lymphpre

I'm still around, and glad to hear that people are doing well. It's now a whole year since I finished chemo.

I have not posted for a while, as little has changed. My lungs appear to be stable, although the gas transfer score has never returned to the normal range. I've got used to being a bit out of breath now, so it does not bother me too much. Gradually tapering off the prednisolone, but probably still going to be on it for some months to come.

Other stuff is not going so well. Still feeling permanently exhausted, foggy brain, headaches and sweating all the time. Two MRI scans of my head show abnormalities, and lumbar puncture shows elevated serum protein. No lymphoma cells were found in the CSF sample, but the elevated protein shows there is definately something wrong. Had another MRI scan this week, vestibular function tests (they were not nice), and am due another lumbar puncture before I see neurologist again in 3 months. Have been trying to speak to oncologist for last few weeks, but he does not return my phone calls. I suspect he will just trot out the usual line about hodgkins invading the CNS being very rare, and it's up to my neurologist to work out what is going on.

It is so frustraing to keep having all these tests, be told there is something wrong, but nobody seems able to work out what it is. Maybe I will get to the bottom of this at some stage. If I find out anything, I will let you know.

All the best
Simon