Sunday, July 18, 2010


16th, 17th and 18th July 2010

They say that all good things come to an end, well that is the case today as it is the last day of the school holidays and then it is back to the routine of school and homework.

As the sun is disappearing for the day and some ominous clouds are starting to roll across the skies as rain is predicted for tomorrow, I have to admit I am feeling a little anxious about returning to school. I had being hoping to start a brand new term with my hearing aid but of course that was not to be, it is only twelve days until I do get that marvellous, lovely pink hearing aid unfortunately though I will have to become used to it at school rather than the original plan of using the holidays as a time to familiarise myself with it and have any adjustments made. Also often at school I just don't feel that I am coping and I feel so different to everyone else in the class who talk about sports and parties. I accept this journey I have been dealt but I do also regret it sometimes and long for my old life back. There I go again feeling sorry for myself, I hate being like that because I am not that person, I am a giving, unselfish and loving person who is determined to change the lives of other people for the better.

Friday for me was ordinary, I had yet again not slept well at all with pain but as I have said many times this is normal for me. I played Upwords in the morning, I guess by now you can see it is my favourite game then we had to go to our local shopping centre to pay some bills and buy some food. The weather was pleasant as the sun was shinning but the Winter winds here always have that arctic chill to them and that spoils the sunshine and blue skies. I rested in the afternoon as we were going to the Brain Tumour Alliance meeting that evening, which I was a little apprehensive about as well as being excited. I was so glad that we went though because I met some of the most inspiring people, they weren't children, they were adults but they had each travelled their journey's just as I have. Matt who is the Chair of Brain Tumour Alliance Australia is so passionate as a patient advocate, he has a wish list and that is that a cure for all brain tumours is found; that when people are diagnosed they receive a comprehensive information package with information on the type of tumour, cognitive and emotional changes to expect, treatment options and support information; his third wish is for a widespread understanding by the wider community of the disease and the difficulties faced by the patient and caregivers. I was totally in awe and inspired however by Sarah, she is a young Mum, she was diagnosed in 2007 with an incurable and aggressive brain tumour, she is a determined and courageous person and hearing her story about walking the Kokoda Trail in 2008 was incredible. She too, like me has a saying that keeps her going and it is, "You can weather the storm by dancing in the rain". There is going to be a fun run/walk on 6th November this year to raise funds for Brain Tumour Research and Sarah and I are going to be there together doing it, she even said that she would love to push me. Mum said that would be marvellous, two inspiring, determined people together raising awareness and funds. At the meeting they also spoke about my book, Mum told them about it and I then said a little also they think that my book is making a difference already and hope that as it reaches further it will continue to help people understand the journey of a paediatric brain tumour patient. I came home from the meeting feeling full of hope and felt like a light had been turned on from inside me.

My bright light from within started to fade though through the night when I was inflicted with not only pain all along my right side but into my should blades which clicked every time I moved and my chest was so tight I had trouble with my breathing. I was scared, I did not know what was happening, Mum however was there, she comforted me and gave me some Ventolin which eased the chest pains for a while until they returned and were eased again by the Ventolin. By morning I still had pain down my side and in my shoulder blades but my chest pain had diminished. It was an extremely cold night so Mum thinks that as I have suffered from Asthma in the cold weather before that is what my pains and breathing problems were because the Ventolin eased them. I remembered then that my chemotherapy treatment is known to cause a decrease in lung function and this could be another explanation.

I was so terribly tired on Saturday that I woke and then fell asleep again so Dad took Jarrett out to Stromlo for running training, also it was only one degree when they were there training so it is fortunate I did not go as it may have triggered my asthma again. When I woke again I felt uncomfortable, I can't explain why, I just did not feel well. I had some nausea and could not even stomach my usual cup of tea, however as the day progressed I felt a little better. Lack of sleep can make you feel unwell and this is probably the reason. The sun was shinning again and when you were inside the house, you would have thought it was almost Spring but if you ventured outside you were cruelly reminded it was still quite a while off. We went to Federation Square to meet Tass, my number one salesman and his lovely wife Gloria. I had a hot chocolate which actually went down really well and we chatted about our week. Tass always makes me laugh, he must be the most jovial person I have ever met. He has the canvases for me to do the painting to be auctioned next year. I am going to sit down and plan very carefully how I would like it to look, this is extremely important to me and I want it to look spectacular. As we chatted time slipped away and us and another table were the only remaining patrons and one of the staff members came over and told us they were closing, it was actually quite hilarious, I have never been somewhere and asked to leave as they were closing before! Our night was quieter we came home and watched Daddy Day Camp on television, it was a light comedy. I had a headache when I went to bed and found I could only lie on my left side as if I lay on my right side my headache throbbed more fiercely.

