Monday, September 6, 2010


5th and 6th September 2010

Canberra was damp and dreary with blustery winds, not the day you would wish for, for all the Dad's on Father's Day, we gave Dad breakfast in bed and had given him his presents on Saturday, he loved them, he even had a play with his blower/vacuum in the house!

I had butterflies in my stomach and felt horrendously ill as I said a tearful goodbye to Nalani, Jarrett and Tinkerbelle, I hate having to leave home to go to Sydney for all my tests, I wish they could be done in Canberra where I feel safe and everything is familiar. Sleet began to fall as we left Canberra, as we drove past Lake George I could not believe the abundance of water or the lushness of the surrounding grass areas. We stopped at Marulan for a break and a drink, it was icy cold and the winds howled outside, we heard on the radio that in Sydney wind gusts of up to 80km an hour were expected in the afternoon. As we neared Sydney, I noticed on the car outside temperature reading that it said it was 23 degrees, that was unbelievable but when we arrived at our destination I could feel the warmth and delighted at the clear blue skies that greeted us. The room we were allocated was Room 13, I am hoping that it will be a lucky number for us, as often '13' is associated with bad luck. I cried when Dad left to drive back home, but Mum was there comforting me as always. We unpacked, went for a walk, or were blown along as the winds had picked up dramatically in the afternoon, played my card game Happily Ever After and then Mum read my Tinkerbell book to me. Even though the bed at our accommodation was extremely comfortable I did not sleep well, my nerves had kicked in again and I found myself in dreadful pain, once again I had lost the use of my right arm and had absolutely no strength in my hand.

Traffic starts early in Sydney and I was woken before six to the blaring noise of a car honking, it is such a busy City, I love the quietness and tranquility of Canberra. The sun was shinning however there was a breeze that had a slight chill in it as we went for a walk to help my nerves before my EEG. An EEG which is short for electroencephalography is a recording of the spontaneous electrical impulses of the brain and they are used to investigate the causes of seizures or blackouts to diagnose epilepsy and to evaluate a variety of other conditions. It is different to MRI's or CT Scans that look at the structure of the brain, an EEG looks at the electrical activity of the brain. I was firstly placed in a reclining chair with my head elevated on a neck roll. Twenty one electrodes were placed onto my scalp using a paste which was gritty and white, the electrodes had to make good electrical contact because this helps to make a good quality recording, the leads of the electrodes were an array of rainbow colours. During the EEG I was asked to breathe quickly for three minutes, this is called hyperventilation, it was the most difficult part of the test and it made my hands and feet go numb and I felt a little dizzy, the examiner said that this meant that I had hyperventilated well. In the last part of the test a strobe light was placed in front of my eyes, it flashed in different frequencies, this is called photic stimulation, during this part of the test I was asked to open and close my eyes at various times. The whole test took twenty minutes and most of the time I had my eyes closed and could only open them when I was asked to, they also had relaxation music playing in the background to help you relax. At the end of the test all the electrodes had to be removed and then I was wiped over, however there was sticky residue left from the paste and I had to go straight home and have a shower and wash my hair. I was thinking that I was fortunate not to have my long, curly hair anymore because that would have been become ultra sticky from the paste. The test did not hurt at all, I did have some tingling and dizziness still afterwards from the hyperventilation part of the test but that eventually disappeared. My neurologist will receive the results from it and then she will be able to discuss those results with me, however we still do not have a definite appointment with her as yet, hopefully at Oncology Clinic tomorrow we will have a day and time for that.

In the afternoon I had my Speech Pathology Review, I was expecting for her to just ask a few questions about how I am going and offer some advice, so you can imagine how surprised I was to find out that I had to do the CELF-4 test, which is a speech and language test used by Speech Pathologists. I had to look at pictures, listen to instructions and then point to the pictures that had been given in the instructions, the more instructions there were the more difficult it became, the next one was to repeat sentences which became longer and longer, then I had to listen to three different stories and answer questions about them, by now I was feeling exhausted but the test went on, I had to look at a picture, I was given a word and had to make up a sentence using that word that suited the picture, the next task was to listen to four words and then I had to pick the two words that fitted together and say why they did, another test was I was given a word which was put in a sentence and then I had to give a meaning for that word, finally after one and a half hours of testing, I had only one more task to do and that was to look at pictures, I had to identify what a certain picture was and then say what group it was part of. By the end of the testing my head felt scrambled and I could not think straight. I will receive my results over the telephone on Monday 13th September, I know that I had some real difficulties in certain areas but also felt there were areas I did extremely well in, but I will have to wait and see what the actual results were.

We left the Speech Pathology Review and met Tess, we gave each other an enormous hug, after such strenuous testing a hug was the best medicine I could have had all day. Tess had brought me a beautiful bunch of flowers to brighten our room, some Lindt Chocolate and pink earrings. We went for a walk, had a hot chocolate and caught up with each others news, as we chatted the time flew by and we found the coffee shop began to pack up and clean up around us, just like when we had afternoon tea with Tass and Gloria, we giggled about it. I enjoyed being with Tess, she always manages to lift my spirits, she is a very special person. When we were with Tess a girl approached me and was talking to me, she was the cousin of a young boy that was in hospital when I was, he had been there since he was born, he left hospital at the end of last year after being there for three years, she told me he is really well, it was so wonderful to hear that news, people often touch your life during your journey and you don't always know what became of them, I have often thought about him and knowing how he is is fantastic.

I am feeling very anxious about tomorrow, my stomach is churning, I have a headache but that could be from the EEG, that is a possible side effect but it will disappear and my heart is beating rapidly. Tomorrow I have my Oncology Clinic, Physiotherapy Review, Occupational Therapy Review and my MRI, our Social Worker is also going to catch up with me at Clinic also.

Jarrett has his first lung function test tomorrow, I hope that everything goes well for him because I want him to keep running as well as he did, the way he runs inspires me and I love cheering him on when he runs.

'Life brings us many surprises, we accept the good ones with open arms, however often want to turn away from the bad ones, we should embrace the bad ones and grow from the experience'


Anonymous said...

Hi Dainere, well day one over , hopefully the weather will be kind to you again tomorrow, it was quite nice for you today, Spring can be a funny month in Sydney. So glad you met Tess, she truly sounds a good friend to you.

You have a big day tomorrow , wow lots of people to see, I hope all goes well for you . Take a deep breath .

Lots of love and best wishes
Stuart x

Anonymous said...

Good luck for tomorrow -my girls and I are thinking of you -all our love xxxx

Anonymous said...

What a brave girl you are Dainere, you are an inspiration of strength and courage to all that know you or have read your book and feet that they know you. All the tests will soon be over and you can go back to you comfortable home. I also think your mum is wonderful as she is by your side every step of the way.
God bless you and your lovely family Dainere.
Kindest wishes Susan xx

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