Friday, January 28, 2011


22nd to 28th January 2011

I have felt like I have been cooking in the oven this week with temperatures in Canberra soaring into the high thirties for most of the week. When we have it that hot it is also extremely dry and that really tires you, although I have heard that people who have had brain surgery are often more severely affected by extreme hot or cold temperatures and I believe this to be true.  I find that both the scars the one where the tumour was removed and the one where the build up of fluid was drained became extremely painful even to touch gently and I feel this is caused by the extremely hot weather conditions.

This week I have visited my doctor to get a form to have a blood test prior to going to Sydney next Tuesday, whilst I was there I told him that I had been experiencing a painful right ear for a few days, he checked my ear and said it was not inflamed and then he found that I was getting some new teeth, my twelve year old molars and that had been causing my ear to ache. 

All week I have been working with determination whilst sweating on all my physiotherapy exercises, I want to be at my strongest before I go back to school on 9th February because I know that school will zap my energy levels as being in Year 8 this year the work will be much more demanding.

I went to the orthopaedic surgeon with Nalani for her review, he was exceedingly impressed with her progress especially in the degrees she was able to bend it without assistance, however, her quad muscle is still slightly weak so he wants her to wear the brace for a little while longer for weight bearing so that it will heal and be stronger.  She goes back to see him again on 7th March but in the meantime she is working hard on all her physiotherapy exercises.  He also told her that when she goes back to see him in March that he will begin a program for her for resuming sport.

Tinkerbelle had her annual vet check up this week, she is in excellent condition, with the vet commenting on what a beautiful and healthy looking coat of fur she has, I had washed her the day before her vet visit and her fur glistened and felt as soft as fluffy white clouds.  Mum's cat Paris also went to the vet with Tinkerbelle, Paris will be twelve in April, she is also in good health.  She had to had what looked like a blood blister on one of her back paws pricked, a sample put on a slide and then investigated under the microscope.  The vet confirmed it was a blood blister and thinks that because Paris is old that her blood is pooling in this one particular area and she will have to have it popped if it comes up again, she also mentioned that if it is still coming up regularly in three months that she has to go back to the vet to have it investigated a little further to eliminate a tumour.

My blood test was a breeze, I am able to sit calmly and it makes it so much easier for the blood nurse to take.  I had to have an FBC which is a full blood count, I also had to have my calcium, phosphate and Vitamin D levels done, that meant they had to take two vials of blood. 

Wednesday was an extremely proud day, because we celebrated Australia Day, we are so fortunate to live in such a free and splendiferous Country that has some of the most beautiful landscape in the world and such a diverse multicultural population.  I eagerly went onto Christine's website of Australian Quotes and found so many inspiring quotes, the site again is it is marvellous just to look through it but is also a valuable resource for school projects, essays or speeches.

I am so proud of myself because on Sunday when Jarrett had running training at the AIS (Australian Institute of Sport) I took my rollator and with the spirit of determination in my heart, I walked one lap of the entire track which is four hundred metres, it was perhaps at a tortoise pace compared to what Jarrett was doing but I achieved a goal I had set myself.

Today was my haircut, I was so excited yet a little nervous at the same time, I has been almost two years since I have had a haircut!  When the hairdresser began to cut my hair it felt wonderful,  it made me feel gorgeous, which after all I've been through you don't often feel that way.

I have not received my final MRI results as yet, the preliminary results have shown that the remaining tumour has increased slightly in diametre but remains stable, there appears to be increased enhancement in my spinal region which may need further investigating hopefully I will know something on Monday before I have to go to Sydney on Tuesday to see my oncologist and have my lumber puncture.  After my nightmare visit to Sydney at the end of last year I am a little fearful about this one but I will have the whole family there to support me. 

Friday, January 21, 2011


15th to 21st January 2011

The floods have left Queenslander's with a huge clean up, broken hearted and grieving but they have strong spirits and will move forward, they will come back even stronger.  Now the poor Victorians are facing a similar struggle with towns being cut in half and homes inundated with murky flood waters.  Our lives are so unpredictable and are often at the hands of fate.

