Rob and i came up to yorkshire on saturday. He stood the journey well despite the fact that he had been in bed nearly all week .(He must sleep 18 hours a day.)On Saturday afternoon, against my advice he decided to go for a pint with my brother (in his case a sip).He was exhausted by the evening, and he just hasnt picked up since.He sleeps nearly all day and night,he doesnt have his first feed of the day till 10am then i struggle to get the rest in and he sneaks off to bed without his last one.He feels hungry,so tried to eat three times this week (managed a bowl of soup on Monday)so we thought hey ho the end is nigh.
No such luck .His mouth is covered in thrush again and now he cant eat anything.his tongue has split open at the front and he seems totally unable to lift his spirits.I went to visit my grandaughter for the day yesterday and when i got home he said he hadnt had any morphine and was going to take paracetamol instead (still on fentanyl 50 mcgs.)At 8 am this morning he was in massive withdrawl.Shaking sweating disorientated etc.I gave him some morphine and it settled down within the hour but i really do despair.Why cant he just follow the doctors orders?The mucous in his mouth while a little less is now much thicker,and he is getting nerve pains in his face again.At present i have taken charge of the morphine and i will work out a regime for gradual decrease in the dose which is currently 30 mg three hourly.When i ask how he feels he just looks at me and says "shit" but is it the treatment or are the drugs causing more problems than enough?
Confused in the UK

It's the treatment and the drugs. But it sounds like he need the drugs still for pain (and it isn't surprising since he's only been finished for a little over 3 weeks, right?). Recovery from this can be a long slow process and nothing that he is going through sounds that abnormal, including the amount of sleep he needs right now.

The thrush could have been aggravated by sipping on sugary, yeasty beer but more importantly he should NOT be mixing alcohol, even a little bit, with the pain meds he is on. The way they interact can be fatal--even with what normally would be a very small amount of alcohol. I'm sure he was told that somehwere along the line....

Nelie

Cookey, please know that it is really too early for Rob to feel much better, and the sleeping is a normal thing at this point. The thrush and the mucous are also part of the recovery from tx. In short, it may well be months before he is feeling really good again. His Doc or nurse should help you all deal with the thrush- just keep pushing them. The mucous may last longer. You all have been through alot and hopefully the end of all of that is around the corner. It's important NOT to get frustrated at this point. Glad to hear you are monitoring the meds. Amy in the Ozarks