[brochoParticipant]

Hi everyone hope you are all getting some lovely sunshine !! I just thought I would share my clinic visit with you and hope it gives you a giggle as I havent stopped chuckling all afternoon !! As some of you may remember I hav posted before about my paraprotein levels being totally useless when it comes to monitoring my mm, in fact when they were showing too feint to quantify I was cooking a very large new tumour on my spine !! For a long time now I have had the serum – free light chain blood test in the hope that would be more useful.Today I met a lovely new doctor who told me I had been the subject of a very long meeting to discuss how they could monitor me and in particular the effectiveness of Revlimid on my myeloma .When I asked if I had Bence-Jones the answer was no , so at least I know now. However what made me smile was when he came right out and said they decided I was just weird ! Good job I am not a sensitive little flower eh ! The upshot of the meeting was an mri is the only way to keep an eye on whats going on inside me , dont tell the minister for health but I think I may be having mris a lot more often and costing the nhs a fortune The bad news today was a significant rise in my light chain results for the first time , so I am a bit anxious as to whether Revlimid is doing any good and I wont be able to relax until I get the mri results Still its nice to know the medical profession view me as weird , at least they wont forget me !! love Bridget x

[kaychappersParticipant]

Hi Bridget
I always think it is nice to have a 'label' although I think I would have to laugh too at 'weird'. Im sure they ment it in the best possible way 😀 I was really worried when I had my MRI as I am claustrophobic, but I loved it. It took 1 hr 45 mins and I ended up tapping my foot to Frank Sinatra (which I got told off for). Hopefully they will be more certain and concrete with the MRI scan results. You may have to get a new name how about the tunnel woman or the in and out woman (just a suggestion) 😀 Love Kay x

[brochoParticipant]

Hi Kay yes I think you are right about a new name , that will keep me amused for awhile !!Perhaps others would like to add their suggestions . Kay I am really sorry I havent posted your hat yet , I have the memory of a goldfish , I will post it on Tuesday promise How are you feeling ? Hope you are enjoying the mini summer love Bridget x

[PerkymiteParticipant]

Weird, "YES" that is it, I just knew there was something different about you Bridget >:-) .

Kindest Regards

David

[GillParticipant]

Hi Bridget

Why didn't they think to ask your friends on here? We could have told them about you (and the rest of us) being weird:-)

Stephen seems to be similar to you with mm. PP not too bad but boney damage very bad.

Stephen's consultant is not sure which way to go. He meets with a group of specialists regularly (TBM tumour board meeting?) SCT for sure revlamid maybe, bendamustine (sp) if bendomustine can be funded (that makes me sooo mad how much does this country spend on self induced illnes?) or he may be accepted for a trial.

Good night fellow weirdos Gillxxx

[BADGERParticipant]

Hi Bridget

WHAT A WEIRDO :-S but hay it must help I think this is a werdo club at least it has got you noticed which is the main thing and it looks like you will get special treament so glad about that never mind the cost so much is spent on wasteful things you deserve the best

Lots of love Jo 😎

[MinParticipant]

Hi Bridget
Weird aye, does that mean your a one off or one of many weirdo's. Just having mm consignes mm sufferers to weird as no body knows what the heck it is!
Im sorry to hear of your rise in light chains; but is that significant if you don't have Light chains? Oh its all so complicated, and don't know if I want to break the public holiday mood (wedding fever still going on in my home) and give any thought to MM. Peter has had a few bad days staying in bed but now well so spoiling the visit by the grandchildren… A bloody pox on this myeloma… He has today made a recovery but its so unpredictable. There doesn't seem to be a week when it was the same as last week.
If your going to be spending some time in an mri I recommend humour for the earphones. Billy Connoly would be good but don't know if you would be able to lie still with him in your ears.
Im sending you good wishes that the Revlamid is just having a blip of some kind and you learn soon if its doing you good.
Love
MIn

[brochoParticipant]

Hi Min yes weird in many ways and probably always have been !! They seem to think the rise in klight chains is significant but to be honest I think they are fuessing really , who knows! What a shame Peter had a few bad days when you were so looking forward to the grandchildren coming. I agree thought the unpredictability is hard to live with , if I have a good coup;le of days and think goody now I can get on and do something then I am bound to have a crappy spell This weekend I retained so much water I couldnt get any shoes on and had dreadful back pain which I think was my kidneys , so I self -medicated and took 2 ferusimide and today feel much more normal , I cant understand why I retain so much water sometimes when I drink gallons !! Thanks for the tip about billy connoly I will borrow Jeffs i-pod next time love Bridget x

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