My week has been filled with appointments and an exciting event, Nalani's 17th Birthday which happened to also be the day of my MRI which I was fortunate enough to be able to have in Canberra, instead of having to travel all the way to Sydney for. Strangely, I was more nervous than I usually am, I have had to have countless MRI's throughout the course of my illness and normally I have butterflies but for this one they were fluttering more relentlessly than usual.  Then I realised why, my first ever MRI had taken place in Canberra and had given me the news that I had a brain tumour.  You won't believe this but I was in exactly the same MRI room as the one I had been in on that dreadful day, so my butterflies became worse and I actually think my stomach was doing somersaults.  The staff were incredible though and put my mind at ease and even though the MRI took over an hour they were extremely thoughtful and calming.  I do not receive my results until Monday and remain hopeful they will be positive.  Mum was asked many questions throughout the MRI about remaining tumour and enhancement on my spine, a doctor was called in to look at the scans whilst they were being done but I feel that if anything was severe we would have been told on the spot.  Following my MRI I had a splitting headache and ended up with a bit of an upset stomach, perhaps it was from the nerves.

Nalani had a splendiferous Birthday although she was not able to go out because of her knee, she had a marvellous surprise from some friends who brought her a cupcake with a candle in it that played Happy Birthday that put a smile on her face, she is fortunate to have special friends who are always there for her.  She received some beautiful gifts and we had a special dinner and cake to celebrate.

Today I had an appointment with a dietitian who weighed and measured me, I have not grown any and she was happy with my weight, I do not need to up my intake but if I am feeling too full with the diet I have been given then I am allowed to decrease it.  After the dietitian I had my physiotherapy appointment, I always love seeing Rhiannon and she was also pleased with me, my muscle bulk on my right leg has increased.  She worked on my right foot which has still been giving me some grief over the last week and I have a new area that it is painful and that is up into my big toe which she feels is bone related not ligament related.  I have a modified step exercise because my balance makes it difficult to do and I often topple when doing it.  She also did some work on my right hand which is tightening up and actually quite painful when I use it to do writing or fine motor skills.  I am so lucky to have Rhiannon she has been there for me from before my diagnosis and has made such a difference to my recovery. 

I have been to the AIS for running training for Jarrett and have set myself a goal of walking with the assistance of my rollator the whole track which is 400m in total.  I feel confident that I will be able to achieve this goal and then will continue to set further goals of greater distances over the year.  I have learnt from last year that you start with little goals and gradually build up to the bigger ones, even though you really would like to achieve the greater goal first it is all about patience and taking care of yourself.

This year I hope to still continue to be able to inspire other young people who have to travel the same journey as I have.  Raising awareness about brain tumours and funds that are needed to continue research to find a cure are a top priority as well as also raising awareness about side effects and moving on after treatment as I think once you have your treatment you are often forgotten and that road you travel then is just as difficult or more difficult than when you are first diagnosed and receiving treatment.

Every day I do my physiotherapy exercises, ride the exercise bike and do some stretches with Jarrett, I am determined to be so much stronger and hopefully compete later in the year in some sports events, not in a wheelchair but on my own two feet.  I will never be the person I was before, in fact I think I am now a better person because I have lived the journey that changed my life and I have the courage to have ambition to continue some of the activities I used to do.

Tonight Jarrett is racing at Interclub, I love to go along and watch him, he really inspires me.  Something else that really inspires me is quotes, I love reading them and making up my own, they have been something that has definitely helped me through some of the difficult as well as the good days that I have gone through on my journey.  Christine who is an extraordinary lady began a project over a year ago collecting thousands of quotes by Australians as there was no national register of Australian quotes.  As a special gift to all of Australia she is launching a special website on Australia Day it is hoped that Australians will use the site to draw inspiration, motivation and shape our hopes and dreams.  I am so honoured because she has used some of my quotes on the site and I hope that my words may provide inspiration and hope to those that read them or use them. 

