Perpetual hell...

I’m so sorry very to hear this.  It indeed sounds like a living hell.  If you’re not sleeping as well that’s making everything worse and you’re not getting the brief reprieve that sleep can offer. 

Have you thought about calling the MacMillan helpline?  They’re open 8 - 8 every day, including Bank holidays. I spoke to them yesterday  and the woman I spoke to was incredibly kind and knowledgeable.  She also helped me come up with a plan of action for my own situation….. so not just listening empathetically.  They do offer services for relatives and friends, not just patients (it was suggested I tell my sister about the help line)

Regarding PALS, you might be best to go into their office at st George’s.  They can take a long time to respond to emails/telephone calls.  And you obviously need their help/support urgently.

Sending you a hug (if you like hugs) and hoping you get some response and clarity qyickly.

Done all that.

I even had a call Weds from Prof Mary O Brien from the Marsden who is head of lung cancer & she explained everything & at that point, Mon/Tues there was improvement. After her call Weds I went up & hes declined since. His voice can just about be heard as & wen speaking. This was his worst nightmare, to be in a hospital bed like this, he just wanted to go quick, instead all dignity gone & no hope whatsoever.

He wont get better, no treatment just having  to face each day not knowing if awake or asleep. He cant even get out of bed, so being moved in various positions in case of bed sores. No happy ending here, just watching a man I've known 30 yrs decline in just over a week. Went from being out & about on holiday, to bed bound wearing a nappy not knowing me. And not one single symptom before this, not even a headache. So shock, anger, grief & being totally lost with whats happened x

So awful for you both x