Sunday, 14 March 2010


What a frustrating 2 weeks ..... I lost my Broadband connection and it was like losing an arm! Not able to send e-mails, surf the web or post to my blogs was hell! So my apologies to those who were trying to contact me and received no answer. After many phone calls to the HelpLine (every time answered by a different person, meaning that I had to start my story all over again on each occasion), plus several tests of my modem router (done by me on their instructions) involving moving it from telephone jack to telephone jack, taking it to a friends house to see if worked there (it didn't) then borrowing THEIR modem router to test my connection at home again (there was none), I then had to wait for a replacement modem router to arrive.

Of course, the new one did not work either ....... so yet more phone calls and endless explanations! In the end it was decided that an engineer would come out and a charge of $200 was threatened .... I said 'Go ahead for goodness sake'. And finally it was discovered that the fault was at the Exchange after all - nothing wrong my end at all.

So it all ended happily in the end ..... I'm back online with a new modem router for no charge plus $20 compensation for the inconvenience BUT .......


Saw the Neurologist two weeks ago. He does not think that I have PMR and agreed with my decision to wean myself off the Prednisone. However, he thinks that the headaches and nausea should be improving by now and wanted me to try Tegretol (Carbamazepine)....... a drug used to control epilepsy and some mental health conditions that is also sometimes effective in controlling certain types of headache. I said no thanks - I have had enough of these horrible drugs and their horrible side effects.

He thinks I am a 'difficult patient'!

But I don't want to take any drug that is going to give me more problems to deal with than I have already. If its not going to have any beneficial effect on the tumour itself and has potentially harmful effects then why take it? If that's being a difficult patient then GOOD FOR ME.

This time he did not do the full neurological assessment - just a reading test for eyesight, followed by a check of the backs of my eyes with the ophthalmoscope which he said "were not too bad" (whatever that means). After which he said he thought an MRI might be useful to check how things were going. The MRI appointment was sent very promptly and will take place 29th March. Hopefully it will demonstrate if there has been any change in the size or shape of the tumour. It will be really good if there has been no change (i.e. it has not grown), and if it has got smaller that will be excellent news. The alternative doesn't bear thinking about.