Next week Nalani sees her surgeon to see when her brace will be able to come off it is now at ninety degrees and she is walking more easily although with a bulky brace it is not elegant but she has graduated from the chicken walk, she will also find out what lies ahead for her. Friday is haircut day, a huge day for me to finally be able to have what hair I have tidied up ready for school.  It truly is the little things that really do count for me at the moment in my life and I appreciate them so much.

Friday, January 14, 2011


8th to 14th January 2010

What a devastating week we have had in Australia, the destruction and loss of life that the Queensland floods have caused is just heart breaking.  My Nana and Pop live in Queensland and I prayed constantly for their safety and that the floods would not break the 1974 record, my prayers were answered on both accounts but still there is just an astonishing amount of damage and sorrow from this tragedy.  Now today we are hearing similar news from Victoria and Tasmania.  So many lives are being changed but I heard one man say on one of the reports that even though he had lost his house and most of his possessions they could be replaced, it is life that can not and he is just so grateful to still be alive. 

The journey these people have been on will now change their lives forever and they will grow stronger from it just like those that travel any difficult journey in their life time.  It will also bring communities and the people within them together, bonding them in a special way. I have watched the reports on television throughout this week and I think that we are so lucky to have technology today that does make us more aware of what is happening around us. 

We have had showers and overcast grey skies here in Canberra most of the week with rain predicted for the weekend, it is not like Summer at all.  With Nalani having had her knee surgery and the recovery process being a slow one, having to be indoors has not been as mundane as it would have been if our weather had been glorious.

This week I have experienced some concerns with my right ankle and heel again, when I was walking using my rollator which I am confidently mobilising around the house with, I experienced sudden pain that was a throbbing, sharp pain that caused my ankle to buckle under me.  I could not put weight on that foot for the rest of the day,spending the day using heat packs and panadol.  Pain is a terrible thing to have to put up with constantly and I know that many people have to live with it every waking moment and that must be so difficult and impeding for them.  My pain is something that brings tears to my eyes but at least it can be relieved and I am extremely grateful for that.

I have spent quite a bit of time working on art and craft projects this week, including making a special doorstop for Nalani for her Birthday which is next week.  I have also completed one of my paintings for the auction this year and have almost finished the second one and I am so thrilled with what they look like and I hope that they will put some sunshine and hope into others lives. 

Doing all my physiotherapy exercises to become stronger is extremely important to me because the stronger I am then I will be able to face any obstacles that are thrown my way and recover from them more rapidly than if I am weak.  I can notice a considerable amount of difference between my right and left sides, my right is weaker and I often find it fatigues so much more quickly, fortunately I learnt to use my left to perform many functions that my right normally did prior to having my tumour. 

My hair continues to grow slowly although it is patchy and was really very dry and wiry, my Nana gave me a special product to use on it called Argan Oil, it can be bought at a hairdresser and it adds moisture to your hair, it has helped mine to be more nourished and have some shine.  I wish that there was a similar product you could use on your scalp as mine is dry and scaly.  I am counting down the days until I have my first hair trim in almost two years, there is not much hair there to trim but it does truly need a tidy up so it does not look so wild and perhaps the trim will encourage growth. 

Jarrett ran at the AIS last night at an Interclub meeting, he ran in the 3000m, he ran amazingly, he easily came first in quite a large field of all ages, he even lapped some people two times!  He has been working hard on all his breathing techniques since being diagnosed with Vocal Chord Dysfunction and it has made a difference.

I have got back to playing Upwords again, it is such an enjoyable game and lots of fun for the whole family, I think I have recommended it before but I will do it again especially because so many people are stuck indoors because of poor weather.

Next Wednesday is my MRI , that is Nalani's 17th Birthday also, I have to admit that I am a little nervous about it but as always try to remain positive.  You are trying to get on with your life and are reminded of what has happened to you every time you have to go for tests, I guess it is natural to be a little nervous.  Sometimes I have headaches, seizures, pains or  balance issues, I just try to ignore them and move forward and that is what is so important although it is also important not to ignore some things if you think that they don't feel right. 

