Friday, October 5, 2012


29th September to 5th October 2012

We have had the most perfect Spring weather here in Canberra over the past few days, it is so magnificent to see the sun streaming into the house and have some doors and windows open letting in the fresh air with a delicate hint of spring blooms wafting in. However, the delightful weather is set to change, with rain predicted and a drop in temperature forecast for the coming week.

Last week I forgot to mention that I had seen Sarah, who not only shares the same Birthday with me, has been courageously fighting a brain tumour, shares my passion for finding a cure for brain tumours and inspires me, visited.  She is organising a truly incredible concert to raise awareness and funds for brain tumours in 2014, in fact it is going to be on our Birthday, it will be her 40th and my 16th.  The concert is going to be called Brain Storm, I know that her determination and tremendous passion for this to work will make it a huge success. 

I was also fortunate enough to have a visit from Mez, who is an Australian gymnast, she was reserve for the Australian Gymnastics Team at the Olympics.  She has fought many obstacles from injuries and other setbacks, she loves her sport and gives so much, she is a very inspiring person and her goal is to be in the team for Rio in four years time. 

This week I had my physiotherapy appointment, I have been quite uncomfortable with pain, so was really looking forward to seeing Kaitlyn.  She worked on my coccyx which has been working hard to support my spine and then that has made it painful and out of place.  As Kaitlyn released it I could feel my tightness and pain decrease in that area.  She also worked on my legs which have been painful and rather weak causing me to off balance several times.  While Kaitlyn worked on my legs, I had those amazing heat packs on my spine and buttocks.  Something so simple provides such a wonderful relief, I wish it could last much longer than it does. 

I have been working on some school assignments also this week, yes, we are on school holidays and still have work to do!  Next Term is exams so it is important to get through the work we need to cover so we will be prepared for our exams. 

On their way home to Sydney from Cooma, I also had a lovely visit from Stuart and Meryl, they always brighten my day and Stuart has experienced some of what I have as he has lived with brain tumours.  Having people like Stuart and Sarah to talk to is so special because they are the only ones who really understand what it is like to live with a brain tumour and how it changes your life. 

My very helpful and creative occupational therapist, Tom also visited, he has come up with a couple of new ideas to assist me at home and school.  He really enjoys what he does and having him supporting me makes my life just that little easier, I am so lucky to have him working with me.  He is going to have my wheelchair sped up to its maximum, I am so excited about that.  Something very exciting is that he is going to try to organise a very special wheelchair that is a much faster speed that I can have a race against Jarrett at the AIS track.  Running was something that I really loved and I had goals of been as good as Jarrett and representing the ACT, but my diagnosis changed all that and with my recurrence I know it will never happen but to just have one day when I can be fast and feel like I am at running speed would be so awesome. 

Today I had a little ride on my tricycle, the winds had come up so when I was riding into it, I found it very difficult but with it behind my back, I felt like I was flying.  I can not ride for too long as I become tired and my back becomes painful but riding today put a huge smile on my face.

Pain is a dreadful thing, it can virtually take your breath away and make you so uncomfortable, having my panamax and oxycodone helps it but as it is constantly there all the time, it really becomes tiring.  Medications are not the only thing that can help pain, using heat, having massages (thanks to Nalani) and of course physiotherapy are all great ways to assist with pain but none of these things provide permanent pain relief.  If someone could invent a medication to rid the world of pain they would be very rich and so many people who suffer all the time would be eternally grateful.

Jarrett went to a concert this week with one of his mates from the running squad, the band that they went to see was The Amity Affliction, it is not really my type of music but Jarrett likes it.  He was so excited to be going to the concert and was even more excited when at the end, the lead singer was shaking people's hands and thanking them for coming to the concert and he reached over and shook Jarrett's hand.  Jarrett was not like a girl though, you know the ones who see or touch Justin Bieber or One Direction, he did wash his hand afterwards!

All the football Grand Finals are over now, with Sydney winning the AFL and Storm winning the NRL.  Neither are teams I support, but I was cheering for them on the day.  I was elated to see the Tigers win the lower grade Grand Final.

When we turned our calendar to October, I saw the most beautiful picture of a rainbow, looking ever so rich and colourful reaching across the sky beyond a lake and bushland, then I noticed these words beside it........"Hope; sees the invisible, feels the intangible and achieves the impossible" 

I will leave you with those lovely words and hope that they inspire you as they have inspired me these last few days. 


Anonymous said...

Hello Dainere,

It is good that you have people like Sarah and Stuart to talk to.

Stuart and Meryl seem to be a wonderful couple.

You have been busy with visitors and school work.

A cure for pain would be great. I'm sure I heard on radio that pain can be seen affecting the brain in scans. Perhaps more research will one day unlock the key. Though some pain is needed - like if water is too hot for example, the pain warns you. Chronic pain is not good. My mother has a patch which lasts three days and releases pain relief gradually.

Tom has some great ideas.

Good to read that you've been cycling.

I'd never heard of Amity Affliction. They have been around since 2003.

Great quote from the calendar.

