Monday, September 16, 2013

Brain Tumour No More......BUT!

On the 3rd of October it would be 19 years since I was diagnosed with a brain tumour, and 19 years of living with one, but it’s not any more. Yes, it is 19 years since I was diagnosed, but earlier this year my oncologist told me that he could find no evidence in my MRI scan of any form of malignancy or malformation and that I no longer have a brain tumour.

For me this was extraordinary news and it took me many sleepless nights trying to process it. I kept thinking about the fact that for 19 years I have said that I have a brain tumour, but now could say I had a brain tumour. Even though there is only two letters difference in those two words, the difference in my mind has been huge.

Though this was extraordinary news, what was extremely hard about it was that in spite of my no longer having a brain tumour, the reality of living with constant pain and headaches would not change. Where there once was a tumour, there was now a bundle of scar tissue, this was caused by the 10 lots of neurosurgery and radiotherapy I have had. I was told that this was the cause of my pain and headaches and they would remain with me for the rest of my life. Scar tissue is removable surgically but only if it is in an operable location and as my tumour was always inoperable so is the scar tissue.

So even though the news about my tumour was incredible, it was really hard and a real disappointment to hear that this wouldn’t change my everyday reality of pain and headaches. I felt torn between wanting to celebrate the fact that I no longer had cancer, but also felt really gutted about the fact that my life actually wouldn’t change.

To no longer have a death threat hanging over me is a huge weight off my mind.  It means that when I have a flare in symptoms that used to be a possible indication of tumour growth, I no longer need to worry that there has been some change in my tumour.  I think that until you have had cancer, you have no concept of how much having a ‘ticking time bomb’ inside of you can play on your mind.

Even though I have very little memory of the years between 2000 and 2010, I somehow still have the symptoms clearly imprinted in my brain of when my tumour grew. My visual fields would become crossed, I would fall over for absolutely no reason at all, my headaches would intensify and my balance would be significantly affected. When I have had recurrences of any of these symptoms over the years it has freaked me out. Without even being remotely aware of my thought processes, my mind would automatically jump to “perhaps the tumour has grown again?”

 It has been nothing short of unbelievable to think that I no longer have a brain tumour! I have actually had more years of my life with one than I had without one. I was 17 when I was diagnosed and on the 3rd of October it will be 19 years since my diagnosis. I am so incredibly blessed.

During my three nights awake after finding out my incredible news my thoughts went over the lives of friends who haven’t been so fortunate. I found myself wanting to weep for their loss, and that they never had the chance to feel as free as I now felt. I also wanted to weep for their loved ones who had to farewell their child, parent, or partner to cancer.

I don’t think that I will ever lose the extreme sense of gratitude to the Lord that I feel. I found myself wondering why God has given me this second chance. I also found myself asking, no, pursuing God as to what His purpose was for leaving me here. I didn’t get any clear answers to those questions but I had a strong sense that I wanted to continue seeking Him, and to continue living my life as fully as I am physically able to. I want to continue trying to do what my circumstances have led me to believe I can’t do. I dearly want to spend the rest of my life pushing the boundaries of what is achievable in living with pain throughout my body.

I don’t ever want to take life for granted and I hope I never will.

Tuesday, September 3, 2013


In my previous post on this blog I shared with you the amazing journey to my recording ‘Just This Once’. However, what I didn’t share was the extreme difficulty I had in that journey. It was not an easy path for me emotionally and there were a lot of hurdles to overcome.

When I first found out that my relatives had generously donated money to pay for me to have a day in the recording studio I was stunned and greatly excited. However, those feelings were quickly replaced with extreme anxiety. As I thought about the fact that they had all put so much money into this I felt a huge amount of pressure that my singing on the album had to be good or I would let them all down. Fortunately my sister spoke with me within 24 hours of these thoughts beginning and reassured me that that was the last thing that my relatives would want. She told me that everyone wanted me to thoroughly enjoy the experience.

In my year of jamming with my pianist, long before the recording prospect even came on the scene, I had battled greatly with insecurity about my voice. Andrew (my pianist) had given me a microphone so that I could record myself and hear “how amazing I was sounding”. However when I recorded myself and listened to it I thought I sounded not just bad, but absolutely horrendous! This was when I realised that, even though I had thought I had long overcome it, my inner perfectionist was still alive and well.

It got to the point where it ended up not being constructive in any way and so I stopped recording myself. Because of my perception of how I sounded I became extremely anxious about people, other than my parents and immediate family, hearing me sing.

Even though our house is quite large, if I had planned to spend time working on my singing, I wouldn’t do so if there were other people at our place. Even if it was at the far end of the house, I didn’t want to even risk being heard.

During the summer, in the months leading up to the recording, when it was very hot I would shut all my windows so that none of our neighbours could hear me. Luckily I have an air conditioning unit in my bedroom so I was able to keep cool at the same time.

I am incredibly grateful that I had a wonderful and very open friendship with Andrew and I was able to tell him how I was feeling. I told him how when he first came to jam with me in 2011 what had touched me the most was his being very positive about my voice at the end of the jam session on his way to the car. It had stunned me that he said that and it gave me enough confidence to keep at my singing. After telling him how I had felt he said to me that he had studied jazz for 5 years and knew a good voice when he heard one. This helped build up my confidence that this was worth pursuing.

However, the insecurity that I felt about my voice was something that travelled with me right through to the recording of our album. What was amazing was that every time I got on with singing I was always freed from it. It was always just a matter of getting over the hurdle of my perception of my voice and letting loose. Once I got going I would become so focused on the music, the lyrics, the timing etc., that all that would take over my mind. Also the sheer joy of each occasion would consume me.

On the day of our recording I was completely free from any insecurity. Even though it was the first time I had sung with anyone else other than Andrew, I felt so incredibly free. I was so excited, which was utterly liberating. I had also been very anxious as to how I would physically cope with the recording, as I find standing long very painful, but I was able to cope with it on the day of the recording.

When I eventually received the finished tracks of our album from the producer, I was so incredibly excited. It was finished and I was so thrilled with how it all sounded, even how I sounded. However, after listening to the album for a couple of weeks it got to the point where I couldn’t listen to it on my own any more as intense critical analysis of my voice would take over. The perfectionist within me was once again running riot. By the time my album release party (about a month later) came around I was once again really anxious about people hearing me sing.

What if they heard the imperfections that I could hear? What if I actually sounded terrible and everyone had just been nice in saying that I had a great voice? What if I was going to publicly humiliate myself? I had absolutely loved my recording experience, but this was different, there was going to be an audience there.

One thing that I found recurring reassurance in during the journey to recording ‘Just This Once’ and our album release party was the fact that Andrew would give me such encouragement every time we jammed. I knew he was well trained in jazz and had worked amongst professional jazz singers and so I had confidence in what he was saying. It was also greatly reassuring to know that Andrew would be there at the recording, and later at our two album release parties. Just knowing that someone who knew my voice and knew me was going to be by my side was so incredibly reassuring. I joked with him that he was my security blanket.

Now that Andrew is living and studying in Sydney, I am entering the next phase in my journey with singing. This is working with other professional musicians. Even though a part of me does still feel some mild apprehension about this, the whole journey through to my recording and the sheer joy of the release parties that followed has instilled in me a confidence that I hope will carry me through.

If you are interested in listening to ‘Just This Once’ you can do so with the two tracks that are on YouTube from the album.  They are ‘Paper Moon’ – and ‘The Boy From Ipanema’ -

The full album is also available in full on iTunes.