11th and 12th September 2010
My ankle ballooned during the night, it felt stiff and pain wise it was definitely a nine out of ten, I cried it was not fair to go to Sydney for tests and appointments and end up with an injury that will obviously now stop me from using my rollator when it arrives next week, I can't even put weight on it, it is just so unfair.
Despite feeling extraordinarily tired and still in pain I was excited because Dad was driving from Canberra to pick us up that morning. The best part was that he had arranged for Jarrett to be picked up and dropped home from running training so he could leave earlier which meant the sooner we left Sydney the sooner we would be home and for me this time Sydney had been absolutely horrific. When Dad arrived he packed the car and we went for a cup of hot chocolate so he could have a break before driving again. The traffic was not too congested and amazingly there were no hold ups in the M5 tunnel. We made good time, we stopped at Marulan for a drink and toilet break before arriving home just in time for a later lunch. On the way I had watched two DVD's in the car, it tends to make trip that little bit more interesting.
Nalani and Jarrett were so glad that Mum and I were home and we both got ginormous hugs then it was time to unpack, I often think that unpacking takes much longer packing. I needed to rest because the pain in my ankle had increased and also my knee was clicking and swollen. After my rest I wanted to help prepare the vegetable slice for dinner, I love cracking the eggs then beating them with the oil and self raising flour, Mum grates the carrots, zucchini and onion and then I mix them into my egg mixture and lastly the cheese is mixed in. Normally I eat quite a lot of vegetable slice but my stomach did not seem to handle it last night, I could only tolerate two small slices.
The Wests Tigers were playing the Roosters and we sat as a family to cheer my team on, I even got Mum to get my signed Tigers flag out so I could wave it, just like been at a game. When Roosters took a penalty kick to lead 2-0, I was not too worried and then the Tigers came storming back to lead 10-2 at half time, a decent lead but they needed to put more points on the board and that is just what they did. However, the Roosters made a comeback and in the last ten minutes it was any one's game really. When the score was 15-14 with the Tigers winning and only minutes left I felt we had it won, but then tragedy struck, my favourite player, Benji Marshall left the field, limping with a knee injury and as all the interchange players had been used the Tigers had to hold on to that narrow lead with just twelve men on the field. My heart was thumping and my throat was dry, I had my fingers and toes crossed and then the Roosters scored a field goal to lock the scores at fifteen all meaning that they would play golden point extra time, meaning they would continue playing until one team scored. We had our chances but were unlucky, so did the Roosters but from a move that I think should have brought about a penalty the Roosters scored a try to beat the Tigers 19-15. It did not seem fair and to have Benji injured was devastating, I am now hoping that St George beat Manly because it then means that Tigers will play Raiders next week, what a game that will be.
I went to bed tired, sore and upset, my whole right leg gave me problems during the night and by morning time I felt like I had not slept a wink. We had running training at the AIS today, I was delighted to see that the sun was shinning , it was a marvellous Spring day and a lovely day for a walk while Jarrett went for his hour long run. On our walk we discovered some tiny baby bunnies peaking their heads out of their burrows, there were blossoms of pink, purple and white and birds singing delightfully, the walk revived my spirits however with every bump that we went over my knee and ankle throbbed in pain.
The good news was that Jarrett did not have any asthma problems today, perhaps the weather assisted him, he did not have any problems on the Saturday either, maybe his new asthma medication is working for him now. He has to go to the paediatrician on Wednesday to find out all his results from his lung function tests, I hope they are good for him and he can continue to excel in his running.
We have some camellia's in our garden and they have been dropping their old flowers off, Dad was doing some gardening and I wanted to be in the sunshine because the sun reminds me of warmth, happiness and love, so Dad got a special tool that is like a hand as it can grab objects and I sat in my wheelchair and picked up the dead flowers and placed them in a bin. I was absolutely exhausted when I was finished and I must have twisted strangely because I ended up with a painful neck.
I rested for a while and watched a movie called Confessions of a Shop-a-holic with Nalani before cooking some piklets to have for dessert tonight with jam and cream. My ankle, knee, hip and neck are extremely painful at the moment, I have a headache behind my right eye and feel a little nauseous, perhaps I have overdone it today, so I think I will finish this and have another rest because I have school tomorrow.
During the coming week I should receive some more results and information about my return to Sydney, going every month is going to be difficult, it will make it harder to settle into school work and I hope that I will not miss any of the exciting activities that are planned for Term 4.
'I think we all imagine what sort of life we would like to live but we don't always strive to achieve it because we think we have all the time in the world, don't put it off, you don't know what is just around the corner, make the life you imagine a reality'
Sunday, September 12, 2010
Friday, September 10, 2010
NEUROPATHY TEST, ENDOCRINE, RADIOTHERAPY CLINIC, NEUROPSYCHOLOGY REVIEW, PHYSIOTHERAPY AND NEWS ON MY RETURN
9th and 10th September 2010
I spent my night waking with merciless pain in my right ankle which had been injured and it spread up into my right knee which in turn became stuck, luckily Mum and I are sharing the same bed so it was easy for her to help me. I was so exhausted from my busy days of appointments and I wished that I could sleep but alas, it was obviously not meant to be.
Thursday I had a morning appointment in the Neurophsyiology Department, it was a study that helped evaluate weakness of upper and lower limbs, through impulse conduction through the somatosensory pathways. An electrical stimulus was applied to my tibial nerve which is in my leg near my ankle and it was increased gradually to a point that my foot twitched, it felt really weird, I guess I could describe it like lots of mosquitoes biting me at once. The same test was done on my median nerve which is in my wrist, the same feeling occurred and my hand twitched. What this test showed to the neurologist was that manually she was unable to get any stimulation from my ankle but with the electrical stimulation it showed a reaction which was good so my neuropathy is not as severe as what she thought it originally to be. Neuropathy often occurs during and after chemotherapy treatment especially when the drug vincristine is used, it can actually improve in time.
My next appointment was with the Endocrinologist, she was not happy with blood test results which came back indicating that there is a problem with my hormones. She feels that I need to have estrogen hormone patches and she said sooner rather than later because my ovaries are starting to shrivel. She is also concerned about my bone density, she wants me to have a bone density test but would prefer me to have it done at Westmead where a person she says is the best does it. There is also an issue about my growth, I have not grown in the last six months and my weight has not increased it has been decreasing.
The appointment I had been so excited about all day was my review with my Radiation Doctor, if you have read my book, I described him as an extremely friendly, caring doctor who talked to me about what was happening, I referred to him as being like Santa Claus. As I was waiting to see him, members of the Coogee Team who had been by my side throughout my radiotherapy treatment came and saw me, they said that I still had the most beautiful smile and said it always lit up the room. I felt quite teary seeing them but it was tears of joy because they had been special to me. Finally the moment I had eagerly anticipated occurred, my doctor came into the examination room with the warmest smile, he came straight to me and gave me an enormous, comforting hug. Then he spoke to me about what had been happening over the past ten months since I have last seen him. He told me that my fatigue was a result of the radiation and that it could continue for an extended period of time, he apologised that my hair had come back so patchy and said it does not always happen but unfortunately it had to me, another less common side effect, he even held out his hand and told me I could hit him, but I chose not to and told him I'd prefer to blame it on the chemotherapy because I detested having it. He told me that there is no large tumour mass in my cerebellum however the metastatic tumour remains, reduced in size from what I had originally presented with but it appears stable at the present time. There are some other enhancements in the brain but their significance is unknown that this stage. He mentioned the areas on my spine and thought the Neurosurgeon should look at those areas as a precaution. The hormone and growth problems are also side effects from the radiation, it seems that chemotherapy has more side effects while you are on it but it is the radiation that has the later and often more devastating effects. At the end of my appointment I was given another humongous hug and kiss and he told me to keep fighting hard, he also said he wanted to see me again in six months time. When I see my Radiation doctor he gives me more confidence and hope and I can visualise that rainbow when I am around him.
My day had been busy, exhausting and I had received the upsetting news from the Endocrinologist, more medication and procedures to endure. My mood turned to excitement again though because we were having dinner with Tess, Gavin, Paul and Carlos, the extraordinary people who made my dream of my book become a reality. We went to the Spanish Fly at the Spot. It is a tapas restaurant so you order numerous dishes and share. Some of the dishes did not appeal to me, but looked delicious but I did have some John Dory in a parmasen cheese batter, Beetroot Dip with mini toast bread and stuffed zucchini flower, I ended my dinner with the perfect dessert, profiteroles and they were scrumptious. Being away from the hospital and all the tests and poking and prodding was marvellous and the company was fantastic, I had some difficulties hearing as the venue was quite noisy, so I had a lot of feed back in my hearing aid but just been with these special people lifted my spirits immensely. I came home tired but contented until my food went through me, which seems to happen if I have just slightly richer food. It was so funny because Tess and Gavin were fighting over me to give me hugs, which I truly needed that night so I felt very spoilt.
It rained overnight and the Sydney skies this morning were grey and seemed to threaten to open up and let the rain fall again however blue skies took over and the sun shone on our last full day in Sydney. I had my Neuropsychology Review this morning and whilst we were waiting we received a call to say my Oncologist wanted to see me in the afternoon to let me know what was happening. My neurosphychologist is a really gentle and caring person, we discussed school and home life what I feel I am achieving and areas of concern I have. After she took notes on all that Mum and I told her, she said we could have a break, go for a hot chocolate and come back because she wanted to run a few tests on me. First of all I had to cross off all the number threes on a double page that had other numbers and letters, on a sheet of paper there was a start and finish point, I had to draw a line between numbers, it was like dot to dot but done differently, after the numbers I was given the alphabet to do, the next one was numbers representing letters like 1-a, 2-b, 3-c and they had to be completed like a dot to dot also, then I had to trace a dotted line and when you got to the circle I had to go through it and I was relieved that it could be a little wonky because my right hand is not the best at tracing, next I had to write my name and address and then I did one that was like a crack the code but using numbers and symbols, then I was given a letter and I had to come up with a word but it could not be a name or place, my final task was to come up with a list of boys names and then animal names, it was fatiguing but I felt I did reasonably well. When she was pushing me back into the waiting room, I was surprised and delighted to see Gavin sitting beside Mum in the waiting room with a huge smile on his face. He had been at the hospital attending an appointment and wanted to catch up with me one last time and give me one last splendiferous hug.
