9th June 2010
What is it like to have a night where you sleep the whole night through? I would not know anymore, every night I wake in pain and last night was no exception. After all the examinations yesterday my right knee throbbed constantly with the most excruciating pain I have ever felt and it was so huge, then I could not even bend or straighten it properly. It was not just my knee that drove me to tears, the pain ran up from my ankle and into my bony little hip, the pain was so intense that it made that whole side feel numb and heavy. To cap it all off, I had a headache that made me feel quite dizzy, this can occur after a lumbar puncture but I have never had it happen before.
The skies were overcast and the clouds floated quickly as the wind carried them through the sky, fortunately they cleared and it was a glorious winters day with only a hint of chill in the wind. People were even sun baking on the Coogee Beach around mid morning.
I had to do a stool sample this morning which is not the easiest thing to manage. Mum had gloves and a container to work with and coped amazingly well, nursing may be a career in the future for her with all this experience she is gaining! Jarrett however just thought it was all too gross. We made our way up to SEALS to have my blood tests. It was crowded and surprisingly most of those waiting for blood to be taken were children. Finally after a long, boring wait I was called in. They had to get ice to put one of the tubes in because it had to be kept cold. There were six vials to be filled with my blood. These tests had to be taken from my vein which I actually don't mind at all. The blood nurse told me I was a great patient and she loved my beautiful smile. Some of the tests will take a couple of days for results to come through.
I still have no results for my lumbar puncture or MRI so I am hoping that no news means good news. Keeping positive has been the most important thing throughout this journey if I was not then every little challenge would have seemed like a huge mountain that I would never be able to climb.
We then met with Janine from the Sydney Children's Hospital Foundation, we talked about my book which she was amazed by. She is keen to promote it on the Foundations Website and hopes that by doing that then it would increase sales. She is going to send some information to my teacher about the Brain Tumour Fund to help with the Walk-a-Thon that is going to take place next Term in Week 5 and then she asked us to make a comment about The Sydney Children's Hospital to be placed in an article in the Canberra Times that is being done. The Sydney Children's Hospital at Randwick as part of Gold Week are having a telethon on Channel Nine on Friday and they have asked me if I can be at the hospital that morning so that a cross could be done and they could talk about my book.
After our time with Janine it was then time to go and have a weight and measure done for Endocrine. My height was checked five times because since my last measure I have shrunk, perhaps it is due to the curvature of my spine or a side effect from the radiotherapy but the height difference was 1.2cm. My weight was also checked and as it has been noted by other doctors it has gone down slightly again. In fact it is lower than what it was on completion of my chemotherapy, obviously they are concerned about this. They will check me further in September when we are due back.
We ran into a Mum, Maria who we met in Ronald McDonald House last year. Her little boy Alex has had transplants and even though he is now disease free,he has had some complications from the transplants in the form of viral infections. They have now been in Sydney for ten months, that is a month longer than we were in Sydney. She bought one of my books and thought that it was fantastic and was going to spread the word.
We walked back down the hill to Coogee, Jarrett went for a run while I had lovely warm shower as my pain was still unbearable and making me ill. I am having a rest so that I will be ready to have dinner with Gavin.
We had some terrible news about a member of the family, a Cousins husband who lives in Queensland, he was driving a truck for work, he had a seizure and crashed. He was taken to hospital for tests, there are no serious injuries from the accident however it has been discovered that he has three inoperable tumours on his brain, cancer in his lungs and liver, he can not be treated and has only been given months to live, he is only 52, it is so sad and I would like to ask everyone to pray for him and his family.
See how fragile and precious life is and how we really do need to make the most of every single day and realise that life is far more important than money, work, things like exams or being popular. Life is a marvellous gift and we really need to treasure it.
Dinner with the magnificent Gavin was so much fun, he is such a wonderful person, he always lifts my spirits and makes me feel special, it was disappointing that Gill was unable to make it due to work. I was able to see his new car 'Hercules' which I named for him, it is a smart car, they are really not much bigger than my wheelchair, so it had to have a name to make it seem a bit tougher and larger, he told me not to laugh at it but I have to admit I did have a chuckle. I am so looking forward now to lunch tomorrow with the Focus Creative Team, Paul and Tess these people are the most genuine, caring and determined peopl. I feel extraorindarly blessed to have met them on my journey, I would compare them to the pot of gold at the end of a rainbow, true treasures.
We also saw Janine when we were having dinner and she let me know that Channel Nine are unable to cross live to the hospital during the morning, so even though it would have been wonderful to be able to share my story, it is not possible.
With some disappointing news though came some splendiferous news and that was from Tess, Womans Day contacted her after Amanda had given her a contact there and they would love to do an article on my story in their magazine. This is huge, incredible and exciting, Womans Day is sold all around Australia, this means that through this story more interest will be generated around Australia, hopefully meaning being able to reach out and touch more people then in turn more funds raised for Brain Tumour Research. This is like a rosebud that starts tightly closed and then with sunlight and water gradually opens into a beautiful rose.