Saturday, April 10, 2010


8th to 10th April 2010

After my exciting two days with Chris and his crew Thursday seemed extremely quiet but it was a day that had some high points and low points. I had physiotherapy with Rhiannon and after loosening my extremely tight muscles, especially my hamstring she gave me my new exercise program. The exercises she has given me involve a little more weight bearing, I have to start my program by warming up on the exercise bike for up to five minutes with no resistance then I move onto doing wall squats, these are quite difficult because I have to stand with my bottom against the wall with my feet hip width apart and slide down the wall, I can use Mum for support and I have to be careful not to have my knees over my toes. My next one is wall push ups these are pretty cool because I face the wall and use is as support with my hands out wide, I have to put my elbows out like chicken wings which means they have to be up high and out to the side, then I bend my elbows and push up against the wall. My favourite exercise is the abdominal crunches where I sit in a chair with a yellow theraband (these are special stretchy elastic strips) and I wrap it around the back of the chair and I hold onto the ends of the band and cross them across my chest and then lean forward, this one helps to build up my core strength. I also have to do calf raises either seated or standing if I can and then shoulder presses using a 500g weight in each hand. These exercises are more difficult and I find they really exhaust me but I am determined and I am trying to push through the fatigue and pain but I do have to keep an eye on my knee because if it is too painful or swells too much I have to stop. I also have a goal chart which I can write when I achieve the goals that I had written for Rhiannon the time before, she has also written some goal aim dates, one is to be able to ride the exercise bike for five minutes all the time and that aim date is 10th April, I think I will be able to achieve that one easily. I have to try to walk unassisted twenty metres on 1st May and to be able to turn 180 degrees in two steps by 8th May, I really hope that I can achieve these goals and as you already know I am one determined little person so I am positive I can do it.

We received my neuropsychological report today and that was not too encouraging, it appears that the severity of my tumour and the intensity of the treatment have left me with serious cognitive (which is the process of getting knowledge) learning difficulties. This will make it difficult for me at school with my learning and I will struggle to manage the Year 7 syllabus (which is what you learn in Year 7). I missed virtually a whole year of school last year and because I am still so fatigued from my treatment this year it is hard to do everything at school however the assignments I have done I have done extremely well in my Science project on Howard Florey when I interviewed Jarrett and he was Howard Florey I got all excelling , I was so thrilled and I thanked Jarrett because he was such a great actor in it. In my Life Pathways and Social Futures tasks which I did the large booklet with the photographs of things around school that make it difficult for a disabled person I got five excelling and one highly competent. These were projects that I had to research and then write about and then present the way I thought was the best. So even with my cognitive learning difficulties I can still rise above that problem in some areas and achieve amazing results.

We went to running training in the afternoon but it was fairly cold and I had been having a bit of pain in my knee from physiotherapy so I sat in the car with Mum and did some knitting, I am knitting a rainbow scarf to keep my neck warm in winter but it is slow because my hand muscles get so tired but I will get it finished.

Friday I went to school and I had to do my habits of the mind presentation with my group, we put together a large book for children with little stories that helped explain the habits of the mind, we had also done photographs but some of them did not turn out and some that we took earlier were somehow lost on the computer system, maybe they were not saved properly. I think our group did a fantastic job. Then everyone started presenting their scientist projects and mine was first, I felt really nervous and hoped everyone would like it and I am so glad they did, some girls in my class even asked me if my brother did acting. Even though I did not have to do writing at school, I felt very tired because it is often really hard to listen when people are doing their presentations because of my hearing impairment, I have to strain to hear and often I could not hear what they were saying which is sad because I what I could hear was really terrific.