He walked us down to my physiotherapy appointment which was next on my list for today and sneaked in one last hug. If it had not been for him and Tess I think Mum and I would have gone crazy this week, it has been such a difficult and exhausting week for both of us. I was a little worried about physiotherapy because my ankle was still painful and to weight bear was excruciating. However my physiotherapist used the ultrasound on it to try to relieve it, she felt it was an ankle sprain with soft tissue damage. She also measured my muscles and discovered as she suspected that there was more wastage in my right leg than my left and now with this injury there will probably be some more damage. She has set me a goal of trying to weight bear on my good days as much as possible. I know that with my rollator that Rhiannon has organised, that should be arriving next week, it will make a world of difference for my mobility.
From physiotherapy to visit my Oncologist who expressed his concern again that he felt I had deteriorated in the last six months and they want to see me now every month. I was also told to not take the tablets that were given to me by the pain clinic any longer as they are concerned that I could have severe side effects from them because of my hormone issues. So I am now back to square one with my pain relief, I have to take panadol four times a day, use heat and dencorub to try to relieve pain that occurs. They are going to have a team meeting next week and try to work out where to go from now.
After my appointment, Mum and I decided to have some time to ourselves and go to East Gardens to look around the shops and get away from the hospital. Been distracted by the shops helped me to not think about having to come back again so soon. Can you believe this, when we were walking through Myer, they were unpacking Christmas decorations!
My time here has brought new questions, some good news, so bad news, my concern is not about a return of my cerebellum tumour now, it is of what on earth is going on with my body and how and if it can be fixed, the doctors seem a little perplexed by it so that worries me.
'Life is so full of twists and turns, but I am always keeping my sights on that rainbow'
I spent my night waking with merciless pain in my right ankle which had been injured and it spread up into my right knee which in turn became stuck, luckily Mum and I are sharing the same bed so it was easy for her to help me. I was so exhausted from my busy days of appointments and I wished that I could sleep but alas, it was obviously not meant to be.
Thursday I had a morning appointment in the Neurophsyiology Department, it was a study that helped evaluate weakness of upper and lower limbs, through impulse conduction through the somatosensory pathways. An electrical stimulus was applied to my tibial nerve which is in my leg near my ankle and it was increased gradually to a point that my foot twitched, it felt really weird, I guess I could describe it like lots of mosquitoes biting me at once. The same test was done on my median nerve which is in my wrist, the same feeling occurred and my hand twitched. What this test showed to the neurologist was that manually she was unable to get any stimulation from my ankle but with the electrical stimulation it showed a reaction which was good so my neuropathy is not as severe as what she thought it originally to be. Neuropathy often occurs during and after chemotherapy treatment especially when the drug vincristine is used, it can actually improve in time.
My next appointment was with the Endocrinologist, she was not happy with blood test results which came back indicating that there is a problem with my hormones. She feels that I need to have estrogen hormone patches and she said sooner rather than later because my ovaries are starting to shrivel. She is also concerned about my bone density, she wants me to have a bone density test but would prefer me to have it done at Westmead where a person she says is the best does it. There is also an issue about my growth, I have not grown in the last six months and my weight has not increased it has been decreasing.
The appointment I had been so excited about all day was my review with my Radiation Doctor, if you have read my book, I described him as an extremely friendly, caring doctor who talked to me about what was happening, I referred to him as being like Santa Claus. As I was waiting to see him, members of the Coogee Team who had been by my side throughout my radiotherapy treatment came and saw me, they said that I still had the most beautiful smile and said it always lit up the room. I felt quite teary seeing them but it was tears of joy because they had been special to me. Finally the moment I had eagerly anticipated occurred, my doctor came into the examination room with the warmest smile, he came straight to me and gave me an enormous, comforting hug. Then he spoke to me about what had been happening over the past ten months since I have last seen him. He told me that my fatigue was a result of the radiation and that it could continue for an extended period of time, he apologised that my hair had come back so patchy and said it does not always happen but unfortunately it had to me, another less common side effect, he even held out his hand and told me I could hit him, but I chose not to and told him I'd prefer to blame it on the chemotherapy because I detested having it. He told me that there is no large tumour mass in my cerebellum however the metastatic tumour remains, reduced in size from what I had originally presented with but it appears stable at the present time. There are some other enhancements in the brain but their significance is unknown that this stage. He mentioned the areas on my spine and thought the Neurosurgeon should look at those areas as a precaution. The hormone and growth problems are also side effects from the radiation, it seems that chemotherapy has more side effects while you are on it but it is the radiation that has the later and often more devastating effects. At the end of my appointment I was given another humongous hug and kiss and he told me to keep fighting hard, he also said he wanted to see me again in six months time. When I see my Radiation doctor he gives me more confidence and hope and I can visualise that rainbow when I am around him.
My day had been busy, exhausting and I had received the upsetting news from the Endocrinologist, more medication and procedures to endure. My mood turned to excitement again though because we were having dinner with Tess, Gavin, Paul and Carlos, the extraordinary people who made my dream of my book become a reality. We went to the Spanish Fly at the Spot. It is a tapas restaurant so you order numerous dishes and share. Some of the dishes did not appeal to me, but looked delicious but I did have some John Dory in a parmasen cheese batter, Beetroot Dip with mini toast bread and stuffed zucchini flower, I ended my dinner with the perfect dessert, profiteroles and they were scrumptious. Being away from the hospital and all the tests and poking and prodding was marvellous and the company was fantastic, I had some difficulties hearing as the venue was quite noisy, so I had a lot of feed back in my hearing aid but just been with these special people lifted my spirits immensely. I came home tired but contented until my food went through me, which seems to happen if I have just slightly richer food. It was so funny because Tess and Gavin were fighting over me to give me hugs, which I truly needed that night so I felt very spoilt.
It rained overnight and the Sydney skies this morning were grey and seemed to threaten to open up and let the rain fall again however blue skies took over and the sun shone on our last full day in Sydney. I had my Neuropsychology Review this morning and whilst we were waiting we received a call to say my Oncologist wanted to see me in the afternoon to let me know what was happening. My neurosphychologist is a really gentle and caring person, we discussed school and home life what I feel I am achieving and areas of concern I have. After she took notes on all that Mum and I told her, she said we could have a break, go for a hot chocolate and come back because she wanted to run a few tests on me. First of all I had to cross off all the number threes on a double page that had other numbers and letters, on a sheet of paper there was a start and finish point, I had to draw a line between numbers, it was like dot to dot but done differently, after the numbers I was given the alphabet to do, the next one was numbers representing letters like 1-a, 2-b, 3-c and they had to be completed like a dot to dot also, then I had to trace a dotted line and when you got to the circle I had to go through it and I was relieved that it could be a little wonky because my right hand is not the best at tracing, next I had to write my name and address and then I did one that was like a crack the code but using numbers and symbols, then I was given a letter and I had to come up with a word but it could not be a name or place, my final task was to come up with a list of boys names and then animal names, it was fatiguing but I felt I did reasonably well. When she was pushing me back into the waiting room, I was surprised and delighted to see Gavin sitting beside Mum in the waiting room with a huge smile on his face. He had been at the hospital attending an appointment and wanted to catch up with me one last time and give me one last splendiferous hug.
He walked us down to my physiotherapy appointment which was next on my list for today and sneaked in one last hug. If it had not been for him and Tess I think Mum and I would have gone crazy this week, it has been such a difficult and exhausting week for both of us. I was a little worried about physiotherapy because my ankle was still painful and to weight bear was excruciating. However my physiotherapist used the ultrasound on it to try to relieve it, she felt it was an ankle sprain with soft tissue damage. She also measured my muscles and discovered as she suspected that there was more wastage in my right leg than my left and now with this injury there will probably be some more damage. She has set me a goal of trying to weight bear on my good days as much as possible. I know that with my rollator that Rhiannon has organised, that should be arriving next week, it will make a world of difference for my mobility.
From physiotherapy to visit my Oncologist who expressed his concern again that he felt I had deteriorated in the last six months and they want to see me now every month. I was also told to not take the tablets that were given to me by the pain clinic any longer as they are concerned that I could have severe side effects from them because of my hormone issues. So I am now back to square one with my pain relief, I have to take panadol four times a day, use heat and dencorub to try to relieve pain that occurs. They are going to have a team meeting next week and try to work out where to go from now.
After my appointment, Mum and I decided to have some time to ourselves and go to East Gardens to look around the shops and get away from the hospital. Been distracted by the shops helped me to not think about having to come back again so soon. Can you believe this, when we were walking through Myer, they were unpacking Christmas decorations!
My time here has brought new questions, some good news, so bad news, my concern is not about a return of my cerebellum tumour now, it is of what on earth is going on with my body and how and if it can be fixed, the doctors seem a little perplexed by it so that worries me.
'Life is so full of twists and turns, but I am always keeping my sights on that rainbow'
Wednesday, September 8, 2010
BLOODS, SOCIAL WORKER, LUMBAR PUNCTURE, DIETICIAN AND NEUROLOGIST
8th September 2010
On a day that I thought I could catch my breath and rest because of my lumbar puncture I soon discovered that many more appointments had been arranged for me. It all started when I went to be signed into the ward for my lumbar puncture and was told that I had to go to SEALS to have bloods taken for Endocrine. They had to take three vials, a small one, a slightly larger one and then a really large one that seemed to take forever to fill with my blood.
