Hi Beverly
I probably had smouldering mm for about 3- 4 years before it changed to end stage disease. I thought I was having a bit of a struggle with arthritis, being a 50+ nurse! Don't get too tired or run down and I hope it stays 'smouldering' for many many years.
Love Helen

Hi Vicki
Colin only needs to suck ice for about an hour max, so I made ice cubes in those bags and took them in a cool bag to go straight into the freezer when we got there. I think I made hundreds of them , I used different flavours from those kids fruit drinks, Ribena, fruit shots, some with very little flavour and lots of them diluted down…[Read more]

hi Pennie
You do not say how old your are,your husband is entitled to Attendance Allowance ,it is not subject to how much money you have,plus you might be entitled to carers allowance!!!.Worth seeing about .

I cannot help with the REV.but you have coped with other treatments,my husband is retired,but I do get concerned about him driving,so I…[Read more]

Hi Beverley

This is just a welcome to the site,and hope you keep on smouldering for many moons.

By being diagnosed early,it means they will keep a careful eye on you,learn as Much as you can ask Ellen for books on it.

My husband went full in to MM with a lot of damage,and we do not know how long he had it.
So my advice is learn as much…[Read more]

Dear all
I didn't have cyclophosphamide priming before my stem cell collection, there were no beds available in the region for the drip to be given!! I was not a happy bunny may i tell you, this change of plan really upset me. However they told me that it would not delay my transplant as they dont always do cyclophos priming in our neck of the…[Read more]

Hi Mari
Amazing we are 70 miles down the road,and had nothing but sunshine all day,a bit windy,I watched my daughter sitting in Wimbledon with just one quick shower,It came down at my other daughters nr.Dover in sheets,but did not rain much 9 miles up the road.:-S
I think they do have different polices on different wards,as Slim was in Davidson…[Read more]

Hi Everyone
The procedure working up to a sct differ from hospital to hospital.
Slim was like Steve,s we travelled up from Deal that day and got back at 8pm.
Slim did his own injections,we did stay up in Kemsing for the harvest as it took 2 days,Slim found it tiring he was dosed up with Calcium through a driver,because of feeling sick.
At…[Read more]

Hi Teresa
I know this is a hard time for you and your family,I hope you have a palliative care team,coming in to help you.
I can only send you my best wishes,and hope you achieve those small goals,that you talked about.Peter has a goal with the grandchild on the way.
Love Eve

Hi Dai
Well in truth you have been here before,and you know the routine,but you know you will get over this little hurdle,you both sound if you need a bit of a break and some pampering!!!!,can you do anything about that, I know as a carer how much it takes out of me,some times I just want me time.years ago i use to cook for England,I realised…[Read more]

Thanks Ali and Theresa
Wednesday is D day barring further acts of god!
Love Helen

She did Dai
They had excellent seats and said it was well worth going.
She phoned tonight to tell me she has won a holiday for 2 for I week to the Bahamas,adults only with a choice of 3 islands,Her husband did not believe her,thought she was joking as she never thought to tell him she had entered .

Someone up there is looking after her.

Hi Beverley

Welcome to the forum. I'm sure you don't want to be here but they are a great bunch of peeople on here, you will get support, info and friendship. My hubby was diagnosed with smouldering myeloma 6 years ago and just started treatment last month. Come here and ask any questions, they are a very knowledgeable lot.
Regards Jean

Hello Eve

nice to hear from you we are going to the IOW next week with Hazel and Adam
so get the wellies out! The next London info day is in Oct so hope to see you there regards to Slim:-)
Love Jo x

Hello Dia
Sorry you not been well again I am most impressed with that GP lets hope you can see him when ever you go to the surgery next hope you feel better soon:-)
Love Jo

Dear Teresa
Poor Peter, and you, it must be very difficult, I'm sending you lots of hope that pain control is reached very soon. Don't worry about replying to post, just know we think of you.

A fried garden:-) I'm going to photograph the jungle that has grown here recently due to the monsoon type weather we've had. It is so lush and green, but…[Read more]

Oh dear Dai,
Hope you are soon back on your feet.
Love Helen

Hi Gary
As Tom said, same for me, many problems with food staying down so I took the anti sickness tablets and the omeprazole for months after my transplant, I've not lost that much weight but haven't put any on either. Only bland food worked for me at the beginning and there are still many things that I can't eat and the sight and smell of some…[Read more]

Hi Gary
Slim had his SCT on 13 may and came out Ist of june
He still takes ante sickness pills used to take Ondansetron but known to make you constipated,so now on Domperidone he was given 2 months supply by Kings,he takes them 30 min before meals,but does eat in between mealtimes.

If your sister is having all this and is still being…[Read more]

Hi Dee
At the beginning, while you get used to the drugs you are not fit to do much really. It's exhausting and anything feels like an effort. You also are coming to terms with the shock of your diagnosis and the effect it is going to have on life as you know it. From now on he will be a different person. He will be taking stock, prioritising and…[Read more]

Hi Ali
Yes I go back on a phased return thankfully. I'm not good at sleeping at the best of times but when ive been ill i sleep during the day more, i think its about having done lots of night duty in the past:-( but the revlimid I'm on as maintenance is on its own, no dex- that's the one which keeps you awake, so I find I sleep well enough if I…[Read more]