Kindest regards,


Anonymous said...

Dear Dainere, oh yes isnt it fantastic to have a little taste of summer , but alas we have gone back to to a taste of late winter here in Padstow , we had a very very rain storm last night and wow the noise was tremendous , even without my Baha i could hear it quite clearly.

WE look forward to hearing more about the Brain storm that Sarah is organising , i know we talked about it last week when we caught up with you . She is an amazing lady , just like you .

Yes we also wish Mez all the very very best for Rio .

So glad that your physio went well, oh yes weve talked many times about the simpleness of hot packs , they are tremendous . Even when we have our remedial massage Angela always covers us with lovely warm towels .

Thank you so much our dear friend for your lovely comments .

Oh wow Dainere , this new wheel chair sounds Awesome , next time we see you will have to show us your new Chair.

Good on ya for riding the tricycle .

Oh how cruel your pain is , we now what you are putting up with , we physically see it when we visit , and do you know Dainere , you looked absolutely tremendous this time , you gave us lots of those "" splediferous "" smiles of yours , i wish i could put them in a bottle and bring them home with me . Even with all that pain , you can still smile , You are awesome , i was never as good at combatting my pain with my brain tumours . We look up to you so much .

So Glad Jarrett enjoyed his concert , it was so good to see him and Nalani last week .
What amazing words , they stick in your head dont they .

well we wish you a great week Dainere , take care and lots of love hugs and kisses .

stuart and meryl

Anonymous said...

Hi Daniere,
Looks like that spring weather is playing trickson us again. Last week was so lovely, and this week looks to be back to cold mad miserable. Never mind, it gives me a chance to catch up on inside things that I never feel like doing when it's lovely outside!!
I hope you are able to catch up on a little more rest. Rest is an important part of pain relief too - it gives our mind and body a chance to restore.
You made me laugh thinking about you racing Jarrett on the AIS track in a super fast wheelchair - I really hope this can happen for you.
I'm heading down to the south coast for a few days with one of daughters, my sister and her daughter and looking forward to spending time doing relaxing girlie things. Ollie the cat of course has to stay at home ( he HATES the car) - he'll have to get his smooches from my husband who pretends he doesn't really like him but I often see them snuggled up together on the lounge - haha.
I found a quote the other day that so reminded me of you...
" I am only one, but still I am one. I cannot do everything, but still I can do something. And because I cannot do everything, I will not refuse to do the something I can do.". Helen Keller

With love,
Catherine and Ollie the cat xoxo

Anonymous said...

Hi Dainere

You have had a really busy time whilst on holidays from school. It's a great idea to keep up with as much work as possible to prepare for your exams. If only students your age without your troubles could realise that by doing this, they would achieve their outcomes!! My son in Year 9 has ben working on a Commerce assignment regarding the business his group established in late Term 3. It was an ice cream stall at school, the only one on market day to sell ice cream & he competed with other stalls selling cakes, BBQ lunch, drinks, etc so I believe they did rather well.

I went to Canberra last weekend, (Grandfinal day)& it was fantastic. I kept seeing the signs to your suburb. I was telling my sister & niece all the time that this is where you live. I did not want to impose on you & your family but one day I would love to meet you in person. The weather was magic, the shopping centre was great fun & Floriade was splendiferous. It was so crowded but the colours, designs, the scent, the displays & markets stalls were excellent. We thoroughly enjoyed ourselves. My cousin kives in Curtin so he met us at the end of the day with his 3 children & took us on a brief tour in his mini bus around the sights of the city. Canberra is so clean & flat & well organised. Next time, we plan to spend more than 24 hours there & take our families as there appeared to be plenty to do & see.

I understand about pain but not your pain levels. Last year when I was out of action with my 3 ruptured discs (still have pain but no where near as bad), it was so debilitating & I seriously doubted if I would ever experience a day without pain again. I was on so much medication to get through the day,running the house & family, & off work for a very long time, I had to really develop new mind set to manage. Surgery was no option so I had to rehabilitate with the help of ny physio & Pilates coach. I am so grateful to them & still do fortnightly sessions & daily exercises to maintain strength. I'm not on any medication except for the odd Nurofen if I have overdone things. Reading your blog the whole time also was part of my new mindset, you still are!! Keep being you Dainere, there is truly no one like you.

Can't wait to read about your new speedy chair. I am impressed that you will take on Jarrett, go Girl!!

Back to work tomorrow, term 4 always flies by, Take care,
Love always, Fran xoxox

Anonymous said...

Hi lovely girl

I am so glad you have people to talk to who have experienced some of what you have

I wish better pain medication could be devised as well. I can't imagine living with the pain you do.

It's great your sister has achieved so much this year and its nice she can practice her massage on you ;)

I hope you are enjoying school holidays, some days have been so beautiful and sunny and the canberra birds are all out.

I hope you do get that super fast wheelchair, that would be very cool

xxx Monica

Ash said...

Hello Dainere! It's been awhile since I wrote on here! I hope all is well! I've been reading past to catch up! You still continue to inspire me and others!

Your buddy Asho! :)