We returned to the Ward where all my observations were taken, I was surprised when my blood pressure was 93/58 it is normally lower than that, my temperature was fine and then the nurses were asked to get my blood sugar levels with a finger prick, the first reading was 2.3 which they said was low and then it was 3.2 which was a little better. They were planning on putting me on some fluids after my lumbar puncture to try to bring the levels back up.
I then had a visit from my Social Worker and she had brought a doctor with her who was part of her team, they asked me how I was feeling, talked about how I was going, if I had any concerns and what makes me happy and sad. Sometimes I feel like people don't think I try hard enough but every single day, I am determined, push through pain and always want to do everything I can to help others constantly. I try to smile even though I am suffering in pain or feeling ill that is what is important because even though I have been given this journey I am determined to have a good outcome. Some days I do feel sad, I miss what my life used to be like, I wish I could do everything I used to be able to do, I often set myself really difficult goals because I am so determined, my greatest wish is that others don't have to suffer the way I have from my tumour, the surgery and treatment, there has to be a better treatment with less side effects and a cure for everyone.
The anesthetist came to visit and asked the usual questions, like have I ever had a reaction from the anesthetic, when I last ate, whether I liked having gas or just a canula put in and how I usually come out of an anesthetic. I found out that I was the first person into the theatre which would be at 2pm. The time came and I was rolled into theatre with Mum beside me as usual and Theodore lying in the bed beside me, not even Mum can stay with during the procedure but Theodore can. The anesthetist put some strawberry lip smacker on the mask to try to make the smell nicer, normally it smells like really odorous shoes or socks, the scent of the lip smacker disappeared rapidly and the smelly shoes smell then took over. When I woke up in recovery I smiled at the nurse as usual, that is how I recover from an anesthetic. One of the theatre nurses told Mum that I was even smiling during the procedures. I had some slight pain following the lumbar puncture but I lay still in the bed and hoped that it would improve, which it did. To my surprise I did not have to have extra fluids as was first thought because of my blood sugar levels, in my serum blood tests ithe reading had been 4.6 and that is fine.
While I was waiting to be able to go home I had a visit from the dietician and she has recommended that I put a powder called Polyjoule in my drinks as it is a source of energy that builds up the body, apparently many athletes use it to assist with there performance. She also wants me to add more fats into my diet which will make me put on weight.
Then my neurologist came to visit me and she did her normal testing on me she is happy with me but was hoping for more progress, so she wants to do a test on me to check the extent of my neuropathy apparently it is a little like the EEG one. Speaking of EEG, the results were normal, what fantastic news to hear, she does not know why I have had the seizures, or even if they are seizures but she does not know what else they could be. I had to stand and with her help try to take some steps but because of my ankle injury I could not walk at all.
The Endocrine team were supposed to see me but could not make it so I am seeing them tomorrow on C2 North at 2pm, I also have my radiation review tomorrow, so it has also become another busy day for me. I was then discharged from hospital my blood pressure on discharge was back to quite low at 79/53. I am feeling quite fatigued obviously some of that would be from the anesthetic but this has certainly been an extremely demanding trip to Sydney.
'Determination is the key to overcoming the obstacles that block our path in our journey of life'
On a day that I thought I could catch my breath and rest because of my lumbar puncture I soon discovered that many more appointments had been arranged for me. It all started when I went to be signed into the ward for my lumbar puncture and was told that I had to go to SEALS to have bloods taken for Endocrine. They had to take three vials, a small one, a slightly larger one and then a really large one that seemed to take forever to fill with my blood.
We returned to the Ward where all my observations were taken, I was surprised when my blood pressure was 93/58 it is normally lower than that, my temperature was fine and then the nurses were asked to get my blood sugar levels with a finger prick, the first reading was 2.3 which they said was low and then it was 3.2 which was a little better. They were planning on putting me on some fluids after my lumbar puncture to try to bring the levels back up.
I then had a visit from my Social Worker and she had brought a doctor with her who was part of her team, they asked me how I was feeling, talked about how I was going, if I had any concerns and what makes me happy and sad. Sometimes I feel like people don't think I try hard enough but every single day, I am determined, push through pain and always want to do everything I can to help others constantly. I try to smile even though I am suffering in pain or feeling ill that is what is important because even though I have been given this journey I am determined to have a good outcome. Some days I do feel sad, I miss what my life used to be like, I wish I could do everything I used to be able to do, I often set myself really difficult goals because I am so determined, my greatest wish is that others don't have to suffer the way I have from my tumour, the surgery and treatment, there has to be a better treatment with less side effects and a cure for everyone.
The anesthetist came to visit and asked the usual questions, like have I ever had a reaction from the anesthetic, when I last ate, whether I liked having gas or just a canula put in and how I usually come out of an anesthetic. I found out that I was the first person into the theatre which would be at 2pm. The time came and I was rolled into theatre with Mum beside me as usual and Theodore lying in the bed beside me, not even Mum can stay with during the procedure but Theodore can. The anesthetist put some strawberry lip smacker on the mask to try to make the smell nicer, normally it smells like really odorous shoes or socks, the scent of the lip smacker disappeared rapidly and the smelly shoes smell then took over. When I woke up in recovery I smiled at the nurse as usual, that is how I recover from an anesthetic. One of the theatre nurses told Mum that I was even smiling during the procedures. I had some slight pain following the lumbar puncture but I lay still in the bed and hoped that it would improve, which it did. To my surprise I did not have to have extra fluids as was first thought because of my blood sugar levels, in my serum blood tests ithe reading had been 4.6 and that is fine.
While I was waiting to be able to go home I had a visit from the dietician and she has recommended that I put a powder called Polyjoule in my drinks as it is a source of energy that builds up the body, apparently many athletes use it to assist with there performance. She also wants me to add more fats into my diet which will make me put on weight.
Then my neurologist came to visit me and she did her normal testing on me she is happy with me but was hoping for more progress, so she wants to do a test on me to check the extent of my neuropathy apparently it is a little like the EEG one. Speaking of EEG, the results were normal, what fantastic news to hear, she does not know why I have had the seizures, or even if they are seizures but she does not know what else they could be. I had to stand and with her help try to take some steps but because of my ankle injury I could not walk at all.
The Endocrine team were supposed to see me but could not make it so I am seeing them tomorrow on C2 North at 2pm, I also have my radiation review tomorrow, so it has also become another busy day for me. I was then discharged from hospital my blood pressure on discharge was back to quite low at 79/53. I am feeling quite fatigued obviously some of that would be from the anesthetic but this has certainly been an extremely demanding trip to Sydney.
'Determination is the key to overcoming the obstacles that block our path in our journey of life'
Tuesday, September 7, 2010
ONCOLOGY CLINIC, PHYSIO REVIEW, PAIN CLINIC, OT REVIEW AND MRI
7th September 2010
Last night a cool change passed through Sydney, when I woke throughout the night I actually felt rather chilly, in Canberra I have the comfort of my electric blanket and heating but here there was only an extra blanket we could throw on the bed.
Thick clouds filled the grey morning skies in Sydney however the sun kept attempting to peep through those fast moving clouds and eventually won its way and shone throughout the day, but a Southerly wind kept the temperatures down and you required a jumper when you ventured out.
Today can only be described as hectic, my day began before 10.00 and did not finish until 5.45pm with virtually no time even for a toilet break let alone food or drink. My first appointment was Oncology Clinic, firstly I was weighed and measured, my weight was 28.15kg and my height was 147.5cm which is below average for my age. We then waited in the waiting room until we were called in by the Oncologists Registrar, who asked me what had been happening over the past three months. I told her about my pain, my knee problems, my seizures, my hearing aid, feeling fatigued at school, about getting a rollator soon to help my mobility and generally how I was feeling. She took my blood pressure and it was normal for me which is low and then she checked my pulse which she said was a little low. Then my Oncologist came in and discussed some things and told me he wants to see me again in a months time because he was concerned that my health had gone backwards in the last six months.
My next appointment was a Physiotherapy review, she asked me lots of questions and checked the range of my left and right leg, my left certainly has full range however my right one does not and she noted that there is far more muscle wastage. I told her all about my rollator, she was extremely excited that Rhiannon had organised it and felt it would be a definite move forwards in my rehabilitation. She got one of the rollators that they have in Physiotherapy, it was not like the one that I am getting, it only had two small wheels on the front and then just like chair legs on the back but I was able to use it. My steps were not like normal walking but by using it I was more mobile than being in my wheelchair, I did find however that my knee and ankle became quite painful and I had to have rests. She then got me between the walking bars and I did some forward and backwards steps with assistance. She decided that she wanted me to try a step and we told her I had not done that as it was too difficult but she felt confident that I would be able to do it. I stepped over with my left leg first but coming back stepping down on my right, my right leg gave way, I fell and injured my right ankle, it swelled up and I had to have ice on it and then a tubular bandage, it appears that I have done some tissue damage to it. It is extremely painful still tonight and swollen, this is a little backwards step but hopefully it will not hinder my progress to severely.
To my delight though she had organised for the Doctor and CNC Nurse from the Pain Clinic to see me whilst I was with her. They asked me questions, asked Mum questions, examined me and then told me that the pain I am experiencing is muscular but originated from nerve damage caused by the Chemotherapy, the Vincristine I was on, can sometimes cause nerve damage. Now because my muscles are so weak it is likely that I will have injuries as I try to become a little mobile and these will set me back but with medication that will be long term I should be able to over time get some relief from the pain that I am experiencing so frequently. The medication I have been put on is called Gabepentin, it is used in the treatment of neuropathic pain which is a severe type of pain caused by damage to the nerves. I initially have to take one tablet at night for three days, then one morning and night or three days and then one tablet three times daily for at least six months but it could most likely be for longer. There are quite a few mild side effects as well as some serious side effects and I have to watch for them as it could mean these capsules are not suitable for me, hopefully with my history of having rare side effects to medication that this does not occur on this medication. I have also being put on another tablet called Allegron, which is a relaxant, both of these medications can make you extremely drowsy, so they are hoping that it will allow me to get some much deserved and needed sleep, which in turn will help my body repair itself. However the medication takes a while before it kicks in about six to eight weeks so in the meantime I have to take Panadol four times a day, not just when I have pain. Lucky that this appointment was organised for me as if I had to wait until our next visit to Sydney then I would not have had any sort of relief until next year.
