Thanks PHG that's really encouraging. I had my operation mid-April. Now I'm off chemo I can get the temp ilio reversed. My surgeon is on my christmas card list for successfully looking after a lot of important nerves and blood vessels :)
I think the chemo and cancer specialist nurses are fantastic. The surgeons and onco are clinically excellent but the nurses are very aware of the person as well well as the disease.
BTS - its always good to hear about people who have put this behind them for good.
NC - I so hope you get the treatment you need asap. It must be so frustrating to know you it exists but you can't get your hands on it.
Thanks everybody for your support.