Tuesday, September 7, 2010


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.


Anonymous said...

Hi Dainere, Thinking of you and all those tests you have to have , thought about you this morning in the chapel at the hospital I work in .

I am so sorry you have had such a tiring day and hope that tomorrow brings you a bit more rest.

My best wishes to you , oh by the way , forget to say that I have a new Baha , a BP100 its a bone anchored hearing aid, super duper digital one . only today at work it stopped working !!

Take care

Anonymous said...

Hi Dainere

I am excited that you're in Sydney. You are the biggest super star in my eyes!!

I PRAY each day for you and your family, you are all so strong!!

Love Fran

Anonymous said...

Dear Dainere
What a day you have had! Well it was not too clever to make you walk - I do hope your ankle is OK and that you have a fast recovery.

Somebody must have heard us talking yesterday about the pain medication! I am so excited that finally you have been given something that has the potential to reduce your pain. I am praying very hard that this works for you and that you don't get any of the potential side effects. Yay - I am so pleased.

I called at around 5.40pm to say hi but as you weren't back in your room I figured your day had been as long as you expected and that you would need to rest rather than chat.

Another big day tomorrow - I hope it is not too stressful and not too painful.

I am thinking about you all the time gorgeous girl and I am looking forward to seeing you again on Thursday.

I am sending lots of love and positive thoughts across our special rainbow from me to you.

Lots of big hugs and kisses always
Tess xoxoxoxoxoxo

Anonymous said...

Dear Dainere,

You certainly are having an exhausting time! And today (Wednesday) will be a long one, too, with lots of waiting around. Maybe you will have time to rest... Each day is a day closer to going home. Hope Sydney's weather is a bit more welcoming today. It doesn't look much warmer than Canberra in the weather charts each night.

So glad that the Pain Clinic people saw you. Great news! And to do cooking for your OT appointment... how good was that! Hope you get a nice big packet to munch!

Thinking of you all today and hoping it will pass quickly and painlessly. Your courage and determination, bravery and strength are awe-inspiring. And it is certainly all right to be nervous, etc... perfectly normal!!

With thoughts and prayers,


Anonymous said...

Dainere - I can't believe that after such a big day yesterday you found the energy to post! You are a trooper.

You had me chuckling a little at being glad to have your MRI because at least you got to rest. Did you pick up your cookies today? Hope they are as good as they sounded.

Hope todays barrage of tests and challenges weren't too taxing.

I am facing something tommorrow and try as I might not to be, I am a little nervous. I like you and hoping that lady luck shines on me this time around.

But, regardless of the outcome I hope to be able to face it with the grace, dignity and strength that you face all of your challenges. Thanks for being you and sharing. Be strong blossom and enjoy those flowers and choccies an cookies.


I am very glad to hear about the pain medication and I really hope for two things - that you don't react to it except to actually get some relief from the pain.

Anonymous said...

Hi Dainere
Been away for awhile was hoping to catch up with you in the clinic when I got back, but Rhiannon told me you back in Sydney. Have been following your blog, seems to me you are still having a bit of a rough trot. I bet you have still got that big smile on your face though :) I hope mum has too. I hope you aren't too long in Sydney and I get to see you soon. I have been thinking of you lots. Hope you have a much better day tomorrow. Luv Sandra xoxox