Side effects

I don't think it is paranoid at all. I keep a few "observations" about my husband - to remind me of the facts when palliative care nurses ring out of the blue to ask me how he is. It is what staff in hospital would do. I think it is helpful to them that my recollections are accurate and helps me spot patterns, anything that changed with a change in meds, or put things in perspective eg. I can see he only actually threw up twice last week, and usually after exertion like coming upstairs, or see how many days he managed to get his target 2 litres of fluid. I think I do it as a reflex because I'm a scientist by training!

Palliative care nurses???? That sounds nice. How do you get one of those? 

Two ways as I understand it - as we are in the process of being passed from one type to the other.

The ones I have been talking to up to know are associated with the hospital where my husband has been getting treatment - once things started taking a turn in the wrong direction the oncologist asked them to get involved, so they drop in on my husband when he's in hospital for treatment to check on him and they are an extra phone number to contact in case of problems and good at suggesting changes of drugs to relieve symptoms.

The ones we are about to be transferred to now, come from being referred to our local hospice. A GP might refer you to a hospice or you can self-refer by giving them a call if you are in their catchment area, and obviously only if you are an end-of-life patient. You need referring to get their at home support - definitely don't wait until you think you need to become a hospice in-patient.