Hi Liz,

Just like you and Georgia, I am also in the UK, it does seem that the treatment and medication on offer are diffrent in the States, however the advise and support has been just what I have needed.

The biggest problem Mum and I have come across is people not wanting to tell her how things are, it is like they do not think she will cope with the info, what they do not know is she a stronge cookie and if they don't tell her she thinks that is because it is bad, often it has not been as bad as she will have prepared herself for.

Mum had lymph nodes 1 - 4 removed 23.1.07 good recovery from the operation, but low red blood cells meant she was short of breath and at risk of aspiration, everything now goes via the PEG and apart from WANTING a cup of tea, she is coping very well. The PEG will mean she does get her 2000 calories a day plus all the water she needs.
Go for a PEG if you can, you may be glad of the option later on.

The best thing we have found for the pain is a combination of MST (slow release morphine) every 12 hours plus Gabapentine (slow release for the nerve pain) every 8 hours plus paracetamel every 4 hpurs during the day, most of the time Mum is pain free. I say we because seeing her suffer breaks my heart.

Mum has her 1st of 34 radiotheraphy treatments today. I am concerned that her red blood count will get worse throughout the treatment, and we are trying to avoid her going back to hospital due to the pain managment not being dealt with last time she was in there. Has anyone out there be offered EPO, I have asked for it and been told it is not avaiable on the NHS and probably not worth me paying for it.

Thanks everyone for all you support.

Andrea Eve