After a quick drink and toilet break it was then off to my Occupational Therapy Review, I was expecting to have to undergo more testing which I really was not feeling up to as I was exhausted already and in dreadful pain with my ankle. When my Occupational Therapist came out she told me we were doing something very special - cooking, that's right we were making Chocolate Chip Chunky Cookies. I love cooking and this was a wonderful surprise and certainly beat been tested. I cracked the egg, worked out the amount of butter required, stirred the mixture and then had to use my hands to combine it. I then made the cookies and put them on the tray, they were then placed in the oven to cook but I did not get to see the finished product because I had to go for my MRI appointment, my Occupational Therapist told me she would leave a packet of them at Reception for me to collect tomorrow. While I was cooking she was asking Mum and I some questions and taking notes, mostly about my school hours and what I do.
We made our way from Occupational Therapy to the MRI, I was actually looking forward to lying on the bed, closing my eyes and resting, it had been such a full on day and it had definitely taken a huge toll on me. The nurse put the canula in and she used one that they use for babies because my arm is so tiny. The earplugs were placed in my ears, the head surround clamped in and a warm blanket placed on top of me. Theodore was there with and so was Mum who had to wear ear plugs also. I had to take out my earrings which felt really strange because I have not had them out that long since having them pierced in June. The door closed and the MRI commenced, my eyes closed and stay closed, my body was as still as a statue, my ankle throbbed but at least I was resting it. They came to put the Gadolinium, which is the contrast through the canula, I thought it must have been nearly finished because usually that is put in in the last fifteen minutes of the scan but this time they put it in half way through. It was all over after an hour and a half, the canula was removed and we went to the reception area to wait for our Disk copy of the scan, however they had problems with it, so we have to collect it tomorrow morning before I am admitted to hospital for my Lumbar Puncture.
Tomorrow will be a long day, not with lots of appointments but just waiting around in hospital for the Lumbar Puncture. My Neurologist is going to visit me on the ward and go over my EEG results and do her examination of me, at least that will use up some of the time. I am so exhausted tonight and I am hoping that I will be able to sleep, even though I am not concerned about my Lumbar Puncture, I still get a little nervous.
Last night a cool change passed through Sydney, when I woke throughout the night I actually felt rather chilly, in Canberra I have the comfort of my electric blanket and heating but here there was only an extra blanket we could throw on the bed.
Thick clouds filled the grey morning skies in Sydney however the sun kept attempting to peep through those fast moving clouds and eventually won its way and shone throughout the day, but a Southerly wind kept the temperatures down and you required a jumper when you ventured out.
Today can only be described as hectic, my day began before 10.00 and did not finish until 5.45pm with virtually no time even for a toilet break let alone food or drink. My first appointment was Oncology Clinic, firstly I was weighed and measured, my weight was 28.15kg and my height was 147.5cm which is below average for my age. We then waited in the waiting room until we were called in by the Oncologists Registrar, who asked me what had been happening over the past three months. I told her about my pain, my knee problems, my seizures, my hearing aid, feeling fatigued at school, about getting a rollator soon to help my mobility and generally how I was feeling. She took my blood pressure and it was normal for me which is low and then she checked my pulse which she said was a little low. Then my Oncologist came in and discussed some things and told me he wants to see me again in a months time because he was concerned that my health had gone backwards in the last six months.
My next appointment was a Physiotherapy review, she asked me lots of questions and checked the range of my left and right leg, my left certainly has full range however my right one does not and she noted that there is far more muscle wastage. I told her all about my rollator, she was extremely excited that Rhiannon had organised it and felt it would be a definite move forwards in my rehabilitation. She got one of the rollators that they have in Physiotherapy, it was not like the one that I am getting, it only had two small wheels on the front and then just like chair legs on the back but I was able to use it. My steps were not like normal walking but by using it I was more mobile than being in my wheelchair, I did find however that my knee and ankle became quite painful and I had to have rests. She then got me between the walking bars and I did some forward and backwards steps with assistance. She decided that she wanted me to try a step and we told her I had not done that as it was too difficult but she felt confident that I would be able to do it. I stepped over with my left leg first but coming back stepping down on my right, my right leg gave way, I fell and injured my right ankle, it swelled up and I had to have ice on it and then a tubular bandage, it appears that I have done some tissue damage to it. It is extremely painful still tonight and swollen, this is a little backwards step but hopefully it will not hinder my progress to severely.
To my delight though she had organised for the Doctor and CNC Nurse from the Pain Clinic to see me whilst I was with her. They asked me questions, asked Mum questions, examined me and then told me that the pain I am experiencing is muscular but originated from nerve damage caused by the Chemotherapy, the Vincristine I was on, can sometimes cause nerve damage. Now because my muscles are so weak it is likely that I will have injuries as I try to become a little mobile and these will set me back but with medication that will be long term I should be able to over time get some relief from the pain that I am experiencing so frequently. The medication I have been put on is called Gabepentin, it is used in the treatment of neuropathic pain which is a severe type of pain caused by damage to the nerves. I initially have to take one tablet at night for three days, then one morning and night or three days and then one tablet three times daily for at least six months but it could most likely be for longer. There are quite a few mild side effects as well as some serious side effects and I have to watch for them as it could mean these capsules are not suitable for me, hopefully with my history of having rare side effects to medication that this does not occur on this medication. I have also being put on another tablet called Allegron, which is a relaxant, both of these medications can make you extremely drowsy, so they are hoping that it will allow me to get some much deserved and needed sleep, which in turn will help my body repair itself. However the medication takes a while before it kicks in about six to eight weeks so in the meantime I have to take Panadol four times a day, not just when I have pain. Lucky that this appointment was organised for me as if I had to wait until our next visit to Sydney then I would not have had any sort of relief until next year.
After a quick drink and toilet break it was then off to my Occupational Therapy Review, I was expecting to have to undergo more testing which I really was not feeling up to as I was exhausted already and in dreadful pain with my ankle. When my Occupational Therapist came out she told me we were doing something very special - cooking, that's right we were making Chocolate Chip Chunky Cookies. I love cooking and this was a wonderful surprise and certainly beat been tested. I cracked the egg, worked out the amount of butter required, stirred the mixture and then had to use my hands to combine it. I then made the cookies and put them on the tray, they were then placed in the oven to cook but I did not get to see the finished product because I had to go for my MRI appointment, my Occupational Therapist told me she would leave a packet of them at Reception for me to collect tomorrow. While I was cooking she was asking Mum and I some questions and taking notes, mostly about my school hours and what I do.
We made our way from Occupational Therapy to the MRI, I was actually looking forward to lying on the bed, closing my eyes and resting, it had been such a full on day and it had definitely taken a huge toll on me. The nurse put the canula in and she used one that they use for babies because my arm is so tiny. The earplugs were placed in my ears, the head surround clamped in and a warm blanket placed on top of me. Theodore was there with and so was Mum who had to wear ear plugs also. I had to take out my earrings which felt really strange because I have not had them out that long since having them pierced in June. The door closed and the MRI commenced, my eyes closed and stay closed, my body was as still as a statue, my ankle throbbed but at least I was resting it. They came to put the Gadolinium, which is the contrast through the canula, I thought it must have been nearly finished because usually that is put in in the last fifteen minutes of the scan but this time they put it in half way through. It was all over after an hour and a half, the canula was removed and we went to the reception area to wait for our Disk copy of the scan, however they had problems with it, so we have to collect it tomorrow morning before I am admitted to hospital for my Lumbar Puncture.
Tomorrow will be a long day, not with lots of appointments but just waiting around in hospital for the Lumbar Puncture. My Neurologist is going to visit me on the ward and go over my EEG results and do her examination of me, at least that will use up some of the time. I am so exhausted tonight and I am hoping that I will be able to sleep, even though I am not concerned about my Lumbar Puncture, I still get a little nervous.
Monday, September 6, 2010
SYDNEY, EEG AND SPEECH PATHOLOGY REVIEW
5th and 6th September 2010
Canberra was damp and dreary with blustery winds, not the day you would wish for, for all the Dad's on Father's Day, we gave Dad breakfast in bed and had given him his presents on Saturday, he loved them, he even had a play with his blower/vacuum in the house!
I had butterflies in my stomach and felt horrendously ill as I said a tearful goodbye to Nalani, Jarrett and Tinkerbelle, I hate having to leave home to go to Sydney for all my tests, I wish they could be done in Canberra where I feel safe and everything is familiar. Sleet began to fall as we left Canberra, as we drove past Lake George I could not believe the abundance of water or the lushness of the surrounding grass areas. We stopped at Marulan for a break and a drink, it was icy cold and the winds howled outside, we heard on the radio that in Sydney wind gusts of up to 80km an hour were expected in the afternoon. As we neared Sydney, I noticed on the car outside temperature reading that it said it was 23 degrees, that was unbelievable but when we arrived at our destination I could feel the warmth and delighted at the clear blue skies that greeted us. The room we were allocated was Room 13, I am hoping that it will be a lucky number for us, as often '13' is associated with bad luck. I cried when Dad left to drive back home, but Mum was there comforting me as always. We unpacked, went for a walk, or were blown along as the winds had picked up dramatically in the afternoon, played my card game Happily Ever After and then Mum read my Tinkerbell book to me. Even though the bed at our accommodation was extremely comfortable I did not sleep well, my nerves had kicked in again and I found myself in dreadful pain, once again I had lost the use of my right arm and had absolutely no strength in my hand.
