Dear Joe

I am so sorry for your loss. Please read Min's post "a week of firsts" It is my husband that has mm and sometimes I dread what the future will bring but life will continue in some way or other.

Please stay in touch on here. I know that everybody on here has you and your mum in their thoughts

Kindest regards Gill x

Hi Paul

IT took me a long time to get Slim to claim benefits,his thinking, was he was retired.he would not get anything.
All though it was costing us a lot of money on petrol, parking,and general things that I would not normally buy,all his clothes were to big for him,plus lots of extra washing,not to mention the carpet that was ruined.

I…[Read more]

Hi Mavis
Lets hope this is just a blip and your BMB and your test comes back negative,Giving your condition you will not go on the intensive pathway,so should have a break in treatment.Slims has injected himself for over 6 months,because of blood clots,so you will soon learn

He did not loose his hair,but it got very thin,and blocked plug…[Read more]

Hi Shirley
Just replied to a post on treatment you might be able to answer a few questions???? sorry to put this on you .Eve

Hi Penny

First may I say I cannot help you,but I have replied to boost you up to the top again ,otherwise some post get lost

I think I am correct in saying Shirley has had one from a sibling and there are a few people in the process,I know Shirley does not post much,so look out for a girl in a cowboy hat LOL.I think she is based in…[Read more]

Hi Chris
Congratulations on your forth coming wedding,you can say one thing about this B—-y Myeloma,it does put every thing into perspective.

Slim and I lived together for 30 years decided to get married before mm came along just never got round to it,finally set a date,but never made it as he ended up in ITU,so are marrage took place in…[Read more]

Hi Tina
Fluid is a must,I have the same problem getting water down Slim,I bought 2 plastic jugs with lids,and fill them up with week juice,and put in fridge,Slim found it easier to have a small glass,so kept it filled up constantly,he went through a stage of fizzy drinks,my attitude was anything that goes down,you will find your taste alter all…[Read more]

Hi Sue
So many years of fighting for drugs,again like Bridget it seems so unfair,I am amazed at these criteria they have,MM patients lay them selves out to become guinea pigs ,and they get choosy who they take,are MM patients part of the grand scheme or just a by product to be disposed off if you do not meet the criteria.
Sorry I sound so angry…[Read more]

Hi Bridget

Just reading you news,and wondering what to say,sorry does not seem fitting, it is strange the way,over time with this MM it becomes another hurdle to get over,and now you are being told there are no more hurdles,well Bridget if you are prepared to jump the hurdles,they should at least be prepared to find some.
I like most people on…[Read more]

Hi James

Good to see you have got through SCT and now,working on you general health,Slim my husband has not yet had SCT but after a few hiccups with treatment,found himself unable to walk with out sticks then only a short distance.
He started walking short distances often with me pushing a wheelchair just in case, went to one stick,then…[Read more]

Hi Dai

When I read you had missed out on trials,I put off replying as it just did not seem enough to say how sorry I felt for you,it just seemed so unfair,but hey! some times life is not fair,and by the sound of it you have picked yourself up and hey ho! on to the next treatment.
You cannot keep a good man down:-)

At least with the night…[Read more]

Hi Andy
Again welcome to the site
My name is Eve and I am a carer to my husband,I use to be a 3am person,but things have got a lot better,and my husband took my advice about seeing the doctor and taking an extra pill,to try and get some normality in are life.
He now takes a light ant depression tablet which makes his body relax so sleeps all…[Read more]

Hi James

My husband was a fairly regular visitor to the gym but had to stop when he was 53 because of mm The trainers had never heard of mm and could only suggest a regime that people with heart problems follow. It was not at all suitable for Stephen as he has collapsed vertebrae

David is right but swimming was out for Stephen as to his…[Read more]

Hi Eve

We live in Orpington and when I visited Stephen in Kings found the train the easiest option 10 minute cab journey to th station this end an a down hill walk from the station to the hospital more difficult back to the station but not lumbered with strange desired morsals of food:-) I hate driving in London and found parking was expensive…[Read more]

Hi Bridget and Helen

Bridget I do not know if they do accomodation,but I will ask,I have been told its the main trauma hospital in London,deals with anything bad that,s going down,The easiest solution would be go in one day have test then come out after 2 days of test,I am lucky I have a daughter who lives in Sevenoaks,but last time she…[Read more]

Hi Mavis and Tom
thank you for your good wishers.Tom I posted on your face book,don,t you want to be my friend:-( 🙁 🙁

Hi Bridget

Although I originally come from Liverpool,I am a country bumpkin at heart,so London was a bit daunting,Just cannot see Slim coping well with train,all though easier option,last time we went my daughter took…[Read more]

Hello Alan and Dave
Welcome to the site.

Dave pp levels at 6,it just might be a blip,Jo on here had food poisoning and her levels went up,only to go down again when she was better,its going to be a hard 6 weeks waiting for next blood test.As to new treatments as Gill said lots in the pipe line,

Alan there are lots of people who had SCT on…[Read more]

Hi Dave

As you will know mm is a very unique cancer and no 2 people seem to react to either the illness or the treatment in the same way.

Stephen was diagnosed when he was 53 . Unfortunately, although his SCT harvest was really good, he got less than 18 months remission. There were plenty of stem cells left for his second transplant but it…[Read more]

Hi Tina
No,no break,if your on intensive pathway,if you have bad side effects they can reduce dose,4 days of dex is very full on.If you have problems please mention them .At least you will only go to hospital for bloods,tablets and Zometa,if you hospital is well organised should be able to do it in 1 trip.

Try not to worry everything will fall…[Read more]