I believe that hope is such an important part of our lives and we should never give up hope even when our life seems like it has been turned upside down because through hope we could create a light that will become brighter and more clearer as we head towards it and find happiness.

Please pray with me for all the victims of the Queensland Floods that they will find strength, determination and spirit to move ahead from this devastating event.

Friday, January 7, 2011


1st to 7th January 2011

Happy New Year, my wish for everyone is to have many rainbow moments to treasure throughout this year and to enjoy the little things that life has to offer.

It is so hard to believe that one week of the new year has already gone by, this week has brought extremes in temperature here in Canberra, today we have had sunshine, winds and overcast skies, it looks as if it could rain later this evening, then rain is forecast from Sunday until Wednesday.  We are fortunate though that we have not had to experience anything like the poor people of Queensland have with flooding that has caused so much damage and seen many people lose their homes and belongings.

Sadly my Nana and Pop had to head home on Tuesday, back to Queensland, I will miss having them being able to visit us and spend time with us but we can still talk on the telephone and email each other.  They made it back safely although they had to travel through heavy rains and wet roads to get home. 

We had air coolers running with the hotter weather and the constant loud humming noise that they made really irritated my ears and affected my hearing, I found it more difficult to hear so really relied on my hearing aid to allow me to hear conversations and television.

My MRI is scheduled in Canberra for 19th January which is Nalani's 17th Birthday so I am hoping that because it is on such a special day that I will have to receive a positive result. 

I was walking on my rollator and my right ankle went from under me it twisted a little, was painful for a while but has improved now and I am back scooting around again, nothing can stop me.

Nalani and I have both had physiotherapy appointments this week, Nalani's knee brace is now set at thirty degrees which allows her to bend when she is walking, she still looks really awkward when she walks, her scars are healing really well which is terrific.  She has physiotherapy again next week and will have her brace adjusted again to allow her knee to bend even more.  At physiotherapy Rhiannon worked on my hamstrings, knee and ankle as well as my shoulder and right wrist which were stiff and sore. I also practised doing some stepping using phone books and holding onto a bench, it feels so strange to step and a little wobbly, my left leg is much stronger than the right so it is easier to lead with it but I have to practise with my right leading, it just feels like I might topple but by holding onto something that helps.  I have my next physiotherapy appointment in two weeks.

We have been to running training and to watch Jarrett run at an Interclub meeting, Jarrett is running really well at the moment and is hoping to reach his peak by March, he has been selected to represent the ACT in the 3000m at the Australian Youth Championships.  

I decided to give Tinkerbelle a makeover and spent some time filing her nails, brushing her, powdering her with baby powder which you can do with persian cats to make their fur look beautiful, I cleaned her eyes and her ears and tied an adorable bow around her neck, she looked purrfect just like a show quality cat and really enjoyed her special treatment.

We had a bit of an adventure with a little lizard this week, we heard Mum scream from the laundry, you know the type of scream many women do when they see a spider or a mouse, well Jarrett and I went to investigate and Mum told us that a little lizard had come in the door when she opened it to go outside, it had run under the washing machine.  Mum and Jarrett attempted to get it out but it was so stubborn, they tried brooms, tapping on the washing machine and even using a blow dryer to try to encourage it to come out.  Then Mum moved the washing machine it ran out and back under again, so we ended up giving up, closing the laundry door off so that the cats could not get in and try to get it or even worse eat it and wait for Dad to come home.  Can you believe it, Dad got it out first go with a feather duster!

Apart from that we have watched some tennis and cricket and played Guitar Hero, Sing Star and Buzz Quiz games on the Play Station.  Poor Nalani is not able to do too much so we are restricted also but just being together having fun is what really counts. 

This year is going to be a splendiferous year that will bring many wondrous moments as well as I am sure of challenges because they are what make us stronger people, I am hoping to achieve some new goals that I set myself and continue in my endeavour to help others.