Not Good News

This topic contains 20 replies, has 14 voices, and was last updated by  susannah 10 years, 7 months ago.

Viewing 15 posts - 1 through 15 (of 21 total)
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  • #106157

    Gill
    Participant

    Hi Fellow mmers be you patients or just us idiots that love you!
    Stephen went to see his oncologist last night for the result of his op (to remove a lump on his neck)and to discuss his general pp levels etc.

    I am sure that we are no different to any other couple. Tension was mounting and we had a silly row (about me pressing the wrong button on the remote and "losing sky"). He then told me that he wanted to go on his own.

    The good news is that our insurance will pay for the revlimid that the oncologist wants him to have even if only for 6 months.

    The devastating news is that his second recent SCT failed and there is probably only a 50/50 chance that he will survive another year.

    As you can imagine I am distraught. But Stephen being Stephen had already booked an evening out prior to this and we are going to a local restaurant tonight to enjoy a meal and to listen to opera.

    We are not opera buffs but is always quite nice to eat, drink wine and listen.

    Love from Gill xxxx

    #106158

    brocho
    Participant

    Dear Gill no wonder you are devastated with news like that!! But remember Gill that is just one mans opinion and Stephen can prove him wrong!!( you and Stephen together should I say) I think Stephen had the right idea about going out and enjoying yourselves and I hope it took your mind off gloomy things for a while Good news about the Revlimid and who knows how well that will work for Stephen ! Try not to dwell on that timescale Gill enjoy each day together , even if its having a good row!! If there is one thing I have learnt over the last five years it is never to accept that it is over , cos its not till I say so !! Hang in there Gill love to you both and we are all here for you Bridget x

    #106159

    eve
    Participant

    Hi Gill and you also Stephen
    I am sorry to hear the news,but your Stephen have the right attitude,I can see were your thoughts are,Stephen will choose his time Gill but I think he just might surprise the medical profession.i think he has lots of things he wants to do,;-)
    Slim wants to go fly fishing,will arrange it soon:-S
    It,s very hard Gill,I wish there was something I could say,to make you feel better,I wish you and Stephen happy times,I think Stephen might have a few planned for you both.
    Give my love to France.Eve

    #106160

    Gill
    Participant

    Dearest Bridget

    Thank you so much for your post. You know the phrase and you used a little bit of it "It's not over til the fat lady sings". Well the lady tonight who sang opera was not fat. She was youngish, pretty and of course I hated her on sight:)

    The only complaint both of us had (obviously only to each other) was that the sound system wasn't loud enough and the music did not "ring out??"

    We came home very full up and hooked out a couple of cds. We are lucky that, although we live in a semi, we have a very large conservatory at the back of the house attached to no part of anybody else's home, and sticking out a long way into our quite large garden.

    Maria Callas entertained us with everything from Mama Morte (sp?)through to the Habanera (sp?).

    Then we got silly and played "Just Want to Dance the Night Away" by the Mavericks anyone else remember that one. It was always the last song played when we used to go to Gran Canaria every February for a quick week of sunshine after a winter of working too hard and feeling fed up.

    We were not night birds even then. We used to go up to the apartment, sit on the balcony with a glass of wine and wait for that song. We were lucky we were far enough up not to be bothered by the music once we shut the patio doors but close enough to sit on the balcony and listen when we wanted to.

    Great memories

    Love from Gill xxx

    #106162

    DaiCro
    Participant

    Hi Gill,

    I agree that the news is devastating… but I'm surprised that the prognosis is so definite. What if the Revlimid works? Velcade is reactive, i.e. you take as many courses as you can and then hope for a bit of remission but Revlimid is proactive… you take it, it works… repeat ad infinitum (ish).

    Stephen has had some pretty rough luck with his treatments but that is not to say that Revlimid should be the same. Unless your consultant has some reasoning that can determine that Revlimid will fail after an initial period… but that doesn't make sense to me… and then there is Bendamustine and Pomalomide etc.

    Its not just wishful thinking on my part… between them, the treatments still available, plus those on trial and those about to come on trial could extend the prognosis to 2 years and who knows how much more?

    I hope that Stephen confounds everyone and finds that he and Revlimid are Tickety Boo together. Janet and I met a woman at the Nottingham INFODAY in March who is coming up to 6 years on Revlimid… after everything else failed pretty quickly… and while that is monstrous good fortune it shows that you only need to find one treatment that suits to provide a bit of hope and longevity.

