is what I signed up for!

I wrote this a couple of months back when this issue first came up. Taken me a while to share. It's a bit scary! It's all happening on the 2nd of September, or you could say 6 days time.

I’m having brain surgery! Yes you read that correctly! Why? Well it’s quite complicated but I’d like to share.I’m writing this blog for a number of reasons, one of them so that, if you wish, you can keep you up to date with how I am going and what is going on. Now this entry could be quite long so you might want to go get yourself a cup of tea before sitting down and reading all of this. Off you go.....ready?....ok, let’s go! I just want to warn that what you may read here may shock some of you but I’m not good at writing or talking about this issue in a way that doesn’t shock some people, in fact I don’t think that is possible and sometimes I just spontaneously burst into tears when I talk about it so I decided to type it out. Don’t worry I’ll leave the gooey details out, there hasn’t been that many, yet!

‘Where do I start?’, that’s always the question I ask myself when talking about this and I suppose the best part to start is at the beginning.  It was 2008, third year Uni and I think it was a friday night. Mum and I had gone up to Foodland to pick up my sister from work. I was sitting there talking, then mum was talking and I was listening, then mum asked me a question but I didn’t hear and comprehend it properly and so I didn’t respond I just sat there, she asked me again, no response again. I don’t remember how long mum tried to get a response out of me but I do remember she had her hand on my shoulder for what I thought was a millisecond, I later found out she had actually been shaking me for quite some time yet I didn’t feel it at all. A few minutes later I was talking as if nothing had happened, I felt a bit weird but mum was concerned with what she had just experienced. This had happened to me before, I didn’t think much of it I thought I had just “zoned” out for a few seconds because I was really tired. All was fine to me, I told mum she was being silly, because she was really worried, I tried to assure her I was just tired. Shortly after  that, the headache came.  No, not a headache, it was like I already had a headache but to make it worse someone had decided to slam my head against the wall. You might just say migraine, but I say it was more than that because I get migraines and this ain’t no migraine. Now I had had these head slamming headaches before and strangely they had also occurred at times when I had “zoned out”. I didn’t put the two and two together. As far as I was aware nobody had ever noticed me “zoning out” although later on, after diagnosis, I recalled a few odd looks people had given me during these “zone out” periods at work. I worked at a baby store and I just assumed these weird looks were because I was serving pregnant ladies and they were shocked at the thought of me trying to sell them a pram worth $1,200 or a car seat worth $500! I was wrong.

To my utter disgust mum took me to Flinders Emergency. I was furious with her because I thought I was fine! When there was someone finally free to see us the doctor tested for all sorts of things, mum described what she had seen and I described what I’d felt. He didn’t diagnose anything there but told me he wanted me to have a CT scan and wrote a letter to my GP. I still remember that doctor, not his name, but his gentle nature. Although in someway it is thanks to him that I am now having neurosurgery if it wasn’t for him who knows what would have happened if what I’m about to describe wasn’t detected at the time. I am really grateful to have had that doctor see me that night. Now my friends who are doctors may say ‘oh they would have all done the same thing’ but I would beg to differ, there was something special about this man. So whoever you and wherever you are thanks and God bless you.

So rather confused I had the CT scan and then shortly after went to see my GP. She told me I was to have an MRI and still confused as to why, I played along. Now if anyone reading this has had an MRI of their head done they will know it is not the most pleasant experience. For me they are terrifying and seem to get worse every-time I have them, which lately has been rather frequently. If I was to describe the thoughts, how it physically feels and the emotions that occur when I have an MRI scan then we would be here for another 2 hours. Anyway, then came the results of the scan and the results = a visit to a neurologist! “Huh?”, now I was starting to get a bit anxious. Mum and I went along, and before he even told me anything he was tapping me here there and everywhere to test my reflexes then my eyes had to follow his fingers and a bunch of other stuff. Then came business time. He showed me the scans and I thought ‘yup that’s my brain, cool and...’. He pointed out something, something that was unusual. In fact he pointed out two unusual “things”. Now I have no idea what the proper names of these peculiar spots are but he explained them to me as being “lesions/tumours”. He told me they weren’t big, which was obvious by looking at the scans, but they could be the reason behind my “zoning out”. Now from here on there is a better way of describing my moments of “zoning out” and that would be to say that I was actually having seizures, epileptic seizures. ‘PARDON?! Epilepsy?’ FUCK! SHIT! WHAT THE HELL! NO! THAT’S NOT CORRECT! That is I wanted to scream out loud but instead I just sat there in shock. Mum asked the questions whilst I just sat there unsure if I had heard correctly.

I left the neurologist's office and I thought I had just been dreaming and what I had heard was not real but this was not the case and over the next few years I struggled with accepting the fact that I had/have epilepsy. I think I went through the 5 stages of grief every single day for the first year and within the first few months of beginning told got quite caught up in the stages of denial and anger, expected I suppose. Now when you say epilepsy some people freak out or get a bit squeamish and that’s ok. I was one of those people and I forgive you if you just freaked out to. I too had stereotyped this “thing” that could possible hinder one’s life. The main reason to this was because I was only really aware/been exposed to tonic clonic seizures and a very servere case of this when I worked overseas. There are many types of seizures that fall under the category of Epilepsy. I have Complex Partial Epilepsy. It’s best if you look it up if you want to know more but it’s also good to know that I don’t show all of the “signs” of complex partial epilepsy, everyone’s case is different and if you really know me you will know that I have not let this condition hinder me in the years since being diagnosed, nor will I let it!

