Sorry to hear this Columbo.
As others have pointed out, it ain't over yet.
The one thing I haven't seen mentioned, is go to NOW to the "pros from Dover" </Mash movie quote> and get a second opinion. MD Anderson, Cleveland Clinic, Mayo Clinic, Johns Hopkins and the like. These are the most experienced docs, nurses and facilities in dealing with your problem. They do this everyday, they know what they are doing. They are are the bleeding edge of clinical trials of new treatments.
I went to MD Andersen for my kidney cancer and I'm REALLY glad I did.
The other thing I haven't seen mentioned is keeping a logbook of everything. Who you talk to, their address and phone numbers. The tests you have taken and copies of the results. The treatments you have tried, the results, how it made you feel. It's a whirlwind and it's easy to forget stuff. Having the logbook was very helpful in my case. Just having the records of all the tests got me into surgery at Anderson in a couple of days versus a couple of weeks.
Good luck, mate...and may God richly bless you in your search for a cure.