Hi Sandra thanks for making me giggle today !!From another oompah-loompah who also has the round face , awful pot belly and stumpy legs !! Shame we dont all live closer we could put on a very authentic production of the show !! Seriously I hope its not getting you down too much sometimes it depresses me more than others( usually when I try to…[Read more]

Hi Eve

When you say its a bit complicated well dont i know it, and am sure she would want to know? but you know her better than I.

The main thing is for you Both to stay strong and fight this bloomin MM and try not to "Store Problems" I know its not as easy as that :-/

And the comment you made bout cheering you up has left me feeling…[Read more]

Hello Henry

welcome to the site sorry you have had to join the club I was diagnosed Jan 09 age 61 had the CDT which worked well for me although I did end up
with numb feet due to the thalidomide this is a common side effect my toes are still fairly numb but small price to pay as the treatment got on top of my Myeloma I have a monthly infusion…[Read more]

HI jo

Interested about going on holiday,how do you manage insurance wise? We have been told once my partner gets use to drugs we can go off in motorhome,but he is on morphine ,and only 10 days supplied at a time,so France looks out although for us France is nearer than most counties,and I am happy to drive in France.The customs might have…[Read more]

hello tom

It is a bit complicated with his daughter,in February she knew he fractures in his back,Then he was told he has mm and decided he would tell her h/term when she said she would travel up.She did not come,and no phone calls since,

My own daughters know and are there for both of us.I feel she should be told but will not go against my…[Read more]

Hi Henry
Well a warm welcome to you 🙂

Sorry you had to join though, but seen as you/I or we need something when we have MM cant get a better support group 🙂

I was Diagnosed in January 2009, and since then I have had stem cell harvest and transplant, and now back at work (light dutie's)

All went well but as we all know we have our Off…[Read more]

David

You are part of the liberation movement and dont you forget it

Love Jo x 😎

hi Sarah

I was made to wear a liberty bodice hated it mine had button which attached
to my fleecy lined knickers (YUK) had to wear them all winter but only knee socks so legs got chapped all winter so not so toasty

Love J0 x:-)

Hi Gaye
sorry hear your back pain is not much better will they be able to operate if the RT doesn't work how are you getting on with your new treatment have you had any results yet

Keep well
Love JO

😎 hi Ladies and gentleman
I have found bras a pest most of my life as I have always been on the plump size and more plumpish on steriods I had to wear one I have found a sports bra with good support and no bones the best when my ribs were painfull I popped 3 ribs which was agony
Onwards and upward

Love Jo 😀

Hi there.

Sorry to hear that Patrick's having a bad time with cramps Tina….can't be pleasant at all…then again, what is with MM!! Hope yours aren't too bad either Gaye.

Think I'll be off the revlimid soon….I seem to have plateaud so it looks like in a couple of weeks I'll be randomised (within the Myeloma XI trial) for either velcade…[Read more]

Hi jon
You are going to have down days;I do and its my partner who has mm.He has just finished dexa starts again Friday.Iknow he is a bit down right now but being a man keeps it all in.It would be lovely to have a magic wand and turn the clock back,Try to keep chin up regards eve

Hi girls this is certainly a hot topic and I agree bras are a painBut now that I am the size of a house it is actually just as uncomfortable to go without, oh for the days when my nickname was ironing-board!! It has added to the image of militant mmers marching in protest –bra-less and hobbling !! love Bridget x

Hi and welcome sorry you have had to join us but you have found the right place for info and support It sounds as if you have a good medical team looking after you which helps a lot if you have confidence in them It does get easier as begin treatment and get to know the ins and outs of various treatments but I remember how confused I was initially…[Read more]

hi hmason

Lot older than you but based in Deal Kent,Try 50 age group a lot out there,My partner is in 6 th day of treatment on myeloma X1 trials he got ctd side.He comes under the same consultant but not seen the big man'Worth trawling site as I found it very helpful and reassuring there are people out there who have been on this journey a long…[Read more]

Thank you for your replies, it is helpful to hear from real experiences rather than statistics.

My husband has been put on a drugs trial, I don't know what for though, he couldn't remember all the names. I know one is thalidomide, not very helpful He had a third plasma exchange today, and another transfusion this evening, his proteins are very…[Read more]

Hi Eve
I also know how well this site feels to me Its like putting on an old pair of shoes 🙂 you know the tatty ones we just wont throw away 🙂

And as for worrying? well I worry about not worrying ha ha.

Does your partner not want to tell his daughter? or is he just waiting till he grasps the MM facts?

As for it changing our lives?…[Read more]

Brilliant game David I enjoyed playing it got all the countries correct
but not in the right places

Love Jo :-S

hello Jet

I have been reading your blog I hope you are feeling a bit better now I know the shock must have been terrible for you if its any consolation I did not lose my hair during trearment(CDT) your hair looks wonderful such a lovely colour
Love Jo 😎

Hello Ruth

I can relate to your worries MYELOMA is an awful diagnosis at any age but 29 is so young you will get all the help and encouragement you need from this site which may become important to you as you are seperated from your partner the hopital may be reluctant to give you any real information
Good Luck Jo