Wednesday, June 16, 2010


15th and 16th June 2010

Canberra winter mornings are so icy cold yet they can be the most beautiful to look at with snow white frost covering the grounds and grass that crunches under your feet when you walk on it, this may sound strange but I wish I could walk on that grass and hear it crackle under my feet, I am sure it would make my bones ache but it is something I would love to experience again. It is the little things in life like that we all need to take the time to appreciate.

Yesterday was a typical winter morning here in Canberra and when you take in the cold air you do appreciate life even in its coldest moments. I was anxiously waiting to see Rhiannon for my physiotherapy appointment, I knew that she would loosen those tight muscles of mine. Seeing Rhiannon did brighten my day because she was able to work on my muscles and then she did some tests that were required to fill in the form for my classification as a disabled athlete, she understands how important being able to participate in sport is for me. We also discussed my peripheral neuropathy and how we can work together to manage it. I will continue to see Rhiannon every two weeks and work on my program at home that has been set for me. I have used Voltaren on my knee but it does not make any difference, it is just like using deep heat, the physiotherapist in Sydney had thought it would make the world of difference but it has just been another let down.

I came home and rested taking the day quietly until the afternoon when it was running training. Although the sun was shining in the late afternoon sky, it was chilly, so I am not able to go for a walk in my wheelchair like I can in the warmer weather. It was dark by the end of training and when Mum went to start the car all it did was make a noise almost like a machine gun. She tried again and again but nothing happened. Even Jarrett who reckoned he had the magic touch, turned the key and it did exactly the same thing. Mum called the NRMA and we had over an hour wait before they could come and fix it. The car was fogging up as our warm breaths filled the car. Finally the NRMA came, got the car started, told us it was the battery which was the original one, not bad as it was five years old. The NRMA battery people came later that night to replace our old, worn out battery with a brand new one, so we should not have any of these problems for a few years. We had to laugh though, at the moment it seems like only these things could happen to us. I am sure they don't but at times it feels like we have just had a run of the worst luck possible.

I was extremely sore when I went to bed last night and woke several times throughout the night again, but as I have said before this is normal for me and to have a great night sleep would be a miracle.

This morning I awoke still in pain and our run of bad luck continued from the night before with a few minor setbacks prior to going to school. I was excited because today was elective day, my elective is art and this is only the second time I have been able to go to that class this term. Before art though we have our class roll marked and Insight. Today the teacher was talking about Bullying and the difference between friends just having a disagreement and real bullying which I have experienced and know what it is all about. It is the continual harassment by one person or a group of people against a person or people, it can be verbal, physical or psychological. Today the teacher mentioned Cyber bullying and how people are using Face Book, MSN and BeBo to write nasty messages to or about other people and it seems to mostly be girls. People who bully just do it as a form of power and it is terrible what they can do to the person they are bullying. I wish there was no such thing in our World as bullying and it makes me feel so upset to think that people at school would even think of doing it. I hope that from now on people use technology and only write kind words about other people, maybe they should all set themselves a goal of saying one nice thing a day.

It was then time for art, today in art we were working on another ink printing, I had to choose a person or character who was famous and inspired me. I tried to do a sketch of Matt Preston but it just did not turn out and it looked too feminine. I drew a sketch of my oncologist and that looked fantastic, it was so life like but I decided not to do that one, I then drew Theodore but to have it life like it was a little too difficult with all his fur. Finally I decided on Belle from Beauty and the Beast because she inspires me with her kindness and empathy, she is different to other people and is so helpful to others. I drew her on some foam and then went over the lines so they were indented, this is how the print works. Once I was happy with my tile, I then rolled the pink ink I had chosen all over the foam. I then took a piece of paper and pressed my print onto it, it turned out magnificently, I repeated the process and ended up making six prints altogether. Next week is our last lesson of art because next Semester we have new electives.

After my tiring morning at school I left to go home, have a rest and a warm drink. We then had to take Nalani to physiotherapy for her knee. Whilst at physiotherapy, Rhiannon gave me the forms she had completed for my classification for a disabled athlete, I just have to get the one from my neurologist and I can then send it off for the association to review. Nalani's knee is slowly recovering but she won't be able to race at the ACT Schools Cross Country on Tuesday. Hopefully she will have recovered more fully for the Club ACT Cross Country Championships in July.

I have been taking the rest of the day quietly as I am still experiencing uncomfortable pain all down my right side. The skies have clouded over and I am so pleased to be in our warm home, tomorrow it is supposed to be very windy with some showers, so I am glad that I don't have school.


briana said...

Dear Dainere,

i hope that you can have a better sleep tonight and that you keep warm.
i know how it feels wating for NRMA. We were in sydney waiting for NRAM for 2 hours and we had the same problem.
My mum talked to my physiotherapist in Sydney today. Her name is Clare and she seems really nice. Did she look after you when you were at the Sydney Childrens hospital.

I really hope the pain stops for you and you start to feel better.

Love Briana

Anonymous said...

Hi Dainere - Denis has emailed you some photos - hope he has the right email. He wrote:

"Hi Dainere - Some more photos of people with your book - they are

Ase Rinman (Chair of the Swedish Brain Tumour Association)
Sven Olaf Wold (Swedish Cancer Society)
Hallsetin (Norwegian brain tumour group)
Paul Carbury (CEO Samantha Dickson Brain Tumour Trust)

I leave for Vilnius today via Riga (Latvia). Vienna later.
Best wishes
Denis Strangman
PS My family tell me it is cold in Canberra now - I nearly got sunburnt in Gothenburg yesterday - it is summer here!

Anonymous said...

Hi Dainere

Try to keep Friday 16 July for the next meeting of the ACT brain tumour support group free. We would love to have you come along and show us your book. About 7pm. I will let you know where.


ACT Brain Tumour Support Group
Freecall 1800 857 221

briana said...

Dear Dainere,
Today I am so happy because I received your rainbow and the other gifts you sent me.
I cried lots of happy tears. I feel so special that you sent these to me especially the rainbow which I now know will help me be strong and keep me smiling like you always do.

Remember I am always here for you and I will keep praying for you and your family. You are a very special friend to me.

I will be going to pick up my wheelchair tomorrow.
Maybe when I get back from Sydney we can have a race. I might need some practice first.

Look forward to seeing you again soon.
Stay warm and take care.

Lots of Love

Alysha said...

Hi Dainere,

This is my first time to visit your blog so I thought I would leave a comment. I'm also a Canberran author and I seriously cannot wait to read your book. I bought it the other day and have just done an intro vlog for youtube on it - check it out at my website

I used to love art too at high school - it was one of my favourites. I particularly loved block printing and sculpture. It's the best kind of therapy, I reckon, doing something creative.

I hope you feel better today - I'm really hoping for a brighter weekend!

Take care gorgeous!
Alysha <3