Hi Everybody
Just got in,I have been down to the sea front walking and thinking about Bridget.
I hope she is there with her family looking on,I hope her daughters are strong.
They say things happen for a reason,and this is one of the times you think life is so unfair,Bridget is no longer in pain and to me this must be the blessing in her…[Read more]

Hi Dai
You are so right, there was only one of her posts where I thought she was in pain and never a direct reference, so selfless and calming, and cheery really, I read the posts on the site for a few months before I felt able to contribute myself, she was one of the reasons I felt comfortable contributing such personal feelings.
Love Helen

Dear Dai
Bridget was a god send to me at 1 in the morning, unable to sleep, another woman of similar age, talking about nothing and everything, she was my little voice in the wilderness, during some very difficult days when you can not bring yourself to share how you feel with anyone else. With Bridget you didn't need to say much -she knew how…[Read more]

Hi Keith
I've had no end of fatigue and disrupted gut since being on Revlimid. Now I'm having a break after the latest bout to see if it settles down. I will still go back on it if I can even though I think the side effects are quite tricky to manage.
Love Helen

Dear Andy
I can't add anything to the questions already said, other than look in the Trials Tracker here on the site to see what is available around the country and ask to be sent there if that is possible or feasible. You will have to be quite forceful and firm I suspect if that is a direction you want to take.
Good luck
Love Helen

Hi Mavis
I'm so glad to hear the drugs have done the trick, I took about 4 weeks to feel 'normal' again after the RCD which I had. Hope you are running around soon.
Love Helen

Dear Rosie, Tom, Vicki and Eve
Thank you very much for your kind words, you do make me feel better. I've spent the last few days catching up on sleep and watching 'Revenge'. Total escapism!

Am off the Revlimid for 2 weeks now, body holiday to make sure everything settles down ok, and if not, it's more investigations, so yes, I've got my…[Read more]

Well Andy what can I say its almost if I have started a ball rolling,did not mean to just found it strange so many treatment with out real progress or time for progress.

If I was you I would ring up your consultant and ask to see him!!! he should be able to give you time away from the clinic!!!!! don,t go on chance.

Have your list of…[Read more]

Hi Cinzia
Hello and welcome,
i think like me a lot of people have missed you joining the forum,because unless you have a related condition you tend not to go in to that subject.

My post now is just to say welcome and hope you have a good response.Eve

Hi Helen
Hope you are feeling better,not nice at the best of times,but must be an added worry with Myeloma even when in remission.

I can understand you wanting to get back to normal,and go back to work,there is a nurse on the chemo unit,who has had treatment,her words were[ i just want to be normal],I did not ask much just talked about her…[Read more]

Hi to you all
Tina I can only tell it from Slims side,had a few problems with his bladder side,it was an infection,antbiotics given.another side effect way down the list.
I must admit I gave in with Slim at one point tried commode plus bottle,to him it was a no no,I kept telling him be ok once he was feeling better,he was not having any of…[Read more]

Hi Gail
I am so sorry Gail,you must be beside yourself with worry.
Some times people choose there own fate and it must be awful for you to watch,it does happen some people choose,not to fight.
I can only imagine what it must be like for you as the carer.Howard is a very brave man,his decision must have been hard to not fight and leave his loved…[Read more]

Hi Gail
Howard can fight back but he needs all the help you can give him.
You do not say if he is on a ward or in ITU.!!
If he is on a ward get the dietician on board,and be there at meal times and feed him,even if it is only a few mouthfuls plus stay by his side and make him drink,its hard I did it for 22 days.Take anything in he will eat.the…[Read more]

Hello Mavis
thats wonderful news see God was listening i did'nt have any withdrawals from CDT just a bit from the DEX lets hope your mobility eases and you can get around much better
God bless Jo x

Ha Mavis
Thank you
I went to our church anniversary party yesterday on my way home from hospital and one of the girls said the floods and tempest on Thursday were a sign I should heed! If we get a plague of locusts I will leave work 🙂

How is your treatment going, you have been quite quiet recently?
Love Helen

Hi Mavis

Great news. Hope you get a long long remission. Don't know about withdrawal from CDT as Frank is on the 2nd cycle of the first time.

Take care
God bless
Love Jean x

Hi Eve
I remember feeling that I would never be able to eat anything again last September.
Everything was an effort and I lost an awful lot of weight. I've lived mostly on special k, bread and butter, chicken and broccoli with chocolate and shortbread since. I also ate soup every day as it was a way to get fluid in as well. I was also very…[Read more]

Or Not!
I was due to return to work last week. However, on the day, found myself in hospital again:-( Gastrointestinal infection of unknown type, they have discharged me now and I'm sitting here feeling very sorry for myself as I have been reduced to a pile of weak incompetence. I find it very difficult to come to terms with the length of time…[Read more]

Hi David
This is a good idea,
I used World First who are on the Myeloma UK site. After your previous advice to me about including ALL the things which have ever been diagnosed over the years, I did that and we were both insured for around £180 for our New Zealand trip. They do not ask about staging which does make it easy to fill in the form.…[Read more]

Hi
I agree with John and Sue
Slim never got it until after he finished Velcade,he had Amitriptyline 5 to help him sleep,then when he was in Kings they gave him 25 and said it was a form of PN,I bought the Palmers cocoa butter Slim very seldom complains of his feet now.
I also get Polytar for his skin and must say since he washers in it,has…[Read more]