Friday, July 2, 2010


1st and 2nd July 2010

Just when you think it is as cold as it can get we get days like yesterday and today where it is so cold you just wish you could stay in bed all wrapped up and not have to look out at the dismal weather.

My pain feels like it is taking over my life and makes me so dreadfully tired, I am trying everything that has been suggested to me; heat, voltaren, pain killers, massage but nothing seems to ease the constant throbbing that surges through my body. I am however trying the mind over matter theory, continually attempting to distract myself from the horrors of the pain but it is becoming more difficult. To add to my woes my right ear has been ringing more loudly and irritating me much more than what it previously has and I feel that I am having more occasion of not hearing what people are saying to me and I sit there looking vacant then realise I have been spoken to - Bring on 30th July - although I could of had my hearing aid if only that letter had been done for me. I hope I don't appear selfish but this is just so important to me but was not considered important at the time by my brilliant, yet busy oncologist.

Yesterday I woke with not only pain tearing down my right side, it was in my left foot and my stomach, I almost felt like I was going to vomit like what happened to me before my diagnosis. I closed my eyes and told myself sternly to pull myself together and embrace the day. So even though the pain was still terribly bothersome I played Upwords with Nalani and we also made some absolutely scrumptious looking blueberry muffins. I think we would have given those MasterChef contestants a run for their money with them!

I attempted to ride the exercise bike however it was rather useless as my right knee kept sticking on each rotation, it began to swell and was painful so regretfully I had to stop. However I was able to work on most of my upper body exercises which lifted my spirits because when you really want to do an activity and can't it leaves you feeling terribly disheartened.

One of the reasons we had made the muffins was because we were expecting a special visitor and that was Denis. He is from the Brain Tumour Alliance Australia, he has been overseas at Conferences about Brain Tumours. He brought some photographs with him of all the people he had met and them looking at my book which he had taken with him. Many of the people had written in a lovely card for me, I am so touched each time I read words of encouragement and praise from people. We talked about so many different topics whilst he was here, he has also had a huge involvement in athletics over the years so that was something else we found we have in common. It was interesting when he told us how people in Asia often don't respond to the same chemotherapy treatments as Europeans because they have a different metabolism and that got me thinking again about boys and girls and whether because of hormones we may respond differently or have different side effects. That perhaps would explain some of my adverse side effects, ones that they had not experienced before from my protocol here because only boys have had it that are my age in the hospital. It seems that really treatment for brain tumours needs to be individualised as everyone responds so differently to the standard treatment. I am really grateful to Denis for having taken my book with him and was very excited when he mentioned that a Doctor from overseas had said that my book would be excellent to give to patients of around my age who are going to go through the same treatment.

After Denis left we watched some Sabrina the Teenage Witch Episodes on DVD, I felt really tired from the visit, it is like school because I have to listen so carefully to what is being said. Then I a received a telephone call from Ally, her Mum bought my book online and we have been keeping in touch through email. She made me laugh and it felt like I had known her for ages, we are hoping to meet each other in person over the holidays. This is something positive that has come from my journey, I have met and made some extraordinary friends that I know are truly genuine and wonderful, what a special gift that is.

My pain continued through the day and into the night which again caused me to wake several times crying and seeking whatever comfort Mum could find to help me. I think the pain is a test of my courage and determination, I am trying to get through it the best I can but I have to admit it really does get me down.

If yesterday was a dreadful day then today had to be ghastly, it was foggy and cold, the sun has not appeared at all and now it is misting with rain, it is supposed to reach eight degrees but I doubt that very much. So it was a terrific day to sort through my scrap booking containers because Dianne had given me some more on Wednesday night at the Cross Country Meeting. All my paper is now in colour and pattern order and so are all my beautiful stickers.

We had some upsetting news today, Bill passed away yesterday afternoon at 3.30pm, he had gone into a coma, so he went peacefully. I felt so melancholy and I shed a tear for him, he was only 52 and still had so much to live for. His brain tumours had tripled in size since he first found out only weeks ago, he did not even make it into palliative care. I have thought about him so much since we found out and I have prayed constantly for him, I even prayed to Mary Mackillop hoping for one of her miracles but it did not happen. I think that he has found his rainbow now, his rainbow is that he is not suffering anymore and he can follow his rainbow to everlasting life and then his rainbow from heaven will reach his family and look after them just like he is there with them still. Thank you to everyone who has been praying for him.

While I am thanking people I want to thank everyone who has been leaving the most inspirational and caring comments on my Blog, these comments truly help me to remain positive, hopeful and strong. So many of you say that you are inspired by me, well for me you are the ones who inspire me to continue sharing my journey and to want to make a difference in our world.

My hand is aching, my eyes are tired because I am seeing double and I have to keep deleting and re-typing so I think that is a message to finish for today. The rain continues to drizzle outside, perhaps it is the angels in heaven crying for Bill. I hope the sun will appear tomorrow and shine on our lives.


Anonymous said...

Dainere - oh sweet blossom - I purchased and read your book - it is such a truly amazing gift you have in being able to share with people the very tough journey you and your family have had. Thankyou for having the courage and determination to share your journey. You can get through the pain and as you've said - you can focus on doing your upper body work outs til you can get back to doing your cycling.

Keep strong little butterfly.

I live in Qld and have taken your advice - I have stayed in bed under the covers. It's a cold, bleak and miserable day, but my 3 cats are such wonderful company (and a little like portable heaters with the added benefit of not being a fire hazard!)


Anonymous said...

My love and thoughts are with you. I have been telling my girls about you. They have so many questions. When they are old enough I will have them read your book and just hope they are half as coragious and inspirational as you. I so look forward to reading your blog everyday - thankyou. Bless you Dainere look after yourself and stay warm xoxoxoxo

Dianne said...

Dear Dainere,

The Sun shines again for Bill and you today, I too think that the rain was for him; from the fog and sadness comes a realization that he has only left the ones he loved in body but his presence remains in their hearts and minds.

I agree that treatments are never predictable and affect people in sometimes unknown and unexpected way. You have certainly had your share of unusual side effects, which will be recorded for treating other patients. This is another way in which you have assisted others with your own experience.

Lachie is in the Kanga Cup soccer next week and has 2 games starting at 9.30am, we are all hoping for sunny Canberra winter days.

Take care, may the Sun shine bright and warm on you.

Lv Dianne xxxxxx

Anonymous said...

Dear Dainere,

I am so sorry to hear about Bill. He sounds like he was a wonderful family man. He will surely be watching you and helping you from above.

Both of my boys came down with colds in the last week of the term. They are only now looking like they might be on the mend. As it has been so cold and bitter they have not been able to shake the cough and my littlest Tom is up each night coughing and coughing. I was thinking about you and your mum last night when I was up with him unable to get back to sleep.

Your pain has been going on for so long now. I pray for you each night that you will get a good night sleep. Along with your mum, she also must be feeling sleep deprived as well.

You must be enjoying the holidays having your family home with you each day must be very special. I hope that when the new term starts you are able to come back to school. The walkathon is getting close and in the first week back we will be sending out the sponsorship forms. It is good news that Jarrett is able to start training again. Nalarni next?

I hope that you have a lovely holiday and that we see you back at school

God Bless

Mrs Chatty.