Hi Eve I am glad you find this site helpful ,I know its a lifeline for me .You didnt say how long your partner has been diagnosed but if it wasnt long ago you are bound to still be in shock and trying to come to terms with such a life changing illness But it does get better , life may be different than before but nothing stays the same forever. It…[Read more]

hi everbody

I would just like to tell you all how helpful I find this site,I never mention my partners name because his daughter does not know!! long story.

It is very hard sometimes I understand his feelings but as a very open person it is hard,he is just the opposite of me.If your can not do anything about it why worry about it!!!!

I…[Read more]

Hi Ruth,
I am so sorry about the news about your husband….of course you are upset and worried about him, and for your children.
He is really young, I was 34 (with a then 2 and 4 year old)when I was first diagnosed with asymptomatic myeloma in July 2009 and I started treatment November 2010. When you first hear the news, it is terrifying, but,…[Read more]

Hi guys,

Thanks for all of your kind words, it really does mean a lot.

Although I haven't posted on here much in the past I follow everyones journeys regularly and this site was truly a god send in the early dark days.

Its Only Me I wish you and your mum and family all the best and please keep us updated on how she is doing.

Eve I also…[Read more]

Hi Ruth what an awful shock for you no wonder you feel frightened and alone .If I were you I would avoid searching the internet for information as a lot of whats out there is out of date and can be frightening .I agree with Jet the specialist nurses are great and very easy to talk to If you dont feel thats right you can ring the info line on this…[Read more]

Hello Jon

WELCOME to the site it is the very best place for support help and information especially to know you are not alone all the odd and disturbing symtoms you may get there will always be someone who has had it before and can talk it though with you I hope they sort out your pain soon good luck for the journey
Keep well
Jo 😎

Haha lets just settle for irreverent anarchists!! Bridget

Hi Gill sorry to hear Stephen is having a rough time . When I was on velcade the fatigue was a major side-effect, I wasnt able to stay on it for long so I dont know if it gets better over time Fluid retention was also a problem for me , I think it is the combination of dex and velcade Does Stephen take Ferusimide ? It would be worth getting hold…[Read more]

hi jonny

Its my partner who has mm,I have found this site very helpful it has certainly calmed my fears.my partner is in his 5th day on myeloma x1 trials he got ctd branch.I can only say he is better than he has been for many months; Jets story is so similar to my partners.

I can only advise you to get things in place in advance,eg blue…[Read more]

nicki
I have only just joined this site,and to hear there is light at the end of the tunnel is good news.We are just starting are journey ,one we did not expect to be on.It gives me hope for the future,one thing I have learned from this site is to be positive,I thank you all for that regards eve

Here you go Jon….Scotty and Phil's email addresses….Scotty is often abroad with work but email them both and one of them will sort you out with an invite

phil.kelly2@btinternet.com

c.scott@added-value.com

See you on there.

Hi again Jon,

We're real rebels on this bit!!! Not really. I think Scotty and Phil set it up originally for people that bit younger who have slightly different concerns. Work, young kids etc. And the idea that with all that, that life suddenly looks very different when you're diagnosed with MM.

If you go onto the main bit you can get Scotty…[Read more]

What great news Nicki…..hope all goes well with the house move and that you have a lovely break in Poland.

Happy Wedding Anniversary 🙂

Love
Debs x

Hi Jon,

Welcome to the MMUK site and I think and hope you'll find it a great place to get info, support and friends! I don't think I could have managed without this and the Under 50 site. That, and like you say, a hugely supportive group of family and friends.

You don't come across as arrogant at all….very positive, especially considering…[Read more]

Hi Nicki how lovely to hear that Sam is doing so well and your life is back on track Good luck with the move and I hope you have a wonderful time in Poland love to you both Bridget x

Hi Jon welcome to our merry little band , yes we are mostly merry ! Your head must still be spinning but its great you were able to get a fairly early diagnosis. In my experience, I was on the Myeloma X Trial , you get the very best of care whilst on a trial and hopefully you will sail through it without too many hiccups. Have you got your pain…[Read more]

Hi Jon
May I welcome you to this Great site 🙂 its not one we would want but seen as we have MM its the best going, as well as the Under 50'S 😎

Am same as you in the fact My Wife Family and Friends have all been very supprtive through all this and we (even i) have a lets get this party rolling and sort it sort of mind's:-D

Good Luck on…[Read more]