Saturday, June 26, 2010


25th and 26th June 2010

After such a brilliant day on Thursday where I thought perhaps I was heading towards my rainbow the storm came thundering back on Thursday night when I was totally crippled by pain and only had an hours sleep. I think I could describe my pain as like being trapped in narrow walls that keep moving in and crushing you tightly, making you feel like you can not breath. When you are in pain you are often asked to rate it out of ten and for me Thursday night was a definite nine.

Unfortunately even with pain killers, massages and heat the pain still continued with the same intensity throughout the entire day on Friday. I know it is important for me to try to forget about it and get on with my life but when it is so dreadful this is so difficult. I played Upwords, cooked some delicious short bread biscuits especially for Jarrett to cheer him up after his injury and attempted some drawing. Distraction can often help ease pain or rather take your mind off it but my body was not coping, the pain travelled from my right foot, right the way up my weakened right side and into my shoulder which felt like a brick it was so heavy with pain.

We had a visit from Bob, his wife Evelyn and Caleb their Grandson, who by the way was so cute. Bob is a Reverend, he is an extremely kind and caring person, he visited me a few times when I was in Sydney and since I have been at home, he sold a box of my books for me and came to give me the money, he also gave me an inspirational letter from his daughter-in-law Kate. I know that God is travelling this journey beside me, I don't pray for myself but I know many other people do, instead I talk to him wondering how through my journey I can help others.

Tass, my number one salesman called and we are going to meet him and Gloria for afternoon tea on Sunday, he is after another box of books to sell, that will be over two hundred books then that he has sold for me, he is a mega salesman and has a heart of gold.

It was so disappointing that my Wests Tigers lost to the Dragons, they still had a chance at 22-10 but unfortunately the game just slipped away from them. Hopefully the loss will not place them further down the ladder and they can pick up next week and show the strength and courage that I know they have.

My night was restless through pain again, I am not the only one who does not get any sleep, Mum is there by my side when I am suffering holding my hand, stroking my head, massaging my feet, hands, back, knee, shoulders, administering medicine, warming hot water bottles and just comforting me with love.

Today not only can I not use my right hand at all, I have been experiencing pain through my left foot which means that I could not even stand up and in fact when Mum took me to the bathroom I fell and it was just fortunate that Mum caught me. I don't feel sorry for myself that is not the right thing to do, I know that through what I experience it may help other children in the future.

I attempted to play soccer on the playstation with just my left hand, it was frustrating and difficult but with practice, I could not believe it because I actually managed to score a few goals. I was nowhere near as good as what I was prior to my diagnosis but I did it, so it was almost like conquering a mountain for me.

We have had some rather upsetting news about Bill, although he was out of hospital, he was readmitted when he had another seizure. Some more tests revealed that his tumours are so aggressive that they have grown, as well as new tumours appearing in just a short amount of time. They were going to do some radiotherapy for him but he has now being booked into palliative care, that is a place that people whose disease is unable to be treated go to be cared for and live out their lives. I feel so terribly sad, this is what I mean about there is always someone far worse off than you and my problems with pain seem so minor compared to what he is facing. I hope that we can all keep praying for him and his family, maybe there is still the chance of a miracle. I am willing him a rainbow that will shine gloriously in the sky for him and take away his storm.

My pain is still constant and throbbing, I feel exhausted and nauseous but I will remain courageous and strong. I often think that the Vincristine dose should have been reduced when I was having my chemotherapy, getting so much pain and experiencing paralysis but the doctor wanted to keep up the high dosage to try to destroy the tumour. Here I am now having so many difficulties because of it and I still have tumour remaining, it makes you wonder. I think if people are having the chemotherapy that I had then they should question their doctor if they are having lots of muscle problems from it, when it is happening to you at the time you go along with what they say but I think it is okay to question as it is your body it is happening to.

I would like to share some lovely words that were sent to me, these are for those who may be going through a tough time. 'May you receive strength and hope and healing as I hold your hands in love and softly cradle you in my arms of prayer'


Anonymous said...

Hi Dainere,
It sounds like you have been in a fair bit of pain over the last few days! Maybe it is because it is so cold! If I could, I would take the pain and throw it away...far far away!
it's fantastic that you were able to score a couple of goals on Playstation Soccer! Did you beat your opponent?
Of course it is okay to question your Doctor! If you think that something is just not right (and you know your body best) you should definately question what is causing it and why it should be continued and maybe they might be able to come to a decision that will reduce the pain and still do what it needs to, destroy the Tumour!
You are so brave my Bella and everyday I am so inspired by your courage! I know a lot of other people are as well!

Take care, Andrew sends lots of love, hugs and kisses!

Love your big sister,
Lysette XoX

Anna said...

Dear Dainere,

We have enjoyed reading your book as you remind everyone not to take their life and good health for granted. You are one very brave young lady!
I think your family and your Mum in particular must be very strong too since they support you every day.
My daughter Holly (who has just turned 12) and I will be sending you white light to take your pain away and help you heal. Stay strong and keep that rainbow in sight.
Sincerely, Anna & Holly

Ash Ogilvie said...

great post cannot wait to meet and interview you

you are such an inspiration!

Gotta Luv Fat Quarters said...


I heard the lady on ABC radio talking to your mum this morning..
I'm going to tell everybody about your blog and your book and I'm hoping they will all buy, read and be inspired.
It's raining this morning so I'm having a lazy day, although reading your blog makes me feel guilty as I'm not very motivated today. You must have to reach deep inside yourself each new day to find motovation. You are a true inspiration as is your mother and family members who support, love, cherish and help you everyday.
The fairy garden you talk about with the pansies sounds magical, one of my joys in life is gardening. So I'm going to plant some pansies to remind me of the troubles you face everyday as do many young people..