Saturday, March 10, 2012


3rd to 9th March 2012

This week we have seen some wild weather around many parts of Australia, in Canberra prior to leaving for my week in Sydney we were inundated with drenching rains, gusty winds and high humidity.  Roads have been flooded, people evacuated and homes destroyed, the weather is so unpredictable, like cancer, you don't know whether you will experience bright sunshine filled days or days where you have a storm to fight against.  This week I returned to Sydney for five radiotherapy treatments which are aimed at reducing pain and slowing my new tumours in my spine down.

My journey began on Sunday when Mum and I flew to Sydney, because the weather was so miserable the flight was delayed by half an hour, when we were eventually able to board the airplane which was an ATR Virgin aircraft we had to board on the tarmac.  Although we had an umbrella, the rain was pelting down and the wind was lifting the umbrella Mum was holding to try to keep me dry, she had to hold it with two hands and still struggled, I thought she might fly into the sky.  We arrived in Sydney to beautiful blue, sunny skies which we had not seen in Canberra for a while. 

We were staying at Ronald McDonald House and were pleased to arrive and began to unpack, however that was interrupted by the sound of the roaring fire alarm, we had to move to the evacuation area and wait the arrival of the fire brigade.  After thoroughly checking the building, we were given the all clear to return to our rooms.  Ronald McDonald House is a fantastic place for families who are having treatment at the hospital to stay. 

Monday was my first radiotherapy session, it was so different to the way I had it before, this time I did not have to lie on a beanbag or have a mask on.  I just had to be lined up and have my head in a special plastic headrest and lie supine (which is to lie on your back).  The treatment was extremely quick, compared to my prior experience and it was at a much lower dosage.  Before I had 58.8 Gy and 36.6 Gy this time it was just 17 Gy.  I had a sticker chart again to place stickers on after each treatment, it was such a huge difference this time, last time I had thirty two treatments so there were so many more to count down, five really seems like nothing.

That night I was in so much pain, it was terrible and brought me to tears, I have to admit I was a little frightened, this had not happened last time, but I had Mum there comforting me in every way she could. 

The next day when I had my radiotherapy we saw my Radiation Doctor, who has not changed, he is still so reassuring.  He always talks to me directly and really cares, I think when I first met him I referred to him as reminding me of a very friendly 'Santa Claus'.  He explained that the pain I experienced the first night can sometimes occur, so that made me feel more at ease. 

On that Tuesday Mum and I met with many other specialist teams who spoke about pain relief, both medicinal and alternative.  We talked about things that will assist me to make me feel more comfortable in my daily living.  Then the physiotherapist Judy came and spoke with us offering ideas and confirming that Kaitlyn is helping me in the best ways. 

Wednesday was filled with appointments yet again including my radiotherapy as well as seeing the Social Worker.  I was finding that I was feeling really tired, whether it was from the treatment which can make you tired or just from the having such busy days, filled with seeing so many specialists. 

On Thursday I saw my Oncologist, he was helpful in answering some of the questions I have had and gave Mum and I some advice in relation to school and sports.  He is going to see me again in May when he has his Clinic in Canberra.  I have been told that I do not need to see an Endocrinologist any more as because of my relapse and different needs.  Also the follow up schedule I had for my original Medulloblastoma is no longer relevant and all the tests they do are to look for new tumours, which they have found now, so things change.

As the week went on I was finding that my pain was not as intense, which is what the purpose of the treatment has been.  Although I still have constant pain which I often describe to be like my tinnitus, it is always there and I guess when something is there all the time you become so used to it.  I have also been prescribed stronger pain medication for the times when I need it, what a pity I did not have it on that Monday when I was in such terrible pain. 

At the end of my radiotherapy on Friday I was able to ring the bell, I did that last time but I think I rang it with much more excitement and for longer last time because my treatment had gone for so long.  In a way I felt rather silly ringing it for just five treatments, but I was still pleased it was all over for the week because that meant that I would be going back home. 

My week was not all appointments I found a little spare time to catch up with some special friends, mostly in the evening for dinner.  I got to see Tess, my Starlight Wish Granter, she always makes me smile and then I also saw Gavin and Paul who were instrumental in making my book a reality when it almost seemed impossible.  Another highlight was meeting Christine who is a fellow author and behind the website Australian Inspiration.  All these people are a very important part of my journey and I feel so blessed to know them all

We experienced the most terrible weather on Thursday in Sydney, it absolutely poured for most of the day.  It was miserable and going to and from appointments even an umbrella did nothing to protect us from the harsh conditions.  However in the late afternoon the winds blew the cloud away and the sun peeped through.

Our flight home was slightly delayed but not as long as when we left Canberra.  The weather was fine and as we flew into Canberra last night, seeing the entire city lit up was really very magical.  The best part of all though was seeing Dad, Nalani and Jarrett and being able to give them huge hugs. 

My new journey will now be monitored closely by my doctors in Canberra, I know that I will have good and bad days but what is most important is to remain positive and always make the most of each and every day.

Last week my valiant Tigers won their game in stunning style and I was so excited when Benji kicked the field goal to win.  Unfortunately they did not do so well this week against Manly, however Mum was very excited because she is a Manly supporter. 

Thank you for your wonderful messages in the last Blog entry, I am just an ordinary girl who is facing a difficult journey, I hope that through my journey I can help as many others as possible.


Anonymous said...

Hi Lovely Dainere,

What a week you had in Sydney! It sounds SO busy. I'm glad that you had time to catch up with some special people as well. I do hope that the therapies that you endured have given you some relief from the pain and that you have rested yourself since coming back home.

At least the weather has been kinder to us - sunny days do make us feel better...... I hope that you managed to enjoy some sunshine over the weekend.

How is Tinkerbell? I'm sure she missed you while you were away. I can guess that you both wanted to catch up on cuddles on the couch as soon as you came back home!

Enjoy the extra day at home with your family today before the busy school week begins,

Lots of love and big hugs always,

Anna xoxooxoxox

Anonymous said...

Hi your journey sounds so busy!:D I hope your getting better stay strong from ruby-Mai from sydey p.s (we meet in hospital) ;)

Anonymous said...

Dear Dainere,

What a full week you had in Sydney. I do hope that you have found some suggestions made have helped lessen the pain.

Your Radiation Doctor sounds special. It is so good that he speaks to you directly.

It was good to meet up with Tess, Gavin and Paul and Christine. Seeing them would have brightened your days, I'm sure. And to know that Kaitlyn is doing all the right things for you would also be reassuring.

Let me tell you.... you are no ordinary girl!!! Your positivity and determination to make the most of each and every day is amazing and wonderful! You are certainly helping others by raising awareness of your journey and by sharing your fantastic attitude to life. You are surpassing Sally Pearson in hurtling those hurdles!! :-)

Sending love,


Anonymous said...

You can always impressed me with your courage. So keep smiling and I hope you can achieve all your dream. I believe with your courage and determination in your heart you can achieve that. So keep smiling everyday ^^