Hi Ned
In response to your questions, he is still on Tarceva although latest scans show progression of disease, liver mets,lung and lymph. Currently evaluating other options left, never had any real pain, more discomfort, this is still the same.There is no NHS policy on stopping treatment, so not sure what you mean by this, we make the decisions. Cancer doc doesn't have a good explanation for current level of fatigue, SOB, the treatment was to increase steroids, done this, no change except to make him snappier! Almost 2 years since DX. I think that as Tarceva appears to have stopped working this may be causing fatigue (using logic that when it was working he had rash but no other side effects, now no rash just this fatigue and disease progression)he is not willing to listen to this theory and stop taking it for a week to see if any difference.
As for looking after myself, that's a bit of a joke! I haven't been me since diagnosis and everyone talks about caregivers etc... but what can you do? who else will look after him? no one ,so it's impossible to have a life other than the one I have, which is pretty lonely and miserable at the moment.
That is not being said in self pity or for sympathy it's just the truth.