• Thank you Dai for your lovely reply. I will try to follow your very good advice.
    I am very sorry to hear that you are near the end of your treatment options but it is brilliant that you have such important conversations with your wife. Norman just wouldn't talk about his illness. I think with hindsight he was in denial and also very scared.…[Read more]

  • Hi,I'm having a really bad day and can't find it in me to even get out of bed. I cannot see any point in doing anything without Norman by my side. I am so lost without him.
    My daughters find it upsetting as not only are they grieving but they think they are not important to me because I am so down.
    The diazepan from the doctor isn't even…[Read more]

  • The abseil idea is good. My daughter did it last year and Norman insisted on us flying up to Edinburgh to support her. It was the start of his good time last year. She raised over £1,000 and I think photos are on the website.
    The worst bit is walking along the bridge she said.
    The hotel (Hawes Inn) at the bridge was a lovely place to stay.…[Read more]

  • Hi Anne,

    It seems incredible that three of us have lost our husbands on consecutive days..this disease is much more common that I ever realised.
    I too feel guilty when I have times where I get involved in a TV programme (or something) and forget Norman has gone. Then the next day I get overwhelmed by grief and can't believe I will ever feel…[Read more]

  • Norman would not speak about it – I wish he had.
    I just have to believe that he has gone somewhere where he will be waiting for me when my time has come.
    The alternative is even more difficult to bear and I am unable to cope as it is.

  • Hello Sue,

    My situation is so similar to yours. My husband, Norman, passed away on 22nd Feb and the funeral was this Wednesday, 6th March.
    My daughter suggested I went on this forum to try to get some support.
    Norman did contribute to this website a couple of years ago when he was diagnosed but I think he went into denial.
    He did pass away…[Read more]

  • hello everyone
    trying again as the first message re this subject disappeared into the ether of computor messages never to be seen again
    so herei go
    am looking for medical insurance covering this Blar,Blar,Blar illness
    previously i have used All Clear Insurances costing me £600 for a weeks cover
    If i have to pay this then i will although i…[Read more]

  • Good Morning Eliz
    unfortunately thise particular words dont appear on my discussion board
    maybe ineed to re-register?

  • hallo web team
    may i suggest that you contact chrissie to explain the process for starting a new discussion on the myeloma site

  • hello all
    thankyou all for the comments and info, bridget it looks like i would be going to UCL hospital also so info was helpfull if and when i decide to go down the SCT route
    the advise from my consultant is that i will have to agree SCT or i will not be able to have it later?? if i stay with the revlimid, this i dont understand!!!have made…[Read more]

  • havn't been on site for a while now although have read all
    last consultation at local hospital SCT and Valcade was mentioned as Revlimid worked well first 4 cycles now levelled out at 18
    so will be trying Valcade in an attempt too lower PP's further, prior to SCT at a london hospital
    can my fellow sufferers let me know which london hospitals…[Read more]

  • good morning Kaychappers
    sorry to hear about your painfull BMB
    i have had three to date the first was very very painfull
    after speaking to a friend who is a nurse she suggested asking for gas and air (although im not pregnant) which i duly did, luckily my consultant agreed the subsquent BMB's were completly painfree apart from feeling pressure…[Read more]

  • RE: Revlimid Maintenance Therapy
    22-12-2010 at 9:21 PM
    hello Amelie
    since diagnoses i have been on a trial with Revlimid (Lenalidomide)i understand that the dosage is low but results appear to be lowering of my PP which is what it is intended for, as i will possibly be have a first SCT in a couple of months time, Revlimid a diritative of…[Read more]

  • hello min
    since diagnoses i have been on a trial with Revlimid (Lenalidomide)i understand that the dosage is low but results appear to be lowering of my PP which is what it is intended for, as i will possibly be have a first SCT in a couple of months time, Revlimid a diritative of Thalidamild as a first line of attack against MM no serious side…[Read more]

  • strictlymyeloma replied to the topic Catch Up in the forum General 11 years, 5 months ago

    hello Bridget
    hope the rad goes well
    i have been on revlomid from diagnosis last july as a trial CLD with no side effects to date apart from a red nose/face for the first few days and at this time of the year guess what i am called by Jackie my wife,
    last week i was advised by my consultant that he thinks i will be offered my first SCT in a…[Read more]

  • hallo gaye
    what seems many months ago i had my first BMB
    and it hurt
    on the insistance of myself and my dear wife i were given gas and air at the time of the second and i didnt feel a thing apart from a mild pressure
    and the same for the third the advantage is it brings back good old memories of being slghtly tippsy but with a quick recovery…[Read more]

  • hello susan
    diagnosed mm just over a month and half ago
    sharp pin point pain in front right chest rib area felt this was first indication something wrong this then overtime radiated across the chest area to the left, pain killers failed to completely remove but subdued it a bit
    after ist dose of chemo and steroid tablets (first month)pain…[Read more]

  • hello debs
    so far to date i can say that i have had no serious side effect from the CRD to my knowledge
    i have had what i presume is the normal effects of MM, tiredness, pain moving around the torso,inistialy nights are worse with the pain causing lack of sleep and brain not working sometimes or maybe thats just senility
    took a while for the…[Read more]

  • just started second month course of Chemo Trial (CRD)
    in discussion with the consultant(and after reading on the internet)re possible bone damage thru MM asked if i should have this infusion at some stage (the response quite surprised me))" havn't you had this yet"!!! and yes i should have the infusion(makes me wonder a bit!!)as no recent MRI had…[Read more]

  • hello debs (1st time of talking)
    also on trial CRD combination besides all the anti this and that
    (need a backpack for meds)
    Diagnosed this year approx just over a month ago asked if wanted to do trial
    Revlmid (informed by med team normally issued after first relapse) trial is to see if issuing this drug earlier has any benificial effects
    am…[Read more]

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