The rain poured down in Sydney last night but this morning it had cleared but remained overcast. I hate it when you are waiting to leave and the time seems to go backwards instead of forwards, that is what it seemed like this morning for me. Finally it was time to say goodbye to Ronald McDonald House after only a short visit this time thank goodness because I was really scared that I would have to stay longer.
The Airport was extremely busy today and as I watched the hustle and bustle around me I reflected on my week. I had found out what is going on with my knee and even though it will take a while to recover it is not too sinister. I had good news that there are no new tumours in my brain and then I had the really worrying news that my lumbar area has shown increased enhancement and something is there but exactly what is not known as yet and now my next visit, I think I will be very anxious and once again the doctors have said that this is something new and unusual, that seems to be the story of this journey but I guess that is what makes me such a unique individual. Then the remaining tumour has increased slightly but is stable so that I will take as a positive. My hearing worsening in my right ear is not good but I now know there is a device that can assist me and to have the left ear remain the same I guess is another positive. I do not know the results of my neuropsychological test but that will be interesting as when I told Mum what some of the answers I gave were she told me that it was a great try but not quite right.
Being home with my family again makes me feel so wonderful and loved and with their support and the courage that I have learnt to have I know no matter what hurdle is thrown in front of me, I can leap it and surge ahead.
From today I move on again to another stage and await my next visit to Sydney, I guess always in the back of my mind will be the thought whether the tumour remaining will become aggressive or a new one will appear and then there is the whatever is going on in my lumbar area. I will hold my head high, keep smiling and be grateful for each new beautiful day I am here. When times may seem impossible I will keep striving and I know that life's pieces will have a way of falling into place when I least expect it.
Nalani wrote another poem which is written in a form called a Sestina, it is written from my point of view.
THE UNWANTED JOURNEY
Tears trickle down my cheeks in the silent night
In my heart I know that this is God's plan for me
Yet I was not prepared to travel this journey
I do not know whether I am going to live
People are always telling me that I am brave
All I can do is hold onto a wisp of hope
People reverently pray from their hearts with hope
Many are travelling with me on this journey
So I know in my beating heart it is not just me
I am sleep deprived every single dark night
Each day I become even more determined to live
To fight this terrifying battle I must be brave
When times get tough, how can I be brave?
Especially when doctors hurt and annoy me
In the gloomy hospital it always seems like night
During times like this all I need is a little ray of hope
There is much pain and anguish on this journey
Each day, every moment I believe that I can live
I have learnt that there is a different way to live
Also how to pursue my dreams through hope
Like a lion I try to have the strength to be brave
The path I would have chosen is not this journey
I make a wish upon the first bright star at night
Then ask God above "Why did this happen to me?"
I look in the mirror and I see a totally different me
My light is brightly rekindled whenever I am brave
I am enfolded by love and this brings me hope
Resilience gives me the power to continue to live
The treatment leaves my body black and blue like the night
I have a courageous spirit to make it on this journey
Toxic drugs killing cells are part of this long journey
Doctors tell me there is no known cure for me
I want more than anything to be a rare survivor and live
Through the troublesome storm there is a rainbow of hope
Mum was there holding my hand and keeping me brave
The nurses poke and prod me all throughout the night
This is all part of my never ending journey
In my heart I will never give up hope
Cancer is the demon that is debilitating me
Now for the most exciting and extraordinary news it is like a fairytale ending where dreams come true, my book is on its way thanks to some of the most generous, dedicated and caring people you could ever know. 'Sometimes our light goes out but is blown into flame by the breath of human kindness and we owe the deepest thanks to those who have rekindled this light' I wish to express my deepest and heartfelt gratitude to everyone involved in making my wish a reality. I am keeping the title and other details a secret at present but I will let you know when my book is going to be on the shelves so watch out for it and I hope that it will not only inspire those who read it but also raise a new awareness about Brain Tumours and help raise funds for others who have to face the same devastating journey I have.