Friday, September 10, 2010


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'


Anonymous said...

HI Dainere , lack of sleep is terrible for you , sorry to hear that you've had this trouble with the ankle , as if you have not got enough to think about.

So glad to hear that the neurophysiology test showed that things are not as bad in that dept as first thought . Westmead, I guess you mean the childrens hospital at westmead , it is a fantastic place , I used to work there. They are very kind and gentle. you will be cared for well.

Yes the coogee team are right , your smile is electric.

The hugs from your radiation doctor would have felt like a gift , it is so nice to receive genuine hugs from people , that is great news that no tumour exists on your cerebellum , (thats were mine ended up),and also that the metastic tumour has reduced in size, hopefully the hormonal and height thing will be sorted out for you . YES always keep fighting hard Dainere , some times it is easier than others , but never give in . Your Rainbow will come .

The meal at the Spanish Fly sounds great , Lovely to have peole who care for you so much , like Gavin and Tess.

I will pray that your oncologist will be happier when you see him next month.

yes they start early with the Christmas decos dont they.

Try not to worry to much about "what is going on with your body" bodies are as you know , very complex bits of machinery. I guess with all these things being thrown at you constantly , it is going to take a little longer for things to stabalise. Continue with that amazing faith and strength that you have , you continue to amaze me . Love and best wishes stuart xx

Anonymous said...

Go the Tigers!! Very nervous, fingers and toes crossed that they win!!

Love Fran

Anonymous said...

Hi Dainere,
Already said go the tigers and it looks gr8 so far...I've now read your past two days and you have so much on your plate.

Good results and poorer results - your're right but I know you will be in good hands at Westmead as my son had heart surgery there two years ago. We found that a difficult period but nothing like what you endure daily. You continue to put so much detail into your writing, don't know how you manage to do that after exhausting days and nights.
Praying hard for you, God Bless, Goodnight
Love Fran XX

Anonymous said...

Hi Dainere,

Your Sydney trip has, as always, been full of ups and downs. You describe everything so well.

You have new challenges on this trip which seems unusual for you, as they keep getting thrown your way, you cope so well anyone else would be overwhelmed.

I can feel from your words how much you touch those around you, imagine smiling through a procedure and waking up from an anaesthetic - AMAZING

I hope the hormone thing gets sorted out and you can grow a bit and put on a bit of weight, it may help your strength as well.

I bet the cookies were yum!

My prayers, as always are with you and your mum and of course your family at home in Canberra.

xxxx Monica