I've come a long way since this time two weeks ago.
I've learnt a few things that have and will make my life a lot easier..
Firstly I've learnt that appetite and eating are linked in a peculiar way...
The less you eat, the less you feel like eating and effect it has on your health and well-being is enormous. I started to force myself to eat much more food than I have been, and I stop for lunch regardless of how hungry I feel. The result is that I now find my appetite returning and I'm regaining lost weight at an amazing rate. (about 2kg a week). My energy levels are up and I feel much better.
Secondly I've put the fire out in the furnace. Burning away most nights at 38+C is not a good way to gain weight. It also made for fever and chills right through the night and was often accompanied by sweating and poor sleep. What I do now is I measure my temperature at around 5pm and if it's rising, which it usually is, I take one single Nurofen tablet.
The result is that my temperature stabilizes and I get through the night without so much as a single bead of sweat. Better still I'm not burning up all those calories.
Who would have thought that taking just one single Nurofen could make such a huge improvement to my quality of life. I used to dread going to bed because that's when I was the most uncomfortable and that in turn reminded me I was sick... and my mind would start to think of all the negative things.. Now I sleep like a baby, it's fantastic!
I've heard nothing from the hospital, so I have to assume the lung washing and scrapings showed nothing treatable. I have emailed the doctors and asked that we hit the floor running on Tuesday, rather than just a debrief on my status. I have so much stuff in my head I need answers for.. I really hope there is some progress made next week. I guess we shall see...
Footnote: I just got a phone call from Travis at the hospital. He said that the lung bronchoscopy had shown nothing. But that he was very curious about the fact that there had been some resolution in the lung when comparing the last two CT scans. He said that he would need to confer with Dr D'Souza when he returned on Monday, but that it was most unusual for there to be resolution (reduction) in the lung if it were Hodgkin's. Mind you he doesn't know that I'm eating about 18 apricot kernels a day and taking 6000mg of vitamin C, so there could be some benefit there.
Anyway, he's fairly certain that the next step is a lung biopsy to see for sure just what it is that I have. Won't that be fun!!! NOT!! ;-)
So more mixed messages and reason for hope.. he still thinks it's possible I have some sort of weird virus/bacterial infection... Personally I've had enough lymphoma in my time to know the symptoms... but I'm happy to hold reality at bay for a few more weeks.
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