gina
I can understand your anger this is terrible your mum is entitle to ask for a change of consultant and hospital if this is possible for you I would do it, thinking of you
Regards Jo

Hi Sharon
You should never have got to this position on the trials,my husband is on myeloma X1 trials CTD.When you go in for blood they ask you how you are,you have to tell them the truth,and ask to see your myeloma nurse who should be there when you see consultant ring her up.

Yes you are having a bad time,and trying to look after two kids…[Read more]

Hello Bridget

I am so glad you feel enough to post we have missed you have the new bad back pains gone from your back, swollen legs are terrible when I first had the renal failure my legs were like elephants to say the least my kidney consultant told me to drink at least 3 ltres of fluid not just water and try to walk as much as i could this…[Read more]

Hello min

new kitckens are great we had one a couple of years ago it gave me the chance to have a good clear out in fact I chucked things i could do with now so beware,hows Peter doing is he feeling any stronger

Love Jo x

Hi Eve

It was a lovely part of wales yes there were loads of scousers in fact at first I didnt think we would meet a welshman we didnt until we got into into snodonia proper as for the weather we could not believe it what luck even got a bit of a suntan

Love Jo8-)

Hello Gill

Sorry to hear about stephens infection lets hope they can get it under control soon. I had quite a few canulas in the crook of my arm as they find it hard to get a vien so I know just how uncomfortable it can be fingers crossed this is a temporary blip

Love Jo

Hello Dia

glad you are now feeling a bit better lets hope the leg is not a Velcade problem and can be sorted out sinply:-) I have been reading up about the research done in american they have come to the conclusion that a lower dose of Velcade over a little longer period has had the same results but with a lot less side effects I hope our…[Read more]

Hi Sarah,

I'm up and about earlier than usual today… trying to give the leg some gentle exercise – we are off to the Garden centre for a quick visit after lunch and then home and rest it up.:-)

I know the inherent dangers but it has been like this – and reported on every occasion – for the past 4/5 weeks… I am just determined that…[Read more]

Hi Mavis, thank you for replying and your support. 🙂

I don't know why Dex has suddenly transformed… perhaps it can get on with its job quietly and more efficiently because it hasn't got to fight against the larger doses of Velcade… more harmony, less harassment… perhaps.:-)

I'm concerned with the swelling/discomfort in my left leg…[Read more]

Hi Dai and Min
This is the same with Slim.Pain in heel then calf.I took him straight to Ashford hos.it was Sunday,new DVT clinic had opened.A&E.had stupid nurse telling me there was no clinic,made her go and check,agreed with me but kept us waiting 4 hours by then DVT clinic closed.started treatment injections had to come back next day for…[Read more]

Hi To You All
I am awake at this stupid hour,so I thought I would pop in,have been awake for awhile so gave in ,up made a cup of tea and here I am,wish i could get in to a good book,but my prolific reading days went out the window when mm started,Slims happy about that,as he could not get a word out of me when my head was stuck in a…[Read more]

Hi Susannah I just want to add my vote for PICC lines they are great!! Quick to insert and as Tina has said painless Also they are completely covered so less risk of infection than with a Hickman. I have had 3 so far and none have given me any problems , so much easier than searching for veins in obscure places I hope the treatment goes well love…[Read more]

Hi Min and Eve well still got the legs of a bull elephant !! I do drink lots and try and be as active as possible and I am remembering to elevate my legs when I sit down too .My Macmillan nurse did say that Ferusamide wasnt that good as a diuretic as it causes kidney problems at higher doses , she also said if the problem continued they would…[Read more]

Dear SHARON I was in tears reading your post , how awful to have to put up withose side-effects and even worse nobody is listening to you . You are not being unreasonable to want some quality of life whilst on treatment especially as your family is so young . I think if I were in your shoes I would bluntly refuse to take any more Thalidomide ,…[Read more]

Hi Everybody
Jo that is a lovely part of Wales you went to,only problem to many scousers,LOLthey have all emigrated from Liverpool.surprised about the weather you must have just been lucky.:-P
Bridget you seem to be going through a bad time,I know when Slims legs were swollen the more time he spent on his feet,then rested them,it helped the…[Read more]

Hi Gill I dont know how I missed your post till today but I do hope they have got Stephens infection under control now. Hopefully he will be back home very soon Take care of yourself too Gill love Bridget x

Hi Gill.

I had a week in hospital the week before last with a high temperature – they took 2 lots of blood culture (making 6 in all) but the high dose general penicillin anti-biotics they gave me sorted the problem before anything showed on the cultures. (A Doctor told me that there is a 90/95% failure-to-show in all blood cultures and that my…[Read more]