[eveParticipant]

Hi Annette.

You do get this feeling of being abandoned,I just get the impression of going through the motions,but saying all that how much does your Dad know,because they do get confused,I often think its best for the patient to ask,the one question,how long have I got,

As a carer you just have to go with the flow,as Su said here husband lived with the knowledge,being very frightened ,so may be its better just to accept,life for what it is.

I changed surgery after 40 years went with the doctor who ,I trusted,No regrets,I now have two very good doctors.

Part of the problem Annette is you need to explain a little bit more,I do advice you to ring Ellen or Maggi,who can help you, everyone on here will be here fore you as we'll, My husband came out of hospital yesterday ,clot removed from artery,I surppose I am use to a lot ,as Slim was diagnosed 2 1/2 years ago,so you end up very knowledgeable,
Deep breathing has always helped me,when things start going wrong,I find it helps.!!!you just have to find your own way of dealing with this,it will were you down,and if you cannot cope may be a hospice ,might be the solution .Love Eve

[annetteParticipant]

Thanks Eve, who are Ellen and Maggie? Xx

[eveParticipant]

Hi
Ellen and Maggi are specialist nurses in Myeloma,they are at the end of a phone roughly 9 to 5 Monday to Friday, number is a free number 0800 980 3332 . I have spoken to Ellen ,I have a deafness problem ,and had no problems hearing her,she is in a room on her own,you do not have to worry about getting upset,she will help you with any questions you have,and by phoning you will be explaining yourself better. Do not worry if you do not understand the medical facts,I have lots of problems with pronouncing words:-S

I found it very up lifting to talk to Ellen,I wish I could have made Bournemouth Myeloma Day,as Ellen went,just purely to meet this lovely lady who helped me,just when I needed it,did not solve my problem,but felt she understood were I was coming from,some one who has a gift like that,is a friend in deed,even in cyber land. Love Eve

[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]

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!! 🙁

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