Hallo Nick, done it again came off this page lost a long script! Try again!
Nick, sorry to hear things haven’t improved much for you. The lack of mobility is so limiting,and constant pain drags you down mentally as well as physically as we both know. I have many of the problems that you have, tiredness and fatigue in particular. I hope things…[Read more]

Hi, Vicki. Just a quick one regarding the ball, where will it be held? Need to know how far away from me it will be before thinking about it.
Thanks, Jeff

Margaret, I have been – cycle 23 – of Dex and Revlimid for nearly two years. The symptoms you have described about sums up mine! Get all of those to varying degrees. This morning I can just about support myself standing up and walking, this will last for an hour or two. Breathless is getting worse, any activity causes it now.Interesting that…[Read more]

Hi, Phil, good to hear your good news,long may it last, gives all of us struggling on hope. Best wishes for a long future, Jeff

Hi Eric, I am just coming up to my Revlimid free week, I shall monitor it carefully and see how I feel day by day, and get back to you Jeff

Hi Mavis, thanks so much for your kind thoughts, it means more than you realise for me to know that there are people out there who care. I am fortunate in that I have a close family near to me who are supportive, but I don’t like to put too much on them, they have their own lives to live and way to make. My way of dealing with things is to get up…[Read more]

Hallo Eric, I was drifting through the posts on a steroid night and found yours. I am in about the same position as yourself with results, haven’t had a SCT, and am on the 21 cycle of Revlimid ( same dose and frequency ) and Dex.
I was interested in you saying about your fatigue, I have hit a real high level of this, really tired out, falling…[Read more]

Hi Tony,happy new year to you and all our readers,let’s hope for many more years of them. Well said in your post, it’s easy to forget all that’s done for us when we are sitting in the waiting room at LRI with appointments running 2 hours late!! It really is an interesting time, there is such a lot of research in so many directions, several sound…[Read more]

Hallo, all, I haven’t posted for a while, my middle daughter who I have mentioned before (she suffered a brain bleed a while ago unfortunately was finally overcome by the long term effects of her ongoing problems and passed away at the end of November, which although not a complete surprise wasn’t expected and needless to say was a big shock.…[Read more]

Hallo, all, I haven’t posted for a while, mypmiddle daughter who I have mentioned before (she suffered a brain bleed a while agounfortunately was finally overcome by the long term effects of her ongoing problems and passed away at the end of November, which although not a complete surprise wasn’t expected and needless to say was a big shock. Life…[Read more]

I took curcumin for many months while smouldering. When my wife died I sort of went to pieces and stopped several things, such as buying newspapers, watching Tv, and also taking curcumin. Within 2 months my Myeloma became active and I started chemotherapy. Coincidence? Who knows. Jeff

Hi, an interesting Post. I am in the situation of hopefully being offered a reversal of a stoma I ended up with after an emergency operation last year. My myeloma is in partial remission, and stable at the moment. To have this operation I shall need to come off Dex for a month or so, the surgeon flatly refuses to carry out the operation while I am…[Read more]

Hi, Andy, so pleased to hear of your progress, and your recovery from your hospitalisation. I had a similar ” out of it ” session while in I.T.U. following an emergency admission. On recovery, I was about to put pen to paper to write to the newspapers asking why our hospital was being run by a private concern, when I had to revisit the I.T.U. and…[Read more]

Hallo Andy, sorry to hear about your experiences, no doubt you met them with your usual resilience. Very pleased to hear of your recovery, I hope it’s not too slow, I know only too well the frustration continued tiredness brings with it.
Just keep taking it one day at a time, and as you say, each one we get through is a gift Best wishes,Jeff

Hi Susie, had a slight reaction to the first years jab, bit feverish and felt rough for a day or two, but since then have had no significant reaction at all Had this year’s last week. So maybe it’s one of these things that seems so common with Myeloma where we are all different, but I would go with the consultant’s wishes, mine was the same,…[Read more]

Rebecca,found the 38degrees petitions on the drugs and signed them all!!! Best wishes Jef

Nick, what a struggle you have had! I sympathise as I have endured back problems with two vertebrae more or less disappeared together with 5 1/2″ in height Have you lost any height? I had a vertobroplasty over a year ago which has lessened the pain and I can now walk a few hundred yards – big improvement so hang on in there! I have been very…[Read more]

Dusk, I think you are right about a campaign across all the
Cancer groups , it would be that more a powerful representation. I would suggest a petition similar to those set up by 38 Degrees, which have wide veiwing on the internet.( Ive signed several). These attract attention from those not directly involved too. Unfortunately due to family…[Read more]

Point taken, letter to Sir Allan Duncan to be composed and sent forthwith!! I shall wait until steroids wear off though.

Alex, please don’t think that I unaware of the political aspect of these problems. However I do feel that blaming/accusing individual politicians is a waste of effort, which hopefully can be better applied. What political party has ever carried out what they promised when seeking power. I would add that I am actively supporting the campaign…[Read more]