The one thing that was upsetting to me was in regards to post treatment.

Pre-treatment we got a big binder of what to expect from radiation and chemo. It contained nutritional recommendations and recipes. We had exhaustive meetings with everyone on the team. And, as awful as everything was, and as much as we didn't believe the side effects would pertain to my husband, we were well versed as to what to expect...and, everything they said would happen did indeed happen.

Then, on his last day of treatment, we were sent out to fend for ourselves with no knowledge of what to expect. Had I not had access to this site and specifically your posts, David, I don't know what I would have done.

I, personally, think that if a patient doesn't have a PEG they should be checked daily post-treatment for dehydration. I have no medical training and I really struggled through those first couple weeks post tx. There were times Dan would go to sleep praying he would NEVER wake up. Finally, I arranged for home healthcare and I got him hydrated and things started to turn around.

Bottom line, we got a month of preparation for how to handle the treatments and tons and tons of monitoring during treatment.

Then, when you need them most, the medical team cut the cord and put all of the responsibility onto me. I think they should focus as much on the post-tx care as they do on the tx.

JM2C.

Good luck!