Traffic starts early in Sydney and I was woken before six to the blaring noise of a car honking, it is such a busy City, I love the quietness and tranquility of Canberra. The sun was shinning however there was a breeze that had a slight chill in it as we went for a walk to help my nerves before my EEG. An EEG which is short for electroencephalography is a recording of the spontaneous electrical impulses of the brain and they are used to investigate the causes of seizures or blackouts to diagnose epilepsy and to evaluate a variety of other conditions. It is different to MRI's or CT Scans that look at the structure of the brain, an EEG looks at the electrical activity of the brain. I was firstly placed in a reclining chair with my head elevated on a neck roll. Twenty one electrodes were placed onto my scalp using a paste which was gritty and white, the electrodes had to make good electrical contact because this helps to make a good quality recording, the leads of the electrodes were an array of rainbow colours. During the EEG I was asked to breathe quickly for three minutes, this is called hyperventilation, it was the most difficult part of the test and it made my hands and feet go numb and I felt a little dizzy, the examiner said that this meant that I had hyperventilated well. In the last part of the test a strobe light was placed in front of my eyes, it flashed in different frequencies, this is called photic stimulation, during this part of the test I was asked to open and close my eyes at various times. The whole test took twenty minutes and most of the time I had my eyes closed and could only open them when I was asked to, they also had relaxation music playing in the background to help you relax. At the end of the test all the electrodes had to be removed and then I was wiped over, however there was sticky residue left from the paste and I had to go straight home and have a shower and wash my hair. I was thinking that I was fortunate not to have my long, curly hair anymore because that would have been become ultra sticky from the paste. The test did not hurt at all, I did have some tingling and dizziness still afterwards from the hyperventilation part of the test but that eventually disappeared. My neurologist will receive the results from it and then she will be able to discuss those results with me, however we still do not have a definite appointment with her as yet, hopefully at Oncology Clinic tomorrow we will have a day and time for that.
In the afternoon I had my Speech Pathology Review, I was expecting for her to just ask a few questions about how I am going and offer some advice, so you can imagine how surprised I was to find out that I had to do the CELF-4 test, which is a speech and language test used by Speech Pathologists. I had to look at pictures, listen to instructions and then point to the pictures that had been given in the instructions, the more instructions there were the more difficult it became, the next one was to repeat sentences which became longer and longer, then I had to listen to three different stories and answer questions about them, by now I was feeling exhausted but the test went on, I had to look at a picture, I was given a word and had to make up a sentence using that word that suited the picture, the next task was to listen to four words and then I had to pick the two words that fitted together and say why they did, another test was I was given a word which was put in a sentence and then I had to give a meaning for that word, finally after one and a half hours of testing, I had only one more task to do and that was to look at pictures, I had to identify what a certain picture was and then say what group it was part of. By the end of the testing my head felt scrambled and I could not think straight. I will receive my results over the telephone on Monday 13th September, I know that I had some real difficulties in certain areas but also felt there were areas I did extremely well in, but I will have to wait and see what the actual results were.
We left the Speech Pathology Review and met Tess, we gave each other an enormous hug, after such strenuous testing a hug was the best medicine I could have had all day. Tess had brought me a beautiful bunch of flowers to brighten our room, some Lindt Chocolate and pink earrings. We went for a walk, had a hot chocolate and caught up with each others news, as we chatted the time flew by and we found the coffee shop began to pack up and clean up around us, just like when we had afternoon tea with Tass and Gloria, we giggled about it. I enjoyed being with Tess, she always manages to lift my spirits, she is a very special person. When we were with Tess a girl approached me and was talking to me, she was the cousin of a young boy that was in hospital when I was, he had been there since he was born, he left hospital at the end of last year after being there for three years, she told me he is really well, it was so wonderful to hear that news, people often touch your life during your journey and you don't always know what became of them, I have often thought about him and knowing how he is is fantastic.
I am feeling very anxious about tomorrow, my stomach is churning, I have a headache but that could be from the EEG, that is a possible side effect but it will disappear and my heart is beating rapidly. Tomorrow I have my Oncology Clinic, Physiotherapy Review, Occupational Therapy Review and my MRI, our Social Worker is also going to catch up with me at Clinic also.
Jarrett has his first lung function test tomorrow, I hope that everything goes well for him because I want him to keep running as well as he did, the way he runs inspires me and I love cheering him on when he runs.
'Life brings us many surprises, we accept the good ones with open arms, however often want to turn away from the bad ones, we should embrace the bad ones and grow from the experience'
Canberra was damp and dreary with blustery winds, not the day you would wish for, for all the Dad's on Father's Day, we gave Dad breakfast in bed and had given him his presents on Saturday, he loved them, he even had a play with his blower/vacuum in the house!
I had butterflies in my stomach and felt horrendously ill as I said a tearful goodbye to Nalani, Jarrett and Tinkerbelle, I hate having to leave home to go to Sydney for all my tests, I wish they could be done in Canberra where I feel safe and everything is familiar. Sleet began to fall as we left Canberra, as we drove past Lake George I could not believe the abundance of water or the lushness of the surrounding grass areas. We stopped at Marulan for a break and a drink, it was icy cold and the winds howled outside, we heard on the radio that in Sydney wind gusts of up to 80km an hour were expected in the afternoon. As we neared Sydney, I noticed on the car outside temperature reading that it said it was 23 degrees, that was unbelievable but when we arrived at our destination I could feel the warmth and delighted at the clear blue skies that greeted us. The room we were allocated was Room 13, I am hoping that it will be a lucky number for us, as often '13' is associated with bad luck. I cried when Dad left to drive back home, but Mum was there comforting me as always. We unpacked, went for a walk, or were blown along as the winds had picked up dramatically in the afternoon, played my card game Happily Ever After and then Mum read my Tinkerbell book to me. Even though the bed at our accommodation was extremely comfortable I did not sleep well, my nerves had kicked in again and I found myself in dreadful pain, once again I had lost the use of my right arm and had absolutely no strength in my hand.
Traffic starts early in Sydney and I was woken before six to the blaring noise of a car honking, it is such a busy City, I love the quietness and tranquility of Canberra. The sun was shinning however there was a breeze that had a slight chill in it as we went for a walk to help my nerves before my EEG. An EEG which is short for electroencephalography is a recording of the spontaneous electrical impulses of the brain and they are used to investigate the causes of seizures or blackouts to diagnose epilepsy and to evaluate a variety of other conditions. It is different to MRI's or CT Scans that look at the structure of the brain, an EEG looks at the electrical activity of the brain. I was firstly placed in a reclining chair with my head elevated on a neck roll. Twenty one electrodes were placed onto my scalp using a paste which was gritty and white, the electrodes had to make good electrical contact because this helps to make a good quality recording, the leads of the electrodes were an array of rainbow colours. During the EEG I was asked to breathe quickly for three minutes, this is called hyperventilation, it was the most difficult part of the test and it made my hands and feet go numb and I felt a little dizzy, the examiner said that this meant that I had hyperventilated well. In the last part of the test a strobe light was placed in front of my eyes, it flashed in different frequencies, this is called photic stimulation, during this part of the test I was asked to open and close my eyes at various times. The whole test took twenty minutes and most of the time I had my eyes closed and could only open them when I was asked to, they also had relaxation music playing in the background to help you relax. At the end of the test all the electrodes had to be removed and then I was wiped over, however there was sticky residue left from the paste and I had to go straight home and have a shower and wash my hair. I was thinking that I was fortunate not to have my long, curly hair anymore because that would have been become ultra sticky from the paste. The test did not hurt at all, I did have some tingling and dizziness still afterwards from the hyperventilation part of the test but that eventually disappeared. My neurologist will receive the results from it and then she will be able to discuss those results with me, however we still do not have a definite appointment with her as yet, hopefully at Oncology Clinic tomorrow we will have a day and time for that.
In the afternoon I had my Speech Pathology Review, I was expecting for her to just ask a few questions about how I am going and offer some advice, so you can imagine how surprised I was to find out that I had to do the CELF-4 test, which is a speech and language test used by Speech Pathologists. I had to look at pictures, listen to instructions and then point to the pictures that had been given in the instructions, the more instructions there were the more difficult it became, the next one was to repeat sentences which became longer and longer, then I had to listen to three different stories and answer questions about them, by now I was feeling exhausted but the test went on, I had to look at a picture, I was given a word and had to make up a sentence using that word that suited the picture, the next task was to listen to four words and then I had to pick the two words that fitted together and say why they did, another test was I was given a word which was put in a sentence and then I had to give a meaning for that word, finally after one and a half hours of testing, I had only one more task to do and that was to look at pictures, I had to identify what a certain picture was and then say what group it was part of. By the end of the testing my head felt scrambled and I could not think straight. I will receive my results over the telephone on Monday 13th September, I know that I had some real difficulties in certain areas but also felt there were areas I did extremely well in, but I will have to wait and see what the actual results were.
We left the Speech Pathology Review and met Tess, we gave each other an enormous hug, after such strenuous testing a hug was the best medicine I could have had all day. Tess had brought me a beautiful bunch of flowers to brighten our room, some Lindt Chocolate and pink earrings. We went for a walk, had a hot chocolate and caught up with each others news, as we chatted the time flew by and we found the coffee shop began to pack up and clean up around us, just like when we had afternoon tea with Tass and Gloria, we giggled about it. I enjoyed being with Tess, she always manages to lift my spirits, she is a very special person. When we were with Tess a girl approached me and was talking to me, she was the cousin of a young boy that was in hospital when I was, he had been there since he was born, he left hospital at the end of last year after being there for three years, she told me he is really well, it was so wonderful to hear that news, people often touch your life during your journey and you don't always know what became of them, I have often thought about him and knowing how he is is fantastic.
I am feeling very anxious about tomorrow, my stomach is churning, I have a headache but that could be from the EEG, that is a possible side effect but it will disappear and my heart is beating rapidly. Tomorrow I have my Oncology Clinic, Physiotherapy Review, Occupational Therapy Review and my MRI, our Social Worker is also going to catch up with me at Clinic also.
