Tuesday, July 13, 2010


12th and 13th July 2010

As I sit to type this entry the rain is tumbling down out of the sombre grey skies, tears from the angels who look down upon us. It is such a contrast to the weather we experienced yesterday which although began with bleak, foggy skies, eventually cleared to a crystal blue, cheerful sunny sky.

My nights have remained constantly disturbed by this debilitating pain that I have been experiencing, I am so exhausted and it is taking its toll on me and Mum, she looks dreadful; dark circles under her eyes and just looking really tired also. However life goes on and like I always say I am lucky to wake each day and be able to face it the best way I can and that is usually with a smile on my face even though deep inside I do feel a little down.

I played Upwords with Nalani and Jarrett before we went grocery shopping, this week Nalani came while Jarrett went for a long run. I enjoy grocery shopping, it is like an adventure to me and I like to look for specials that Mum can buy as well as some new and interesting food we might like to try. The lady at the checkout was extremely friendly and was chatting to me, I felt really embarrassed though because I could not always hear what she had said, I hope she did not think I was rude as I tended to nod my head when I could not understand and I thought it was a bit annoying for her if I kept saying "pardon" all the time.

The rest of the day until the afternoon was spent answering some letters, emails and watching one of my Barbie DVD's. They always have a lovely moral to them and are light and easy to watch. They often teach you that it is important to always be yourself and follow your dreams, I really believe this is something every one can learn by. If we try to be like every one else then what a boring world we would live in and every one is an individual with a variety of extraordinary gifts and talents and it is important to use those to make the most of our lives and enhance the lives of the people around us.

It was then time for my appointment with my Paediatrician, I felt so fatigued and barely had the energy to sit. At the appointment we went over all that had occurred when I was in Sydney in June and what has been happening to me lately. Firstly, he felt that I have actually gone backwards and that is not my fault, it is due to all the side effects that are starting to take hold of my body. I could not stand very well and toppled, then he had to help me take any steps, I could not put any pressure on my right foot and I was so unsteady and in considerable pain as I attempted what he requested. I was measured and my height compared to the last time I saw him has decreased which is what happened in Sydney also, my weight has also dropped again, perhaps it is due to the pain that I am experiencing and it is draining me. He described what is happening to me as like my body going into hibernation, as even my pulse rate has slowed. He was writing my letter for my hearing aid, so that I will be able to have it fitted on 30th July, he thinks this is extremely important, especially with school going back next week, how am I supposed to sit in a classroom and learn when I can not hear at all, have trouble hearing correctly and have to concentrate so intensely that it tires me so quickly. He restated that my tumour has grown but is stable at this present stage however it could become aggressive next week, next month, three years or even five years down the track. There are two new areas of enhancement on the brain that are unexplained at this present time and the enhancement on my spine has remained stable. It is so difficult to try to live a normal life when you don't know what could happen. Yet I do see each and every day as precious and treasure every moment I have. He thinks that every child that has to go through a chronic illness should have to see a child psychologist so that they can discuss feelings. I always try to be positive, courageous and strong, he said that is great, but sometimes I am allowed to feel angry, negative and upset. He wanted Rhiannon to have a look at my foot when I saw her today to see if there was anything she could do to assist with it. We spent an hour with him and he will see me again on 22nd September but is always available to talk to in between appointments. He is a little disappointed about the lack of information that he is receiving from Sydney, I guess this is what happens when we don't have a paediatrics hospital here in Canberra, that is really sad, considering we are the Nations Capital.

I watched MasterChef on television and was surprised to see Jonathon go, he had avoided the bullet so many times but this time he just couldn't. When I went to bed I was still in pain but I snuggled into my warm bed seeking some comfort and sleep. However another sleepless night again has left me feeling rather like a zombie at the present time.

Today as I have said is a horrible day in Canberra and the sun has not even made the slightest appearance in our skies. My morning was spent playing Upwords and a card game called Happily Ever After. It was then time to go to my physiotherapy appointment, I always eagerly anticipate these as I find I do get some relief even though it is limited it does help for a few days. Rhiannon had a look at my right foot and agreed that the swelling and pain was caused by an injury, most likely when I was attempting to walk and collapsed. It seems the ligaments around the cuboid bone, now that bone comes off your metatarsal bones and it is the slightly lumpy, well it is actually a cube shape bone on the side of your foot, have pulled tight and have made the bone lift. She did some work on it and then taped it to take some of the load off it, hopefully it will provide some assistance for the next few days. She also worked on my knees and hamstrings, when these are released I find it helps me. Although my knee, hip and ankle are still extremely painful. She thinks a walking frame may provide some assistance to help me with my walking and is going to look into it for me. We do not have an occupational therapy contact here in Canberra anymore because our assigned person went on indefinite leave and no replacement has been found to take over her cases. I have to set myself little goals each day, when I have a bad day I can't be too disappointed and when I have a good day I need to make the most of it. I have another physiotherapy appointment in two weeks. I also have to continue working on my upper body exercises as well.

