Hi Gayle

Alex had a similar treatment, did really well with the chemorads (although this is relative as his complications during chemo were catastrophic, making the chemorads a picnic by comparison).

However, about 1 week from end of treatment, pain became too much and nausea and vomiting needed managing. The nausea and reflux persisted for around 6-12 months and we now believe the original chemo had an ongoing effect on his entire Gastro-intestinal tract that Alex still has his moments with.

He continues to take an anti-reflux medication (Somac) and took a short acting anti nauseant just before he got out of bed in the mornings (he used to lie in bed for about half an hour as we thought being vertical might be setting him off) and in the evenings before the bulk of his nutrition was administered via PEG.

Painwise, he took the fentanyl patches, long acting oxycodone and short acting oxycodone. This went for 3 weeks (from exactly where you are now to 2 weeks after treatment), then tapered to just the 2 oxycodones before withdrawing from all pain medication when the ulcers started disappearing.

Despite the worst period still being in front of us, the end of radiation was cause for a great deal of relief and a strange sense of anti-climax. We thought of it as being at the bottom of the hole and looking up to the sunlight for the first time in 6 months where previously we had been sliding into that hole. Alex checked himself out every morning and regularly told me that he was lucky today as he wasn't too bad which meant even if tomorrow was awful, it was one less day of suffering to consider.

May I suggest you keep track of his "good" and bad days as in a couple of months time when your husband is frustrated by his perceived lack of progress you will be able to reassure him that he has indeed progressed and that this time last month he had 3 good days and 4 bad ones in a week, this week he had had 6 good days and 1 bad one. Progress is slow and survivors may need reminders and examples of how far they have come. They may be unable to see it themselves.

Watch for confusion/concentration issues caused by chemo too - Alex described it as his thoughts being tangled. The confusion often manifested as irritability as he tried to make sense of something I might have just said that made no sense because he had already forgotten the context. If Jerry feels this, let me know as there are things to help this too and it does eventually go away.

And remember if he snaps at you, he really thinks you are a goddess but the pain and the pain killers and the frustration are giving him a hard time