Jarrett has his first lung function test tomorrow, I hope that everything goes well for him because I want him to keep running as well as he did, the way he runs inspires me and I love cheering him on when he runs.
'Life brings us many surprises, we accept the good ones with open arms, however often want to turn away from the bad ones, we should embrace the bad ones and grow from the experience'
Saturday, September 4, 2010
ATHLETICS CARNIVAL
3rd and 4th September 2010
Early in the week we had a glimpse of the promise of Spring however on the day of our Athletics Carnival the weather took a dramatic turn for the worse. Heavy, thick grey clouds filled the sky and they were pushed rapidly along by gusty, winds that felt like they had come straight from the snow covered mountains of Thredbo.
This was not the sort of day that was expected, but the Carnival went ahead despite the Wintry conditions. I went to school in the morning because the first event was the 1500m and I wanted to watch Jarrett run, he is the current record holder for that event. He was a little nervous but feeling confident and thought being on his new asthma medication that he would have a terrific run. The race began and Jarrett had a fantastic start leading the field through the first lap, he was running strongly and looked to be on pace to smash the record, however during the third lap my heart leaped as I saw him slow his pace and as he came past the finish line for his next lap I could see he was having asthma difficulties again. He pushed on but had slowed down dramatically, a boy in Year 12 was gaining slightly on him and into the final lap they were virtually equal however Jarrett had found some extra energy and surged but as he did so, his asthma took hold again and in the last 100m he had to back off once again, letting the Year 12 boy overtake him to win narrowly. We raced up to Jarrett and gave him his Ventolin, which worked much more quickly than it had at National Cross Country ,thank goodness. He was disappointed but said he was okay, he went to rest ready for his next event.
Mum and I went back home to put some more layers of clothing on as the weather had deteriorated in just the short period of time we had been there. We stayed at home in the warmth and watched Jarrett run his 100m from the lounge room window , we could not tell where he came because it was a close race, when we saw him when we went back for his 800m, he told us he had come 4th which is good for him, he is not a sprinter. It was time for my javelin event, I was over competing in Javelin when Jarrett began to run, in the 800m he absolutely blitzed the field, he actually lapped the entire field who were just finishing their first lap when he finished his second. He broke the school record for his age group and was smiling however he said his chest had become tight again in the last 200m of the race. I had two throws of the javelin and felt they had gone further than what they had when I practised in PE, I guess I had an advantage with the wind being lower than everyone else because I was throwing from my wheelchair, so many of the throws were taken by the wind and did not stick in the ground. I did not get a measurement for my javelin because the teacher on that event said they were only measuring the top five throws, we showed him my athlete with a disability classification but he said he did not know what to do about it, Mum said mine should be measured as I am not competing against the other girls in my age group but he decided not to measure.
I went from javelin to shot put, Nalani was assisting on shot put, so I knew that my measurement would be done there. I had three throws and felt I had done rather well, when it was measured I had thrown 2.24m which was a personal best. The wind had become so gusty and it chilled my bones, I was not surprised when the announcer said it was only ten degrees but with the wind chill it must have been only about five. Jarrett ran the 200m just as we were leaving to go back home to warm up again, he came third in a fast, close race and was happy with his effort and was pleased he had not had chest tightness.
As we walked into the house, we could feel the bliss of the warmth, Mum asked if I really wanted to go back to do discus with the weather being so harsh and I told her that I wanted to, so we went back so I could throw the discus. It was organised so that we had all our three throws in one go, each time mine went further and the distance I threw was 4.54m, another personal best. While I was throwing, Jarrett ran in the 400m, he flew around the track and came across the line in less than one minute, again breaking the school record and winning by 200m. His chest had tightened again towards the end, he said he hopes that it happened because the weather was so cold but he has run in the cold before and it has not affected his asthma. He then went on to do javelin, as Mum and I left to go home we watched him throw his last throw, he came 7th and was pleased with his result.
Although the weather had been so dreadfully dismal, I had enjoyed participating in the Carnival and I was so proud of myself, I hope that other people who have any sort of disability can learn from what I am doing, I think there is a saying that goes, 'where there is a will, there is a way', I found a way that I could still compete and even though my throws were no where near what everyone else in my age group had thrown, I had done it, I competed even though I have gone through so much!
I must admit I was elated to come home to the warmth of a hot shower as I was aching, my knee was swollen and my shoulder was throbbing. When Nalani and Jarrett came home we went for a short visit to our friends Rosemary, Luke and Celina, it was Celina's Birthday when we were in Brisbane so we celebrated a little late with her.
I was absolutely exhausted, in pain and starting to feel terribly nervous about my appointments in Sydney which we finally received yesterday afternoon. My schedule is fairly demanding while we are there and they are also talking about admitting me to hospital for the entire time we are there, but Mum explained how we had to book a place to stay and had already paid for it, so now they are talking about me being in hospital during the day and getting night leave to go to the accommodation to sleep. They have said that a few issues have come up from my last tests and they may need to do some extra procedures while I am there. I have to have an EEG on Monday, this measures your brain waves to see if they are normal, you have to have wires attached to your head similar to the ones you have when you have an ECG on your heart. I then have a speech pathology review in the afternoon. Tuesday is full, I have Oncology Clinic, Physiotherapy review, Occupational Therapy review and then my MRI. Wednesday is my Lumbar Puncture, Thursday I have a Radiation Review and Friday I have a Neuropsychology Review. They also are fitting in an Endocrine appointment, Neurology Review, Orthopaedic Specialist Review, Dietician Review and a visit with my Social Worker. Unfortunately, the pain clinic is fully booked and it takes three to four months to get an appointment so I am extremely disappointed that I am not having this appointment as it was the one that would relieve me of some of my pain, now I have to wait until next time, not a terrific prospect when you are suffering in so much pain but perhaps one of the other doctors can prescribed something in the meantime.
I watched the football and was excited to see that the Raiders won and will now most likely be in the top eight, they were so nice when they came to my book launch and when I met them at the Wests Tigers game. I was very disappointed though this morning to find out that the Tigers had lost to the Titans 21-18, Pop is now leading the tips by one but there are more games to go.
We woke this morning to pouring rain, there were substantial puddles in the stones outside and it was cold and miserable, my body is aching all over today, I can hardly move my right knee or hand and when I do the pain shoots through me. I have been teary, I have this really anxious feeling about my appointments in Sydney next week. Jarrett did not have running training this morning as the doctor advised him if he had an asthma attack at the Carnival to have a rest day on Saturday, Jarrett was so disappointed and he moped around the house all morning, running is his life.
Dad had to go to work today because Wagga have moved their Race Meeting to Canberra on Monday and he had to organise staff and other things for it. We went to Magnet Mart to pick up Dad's Father's Day present, we got him a blower/vacuum/mulcher for the yard, he had one that wore out and with all the winds we have been having lately he will be using it regularly and it will make it easier for him than sweeping all the time. When we were there I saw the perfect addition for my fairy garden, it was a wishing well, just a good size for a fairy garden, I will have to save up for it.
I have packed my pink suitcase for Sydney, hoping that I can wear some more Spring type clothes whilst I am there and I watched a Barbie Movie called A Fashion Fairytale. As I am typing this I am feeling really scared about my appointments, I have had some new things happening to me that were not before so I guess it always is in the back of my mind that my tumour could be becoming aggressive again or a new tumour appearing. I should be thinking positive but even when you do there is that little niggling thought in the very back of your mind every time you have something new and strange occur or feel unwell.
I will regularly update my Blog while I am in Sydney and let you know who everything goes whilst I am there. Mum is coming with me, she helps to keep my hopes high, she is the best Mum in the World!!!
Early in the week we had a glimpse of the promise of Spring however on the day of our Athletics Carnival the weather took a dramatic turn for the worse. Heavy, thick grey clouds filled the sky and they were pushed rapidly along by gusty, winds that felt like they had come straight from the snow covered mountains of Thredbo.
This was not the sort of day that was expected, but the Carnival went ahead despite the Wintry conditions. I went to school in the morning because the first event was the 1500m and I wanted to watch Jarrett run, he is the current record holder for that event. He was a little nervous but feeling confident and thought being on his new asthma medication that he would have a terrific run. The race began and Jarrett had a fantastic start leading the field through the first lap, he was running strongly and looked to be on pace to smash the record, however during the third lap my heart leaped as I saw him slow his pace and as he came past the finish line for his next lap I could see he was having asthma difficulties again. He pushed on but had slowed down dramatically, a boy in Year 12 was gaining slightly on him and into the final lap they were virtually equal however Jarrett had found some extra energy and surged but as he did so, his asthma took hold again and in the last 100m he had to back off once again, letting the Year 12 boy overtake him to win narrowly. We raced up to Jarrett and gave him his Ventolin, which worked much more quickly than it had at National Cross Country ,thank goodness. He was disappointed but said he was okay, he went to rest ready for his next event.
Mum and I went back home to put some more layers of clothing on as the weather had deteriorated in just the short period of time we had been there. We stayed at home in the warmth and watched Jarrett run his 100m from the lounge room window , we could not tell where he came because it was a close race, when we saw him when we went back for his 800m, he told us he had come 4th which is good for him, he is not a sprinter. It was time for my javelin event, I was over competing in Javelin when Jarrett began to run, in the 800m he absolutely blitzed the field, he actually lapped the entire field who were just finishing their first lap when he finished his second. He broke the school record for his age group and was smiling however he said his chest had become tight again in the last 200m of the race. I had two throws of the javelin and felt they had gone further than what they had when I practised in PE, I guess I had an advantage with the wind being lower than everyone else because I was throwing from my wheelchair, so many of the throws were taken by the wind and did not stick in the ground. I did not get a measurement for my javelin because the teacher on that event said they were only measuring the top five throws, we showed him my athlete with a disability classification but he said he did not know what to do about it, Mum said mine should be measured as I am not competing against the other girls in my age group but he decided not to measure.
