Hi Sarah
Good to hear from you,no sign of the Ram!!!!!!
what you say is so true,Gordon loved his land and was privileged to die on it,and you have the comfort of your family around you.I consider grand kids your greatest asset,the future generation for the land you love so well,so his memory will always be there,you just have to decide were your…[Read more]

Hi Paul
It's so good to get good news, makes the journey that bit easier.
Chin up got to be in peak condition for the sct.
Ps used to work at jimmy's on one of the orthopaedic wards, back in the 80's, lovely place, met my husband there.
Helen

Hi jo
What bad luck, I'll be thinking of you tomorrow with the bmb, I'm not looking forward to my next one.
Love Helen

Hi Eve mmm it really is very sad that people take the huff when clearly the system is at fault not the individuals, here's hoping the next visit is better and they are more professional about it, don't let the blip dampen the good news.
Love Helen

Roz sorry that you are having such a terrible time. When I went for counselling I didn't go near my doctor. Our hospital Belfast City Hospital had a MacMillian centre and a counselling centre. I went in there filled in a form and saw a counsellor within a week or so. When I felt a couple of years layer that I needed it again I phoned and went the…[Read more]

Oh Jo, you were doing so well. I'm so sorry that This horrible thing has reared it's ugly head again. I pray that you next treatment works. Good vibes going to you.

Live Jea xx

Hi Jo
I was thinking about you today,so sorry Jo you have been doing so well,Velcade has worked well for Slim,and they have caught you early,Let hope the BMB shows low results,I can only say its knocked Slims from 80% to 10% in bone marrow,that,s after 4 cycles twice a week,with no heavy side effects.
Ask away Jo,if we can help you we…[Read more]

Hello Dave and welcome
you have really been though the mill but you sound a very determined character so I think you will cope very well with SCT we are very aprehensive about all trearments will they work can I cope I think you need to have faith in your medical team they are only trying their best for you
So good luck and keep in touch

Love Jo

Hi Dave
Tom said it you have been through the wars,and with the determination to walk again,I would say you are doing great,its a big thing,my hubby was lucky he had no compression of the spine,but a fair amount of bone damage.
if you have a look at under fifties there is someone on there who has eye problems ,I think that,s how Myeloma was…[Read more]

Hi Helen,
I felt the same way as you when Slim was in hospital and thought wait until he came home,but I was so busy,bathing and looking after him day and night,the complaint never got done,and my verbal complaint never was dealt with,he will never go on that particular ward again,and now I stand my ground I take the view I know when he is…[Read more]

Hi Eve
I can totally sympathise, the long waiting in various places is outrageous. Particularly when you and Slim have been through such a difficult time. I really feel for you, it only adds insult to injury.
I've been trying to frame a complaint that sounds more like positive feedback,:-/ because I don't want to alienate people. Now that I am…[Read more]

Hi Gill
Well at least you are getting there,I know you said there was a good local doctor,who new about Myeloma,so that must be helpful if any thing goes wrong!!
How will travelling affect being on RCD????

We did have a week in Canterbury site as we had so many hospital appointments between us,it was cheaper and easier than travelling for…[Read more]

Thanks again for all your wishers,yes I did over do it a teeny bit!!!,i had Slims share as he does not enjoy a drink!!!.
He over did it by not resting enough,found all this energy,and paid the price on Sunday after the walk,has been sleeping most of the day and night,making up for not sleeping well on Velcade.
2 week of 5 cycle this week.
On…[Read more]

Hi Gill
RCD is the other side of myeloma X1 trials,Slim got CDT side,but we wanted the RCD,if that makes sense !!!
This is the one JET had and had such good results.As you know people are affected in different ways,but they can alter the dose,It looks if it will become one of the front line drugs for MYeloma but at the moment still a trial…[Read more]

Hows about YELLOW

LOW next

Jean x

Hi Gill
I' sorry to hear Stephens second sct has failed
I was on this combo as induction therapy for myeloma xi trial, I had all the tiredness, sickness, peevishness and generalised unpleasantness but for me it worked and dropped my light chains from 800 to 17 (normal) in 3 months. I went to work all the time I was on it but some days were very…[Read more]

Hi Roz
You are coming up to your own 1 year soon!!,so my thoughts are with you,I have to confess when people say it gets easier!! I have my doubts the loss just becomes more acceptable,but it,s always there,but in time the good memories remain.
I hope you have planned to do something,even if it just opening a bottle of wine and enjoying that…[Read more]

Hi Everybody
I am on a bit of a high at the moment,slept well for the first time in ages.mind you G&T wine an d baileys helped.LOL but feel wonderful this morning and its such a lovely day the sun shining,and everyone seem to be out walking this morning.8-)
Min you were right about not giving up,and with out your support,i think i might…[Read more]

Hi Dad and Abi
Welcome to the site,It is no use telling you not to worry because your world has just been invaded by Myeloma,and your thinking this cannot be happening to your dad.
There is so much to take in,so just try to take it one day at a time,I found it useful to ask friends and relatives to stop phoning all the time,because I was just…[Read more]