Thursday, March 10, 2011

I can explain...

... why it's been so long between updates; really, I can.

Basically I had decided to wait until after the holiday period to post anything and let you all know what we had done. I than decided that I would wait until after my Rituximab infusions and let you know how that went. That then evolved into after the clinic appointment, which would give an indication of how effective the infusions had been, which happened today! Phew...

The holiday period was a bit of a non event really. Not much happened, we went on a few little trips catching up with relatives but other than that it really was home based. My best friend of 25 years, James, came to spend a week with us, and sorry to say that with my condition deteriorating steadily; I was kind of glad to see him return home so that I could settle back into my normal routine. That was also the last time I really got stuck into the beer...

Speaking of beer, I have been more or less alcohol free for three months now. I say more or less, as I had half a glass of champagne with Kerry to celebrate our Anniversary / Valentines Day, and two Mid Strength beers at James 40th birthday party.

Now on to the medical stuff, which I suppose is what this blog is supposed to be all about. Those of you who are my 'Facebook Friends' will no doubt have seen little snippets here and there, but nothing really substantial and most certainly nothing really relating to treatment etc.

Starting late January, I commenced a course of Rituximab infusions. This was one infusion per week for four weeks. Well, it was supposed to be anyway; the actual therapy stretched out over 5 weeks thanks to Cyclone Yasi hitting on the last week of the schedule. Not to worry, I suppose though as the course is now finished and the results are in. Unfortunately the Rituximab seems to have had little therapeutic benefit, leaving the specialists with little to nowhere left to go as far as slowing the progression any further. I was again reminded of the average life expectancy of someone with my condition and related complications, which I already knew and really didn't need to hear again. It's probably a good thing Kerry stayed in the waiting room as she would have had one of two reactions to this; she would have either turned into a sobbing mess or she would have gotten angry and abused the doctor, neither of which would have been productive. For my part, I just sat there and told him that this was all information that I already knew. He DID say though that new things are being developed all the time and that we never know what may happen in the next two years, so I suppose he was trying to be positive in some way. Whilst we haven't resigned ourselves to the inevitable just yet, we have now reached a period of acceptance and are fully prepared for the worst.

Drug wise nothing much has changed. I am still receiving pain management therapy using Oxycodone, however as well as taking instant release tablets, I am also on sustained release tablets twice daily. This has been the case since I started the Rituximab infusions and is the main reason why I decided to stop drinking.

Kerry and the girls are doing well. Madison is in Grade 7 this year and is a Peer Mediator. Off to Secondary School for her next year; we have enrolled her in the private school and hope she is accepted. Charlotte has commenced guitar lessons and seems to be progressing well so far. Perhaps in a few years Madison and Charlotte can perform together; Madison on the Piano with Charlotte accompanying her. :-).

Well, it's time for me to get tea on (and the girls want the PC to play 'Club Penguin' so I shall sign off for now and keep you all posted as things arise.


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