Hi Sophie - it's a while since John finished treatment but I remember very clearly that it somehow seemed almost too much to handle a month or so after treatments ended. The huge amounts of mucous seemed to get worse - if that is possible. I, too, was exhausted and more on edge - there's limit to what is humanly possible as a care giver.

I think John also became very depressed when the daily treatments were finished and we had to wait a few months to have the tests to find out how effective the treatment had been. As others have said, better to be doing something that you hope will help than any of the waiting stuff.

The mucous did gradually get better. You are at a very difficult point right now but, soon, there will some small improvements and even a tiny change for the better can really lift your spirts. For me, it was when, after being fed by the electric pump for many days at the end of treatment and afterwards, he said he'd like to try just having a regular feeding through a hanging bag. Oh joy of joys!

Hope you're able to have some help come in - even if it's just so you can sleep for a few hours in the day. Being sleep deprived can make it all feel worse. There may a friend or relative who can handle the mucous bit. Not everyone is easily put off and some people really, really want to help.

Mary