    Dai.

    #106161

    brocho
    Participant

    Hi Gill I am so glad you both had a good evening, just what you needed I think!. It just occurred to me Gill I am the fat lady!!!! haha Heres to many more nights boogying the night away love Bridget x

    #106163

    Min
    Participant

    Dear Gill and Stephen
    I am so so sorry to hear about Stephens prognosis, I know how desperate you must feel and how much you will be pinning your hopes on Revlamid. Rightly so, no one knows what will and what will not work with this bast*** disease.
    Peter was on it for a 6 months and in the 1st 4 months the results were briliant we went on our 40th anniversary holiday due to Revlamid. But by the time we returned home it had stopped working.
    Truth is his strain of mm was just too virulent for any medication and the more medication he too the weaker he got. Which is or was such a shame as when he was not on medication he felt so much better.
    I cant give you the advise you need as only you can decide what happens from here, other than enjoy and savour each moment as if its your last then there can be no regrets. Sod the dont drink motto if it makes you happy have it.
    Make happy memories that will be relived and if the Revlamid works your in a win win situation.
    I would like to respond with a private message gill but you profile does not allow it!
    I am sitting in bed having had the 1st night of seven hours sleep in months while I listen to a gaggle of canada geese that have been roosting on the migration path outside my daughters home in the middle of Warks the peace and tranquility together with two active granchildren have mended my spirits somewhat and feel almost normal!
    Luv
    Min
    ps Gill Revlamid is a tablet so you can flee to france for a while and not worry.

    #106164

    jmsmyth
    Participant

    Dear Gill

    I have been following your posts on Stephen and was devastated to read about Stephen's appointment results. I cannot offer any advice as I know nothing about the medications that can be perscribed. I can offer my very best wishes and prayers and hope that the revlimid works.

    My very best to you both.
    Love Jean xx

    #106165

    Gill
    Participant

    Thank you all for your kind words. It was right to go out for the evening. It doesn't change the news but with Stephen's nagging and a dollop of my own common sense I realise that Stephen is right when he says if I dwell too much on the prognosis neither of us will get any enjoyment out of whatever time we have.

    Thanks for all your support it really is appreciated Love from Gill xx

    PS to Min I don't block pms but I think you have already realised that you have to be signed in to send them xx

    #106166

    Gill
    Participant

    Public pm to Eve.

    I tried to pm you but I cannot send it (after me saying you couldn't pm if not signed in !)

    I have just realised that when I first posted on this I saw Bridget's reply and thanked her. It looks as though I completly ignored your reply but it has not long appeared on my screen after this lots of people posted (thank you all) so I did a post to everybody.

    I don't know whether it is gremlins back in my computer or on this site but it is all very strange.

    I would hate you to think that I ignored you deliberately Eve
    Love Gill xx

    #106167

    Nettie
    Participant

    Hi Gill

    So sorry to hear Stephen's 'no so good news'. We all dread it but the prognosis is not necessarily certain. MM is such an individual disease that they cannot be that sure – the next treatment may the right one for Stephen and things could look far more positive. You have the right attitude – get out there and enjoy yourselves, leave the fretting to the professionals!

    love and hugs to you both
    Nettie xx

    #106169

    Perkymite
    Participant

    Sorry to hear the bad news Gill but I am with Dai on this, what he says does makes a lot of sense.

    I have been living with the Sword of Damocles, like us all I suppose, and I have now passed my first ?Sale by Date? (July 1010). I feel good and have just been given 3 months clearance before my next appointment. So do not give up just ?Damm the Torpedoes? and keep bl88dy well going.

    Kindest regards ? vasbyte

    David

    #106170

    gina45
    Participant

    I am sorry about your news Gill. I really hope its wrong and that there will be something that comes up. There are new treatments on the horizon, so hopefully one will be here for Stephen very soon.
    You take care
    Gina xx

    #106171

    brocho
    Participant

    Hi Gina how is mum feeling? I hope this lovely spell of sunny weather has lifted her spirits a bit. Please say hi for me love Bridget x

    #106172

    BADGER
    Participant

    Gill and Stephen

    so sorry about the news I know your not quiters this next treatment may be the one we all have to fight, fight to live I know stephen does that all the time keep your chin up
    Love Jo

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