Hi Mari and Steve

Soon be all over Mari,but take it easy that journey alone is a horrible one,I was so tired just going up and down all those steps at the station was awful.

Slim had a driver for meds,could not keep anything down,even now he will not touch stuff he was sick on,cold milk and ice cream seemed to help.I just stocked the fridge…[Read more]

Sarah what brilliant news! It is so heartening to read posts like this. Long may the remission last. He has had a rough road and Henry as they say here in Norn Iron )northern Ireland to people on the mainland ) "good on ye"

Love Jean x

Lovely Min. Thank you
Jean

Hi Mari

I f I am correct that is a few floors up,turn left out of lift and walk down and it is on your left 2 wards through one door.!!!not very good views from windows,but bigger rooms,and from what I remember they would even do cheese on toast,bigger kitchen.It is roughly half a mile all together from Denmark Hill station.Slim was in there…[Read more]

Hi Pat
AL is similar,it is rarer,I think 600 cases a year,last time I looked and only one hospital Royal Free,there are a few people on here with both Amyloyds plus MM,they usually pop up in related conditions.

It is not knowing that causes sleepless nights,so once you do know you feel you have something to fight,Velcade works for MM.

Its…[Read more]

Hi Cathy,
Well Ivan is on his way,it amazing how quickly they recover from what seemed at the time,as will he recover.

Give it time Cathy he will get there,you just make sure you get some rest,when he comes out,it will get harder for you,as cleanliness,washing and cooking will take up you day,so try to have a rest now,if anyone offers help…[Read more]

Hi Judy
It is not unusual to feel this way,after a few months any one will tell you it is part of the grieving process.You want answers and are entitled to ask questions.

I have always made a point of keeping records of blood results as they can tell you a lot about a persons condition.

When you saw the consultant on the Tuesday who told…[Read more]

Hi Mari

How are things going???? You must be back at school now.Eve

Hi
I just wish they would do one south of London,just to far to travel, bad enough having to go to Kings,every few months.So unless it comes my way will not be going to info day. Love Eve

Hi Everyone

If it is any help to anyone, I tend to look at peoples profiles before I reply:-P

If some one is not prepared to identify themselves,it is questionable,some of the posting is more than questionable Dai,its sick.Eve

Hi Sarah Jane

Sorry you have had to join us but you are in the right place. My husband had SMM for 6 years and has just started treatment June. It is a roller coaster journey and I know where you are coming from about getting tested. Frank went every 3 months and for most of that I was able to put it to the back of my mind and get on with our…[Read more]

Hi Sarah

This is just to say hello,sorry I cannot be much use to you,Slim never did smouldering,went straight in with AKF plus hypo-calcaemia,.

Lots of people at all different ages with SMM ,so I am sure you will get some reply,s you could try the under fifty,s lot,you have to ask to join.

Hope you stay smouldering for years and years. Eve

Thanks Tom

Time will tell,Slims got a chest infection at the moment,and being sick a lot,every time I think he is picking up,down he goes.At least he is holding his own at the moment

I keep telling him about you,how good you are doing,all that vodka you drink,2 years on and going strong,he,s jealous Tom lol.love Eve

Hi Eva

Thank you for the information,it all helps,we are not private,if we were I think I could argue a good case for having some form of maintenance,When Slim was going through his treatment with CDT,everyone thought he was on his way to remission,as his blood results have always been good,and his kappa light chains were well on there way…[Read more]

Hi Gill

Matty had a long service,but I do remember some were in the middle,she said anyone who had there own believes and thoughts,were welcome to say a pray or have a few minutes silent to pray in what ever they believed in.!!!!

It is very sad,that people cannot gather to say good bye to a person ,in there own way,Gill you do not even have…[Read more]

Hi Chris
This is great news for you both. Hope the rest of the journey goes smoothly, do you get a date soon?
Love Helen

Hi Benz

Just to say welcome.

Min you should know Tom by now give him a Vodka and ask him to do any impersonation ,he could even sound like me,Ore rite there kid,us scoucers never went to school.

Good job we can laugh,in the position we find ourselves in.Eve

Oh Gill
As If it weren't difficult enough. I do hope your celebrant is a better choice.
Love Helen

Hi Eve
No you are right, those of us who are on it, potentially could be on it for a long time but if anything like the French trial starts to happen it could all be withdrawn on safety grounds. We just don't know. If Slim has not been drawn into the treatment arm then it is close to impossible that he would go on it as part of myeloma xi trial…[Read more]

Hi Vicki
Well, it was never going to be an easy ride and I suppose someone has to test the system to its limits, and clearly it is Colin's turn at the minute!:-/
I do hope you get a date soon and things begin to move, it's so unnerving having all this uncertainty, you can't plan anything, it's very depressing too.:-P
So keep your spirits up…[Read more]