hello Jean
sorry frank is having a bit of PN its not very nice I was im afraid like Dia the mantra is WHAT EVER IT TAKES I will do it I was determined about it I know you will find it difficult to convince Frank but Ihope you can
Lots Of love Jo x

Dear Tom, Dia and Eve

Thanks for support and tips. Really don't want him to come off Thalidomide so I will keep in mind Dai what you said. Will have to wait until Monday to see what they come up with.

Thanks again

Jean xx

Hi Eve
sorry to hear slim has had a bad time of it that nurse should be sacked no other words for it hygiene should be upmost in every case but especially for people with poor immune systems really glad you can get him home he will be better of there
Lots of love Jo x

Hi Jean
Here are some tips that might help you

The anxiety is fairly normal,kicks in over silly things,Dex moments they are convinced they are right,so just remind him when he has taken his dex.Ormake a chart out of tablets then tick when anxiety starts tick under it,and you will see a patten emerge.
Massage seemed to help Slim and some one…[Read more]

Hi David

People on the Myeloma trials X1.are randomised by a computer after SCT.for maintenance therapy or no treatment,so it,s the luck of the draw.Great fun it is not.Love Eve

hi Karen
If your GP did an urgent referral you should have been seen with in 10 days.
Get on to your GP tell him that you have not had appointment through.This is the procedure.

Karen your pains could be a number of things,but if you start feeling sick or are in sever pain,you could have problems,after what happened to my husband I would…[Read more]

Just a quick reply

Min i think if you are not in a hospital that is dedicated to Myeloma your chances go down,as i said he is on a good ward fit for purpose,but when he was in A&E they were going to put him on a general ward,I told them side ward or private otherwise i take him home,someone got chucked out to provide bed.
The fact is the…[Read more]

Hi Vicki
Glad to hear that Colin is out of hospital. Frank says he feels like some aliens has taken over his body. He's going to ask for CDT to be reduced. Iif it's reduced shurely the medication won't work as well. More questions to ask consultant.

Best wishes to you and Colin
Love Jean xx

Thanks for the thoughts and good wishes Eve. Quite understandable about you not having time to post. You have such a long journey to the hospital. We are fortunate as the hospital is not far away so if we have to wait for medication or long wait we just go Home and then go back again.

First week over. Thought Frank had handled it quite well…[Read more]

Ha Wendy
I asked the same question ……. For the same reason……..l and she said, ' forever' cause when it comes back the mm can damage the kidneys before the blood results show relapse and the high fluid intake helps prevent damage … It's a bit of a bore though isn't it. I keep loosing count:-)
Love Helen

Hi Jean
Sorry I did not send you some best wishers,when hubby started chemo ,I know how much it was getting to you,its strange when the time comes,you just accept this is the way it,s going to be:-P My thoughts have been with you,just not had the time to post much with so much going on in our lives.

Same apply,s for any one else I have…[Read more]

Hi Eve

Glad to hear that Slim is getting home. Hope he goes from strength to strength.
Best wishes to you both

Love Jean x

Hello Tom and Keith
Well he is nearly out.collecting him at 10 pm.Turns out borderline,so pumped with antibiotics lots of fluid,now having bloods and platelets,Appointments have been made for Mondays and Wednesdays for the next 100 days to check bloods.

He must be getting better because he is grumpy left him watching football,
So lets hope I…[Read more]

Hi Andy
If it is any help Slim had Velcade, and found it easier than CDT.except more visits to the hospital.Twice a week and twice a day.Bloods then Velcade hrs later.
Velcade is having a remarkable effect on some people.
Good luck Eve

hello Andy

so sorry your SCT hasnt worked it is so frustrating because you must have been full of hope I hope the next treatment is the one for you
Love Jo x

Oh Kieth
Bl****dy hell I am so sorry I know it comes to us all but we just hope for a little bit longer, go away and enjoy your holiday and good luck for the next treatments this might be the one for you
Love Jo xx

Hi Jen

Sorry you have joined us but you have come to the best place.

First thing tomorrow ring Ellen she will be able to give you a quick run down and send you booklets.
Stop looking for a cause and and start learning as much as you can about the treatment,you are now on a journey and it is a big learning curve.
Myeloma is Staged and there…[Read more]

Hi Keith
I'm sorry its come back, but get away and enjoy the holiday as much as possible, and as Dai and Debs have said I hope the Revlimid does the trick, I'm on it too – without Dex , and everything tastes funny for me too.
Hang in there
Love Helen