Christine, thank you for your practical advice. At the risk of sounding defensive - I DO know that Love of Life is going through hell, more than I can imagine (although 4 days waiting to die when I was 27 gives me some small inkling of the paralysing dread that sweeps over without warning). Although I can see his pain and nausea coming (ex nurse working with non-verbal patients), I can't see that low level wretchedness that I know he is living with all the time sitting in the background just waiting to come out and wreak havoc. I also know that my own previous experience was only 4 days and cannot compare with weeks and months of waking up every day to pills, treatment, doctors, fatigue, fear and well meaning but bullying girlfriends. However, this well meaning but bullying girlfriend will deal with the practical stuff, stroke him when he reverts to 6 years old and forgive myself when I forget to bite my tongue at times.

Thank you so much for the advice re the nutrition products. Learned quickly through research that there is little available over the counter that fits our needs and it hadn't occurred to me to ask if the hospital had a stash - even though Alex and I discussed donating our own left over TwoCal to the next person (Alex can't tolerate the Two Cal, and the smell of Vanilla will forever make us both sick :/).

We have our "group hug" with the team tomorrow afternoon, so will tell them about his PEG. I am concerned because Alex is on so much pain medication, the extent of the pain (and potentially a real problem) may be masked. Scan is a good idea - they can do full body instead of just his head this week I think.

thanks again - I'm sure there are other gems but am trying not to do the epic again