This topic contains 11 replies, has 9 voices, and was last updated by 
KWilson 13 years, 11 months ago.
Hi!
I feel very nervous writing on this forum but i need someone to tralk to.
My brother was diagnosed with myloma 5 months ago. since then our lives have been a roller coaster.
my brother is a very quiet and reserved type of person. choosing to deal with this alone. which i try to respect BUT we all need someone to talk to. Don't we?
He is off all meds at the moment (he was vile whilst on them) and is waiting to go for stem cell sugery.
he has flu and been told to rest but insists on gong to work. Even tho he has been sent home and told not to come back 'till he is better. what is he up to?
my elderly and not too well mother is devastated and also chooses to bury her head in the sand. may b i should to? i know it's not the right thing to do tho.
Sorry to go on but can i get support from you guys?
partner and friends don't really understand
You could not have come to a better place. You will find a real nice bunch of people here some Careers, some with Myeloma – like me and some just friends or relatives. They have a wealth of experience and will no-doubt be happy to help and support you. If you have questions do not be afraid to ask. If you just want to rant and rave how unfair it all is feel free or if you just want someone to talk to there will always be somebody here ? just post.
Kindest regards
David
Hi (sorry you didnt put your name)
It is awful and comes as such a blow when someone we love is diagnosed with Myeloma. My Mum was diagnosed in july 09 at the age of 64, how old is your brother? My mum herself buries her head and so does my dad, I joined this site not long after she was diagnosed and found help, support and most of all friendship from everyone on here.
It sounds like your brother just wants to carry on as normal (whatever normal is), it has done my mum good to ignore the illness, we are getting so much more time from her that I think we would have, you know what the say "ignorance is bliss" and it works for some!
You do not have to bury your head in the sand if you dont want to! I needed to know everything, it helps me knowing (I think). Even us on here can only assume how you feel, everyone feels different things at different times, if you have any questions at all feel free to ask, there is always someone on here that can give you advise or help.
I wish your brother well with his SCT (sorry i cant help you with that one) keep in touch and come on here whenever you want, we are all here for you.
with love michelle x x
Hi I am sorry to hear about your brother. But as has been said this is a fantastic site with lots of advice support. I think it is important to realize that every one deals with this awfull disease in their own way. When my hubby was diagnosed all the family were brought together and told that no one was to do any research . He said that if he needed any information he would get it off his consultant. This was not my way and for about two years I would research, find something – which I though important, tell Frank and then all h*ll would break loose. It was not a very happy time. I went to see a counsellor (organised by Macmillan) and this really helped me. I finally realised that this was his illness and he had to deal with it in his own way. (Even if I did not agree) It took some time (has not stopped me from asking questions on the forum and other places)but now I support what ever he wants to do. This works for us. We do not mention "Myeloma". We just go from apointment to appointment.
Do use this site as there is a mountain of advice, experience and support.
My best wishes too you and your brother.
Jean
Hi sorry you are having to go through this its an awful time but things do get easier as you all learn to cope with myeloma and its treatment. There were times in the beginning when I refused to give in to tiredness etc and pushed myself to the limit I was trying to hang on to old life , as perhaps your brother is too , but eventually you learn to pace yourself My mum is elderly and has been devastated by my having myeloma and she chooses to talk about when I am better , but I dont disillusion her as this is her way of coping Please dont feel alone there are lots of wonderful people on here to support you and your brother too if he wantsFor now just take one step at a time and ask us all the questions you want , it will get easier to cope with Best wishes Bridget
Hi
Sorry you had to join us. As other people have said you will get loads of support and friendship here and sometimes a bit of a laugh about other things besides mm.
It is my husband who has mm. He had a Stem Cell transplant in the summer of 2009 He is now on a bucket load of drugs to prepare him for the next one.
He was Ok having the Stem Cell transplant but tell me about the drugs!! Dexamethasone (sp) turns my mild mannered, caring and loving husband into a 2 headed monster (both of which I would like to cut off:-) )
Do keep posting on here, asking questions and getting support from everybody.