The next two years were hard, firstly I had to finish Uni whilst my body was adapting to drugs that made me super tired. My dosage kept changing as the seizures weren’t under control and in the meantime I had a car accident, got lost in Paris (I still love that city), pretty sure I freaked out some person selling me tickets to a show when I was on holiday in Qld and a whole lot of other not very nice things happened to me. Yet the worst thing of all was that I kept this all hidden up. I told only a handful of people what I was going though and for some of you, even though you may have known me this whole time, this will also be the first time that you hear about what I had been diagnosed with and what I was going through and that has been a rookie mistake. I needed support but I thought I needed to get over it and I thought I was being selfish to share my woes and cry on someone else's shoulder as I told myself ‘I’m still better off than a lot of other people’ . It is true that I am better off than a lot of people, even in better health than millions of people throughout the world but even though this is the case the point is my issue was important to me and I needed help and that was ok. I would stress to anyone who has had the same “I’ll be ok, my problem is insignificant in comparison to others” thoughts to rethink that. If it’s important to you, then it is important and it’s ok to ask people around you for support. That’s also one of the reasons I am writing this because I am asking for your prayers and support as, as you can imagine, I’m pretty scared and may occasionally need to debrief with someone or cry on someone’s shoulder.

Now that we know the background story we’ll go back to the surgery. You might be wondering why only five years later, after being seizure free for over three years, do I now need to have brain surgery. Are you asking yourself ‘why didn’t they do it earlier?’. Well to put it simply, every year I have check-up MRI scans to keep track of these little tumors and all had been merry but recently these scans have been more frequent because in the last year one has decided to try and kick me back down to the ground by growing. Until the last couple of months the neurologist and neurosurgeon didn’t want to do anything because I was/am in good health and they didn’t believe it was worth the risk of the operation to find out what it is. Now I need to clarify that this surgery isn’t to remove the tumor, rather it is to simply take a biopsy and see what the next step is to stop it causing damage! It’s one bloody big operation for a biopsy hey! The tumour is still not large, about the size of my thumbnail, but as it is slowly growing it is the location that is the becoming the major cause for concern. My basic understanding is it’s where the brain fluid drains from, the optic nerves cross over and the pituitary gland is not far off. It’s pretty much one of the hardest and most dangerous spots in the brain to operate on! Put simply this biopsy surgery could impact my vision and possible give me short term memory loss (that’s all I’ve really been told and all I really want to know, I think). The other tumour is just sitting there, in a completely different spot, no change.

I’m not sure of the date of surgery yet but I will share the details I do know about the surgery. The surgery will take about 4 hours, in order to do it they need to shave some of my hair off, and I am really upset about that and yes I know it will grow back but I’m still sad about it. At least there is quite a few cool half shaved head, with long hair on the other side hairstyles out there at the moment. I’ll be searching for some nice headbands and practicing some side braids as well especially at first with my massive scar (3cm back from hairline and from the middle of my head down to under the ear, left side of head) After surgery I will be in the hospital for about 10 days and then there will be a 6-8 week recovery period at home. I’m not sure what this recovery period will allow me to or not do but when I have a clearer understanding I will let you know. I’m really going to miss playing sport :( BUT before you know it I will be up and running, well I hate running, but playing netball,basketball and going to the gym as well as constantly talking about music even to people who don’t care for music at all (sorry) and finding gigs to go to and planning my next overseas adventure, I’m thinking NZ this time!

To close this all, if I wasn’t a teacher I would be a professional traveller and if for some weird reason Lonely Planet declined my job application then I would want to work in the music industry. Having said that I’ll share some music when I write these blogs that help me get though times like this and may help you at any time. My favourite musician is John Mayer, he didn’t just write Your Body is a Wonderland ppl, so I will share one of his songs with you today. I wrote to one of my best friends the other week and she agrees with me that John wrote this song just for me :). It’s called The Heart of Life. I hope you have tissues nearby!

I would also like to share some thoughts/quotes/verses occasionally that encourage me and may do the same for you.

    ‘Whatever is happening in your life, don’t pre-occupy yourself with the question WHY? But rather ponder more on to WHERE these events will be bringing you. Know you are being led to somewhere beautiful, beyond your present harsh reality. Once you get to the WHERE, then you’ll know the WHY. Trust the process.”     Unknown

 I am the Lord your God. I am holding your hand, so don’t be afraid. I am here to help you. Isaiah 41:13 CEV

Well that’s it folks, thanks for reading. I ask for your prayers and positive thoughts. I have strong faith that not only am I in great professional care but that God has been and is looking after me every step of this journey.

I will keep you updated and when I am unable to blog my beautiful sister has agreed to post for me.

God bless,

Cass x