I went from javelin to shot put, Nalani was assisting on shot put, so I knew that my measurement would be done there. I had three throws and felt I had done rather well, when it was measured I had thrown 2.24m which was a personal best. The wind had become so gusty and it chilled my bones, I was not surprised when the announcer said it was only ten degrees but with the wind chill it must have been only about five. Jarrett ran the 200m just as we were leaving to go back home to warm up again, he came third in a fast, close race and was happy with his effort and was pleased he had not had chest tightness.
As we walked into the house, we could feel the bliss of the warmth, Mum asked if I really wanted to go back to do discus with the weather being so harsh and I told her that I wanted to, so we went back so I could throw the discus. It was organised so that we had all our three throws in one go, each time mine went further and the distance I threw was 4.54m, another personal best. While I was throwing, Jarrett ran in the 400m, he flew around the track and came across the line in less than one minute, again breaking the school record and winning by 200m. His chest had tightened again towards the end, he said he hopes that it happened because the weather was so cold but he has run in the cold before and it has not affected his asthma. He then went on to do javelin, as Mum and I left to go home we watched him throw his last throw, he came 7th and was pleased with his result.
Although the weather had been so dreadfully dismal, I had enjoyed participating in the Carnival and I was so proud of myself, I hope that other people who have any sort of disability can learn from what I am doing, I think there is a saying that goes, 'where there is a will, there is a way', I found a way that I could still compete and even though my throws were no where near what everyone else in my age group had thrown, I had done it, I competed even though I have gone through so much!
I must admit I was elated to come home to the warmth of a hot shower as I was aching, my knee was swollen and my shoulder was throbbing. When Nalani and Jarrett came home we went for a short visit to our friends Rosemary, Luke and Celina, it was Celina's Birthday when we were in Brisbane so we celebrated a little late with her.
I was absolutely exhausted, in pain and starting to feel terribly nervous about my appointments in Sydney which we finally received yesterday afternoon. My schedule is fairly demanding while we are there and they are also talking about admitting me to hospital for the entire time we are there, but Mum explained how we had to book a place to stay and had already paid for it, so now they are talking about me being in hospital during the day and getting night leave to go to the accommodation to sleep. They have said that a few issues have come up from my last tests and they may need to do some extra procedures while I am there. I have to have an EEG on Monday, this measures your brain waves to see if they are normal, you have to have wires attached to your head similar to the ones you have when you have an ECG on your heart. I then have a speech pathology review in the afternoon. Tuesday is full, I have Oncology Clinic, Physiotherapy review, Occupational Therapy review and then my MRI. Wednesday is my Lumbar Puncture, Thursday I have a Radiation Review and Friday I have a Neuropsychology Review. They also are fitting in an Endocrine appointment, Neurology Review, Orthopaedic Specialist Review, Dietician Review and a visit with my Social Worker. Unfortunately, the pain clinic is fully booked and it takes three to four months to get an appointment so I am extremely disappointed that I am not having this appointment as it was the one that would relieve me of some of my pain, now I have to wait until next time, not a terrific prospect when you are suffering in so much pain but perhaps one of the other doctors can prescribed something in the meantime.
I watched the football and was excited to see that the Raiders won and will now most likely be in the top eight, they were so nice when they came to my book launch and when I met them at the Wests Tigers game. I was very disappointed though this morning to find out that the Tigers had lost to the Titans 21-18, Pop is now leading the tips by one but there are more games to go.
We woke this morning to pouring rain, there were substantial puddles in the stones outside and it was cold and miserable, my body is aching all over today, I can hardly move my right knee or hand and when I do the pain shoots through me. I have been teary, I have this really anxious feeling about my appointments in Sydney next week. Jarrett did not have running training this morning as the doctor advised him if he had an asthma attack at the Carnival to have a rest day on Saturday, Jarrett was so disappointed and he moped around the house all morning, running is his life.
Dad had to go to work today because Wagga have moved their Race Meeting to Canberra on Monday and he had to organise staff and other things for it. We went to Magnet Mart to pick up Dad's Father's Day present, we got him a blower/vacuum/mulcher for the yard, he had one that wore out and with all the winds we have been having lately he will be using it regularly and it will make it easier for him than sweeping all the time. When we were there I saw the perfect addition for my fairy garden, it was a wishing well, just a good size for a fairy garden, I will have to save up for it.
I have packed my pink suitcase for Sydney, hoping that I can wear some more Spring type clothes whilst I am there and I watched a Barbie Movie called A Fashion Fairytale. As I am typing this I am feeling really scared about my appointments, I have had some new things happening to me that were not before so I guess it always is in the back of my mind that my tumour could be becoming aggressive again or a new tumour appearing. I should be thinking positive but even when you do there is that little niggling thought in the very back of your mind every time you have something new and strange occur or feel unwell.
I will regularly update my Blog while I am in Sydney and let you know who everything goes whilst I am there. Mum is coming with me, she helps to keep my hopes high, she is the best Mum in the World!!!
Thursday, September 2, 2010
SCHOOL AND APPOINTMENTS
1st and 2nd September 2010
On a wildly windy but sunny Wednesday I arrived at school to discover the whole Grade were sitting together listening to the Grade Leader Teacher, this could only mean that Year 7 had had some issues. I was correct, girls wearing makeup, people not speaking considerately to others, boys climbing on walls and an incident involving an aerosol can and matches. The teacher mentioned that as some people get older they think they can do what they like, but we are still young and have school rules to follow.
Then I had French, Mum had to go to a SCAN meeting about me so Chloe looked after me in French. We had some writing to do from the board, I only managed to write two sentences, both my right and left hands were crippled with pain. There were seven sentences in total, so I missed out on getting them down. We then had a sheet to fill in and Chloe and I worked together on it. Mum came back, the meeting had not taken place due to a communication breakdown from the Department of Education. A SCAN meeting determines whether the school is entitled to funding to assist children in the school who have a disability with their education.
Then we happily went to textiles, we had to make a bead using wool which you spread as thinly as you could, basically it had to look like a spiders web, then you soaked it in water and soap, after that you had to rub it vigorously between your hands, like you are rubbing them together to keep them warm. My hands ached so I did some and then Mum did some and our bead turned out fantastic. I then had to turn my wool weaving that I did on the meat tray into a little fragrant cushion. We cut through the wool at the back of the tray, tied it off then stitched one side, I felt so proud when the teacher told me that I had a good sewing technique and she could see I had done sewing before. After sewing one side you put wadding in then I chose Rain forest potpourri and put that in, then put some wadding on top and stitched it together. It looked and smelt magnificent, we have to keep all our sample work in our special bag, so I know that it is going to smell so aromatic next time I have textiles.
We came home at recess, I had enjoyed my day but my energy was depleted so I had to rest, following my rest I played Upwords and then we were having a very inspirational visitor coming, Sarah, I have mentioned her before, she has an incurable brain tumour, she has walked the Kokoda Trail and she is so positive. When she visited we talked about our diagnosis, our treatment, our doctors and the funny antics they have and how some are not very good communicators, we also spoke about the fun run on 6th November that is raising funds for Cure for Life Foundation and raising awareness about Brain Tumours. Sarah is going to push me in my wheelchair and we are both so enthusiastic about it. Sarah's birthday is on the same day as mine also and I found out that she is a Wests Tigers fan too! Having someone to talk to and listen to who is travelling a similar journey has been such a blessing and it is helping me to be more inspired and positive. It has also made me see how important it is to be part of raising awareness about Brain Tumours.
In the afternoon I watched The Princess and the Frog DVD and I fell asleep for about half an hour. When I woke I worked out my footy tips, this is the last week that we are doing it and Pop and I are equal on 99, poor Nana is on 90 so she is unable to win it, I told her that maybe next year she will win. So everything is riding on the results from this week, I know that Benji and my Tigers will win for me but it is what the rest of the teams do and can you believe it, Pop did not go for Tigers he went for Titans.
My day had been so full and I was exhausted, however due to pain all down my right side and also in my left knee, I did not sleep well and we had to be up early the next morning to take Nalani to the hospital for her pre-admission appointment.
The sun was not streaming through the window this morning, the skies were cloudy, revealing an overcast day. I was so tired but we had to have Nalani at the hospital, on the way in the car I could feel my head drop and jerk back up several times. On arriving at Calvary Hospital they could not find Nalani's name on the list, but we had our letter and they checked, it had been booked on the old computer system, so she was actually there. We went to a room where she was asked lots of questions about her health and then she had the opportunity to ask questions about her surgery. It will take about an hour to an hour and a half, she will be in recovery for about another hour and then taken up to the ward. She will have a drip and a drain coming from her knee but that will be removed before she comes home, she may get to come home that night it depends whether she has any complications. She has to have a brace on and spend a little bit of time on crutches because she can't put full weight on it straight away. When she has her anaesthetic she does not get to have the gas like I do first, she just has it through a canula, that is because she is older. We have to be at the hospital at 7am in the morning of her operation and she is first on the theatre list, at least she won't have time to think about it or have to wait around wondering when she is going to go in. We heard later on in the day that her surgery will not take place at Calvary now, it is going to be at John James, which is further away and we still have to be there at 7am, that is going to be a long day for me.
After her appointment, we dropped her back at school and then I had to go for my blood test ready for my appointments next week in Sydney. Mind you we are still waiting to receive our schedule of appointments which is very frustrating as we don't know what is going on and if they have forgotten to make an appointment it would be too late now to organise one. My blood test was one through my vein and they are so easy, I actually sit and watch the blood run through the tube now, I was given a special tweety bandaid at the end for being brave.
After my blood test we quickly called into the shop to get a bottle and some chocolates for my Father's Day gift for Dad. I put chocolates into the bottle and then decorated it with Dad's name and gold stars, to finish it off I tied a gold ribbon around it and carefully placed a blue butterfly on the ribbon. I hope he will love the gift that I have made him and I can hardly wait to give it to him on Fathers Day.
