FIRST WEEK OF THE SCHOOL HOLIDAYS

29th September to 5th October 2012

We have had the most perfect Spring weather here in Canberra over the past few days, it is so magnificent to see the sun streaming into the house and have some doors and windows open letting in the fresh air with a delicate hint of spring blooms wafting in. However, the delightful weather is set to change, with rain predicted and a drop in temperature forecast for the coming week.

Last week I forgot to mention that I had seen Sarah, who not only shares the same Birthday with me, has been courageously fighting a brain tumour, shares my passion for finding a cure for brain tumours and inspires me, visited.  She is organising a truly incredible concert to raise awareness and funds for brain tumours in 2014, in fact it is going to be on our Birthday, it will be her 40th and my 16th.  The concert is going to be called Brain Storm, I know that her determination and tremendous passion for this to work will make it a huge success. 

I was also fortunate enough to have a visit from Mez, who is an Australian gymnast, she was reserve for the Australian Gymnastics Team at the Olympics.  She has fought many obstacles from injuries and other setbacks, she loves her sport and gives so much, she is a very inspiring person and her goal is to be in the team for Rio in four years time. 

This week I had my physiotherapy appointment, I have been quite uncomfortable with pain, so was really looking forward to seeing Kaitlyn.  She worked on my coccyx which has been working hard to support my spine and then that has made it painful and out of place.  As Kaitlyn released it I could feel my tightness and pain decrease in that area.  She also worked on my legs which have been painful and rather weak causing me to off balance several times.  While Kaitlyn worked on my legs, I had those amazing heat packs on my spine and buttocks.  Something so simple provides such a wonderful relief, I wish it could last much longer than it does. 

I have been working on some school assignments also this week, yes, we are on school holidays and still have work to do!  Next Term is exams so it is important to get through the work we need to cover so we will be prepared for our exams. 

On their way home to Sydney from Cooma, I also had a lovely visit from Stuart and Meryl, they always brighten my day and Stuart has experienced some of what I have as he has lived with brain tumours.  Having people like Stuart and Sarah to talk to is so special because they are the only ones who really understand what it is like to live with a brain tumour and how it changes your life. 

My very helpful and creative occupational therapist, Tom also visited, he has come up with a couple of new ideas to assist me at home and school.  He really enjoys what he does and having him supporting me makes my life just that little easier, I am so lucky to have him working with me.  He is going to have my wheelchair sped up to its maximum, I am so excited about that.  Something very exciting is that he is going to try to organise a very special wheelchair that is a much faster speed that I can have a race against Jarrett at the AIS track.  Running was something that I really loved and I had goals of been as good as Jarrett and representing the ACT, but my diagnosis changed all that and with my recurrence I know it will never happen but to just have one day when I can be fast and feel like I am at running speed would be so awesome. 

Today I had a little ride on my tricycle, the winds had come up so when I was riding into it, I found it very difficult but with it behind my back, I felt like I was flying.  I can not ride for too long as I become tired and my back becomes painful but riding today put a huge smile on my face.

Pain is a dreadful thing, it can virtually take your breath away and make you so uncomfortable, having my panamax and oxycodone helps it but as it is constantly there all the time, it really becomes tiring.  Medications are not the only thing that can help pain, using heat, having massages (thanks to Nalani) and of course physiotherapy are all great ways to assist with pain but none of these things provide permanent pain relief.  If someone could invent a medication to rid the world of pain they would be very rich and so many people who suffer all the time would be eternally grateful.

Jarrett went to a concert this week with one of his mates from the running squad, the band that they went to see was The Amity Affliction, it is not really my type of music but Jarrett likes it.  He was so excited to be going to the concert and was even more excited when at the end, the lead singer was shaking people's hands and thanking them for coming to the concert and he reached over and shook Jarrett's hand.  Jarrett was not like a girl though, you know the ones who see or touch Justin Bieber or One Direction, he did wash his hand afterwards!

All the football Grand Finals are over now, with Sydney winning the AFL and Storm winning the NRL.  Neither are teams I support, but I was cheering for them on the day.  I was elated to see the Tigers win the lower grade Grand Final.

When we turned our calendar to October, I saw the most beautiful picture of a rainbow, looking ever so rich and colourful reaching across the sky beyond a lake and bushland, then I noticed these words beside it........"Hope; sees the invisible, feels the intangible and achieves the impossible" 

I will leave you with those lovely words and hope that they inspire you as they have inspired me these last few days.