STILL IN SYDNEY AND STILL WAITING FOR AN MRI

2nd and 3rd November 2010


'The wind blows in a certain direction which I can't change but I can adjust my own sails to reach the destination that I am hoping for'


I remain in Sydney with a nasal gastric tube still sticking out of my nose, making my throat sore and in general really bothersome.  I have had another ECG which was absolutely perfect, so no heart problems, I am eating 'king size' meals and finishing them all, there is no way that I want to be told I have an eating disorder and I just want to return home so I am doing everything that is asked of me and more. 


Chemotherapy has reduced my kidney function so it is not functioning at the full one hundred percent, it has to be kept an eye on as it is at eighty per cent but that is not serious.  My bloods have been good including my blood sugar levels, however my phosphate has been going up and down like a yoyo and they are yet to come up with an explanation for that.


My bone density results have come back however as Mum is not with me all the time, I did not understand what the doctor said about them, all I really understood was that she was having them verified by another doctor at Westmead.  The high doses of radiotherapy that I had can affect your bones as well as the chemotherapy, I am on caltrate which is a calcium supplement so hopefully that will assist it. 


I had occupational therapy yesterday and we made cup cakes which I was allowed to have one to eat for morning tea, they were chocolate ones and were extremely light and delicious.  As you know I love cooking at home and do lots of it so this was easy for me, I am not sure if they were testing me to see if I really could cook, I feel so much like that I am been watched or examined under a microscope. 


School is nothing like at home, I much prefer my class and curriculum, I just wish I was there right now, today would be my electives, French and Textiles yet I am stuck here.  In textiles I am missing out on doing knitting and that is something that Mum has already taught me and I think I am quite expert at, now I won't get to show my Textiles teacher how good I am. 


I have still not had an MRI on my foot and Mum has questioned it over and over again and we keep getting told it will get done eventually they are busy and have to fit me in, in the meantime I have to suffer in pain and not know what has happened to it.  There were other tests that they were talking about also that have not as yet occurred.


My nights are still so lonely, I miss Cosima licking my head in the middle of the nigh and purring loudly in my ear and hearing the familiar sounds of my family as they sleep.  When I wake with pain or a nightmare, I can't call to Mum and have her comfort me, I have to stare in silence and pretend she is there.


On the Ward they had a person come and do stretch and relax classes, I was allowed to do them to try to help my muscles as they have been wasting from sitting around and I am not allowed to do my physiotherapy exercises that Rhiannon gave me at all until they know what is happening with my foot.  This is so frustrating, I was just building up my muscles and they are now wasting again, I don't see how this could be helping me progress in any way.  I wish I had my rollator here, I was doing exceptionally well with it, although I would not be able to use it because of my foot, wow what a vicious circle.


In the afternoon I got to see Mum, I count the hours each day until I see her, we always hug each other so tightly, say how much we have missed being together and how much we love each other.  Some people think that girls my age and their mother should not get along, that we should be arguing because I am becoming an individual and resent my parent, but I love Mum so much and I know that she loves me too.  Nalani and Jarrett get along with Mum really well also, we are just that sort of family, why argue with each other life is too precious to do that.


Last night when Nalani and Jarrett called, Nalani told me that she had been nominated for Student Leader for next year, I was so proud and excited for her, I think she really deserves to be selected, she is a generous, caring, responsible person who would put her heart into the position.


I had another huge breakfast this morning and then they are having me do art therapy, which is good, I guess because I like art but sometimes I feel that I am wasting my time here, I could be doing art back home. 


When you are stuck in hospital, you miss seeing the splendiferous blue sky with the wispy, cotton wool clouds floating gently, forming magical shapes, I miss the sun shinning down to warm my face and fill me with hope and the fresh air that enters my lungs and helps me breath.  Each day I am here, is  a wasted day that I could be making the most of.  I am hoping that I will be able to adjust my sails and sail home in the wind very soon.