Now a week since I started the trial and it seems the steroids are hitting me harder than I thought. Despite not having had any Dexamethasone since Monday they must still be rattling around my system and I've had pretty broken sleep and feeling a bit spaced out on them. Informal review of my blood sugars has been done with research team and diabetic practice nurse and decision still to keep at the high level of steroids but to be reviewed. ( For those of you interested I'm being sent a leaflet specifically on Diabetes, Blood Sugars and Dexamethasone- so clearly not a unique situation I find myself in). But at least my blood sugars do seem under control. Difficult to know at this stage what effect if any the Lenalidomide is having- that's where my first set of blood tests next week will be interesting.
Still trying to keep some form of exercise up though hampered by the pin in my leg which is also being reviewed today. Can't get out on my bike yet but have resorted more and more to my exercise bike. And since I'm such a good stereotypical scot and don't want to waste energy I've attached it to a dynamo which now charges 12 v batteries to be used in my alternative house energy system. If interested let me know and I can send plans for such a set up. It won't power the national grid nor reduce Scotland's fuel bills but its good fun. Also now building a wind generator. Next plan is to harness the dog up to some kind of energy tapping machine.
Two things are coming clear even at this early stage of the study. One is that we myeloma patients do seem to attend lots of clinics. In my case I go to Haematology, Diabetes, Clinical Oncology, Orthodpaedics and am also part of a small group being monitored by the hospital dentist because of the possible negative effect of my Zometa ( bone support drug) on bone formation in the jaw etc. Quite apart from dealing with the myeloma, its a time consuming business and the demands of the study will emphasise that. The other is how many businesses in the medical world have contacted me by spam email since I put the blog up. What's a bit concerning is that even Patientline ( hospital bedside TVs and phones firm) have software which seems to have trawled my address book for forwarding addresses urging all to buy into their business. I'll need to check my security software.
Thursday, 15 March 2007
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