HelenWatkinson

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Viewing 15 posts - 796 through 810 (of 989 total)
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  • #98916

    Helen
    Participant

    No Dai you are not wrong I put my previous post just after yours! So there must be a gremlin somewhere. How are you doing with the revlimid?
    Love helen

    #98922

    Helen
    Participant

    Hi Mavis and Tina
    I am on the myeloma xi trial and had the revlimid instead of thalidomide – they are similar drugs. I'm back on the revlimid as maintenance after transplant and it still makes me tired.
    The dex gave me sleepless nights and a few days of sleepiness and low mood after it finished, (you have four days on then a few days off it.) look out for any infections and contact the hospital if you have a high temperature, you don't need infection slowing you down.
    The cyclophosphamide can make you feel sick so you might need an antiemetic for a few days each time you have it.
    I took soluble aspirin as I was very low risk for clots and thrombosis but I managed to stay at work all the way through the chemo phase and only gave up when I started the gcsf injections prior to transplant.
    I had no hair loss either but my sense of taste went totally up the creek and high fluid intake is a must, both to protect the kidneys and to prevent the constipation, got to learn to love fibre!
    Good luck with it.
    Helen

    #92337

    Helen
    Participant

    Hi Andy
    Thanks, sorry I didn't spot you there and it was good to meet you too Keith. It was my first info day too and I was surprised at how much I enjoyed it
    Love Helen

    #92341

    Helen
    Participant

    Hi Chris
    Good to hear your stay in hospital was short and treatment progresses, look forward to seeing the wedding photos
    Helen

    #98791

    Helen
    Participant

    Dear Bridget
    Eve is right, what words can we use to share your feelings. You must be reeling with shock and sadness. I so hope something else can be tried to keep the disease down.
    Remember always how much you are loved.
    Love Helen

    #110181

    Helen
    Participant

    What a romantic! I think it sounds absolutely fabulous, i can just imagine the expression on your wife's face.
    Love Helen

    #110179

    Helen
    Participant

    Hi David
    skimmia and photina would be good too, I don't know leucothoe, in fact photina would be very striking, don't know how expensive to plant a whole hedge mind! Viburnum is cheap and you can strike it easily, but it's much less organised as a hedge and can be straggly. We will need to see photos of these gardens when planted.
    Love Helen

    #110177

    Helen
    Participant

    Hi David
    What about a mixture of viburnum, spirea, hebe and a couple of hydrangea. You have a lot of space there. We can grow all of these shrubs on our heavy clay soil and it will give you a variety of flowering phases all through the year. Or just stick with viburnum, dark green leaves lots of varieties generally with a tiny pink flower, needs little attention just a haircut with the shears every other year to stop it straggling.
    Good luck with it. I've just come in from the garden, pruned the pyracantha and cut down the dead heads, first gardening I've done for over a year, so this is a major improvement and I feel jolly pleased with myself!
    Love Helen

    #85547

    Helen
    Participant

    Hi Paul I'm much better today thanks, got to be better by tomorrow, I've got tickets for the theatre and don't want to miss out!
    Do you have siblings to collect an allograft from? And I think you are right to just get on with life as much as possible. I felt much the same about the treatment, it was a case of get on with it, toe the line and hope for the best. Curiously, the weekend before sct I was really upbeat about the whole process, I'd even go so far as to say excited at the prospect, even though I knew it might be an ordeal, I remember being very relieved that there was a bed available and not being able to stop smiling that it was finally happening!
    The cat Mac (the knife) still says 'no dog'
    love Helen

    #85551

    Helen
    Participant

    Dear Kerry
    How are you and Melvin getting on? Sorry to have hi-jacked your post a bit:-)
    Helen

    #85545

    Helen
    Participant

    Oh Paul that is one big hiccup! Oh how unpredictable this disease is. It is an effort in its self trying to remain optimistic when hiccups! happen. I do hope things are progressing well for you now, do you have a future date on the horizon yet? Or have you turned superstitious and not disclosing it in case it changes again?
    I am doing ok, they are pleased with my progress even though I think it is slow by many others standards, i have had a rough ride with a few residual problems but nothing I can't manage. I'm still on myeloma xi and the revlimid maintenance, it's tiring and my immune system is suffering a bit but not too bad, I'll keep going with it if I can. At the minute I have pneumonia, hence the frequent appearance on here again, …not been out of bed for a few days but I'm getting better and trying not to cough too much, it's the trying to sleep sitting up which is difficult! But I feel as though I'm drowning when I lie down. Anyway this is probably more information than you were expecting so I'll stop. Enjoy the dog, I do so much more walking these days I was contemplating acquiring a dog but the cat fixed me with a fierce stare and told me not to even think about it, so I haven't ! Perhaps I'll borrow one. Keep positive and in touch
    Love Helen

    #85543

    Helen
    Participant

    Hi Paul
    How are you doing? You must be close to sct now as I seem to remember you joining the site while I was in hospital having mine! Love Helen

    #98900

    Helen
    Participant

    Disappointing for you Dai, but hope the rev and dex works for you, love Helen

    #92270

    Helen
    Participant

    Thanks Eve we might just do that. We go for 3 weeks, to fit between trial visits, I'm really excited about it. This time last year I never thought I'd be able to go any where ever again, so I've already come a long way, in my head, so you have to just hang on in there and hope you and Slim get to go again, just think I shall be able to bore you all with my holiday snaps when I get back!
    Love Helen

    #85587

    Helen
    Participant

    Hi Andy
    Welcome, as David and Bridget have said, lots of post goes on in the early hours, dex, sleeplessness, worry, whatever….. We do it all. The mm journey is like a roller coaster ride, feels different to each one of us, can be bumpy or smooth…….. Hope you've got the seat belt on………..!
    Helen

Viewing 15 posts - 796 through 810 (of 989 total)