Some time in the night my headache disappeared but again my sleep was disrupted by my knee sticking and pain, I had to wake early as we had to take Jarrett to the AIS for running training as Dad had to work as Queanbeyan Race Course could not race on their track and they had transferred their meeting to Canberra. We had been going to have a special family day together for the last day of the holidays and perhaps go to the movies if I felt up to it but it was not meant to happen obviously. Anyway, we went to the AIS and again it was one degrees when we arrived. Jarrett's coach had told him that today he was doing a one hour run in preparation for Nationals in five weeks time. We sat in the car until it warmed up and then went for a short walk around the AIS perimeter. Nalani finds that the cold affects her knee also and as she can't run yet she likes to go for a walk when she can to try to help it. Even though her results are back with the Sports Physicians she will not be able to get them until 10th August unless an earlier appointment becomes available. She is so frustrated and a little worried as she has Human Movement and PE as subjects she is majoring in and wants her knee sorted out sooner rather than later as she excels in these subjects and does not want to have to receive status which would not be the sort of mark she is capable of. After Jarrett's run we came home and played Upwords, yes again. We had to get a couple of back to school items and when we were out I found four little fairy ornaments to sit on my pot feature, I am very excited about this, I think fairies spread happiness and magic and I am hoping that my fairy garden will be magical and bring me some good luck. My bag is all ready for school tomorrow, I have Chapel, PE and insight in the morning and then I will return after lunch for double English. I am hoping that tonight I will have a better night sleep as school takes so much out of me and if I am already exhausted I have trouble coping.

'I think that the greater the obstacle in our life is, we have more glory when we are able to overcome it'


Anonymous said...

Hi Dainere,
I hope you get a better sleep tonight before your first day back at school. It sounds like a big day with double English in the afternoon, so I hope having a rest at home after PE helps you to get through the day.

I've just got home after a few days away and found two copies of your book waiting on my doorstep. I had ordered them last week, and am looking forward to reading one copy and sending the other one to a friend. Thankyou for signing them, it makes them really special.

All the best for your first days back at school, take things slowly.


Wendy said...

Hi Dainere,

I am looking for our old Upwords game and can't find it as we have moved since we all last played the game. I know it hasn't been given away as I just wouldn't do that as the girls thought it such fun - so I continue to look. This means a 'trip to the shed' which will end up with me finding things I haven't been looking for but which I now realise I just can't live without - so thanks for giving me the opportunity to remember all the times we played Upwords as a family - good memories!

And now I will tell you about my new puppy Betsy that I have just started taking to obedience classes on a Sunday morning. Betsy was the worlds most energetic puppy when we got her last Christmas and I can remember thinking 'what have I got here', well our dear Betsy is turning out to be just as enthuastic at the obedience classes as she is at running into the bedroom and pinching the tv remote control and racing out the back door, or pinching my undies out of the washing basket when i haven't realised (and I will only notice when I see something bright coloured in the back yard), or when she wants to leap off the jetty to chase the pelicans! You're getting the picture by now I am thinking.

This week at obedience we learnt how to 'stand' - which for a pup is quite a hard thing to do as so far all the teaching is to teach them to sit. So we felt like such stars when we both actually achieved the 'stand' when the instructor gave the command. As I keep saying, it's not the dog that has the problem, it's the operator. Me. The thing I enjoy as much as actually going to the obedience, is watching the other dogs and their owners learn and try to master the activity. I just smile all the time, and that feeling stays with me for a long time.

Sending you lots of warm wishes for the first day back at school and a peaceful nights sleep to follow.


Anonymous said...

Hello, Dainere,

As I write this, you will have had your first day back at school. I do hope it wasn't too cold and you managed to keep nice and warm. (I'll look at tonight's weather to see what the temperature was in Canberra today.)

I really like the way your garden is growing. (I have a shallow, round blue pot of pansies at my back door, reminding me that Spring can't be too far away. Well, that's what I hope, any way!) The fairy decorations would add an enchanting feature to your garden.

I received your book on Wednesday. Thank you! It is absolutely amazing (and you are, too!). I have read it and then have caught up with all your blogs since then. You are to be congratulated on your lovely, expressive writing style and the positve message you give throughout your journey.

What a wonderfully loving and caring family you are... truly inspirational!!

Now that I have "caught up", I'll regularly read your blog.. ..thank you for sharing your journey. Please know that many thoughts and prayers are constantly sent your way.


Ali Davies said...

Hi Dainere,
Hope your return to school went well and you are getting back into the swing of it all.

It is summer time here in Ireland so my little boy (age 6) is on summer holidays and goes back to school at the beginning of September.

The quote you put on this post is lovely. Made me think of this one:

"Our ultimate freedom is the right and power to decide how anybody or anything outside ourselves will affect us" - Stephen Covey

Take care

Ali x