We had a quick game of Upwords before driving to my appointment to have my hearing aid review. I had to describe how I was hearing now and any situations when I could not hear, it has been decided to organise a transmitter for me and my teacher to have so that no matter where she is in the classroom or how much background noise there is, I will be able to hear her like she is beside me. The unit I will have has earphones and it looks a little like an old fashioned MP3 player, not as slim lined as the ones today, then the teacher has one with a microphone that attaches to her clothes. The audiologist also said that I could use it for class discussions when I work in a group, the kids I am working with could speak into the microphone and take turns to say what they want and I will hear them. I am so excited about this, it will take a week or so for it to come in but the only problem is they have no appointments available at Australian Hearing until November so they are going to get back to us and try to organise an earlier one. I can't help but thinking if my oncologist had of written the letter when we asked him, then I would have had my hearing aid a month earlier and this appointment today would have been to get my transmitter. I also had my hearing checked today, I was quite disappointed to find out that my high frequency hearing in my right ear has deteriorated some more as well as a slight reduction in my mid range hearing. Those side effects from the treatment just keep on popping up and causing trouble for me.
This afternoon was running training, I did not practise my discus and shot put because it is the day before the Athletics Carnival and I do not want to make my arm too tired. I have a feeling that tomorrow will be too much for it as it is but I don't care, I want to do this and nothing is going to stop me, I hope I will be here next year to do it, in fact next year I hope to run in it but I don't know what time I have so I am not going to waste it.
Jarrett went to the paediatrician about his asthma attack at Cross Country, he has been put on a new faster acting puffer called Symbicort instead of his Seretide and he has to go for tests next week, one for his lung capacity and one where they give him Aridol which brings on an asthma attack and under medical supervision he will be assessed as to what occurs during an attack. So it is nothing like the lung function tests that I have had. He then returns to the paediatrician on 15th September to receive the results and to discuss where to go from there. He is able to run and the doctor said that with the right medication he will run just as well if not better than before so that was a relief for him. We will also mention the Vitamin D deficiency that was mentioned in a comment on my Blog and see what the doctor says about that.
I hope I can have a decent night sleep tonight as tomorrow will be a big day, we will go to school in the morning, watch Jarrett run his 1500m at 9.00am, have a break at home, watch Jarrett's 800m and then it is time for my field events, the first one is Javelin at 11.00am, then shot put and lastly discus. They have forecast isolated showers and fifteen degrees for tomorrow so hopefully it will all go ahead.
'Reach for the stars every time you compete in an event, believe in yourself and be proud of what you achieve'
On a wildly windy but sunny Wednesday I arrived at school to discover the whole Grade were sitting together listening to the Grade Leader Teacher, this could only mean that Year 7 had had some issues. I was correct, girls wearing makeup, people not speaking considerately to others, boys climbing on walls and an incident involving an aerosol can and matches. The teacher mentioned that as some people get older they think they can do what they like, but we are still young and have school rules to follow.
Then I had French, Mum had to go to a SCAN meeting about me so Chloe looked after me in French. We had some writing to do from the board, I only managed to write two sentences, both my right and left hands were crippled with pain. There were seven sentences in total, so I missed out on getting them down. We then had a sheet to fill in and Chloe and I worked together on it. Mum came back, the meeting had not taken place due to a communication breakdown from the Department of Education. A SCAN meeting determines whether the school is entitled to funding to assist children in the school who have a disability with their education.
Then we happily went to textiles, we had to make a bead using wool which you spread as thinly as you could, basically it had to look like a spiders web, then you soaked it in water and soap, after that you had to rub it vigorously between your hands, like you are rubbing them together to keep them warm. My hands ached so I did some and then Mum did some and our bead turned out fantastic. I then had to turn my wool weaving that I did on the meat tray into a little fragrant cushion. We cut through the wool at the back of the tray, tied it off then stitched one side, I felt so proud when the teacher told me that I had a good sewing technique and she could see I had done sewing before. After sewing one side you put wadding in then I chose Rain forest potpourri and put that in, then put some wadding on top and stitched it together. It looked and smelt magnificent, we have to keep all our sample work in our special bag, so I know that it is going to smell so aromatic next time I have textiles.
We came home at recess, I had enjoyed my day but my energy was depleted so I had to rest, following my rest I played Upwords and then we were having a very inspirational visitor coming, Sarah, I have mentioned her before, she has an incurable brain tumour, she has walked the Kokoda Trail and she is so positive. When she visited we talked about our diagnosis, our treatment, our doctors and the funny antics they have and how some are not very good communicators, we also spoke about the fun run on 6th November that is raising funds for Cure for Life Foundation and raising awareness about Brain Tumours. Sarah is going to push me in my wheelchair and we are both so enthusiastic about it. Sarah's birthday is on the same day as mine also and I found out that she is a Wests Tigers fan too! Having someone to talk to and listen to who is travelling a similar journey has been such a blessing and it is helping me to be more inspired and positive. It has also made me see how important it is to be part of raising awareness about Brain Tumours.
In the afternoon I watched The Princess and the Frog DVD and I fell asleep for about half an hour. When I woke I worked out my footy tips, this is the last week that we are doing it and Pop and I are equal on 99, poor Nana is on 90 so she is unable to win it, I told her that maybe next year she will win. So everything is riding on the results from this week, I know that Benji and my Tigers will win for me but it is what the rest of the teams do and can you believe it, Pop did not go for Tigers he went for Titans.
My day had been so full and I was exhausted, however due to pain all down my right side and also in my left knee, I did not sleep well and we had to be up early the next morning to take Nalani to the hospital for her pre-admission appointment.
The sun was not streaming through the window this morning, the skies were cloudy, revealing an overcast day. I was so tired but we had to have Nalani at the hospital, on the way in the car I could feel my head drop and jerk back up several times. On arriving at Calvary Hospital they could not find Nalani's name on the list, but we had our letter and they checked, it had been booked on the old computer system, so she was actually there. We went to a room where she was asked lots of questions about her health and then she had the opportunity to ask questions about her surgery. It will take about an hour to an hour and a half, she will be in recovery for about another hour and then taken up to the ward. She will have a drip and a drain coming from her knee but that will be removed before she comes home, she may get to come home that night it depends whether she has any complications. She has to have a brace on and spend a little bit of time on crutches because she can't put full weight on it straight away. When she has her anaesthetic she does not get to have the gas like I do first, she just has it through a canula, that is because she is older. We have to be at the hospital at 7am in the morning of her operation and she is first on the theatre list, at least she won't have time to think about it or have to wait around wondering when she is going to go in. We heard later on in the day that her surgery will not take place at Calvary now, it is going to be at John James, which is further away and we still have to be there at 7am, that is going to be a long day for me.
After her appointment, we dropped her back at school and then I had to go for my blood test ready for my appointments next week in Sydney. Mind you we are still waiting to receive our schedule of appointments which is very frustrating as we don't know what is going on and if they have forgotten to make an appointment it would be too late now to organise one. My blood test was one through my vein and they are so easy, I actually sit and watch the blood run through the tube now, I was given a special tweety bandaid at the end for being brave.
After my blood test we quickly called into the shop to get a bottle and some chocolates for my Father's Day gift for Dad. I put chocolates into the bottle and then decorated it with Dad's name and gold stars, to finish it off I tied a gold ribbon around it and carefully placed a blue butterfly on the ribbon. I hope he will love the gift that I have made him and I can hardly wait to give it to him on Fathers Day.
We had a quick game of Upwords before driving to my appointment to have my hearing aid review. I had to describe how I was hearing now and any situations when I could not hear, it has been decided to organise a transmitter for me and my teacher to have so that no matter where she is in the classroom or how much background noise there is, I will be able to hear her like she is beside me. The unit I will have has earphones and it looks a little like an old fashioned MP3 player, not as slim lined as the ones today, then the teacher has one with a microphone that attaches to her clothes. The audiologist also said that I could use it for class discussions when I work in a group, the kids I am working with could speak into the microphone and take turns to say what they want and I will hear them. I am so excited about this, it will take a week or so for it to come in but the only problem is they have no appointments available at Australian Hearing until November so they are going to get back to us and try to organise an earlier one. I can't help but thinking if my oncologist had of written the letter when we asked him, then I would have had my hearing aid a month earlier and this appointment today would have been to get my transmitter. I also had my hearing checked today, I was quite disappointed to find out that my high frequency hearing in my right ear has deteriorated some more as well as a slight reduction in my mid range hearing. Those side effects from the treatment just keep on popping up and causing trouble for me.
This afternoon was running training, I did not practise my discus and shot put because it is the day before the Athletics Carnival and I do not want to make my arm too tired. I have a feeling that tomorrow will be too much for it as it is but I don't care, I want to do this and nothing is going to stop me, I hope I will be here next year to do it, in fact next year I hope to run in it but I don't know what time I have so I am not going to waste it.
Jarrett went to the paediatrician about his asthma attack at Cross Country, he has been put on a new faster acting puffer called Symbicort instead of his Seretide and he has to go for tests next week, one for his lung capacity and one where they give him Aridol which brings on an asthma attack and under medical supervision he will be assessed as to what occurs during an attack. So it is nothing like the lung function tests that I have had. He then returns to the paediatrician on 15th September to receive the results and to discuss where to go from there. He is able to run and the doctor said that with the right medication he will run just as well if not better than before so that was a relief for him. We will also mention the Vitamin D deficiency that was mentioned in a comment on my Blog and see what the doctor says about that.
I hope I can have a decent night sleep tonight as tomorrow will be a big day, we will go to school in the morning, watch Jarrett run his 1500m at 9.00am, have a break at home, watch Jarrett's 800m and then it is time for my field events, the first one is Javelin at 11.00am, then shot put and lastly discus. They have forecast isolated showers and fifteen degrees for tomorrow so hopefully it will all go ahead.
'Reach for the stars every time you compete in an event, believe in yourself and be proud of what you achieve'
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