In the afternoon we had a meeting with my teacher and the Deputy Head of Middle School and we talked about how school was for me this Term and what is important for next Term. I am still going to continue with the five day fortnight. I am going to go on a Monday at the start of school so I can go to Chapel and then - wait for it, I am thrilled - I am going to do sport, I love sport and it will help me with my rehabilitation, because it will help me strengthen my weak and wasted body and may help me become mobile again. My not being able to hear in the classroom is a huge issue and because I am not seeing Australian Hearing until 2nd June we discussed what we might be able to do and they are going to see if they have some sort of microphone system that can be used until something more permanent is sorted out. It is so wonderful that they are going to so much trouble just for me but they also said it could also help other children concentrate better in the class. School will continue to be a huge challenge for me and after receiving my neuropsychological report it is not going to improve but as long as I can achieve in some areas and I can enjoy my school life that is what is important.

An exciting piece of news that I was told in the meeting was that the school are organising a walk-a-thon later in the year to raise money for the Sydney Children's Hospital Brain Tumour Fund. I am so grateful and excited about this and hope that I can find many other ways to raise more money and awareness about Brain Tumours. I am not a celebrity but I hope that I can raise huge amounts for the Fund, my book is a terrific start, I have had a garage sale, sold paintings and have collection tins and I would like to be able to do huge events like what people are able to do for Breast Cancer. Wouldn't this be just unreal and how many lives could it change?

I did another canvas painting and started on the background of another one I am so pleased with how beautiful they are turning out, I have used quotes from my book with a picture so they are really unique and special.

Nalani, Jarrett and I had to have our flu injections in the afternoon, Mum and Dad were supposed to have theirs also but there was a mix up at the doctors and the one for Jarrett (because he is a severe asthmatic) and I (because I have cancer) were accidentally used. Mum, Dad and Nalani had bought theirs from the chemist a few days earlier and the chemists had sold out and were waiting for new supplies, so Mum and Dad gave up theirs for Jarrett and I as they thought at this stage we were more important than they were. Hopefully they can have theirs at the end of next week. Injections are so easy for me, I don't even flinch, I could just feel a little sting at the end when it was being pulled out.

At 7pm we all sat together as a family to watch Stateline on the ABC. The story was incredible, Chris told our story so beautifully and as I watched it I felt tingly all over and my stomach was fluttering and then as the story went on we were all in tears. I can't believe what has happened but as I have said so many times before I am sure it was for a reason and no matter what lies ahead I will be strong and brave and try to inspire other people. They said I was really selfless but I just want to help other people especially children going through what I have had to, it is such a terrible and difficult journey and it is so hard to live each day knowing you have cancer when you are only young. I also hope that I can inspire everyday people to appreciate what they have in their lives because you don't know when something terrible like this could happen in your family.

Maybe it is all the excitement or perhaps I am really tired because I have been working really hard on things for my book and the launch but I had lots of trouble walking today I took two steps and I toppled over to my right side, I just could not balance at all, I also had a little headache it was like a pinging in my head and I was a bit dizzy and had some double vision. That is what it is like for me, I have really great days and then other days some things are not quite right. I move on and don't worry about it, I think when things like this happen it makes me stronger and more determined.

Today was a stunning Autumn morning and we went to running training, walking and appreciating nature is so relaxing. I am still very off balance today but I know that I can overcome this. I finished another painting, it looks amazing. I also bathed Tinkerbelle because she has to have her little operation next Wednesday so she can not have kittens. I bought her a little toy to take with her, just like I have Theodore she can have a special little soft toy to help her through her operation.

Tomorrow we have Luke the photographer coming to take photographs of our family, that will be very special also, I feel so lucky that some very wonderful things are happening for us at the moment. I love my family so much, I just want to hug them all the time they have helped me to have courage.

The invitations have gone out for my book launch and I am hoping that most of the people can come and share this special day with me, so many of them have been there for me from the beginning of my journey and others have been the ones who have made my book a magnificent wish come true.

'It all starts with a wish, the wish becomes a step, then it turns into a path and then it leads to the most beautiful dream in the world, a dream come true'

1 comment:

luke said...

Hi Dainere,

I'm Luke (the photographer) and was just checking in on your blog. It sounds like you've had another full-on week! Can't wait to meet you tomorrow (well, later today) :)