Monday, June 28, 2010


27th and 28th June 2010

What is pain? In the dictionary it says that pain is physical hurt or discomfort caused by injury or illness, for me pain is part of my life and even though it is very distressing for me, I have to live with it. I wish there was a fairy that could wave her sparkling magic wand and it would suck up all my pain in a stream of stars and leave me feeling like a brand new person, unfortunately that would only occur in a fairytale and my life to date has not been a fairytale at all, in fact I would think it would compare to a horror movie, some days .

I continue to remain as strong and courageous as I can, trying to distract myself from my daily pain in whatever way I can. I played Upwords twice, someone asked me what Upwords is, well it is a little like scrabble where you build words but unlike scrabble you can place letters on top of other letters, I love playing it, it also helps build English skills. I also played Buzz The Big Quiz which is a playstation two game where you have to answer questions playing different types of games using a buzzer and coloured buttons, it is easier than the soccer I did the other day because it is quite easy to do with just one hand. In the afternoon I looked through numerous recipe books to find what culinary delights I could create over the school holidays.

In the afternoon I was excited because we were meeting Tass (my number one salesman) and his wife Gloria (who is also Tess' sister) for afternoon tea at Federation Square. We went to Cafe Injoy where it was lovely and warm, we talked, laughed and drank hot chocolate. One of their daughters Carla came also and she was so lovely. Tass told me about a lady who asked him if I would be interested in painting a canvas to raise money for the new Ronald McDonald House that is being built here in Canberra. They are going to have an auction evening on 28th May next year where it would be auctioned off to raise the money and then it would be given back to hang in Ronald McDonald House. I eagerly agreed to such a wonderful opportunity and even though it will be a larger canvas than any that I have completed before, I know that I will put all my heart and love into painting it, it will be extra special.

I was so fatigued from all my pain, it takes so much out of me and even though I thoroughly enjoyed the afternoon tea, I felt like I had spent all day out. I had my dinner which I found difficult to eat because when I am fatigued I also feel so nauseous as well as I experience headaches. Headaches are not something I am used to because even leading up to my diagnosis, I did not have headaches which often people think you would when you have a brain tumour, I think some people may but I did not. I watched Master Chef and what an interesting twist they presented by bringing back most of the eliminated contestants. I was hoping that Matthew would make it to the final six and have a chance but it was not to be for him, his pancakes just did not make the grade. After Master Chef I went to bed where I lay for hours trying to sleep as the pain just seemed to take over my whole body. As I lay there in pain, I found that my ears were ringing more than they ever have before also and even with light music on in the background it did not ease up. Eventually I must have been so exhausted that I did fall to sleep only to wake three more times during the night with pain, stiffness and a knee that was stuck in the one position.

Today the morning was frosty and bitter cold but the sun forced its way through the cold to shine brilliantly in the sky. However the air has remained so cold it feels like there is still frost all around you. We went grocery shopping today, which I enjoyed gathering ingredients ready for cooking. The shop was cold though, I wonder if their heating was even working or perhaps it had been frozen by the icy frost, my whole body throbbed from the cold with pain and I was relieved I had worn my warm, pink coat in. Poor Mum her hands were cold and she had trouble opening the plastic bags to put the fruit and vegetables in, she kept rubbing her hands together like trying to warm them over a fire.

I have played Upwords again today and I am finding it extremely difficult trying to type this Blog today with my left hand as it seems to have a pins and needles feeling in it as well as a hint of pain. I wanted to ride the exercise bike today but I just could not pedal because my knee was swollen and ached with pain. I have physiotherapy tomorrow, I hope that I can experience some relief again like I had the other day. I am going to watch a DVD and I perhaps try to have forty winks.

'It is not having everything go right, it is facing whatever goes wrong. It is not being without fear, it is having the determination to go on in spite of it.'


Anonymous said...

Hi Dainere,

I am so sorry that you are experiencing so much pain - it does not seem fair at all.

However, I'm glad that you enjoyed your afternoon tea yesterday - I'm sure there were lots of laughs shared! Painting the canvas for Ronald McDonald House sounds like a great project for you to be working on - I can't wait to see what you create!

You must feel deservedly happy when you read the comments from people who have been inspired by your story. You have brought so many rainbows to so many other people!

Wishing you some brilliant rainbows for yourself - stay snug and warm,

Lots of love and warm hugs,

Anna xoxoxoxox

Anonymous said...

Hi Dainere
We wish we could have packed your bags and brought you home with us to sunny Qld where you may have had some relief from your pain. You will have to rug up, turn up the heater, and sit in your favourite sunny spot when you can.

You will have plenty to keep you going with a large canvas for Ronald Macdonalds. What a great project for you. Can't wait to see what you have chosen for it.

Hopefully physio will give you some relief and also give you new exercises ready for your ambition to start shot, discus and javelin.

Cafe Injoy is a really nice place and it sounds like you had a great afternoon.

Keep on occupying yourself with your numerous projects and games to help ease the pain you are experiencing. Hopefully you will have another really good day soon.

Keep smiling.

All our love
Nan and Pop xxxxxxxx

Anonymous said...

I recently went on a shopping trip with my friends and I bought your inspirational book. I have just read your amazing story and I hope everything goes well. I hope your pain gradually gets better and I hope your knee will be alright.

I believe that one day soon you are going to participate in all your sporting activities that you love so much. You are an amazing artist and I loved your pictures (in your book).

I am passing this book onto my Mum and to my friends. "You have to go through a storm to get a rainbow" is now one of my favourite sayings.

God bless you and your family,


PS; Say hello to Theodore for me!

Carla said...

Hi Dainere,

It was so lovely to meet you on Sunday!
Looking forward to many more afternoon teas & chats :)

I can't believe Matthew didn't get back into masterchef, though he didn't perform well on the day!

I hope you have a better day tomorrow, I was so sad to hear that today wasn't a good day for you.

Look forward to seeing you again soon.

Sending zillions of rainbows to you lovely girl!!

hugs and kisses, Carla