Day 10: Coming down from steroids.. yuk.

Another blah day today, After four days of extremely powerful steroids today I have none.
It's a horrible, horrible feeling. Your body stops making it's own steroids because of the huge dose, and then bang it's cold turkey when you stop. Could be a few days before mine kick back in. I can't quite describe what it feels like, but it's something akin to a powerful physical anxiety. You body and brain just seem to be missing something, Leaving you with this hollow ache that isn't really a pain but an all consuming feeling of physical angst. Anyway it's crappy and hopefully by tomorrow it will be gone.

Yesterday was as expected... 5 liters of Iv drips that consumed my entire day and didn't finish till 3am this morning. They have now been completed and I'm told there will be no more for a while. Just the std three daily infusions totalling about one liter.

There's still no word on the bone marrow results, that's a real pain. I'll post those as soon as I know. They have not sent my stem cells back yet, and Dr Kopic said today that he might test them for anti-bodies, Which would help him develop an even more targeted treatment. It's good to know he's constantly looking for options. I think he's a lot like me, hates to be beaten by anything. Certainly good to have him on my team that's for sure!

The summer holidays have bitten into the staff numbers here. As soon as I get to know someone they announce that they are away for a few weeks. The only real affect it seems to have on me is that Dr K has to try and converse directly with me, which can be difficult as his English is poor. I find myself trying to break down my sentences into the simplest terms. I hope not too much is lost in translation.

The staff are incredible though, they want you to phone them for the slightest thing. Pain relief anything.. They give no impression that you are disturbing them. In fact it's almost as if they would be upset if you didn't call.

Today at 1pm I have an appointment with Bela the physiotherapist. Should be interesting!, he has promised me a massage, mainly in my feet and legs to work the steroids out of the muscles or some such thing. He's a big tall man of about 50 something, I hope he's gentle!
Then tomorrow it's back with the thermaltherapy, the probes and the sweating. Oh Yay!

Met another two ladies today at breakfast. Eleanor has gone home, Eva and Pam are still here. There are others, but like me ,they hide away at meal times.
The new ones are Dawn and her companion Tania from London. You know it doesn't seem to matter where these people come from, Sweden, Canada, America or the UK. The stories are the same. Doctors with no resources, stuck in a system where drugs are not available, where waiting lists are so long that patients cancers get worse as they wait, some must ultimately die waiting.

To me the choice was clear, "bugger this! I'm off!" Was what my instincts told me. But so many people are stunned like possums in the headlights of an oncoming car, they just want to believe that it will be all OK, and that what is on offer at home will do the trick, just make me well, make it all go away. Perhaps they don't want to know.. bite their lip and pray. The system does work for a great deal of people, I'm not disputing that. However if at some point it stops working, you need to look elsewhere. It would appear that most people don't. "If nothing changes, then nothing changes" as I've often said.

Pam even told me that some of her fellow patients in Canada thought she was nuts for coming here, saying that the doctors were amazing back home. Heck the best doctors in the world are useless if they are working in a flawed system! The best captain in the world won't get you home in a leaky boat.

OK enough rambling.. Shall go and prepare for my massage.. will let you know if it turns into an adventure! :)

..R