Hi and welcome sorry you have had to join us but you have found the right place for info and support It sounds as if you have a good medical team looking after you which helps a lot if you have confidence in them It does get easier as begin treatment and get to know the ins and outs of various treatments but I remember how confused I was initially…[Read more]

hi hmason

Lot older than you but based in Deal Kent,Try 50 age group a lot out there,My partner is in 6 th day of treatment on myeloma X1 trials he got ctd side.He comes under the same consultant but not seen the big man'Worth trawling site as I found it very helpful and reassuring there are people out there who have been on this journey a long…[Read more]

Hi Eve I am glad you find this site helpful ,I know its a lifeline for me .You didnt say how long your partner has been diagnosed but if it wasnt long ago you are bound to still be in shock and trying to come to terms with such a life changing illness But it does get better , life may be different than before but nothing stays the same forever. It…[Read more]

hi everbody

I would just like to tell you all how helpful I find this site,I never mention my partners name because his daughter does not know!! long story.

It is very hard sometimes I understand his feelings but as a very open person it is hard,he is just the opposite of me.If your can not do anything about it why worry about it!!!!

I…[Read more]

Hi Ruth what an awful shock for you no wonder you feel frightened and alone .If I were you I would avoid searching the internet for information as a lot of whats out there is out of date and can be frightening .I agree with Jet the specialist nurses are great and very easy to talk to If you dont feel thats right you can ring the info line on this…[Read more]

Haha lets just settle for irreverent anarchists!! Bridget

Hi Gill sorry to hear Stephen is having a rough time . When I was on velcade the fatigue was a major side-effect, I wasnt able to stay on it for long so I dont know if it gets better over time Fluid retention was also a problem for me , I think it is the combination of dex and velcade Does Stephen take Ferusimide ? It would be worth getting hold…[Read more]

hi jonny

Its my partner who has mm,I have found this site very helpful it has certainly calmed my fears.my partner is in his 5th day on myeloma x1 trials he got ctd branch.I can only say he is better than he has been for many months; Jets story is so similar to my partners.

I can only advise you to get things in place in advance,eg blue…[Read more]

nicki
I have only just joined this site,and to hear there is light at the end of the tunnel is good news.We are just starting are journey ,one we did not expect to be on.It gives me hope for the future,one thing I have learned from this site is to be positive,I thank you all for that regards eve

Hi Nicki how lovely to hear that Sam is doing so well and your life is back on track Good luck with the move and I hope you have a wonderful time in Poland love to you both Bridget x

Hi Jon welcome to our merry little band , yes we are mostly merry ! Your head must still be spinning but its great you were able to get a fairly early diagnosis. In my experience, I was on the Myeloma X Trial , you get the very best of care whilst on a trial and hopefully you will sail through it without too many hiccups. Have you got your pain…[Read more]

Hi Eve I really feel for you , it sounds as if you both have a lot on your plate at the moment The trouble with dex is that as a patient its very hard to admit it is the dex making you behave badly As hard as it will be try and ignore your husbands bad temper if you can , if you say to yourself its not him its the dexAbove all though make some…[Read more]

hy everbody

When does this kick in my partner is only 3 days into dex,this morning he went off in a mood,because i did not want him changing bedroom round,complaining I should have had fitted wardrobes by now,

Aa well as coping with illness,I have had kitchen fitted,next bathroom ,double glazing planning consent to sought out,and when i told…[Read more]

my partners the same,stabbing pain right side,On oramorph 10mg a day plus paracetamolbetween oramorph.As he feels better he is doing more.

He has only just started first round of chemo,and have been told there will be no pain!!!!!!! he is a lot better than he has been for months.the pain at the moment seems under control. it is early days,we…[Read more]

Hi Ann wwelcome although I am sorry you are having to join us . I agree with Michelles advice and hopefully you wont wait too long Rrecently I was going to be referred to an orthapaedic surgeon to see if they could help with the pain in my back Apparently there are minute fractures in myeloma that can be the cause of pain but they are hard to…[Read more]

I can only tell you when my partner had his problems it showed up on ordinary x-rays.the skull and shoulder blades,the reason they do mri scann on spine is because there are so many little bones its hard to see on ordinary x rays.

my partner was admitted within 10 min of first appointment.48 hours later he was like a new man,all test were…[Read more]

To gill and also dave.

Thanks for info on publishers calender I will try that.
The pills are something 10 cyclo 1st 8th 15 day 20 dex run for 4dayd thalid 2 everday,plus sickness pills.that is just from hospital the rest comes from doctor.We have been told that they have put him on the intensive pathway.This is from a man that never took a…[Read more]

Great progress, David, in spite of those paraprotein numbers 🙂

Ain't it great to be told you don't need to see the consultant for that long!! Enjoy the 'holiday'.

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I second the ice cubes trick!!

I had my SCT at Bournemouth hospital and the nurses there had a stash of ice pops and lollies which they made me suck continuously over the whole infusion period.

AS I don't eat sweetened things on the whole it felt a bit weird to eat all those sugars (half a dozen ice pops plus about the same quantity of…[Read more]

What a great picture, David!!

I have saved it to use in another forum. 😉