Hi Babs

You certainly have had a terrible time. But as you have read a out Slims journey you will,know that there is light at the end of the tunnel. Slim had a hard struggle but look at him and Eve now gallivanting all over the place – and New Zealand no less!!! So as Eve says book you Australia trip (when you get consultants permission) then…[Read more]

Chris great news you are going home and that you are feeling good. I'm sure Lena is over the moon as well. Take it easy and take care

Love Jean

Hi Babs

Get that letter from the consultant and book it,it will do you the world of good,since remission,we have had a cruise,been to France and now NZ,we do not have a lot of money,but when you now your chances of living until you are 80 are not great,it,s not important.
Hi Jean
Thought I would say hello while on,we never seem to be on line…[Read more]

Hi Babs

IT is a bit of a bummer,comes and knocks you side ways,all your plans for the future,flying out of the window,well i am a carer and I felt like that:-P, still do some times,it,s a big learning curve,but look around you,all ways someone worst off than you:-S

My husband had his SCT in May so a little ahead of you,and we are off to NZ…[Read more]

HI Keith

Well,you answered your own questions,so does that mean it was not so much of a shock or is it a combination of relieve plus your ready for the next hurdle,??? I am amazed that I could not find a lot of trials for people in your position in the uk. To put it bluntly you must feel any new trial offers some hope. I looked at cancer…[Read more]

Hi Babs

Sory you had to join us but welcome. It is such a shame that you have only just found the site as this is a great place for support,advice and friendship. I hate the word carer, but I am carer to my hubby Frank. We are just waiting for a date for his SCT. How was yours are you in remission? Although I have been a member of the forum…[Read more]

Hi Keith

I hope this works for you when i was at the MM info day in London they were talking about third and fourth sct i wonder if you could get a referal to to Kings or Uch it was the consultants from there that suggested it they also prescribe drugs from the Rare cancer fund if needed
which included pomalidamide
Regards Jo

Hi Keith
I really hope this works for you, ironic that you look and feel so well now. So keep us posted and I hope the side effects are small and manageable
Love Helen

Hi Ali

Must admit I felt cheated for Slim,I had done a lot of research and 33% chance of no treatment and 66% of treatment,Slim got no treatment,to be truthful felt deprived,and I am just a carer lol.

Saying that have got my head around it,now looking forward to 6 weeks free,then 2 weeks of test and consultant,so there are some good points…[Read more]

Tom I have to say it,you are as bad as Slim,

Slim was being sick and I went out to the desk and spoke to the doctor who said he could go home,as long as he was not sick, mhhhhhhhhhhhh.He had told her he was not being sick earlier,I told her," he tells lies",who did she believe,An ex marine who could look you in the face and lie.

I rest my…[Read more]

Dear Keith
All I can add to what the others have said is to hope tomorrow gives you some positive treatment approaches. Be sure to let us know how you get on, thinking of you
Love Helen

Hi Keith

I cannot answer any of your questions or give advice on Trials but just wanted you to know tha tI am thinking of you and hoping all goes well for you tomorrow and you get your questions answered

Love Jean x

Hello Stewart

Well a very bonny welcome,and congratulations on your new baby:-)

Well MM is the last thing anyone needs or wants,but saying that on here you are going to see and hear lots of people who live with it for many years,so you will learn to cope with it.

First may I say forget that diet,you will need all your body to sustain the…[Read more]

Hi Keith

You sound very down,and who can blame you,I would agree they know the results,the meeting will be to decide the next treatment,in some ways they are trying not to leave you in a state of not knowing,but they forget,you become an expert on yourself.My advice is look on here at all the trials taking place in you area or not,and go armed…[Read more]

Hi Chris
Sounds if things are going well,they have taken your tube out,well well they must think you will not need any extra,s to help you improve like platelets.So that must be good,when you start feeling better you tend to want it to constant,well everybody is going to tell you it will take time,its something you cannot rush,if you stop and…[Read more]

Hi Carol
I am so sorry Carol,cannot help with PAD,Andy is the one to help you as he had PAD but it did not work for him:-(

Your right,you do not have to put on a brave face here,we do understand,although Slims in remission,the brain says when do we have to start going through this again,never said at home but the thought is there,then I give…[Read more]

HI Eric
Hello and welcome.You must be wondering why you have not had any reply,s???

Well if i may explain,because you went into an old thread,although it shows a posting it has come on screen in the middle of an old posting.The best thing to do is ,log in go to the first section,which you did,then scroll down to start discussion ,then you can…[Read more]

Hi Sue
May be the answers lie in what you did not hear!!!!!

When Slim was being taken to ITU a doctor in front of me said to him,you are being taken to ITU "I cannot promise you,you won,t die",he did nor ask and he cannot remember:-P.

Sue you need to speak to someone may be a consultant or your own doctor,you need to ask for a second…[Read more]

Hi Vikki
Sounds as though its all progress, I had lots of phosphate, it's a bit of a b*****r as they have to give it really slowly so you really have to drink lots, which is really hard when you feel so sick. I'd banished all visitors except hubby by this stage, didn't want anyone to see me in that state! No hair, running to the loo, throwing up…[Read more]

Dear Carol
Very sorry to hear its back, I really hope PAD does the trick for a very long time, look after yourself,
Love Helen