Godd luck Gill
Hi
As has already been posted, sorry you have had to join us but welcome!!!
My husband has mm and has just had a 2nd stem cell transplant in dec, the 1st transplant lasted 6 years of more or less a normal life. I think i often bury my head in the sand as i am sure that really gordon will get better really!! Idiot!
His parents don't really (want) to understand and think he will get better soon ( 9 years later they are still waiting!)I find it difficult to have time for them as they have never offered any suppourt to us or our as they were at the time young children even my very crippeled mother wanted to do the washing when gordon went in for the 1 st transplant, she could not even do her own!Bless.
Good luck if you need to talk to someone the myeloma team on this site are very good, as is the macmillian service who you can get hold of though your or your brothers gp, he sounds aa though he is in denial which is another way of coping with this nasty, trouble is he will become exhasted.
best wishes
sarah
THANKYOU,THANKYOU,THANKYOU, 2 evryone that answered my post.
I felt extremely guilty after writing it.
I do understand that it's 'his' illness and that i am a different character.He has 2 deal with it his way. i just feed my mum snippets on a need to know basis.
trouble is i like info and probably research tooooooooooooooooooooo much.research has given me knowledge along with highs and lows. it can be lonely but its how i cope! looking for hope……………..
I was just so cross that he'd gone to work and he was so poorly. I,myself, am stuck in bed recovering from flu. my mum also has it and i feel so stressed with it all.
I'L get to know ALL your names in due course and look forwrd to getting to know u.
thankyou again for your kind words
post soon HILS xxxxxxxxxxxx
Hi Hils
Never ever feel guilty. Everyone of this forum knows what your are going through. The only other thing that I can say – whicy was said to me when I joined the forum – Don' search the internet as a lot of the information is outdated and would scare the life out anyone. I get my info here and on the Myeloma Beacon. Your brother will find his own way – you just have to support him. I know this can be difficult as there are times that I want to scream at Frank, but he has a strong character and he deals with this illness his way. The same goes for your mum – she has to find a way to cope herself. We have 4 sons and they all deal with it differently.
I hope you are over the 'flu. As I carer I as well as Frank got the flu vacination.
Take care love Jean xx
Hi Hils
Never feel guilty, we are all different and all need to know things at different stages, not one person is the same. You can do your own research, but it doesn't mean you have to tell your brother, this is your private time.
with much love michelle x x
[b][/b]Hi My mum was diagnosed with Myeloma in June 2009 she was 69 she has had the first cycles of treatment chemotheropy thalidomide tablets they only gave half the dosage because it made her so ill so instead of 6 treatments she had 8 then they stopped the treatment she was left for a while the pharaprotiens came down from 33 to 19 but now they are back up so she is waiting to go back to the hospital on the 3rd of feb so they can see if they are going to do the next course of treatment depending on the other test if they are ok kidney and liver funtions ect it has been a shock to our system we had never heard of myeloma before it is like being on a rollercoaster its every 8 weeks to the hospital keeping everything crossed all the time hoping everything is ok but my mum is an insperation to us all she has carried on she said whats the point of sitting at home feeling sorry for yourself there is other people out there worse off the macmillan nurses phoned her the other week asking if she needed any help she said give it to someone else at the moment has im ok for now i can manage thats how we carry on my dad died 21 years ago of cancer my mum has brought 6 children up always worked and adoppted my nephew who has learning difficulties when he was 1 he is now 24 we just hope they can find some more treatment we take every day has it comes.i have done 2 coffee mornings i raised £150 for the first one and the second one i have just sent a cheque off for £160 we hope we can do other fundraising in the future.:-)
Welcome, you'll find lots of help and support on here both for yourself and your brother.
It's a complex disease but you do, surprisingly, get used to the terminology and treatment but intially it's a dreadful shock and you feel as if you'll never get to grips with it.
Don't be afraid to post with good/bad/funny/sad news or posts, there's always someone here who will reply and try to help where possible.
xxxxxxxxxx
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