In the mail yesterday we received my next appointment letter for my MRI, that is on 7th September. So it looks like I will have all my appointments during the second week in September. I hope that this time the appointments are not made too close together as missing out on appointments is not only disappointing, it often means that I have to wait another three months to have some of my issues taken care of.

I also received a wonderful letter and that was from the paralympic committee and I have been given a provisional classification as a disabled athlete. I have a T/F 36 classification and it means when I compete at my school sports carnival it is in my own class, not against everyone else. This then means that I may be able to qualify to represent the school at a zone level also. This has given me encouragement to work devotedly on my upper body exercises so that I can prove that when you have a brain tumour you can do things that you used to be able to, just a little differently. Some people in Sydney have thought I should give up on my dream of doing athletics again but I did not want to, I feel I have already had to sacrifice so much since my diagnosis and this is one thing that is not going to be ruined by my tumour, surgery or treatment.

We are off to running training this afternoon for Jarrett who has fortunately made a full recovery after his injury. I am going to rug up and sit in the car to watch, there is no way I want to try to brave the miserable weather.

Tomorrow is Nalani's MRI, I really hope that it is nothing too serious and that she will be able to be back doing what she loves, I know how it feels to be deprived of those little activities in life that really do mean so much.

'There are times when life isn't all you want but if you have your wishes and dreams you can be driven forward over the biggest bumps and the deepest potholes'


Anonymous said...

Dear Dainere
You certainly had a big day yesterday. It is fun going grocery shopping, especially when you have plans for cooking up a storm and looking for all the ingredients.

Your Paediatrician sounds a really nice man and what a good idea to see a child psychologist. Of course it is important to be positive, but it is also right to have all the other emotions going on too. Never be afraid to let go, it does wonders.

How good is that, T/F36 classification, now for the fun of discus, shot and javelin. Never lose sight of your ambition to run again. Think of Lance Armstrong and his attitude and where he is now.

Hopefully the physio's idea of a walking frame is right for you. Just think, not only would it give you support to get around on your own, it would give you back the independence, you must really miss.

We do hope that relief is on the way for your pain too, and that both you and Mum get a better nights sleep really soon.

Love you
Nan and Pop xxxxxxxx ooooooooo

Anonymous said...

Hi Dainere,
I was glad to read your post tonight but wanted to say something - it seems quite hard for you at times not being able to hear properly, like when you were talking to the lady at the supermarket. Try not to be embarrassed though as its not something you can control, and don't be scared to say something like "I'm sorry but my hearing isn't very good at the moment". The person doesn't need to know why, but that would stop you worrying about seeming rude. Anyway, its just a thought.
I've had medical problems too and know how exhausting just simple conversation can be when you have to concentrate so hard on every sentence. Keep looking forward to the end of July and don't be scared to tell people when you have trouble hearing something.
I'm glad the paediatrician pointed out that being upset and angry is okay sometimes. You do so much to inspire other people, but nobody should have to live with your pain and be positive 100% of the time. Thats not human!
I really hope something can be found to improve the pain soon, and you keep on managing to find distractions from it too.
I love the quote from the end of your post, thats something I need to remember too.
Take care,

Ali Davies said...

I read with interest what is happening with your Physio as my husband is a Physiotherapist.

Congrats on the whole sports thing. Good for you. I must admit it saddened me a little to read that people are suggesting you give up the sports. I am sure they are saying what they think is best. But as you probably know, everyone has different opinions but you have to follow your own heart. If it is OK I would like to add my view:

One of the things I have learnt through lifes challenges is never, never give up on your dreams. You may have to alter them for circumstances and do them a different way, but never give up on them.

Sending you lots of good wishes from Ireland x

Dianne said...

Dear Dainere,

Dr Rosier is correct in saying you do have a right to feel upset sometimes to relieve the pressure and frustration, to be able to cope with your physical difficulties. Whilst you put on such a brave and happy face 'we' all accept there are many times you would feel angry, that is to be expected.

It is very frosty and foggy outside again today Fri 17th, be sure to hug your water bottle today. Geoffrey is standing on top of a house in Forde this morning putting up roof trusses...he does not seem to mind how cold it is but I feel for those who work outside in the cold.

How good is that to read you have a follower in Ireland! Keep up your good work communicating your message, your voice is now worldwide.

Stay warm and sleep well.

Lv Dianne xxxxx