Outlook: undecided but probably disappointing

I have just finished talking with my consultant. He said that my bilirubin (jaundice-causing chemical) level seems stable, and the CT scan report apparently describes some dilation of the biliary tubing (ie some internal liver ducts blocked and not draining under slight pressure), though he is yet to examine the images himself.

My case is not, apparently, going to be discussed until tomorrow. He repeatedly told me he didn't want to anticipate the result, but then also repeatedly implied that it would come back "No transplant, sit and wait for longer/maybe try one other minor surgical option".

I'm already preparing to challenge that fairly robustly if necessary. Unfortunately I didn't really manage to do that when he saw me today as he woke me up when he came in. Due to significant pain last night they gave me a high dose of Tramadol (same family as codeine/morphine and somewhere between the two in strength), which kept me up and buzzing all night and morning unable to sleep, albeit out of pain. I finally fell asleep this afternoon, so you can imagine how alert I was after a totally sleepless night and shocked awake after about 1.5 hours sleep this afternoon!

Anyway, if he tells me they want to sit and do nothing or try minor surgery again then I shall want to check that they are therefore all very confident that I am going to have a significant improvement in quality of life. I expect him to hedge a bit at this point and say it is possible there could be some improvement. I expect to 'retaliate' with the argument that as anything below significantly better is unacceptable to me for any extended time then why not 'wait and see' if I impove while on the list instead of effectively wasting my life sitting around being ill.

What's frustrating is that this is exactly what I said to him last time, and exactly what I have told several other people today. I have been visited this morning by one of the top transplant surgeons and also the anaesthetist who both discussed it all with me, and the senior surgeon in particular said "we won't tell you to do nothing, we will offer either minor surgery or transplant".

Oh the frustration.

And Dr. O'Grady hasn't read my poem yet - "Just to let you know I have received it but not had time to read it yet as I have had more urgent things to deal with".

So still in until tomorrow, at least, expecting disappointing news. As Dad said when I told him, why is nothing clear-cut and simple with this damned disease!

Signing off for now,
disappointed Dave.