[annetteParticipant]

Thank you all, your words were hugely comforting in a long dark night xxx

[annetteParticipant]

Thank you all, this forum is a real comfort. I hope I will be able to provide comfort for others in the future in the same way. Dad us now very confused and often agitated. His infection is not responding to anti bs and so now we just wait. He is coming out in large lumps all over doc says myeloma spreading. Macmillan are coming today and our doctor has told us now is the time to get close friends/family in if they would like to come say goodbye. His vicar came yesterday and gave him last rights. I am praying that God takes him home soon now as he is comfortable at the moment. Xxx

[annetteParticipant]

Eve … thank you so much xxxxxxxx

[annetteParticipant]

Hi Tom, thank you. He is just on dex on a mon & tues now. CDT for 6 months put him in remission for only a month and the myeloma continued to spread despite Velcade plus he reached the end of the max no of cycles. Then unfortunately he had a very nasty allergic reaction to Revlamid and so has been told there is nothing more they can do to treat the myeloma, only it's symptoms.

the anti biotics appear to have kicked in and hes a little brighter this eve but still sleeping most the time now in bed 🙁 xx

[annetteParticipant]

Unfortunately the hospital have been less than helpful 🙁 it took ages for them to link the severe pain in his jaw to myeloma 🙁 we were fobbed off with a different diagnosis and because dads levels of pain exceeded what they shd have with this diagnoss he was made to feel like it was psychological and he needed to calm down 🙁 he was sent home with codeine and spoken very rudely to by the max fax team "why aren't you eating" because its too painful " well eat on the other side then!" They later discovered it was a large myeloma mass pressing on all his facial nerves 🙁 hence the pain that wasn't In fact just in his mind!! 🙁

[annetteParticipant]

Thank you so much for this, I will call her tomorrow. It's such s comfort already talking to people who completely "get" how I'm feeling xx btw the small lumps under dads skin are related to the myeloma so I can ask about those too xx

[annetteParticipant]

Thanks Eve, who are Ellen and Maggie? Xx

[annetteParticipant]

Sorry my post seems to have attached itself to Susannahs post rather be a reply to you all 🙂 xx

[annetteParticipant]

Eve, no one has given us a reason for the fluid on his lungs, just that its there, but he has an appt with his consultant tomorrow so we may know more then. He had a chest infection at the weekend and slept the entire time looking awful and not eating. We prepared ourselves to say goodbye but he has rallied round and has fought the infection. A question I have is that he is finding more and more hard tiny lumps under his skin?? Just this last week. Plus has very itchy skin.
Susannah, I have just read your thread "waiting" I am so sorry you were told in such a harsh way 🙁 and thank you for taking the time to give me your kind words.
Thank you all xxxxx

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