susannah.

  • My beloved Michael lost his long fight against myeloma at 1am this morning,he fought to the very end.He was my soul mate my best friend and my husband I will miss him for ever.
    I want to thank you all for the support and kind words you have shown me over the years.
    All my love
    Suex

  • Dear Dai First chance ive had to look at the site in a long time but my daughter has made me sit and take five.
    Not good never had the chance to visit the hospice, Michael went off his legs altogether and he has been in bed about 4 weeks now. I still tried to cope alone but it was impossible. hes such a big guy. Both my daughters moved in to…[Read more]

  • Dear All Michael is asleep at the moment so I thought I would give you an update. The last couple of weeks have been mixed, I havent managed to visit the hospice yet as we have been snowed in, but hopefully now the weather has changed i might get the chance.
    As you all have said th mac nurse and the district nurse have been brilliant I cant thank…[Read more]

  • Hi All Sorry havent replied, what a week!Saw the GP Friday (needed a sick note for work been off with stress since Michaels prognosis) He refused saying i was now a carer and this could be long term? I looked at him and then he asked what the oncologist had said? I wanted to say he doesnt see one but I was to upset, although im 60 I have supported…[Read more]

  • Dear All Thank you so much for your replys, I would like to wrap you all up and have you posted to my address, sounds silly but would love to meet you all.
    have made the decision to ring the Macmillan nurse on Monday. Gill the hospice sounds good. were the same as you we have nowhere to put a hospital bed or a hoist for the shower. At the moment…[Read more]

  • Hi Tina just read your post,how lucky is your brother living in Cornwall. Michael and I spent our last "normal" week away last June in Falmouth, we both loved it so much. I am so pleased you had a lovely time
    Happy New Year
    love
    Suex

  • susannah replied to the topic Bendamustine C1. in the forum Treatment 11 years, 2 months ago

    Good Luck on the Bendamustine Dai

    Love
    Suex

  • Hi Tina I dont know what I would do without this site you are the only people who understand what im going through. There are so many questions I want to ask but then I think do I want to know the answers. I feel myself start to panick when there is just the two of us especially at night. Who do I ring if anything happens 999, the district nurse,…[Read more]

  • Hi All Thank you for your replys, Christmas wasnt to bad i kept myself very busy so didnt have time to think, but New years Eve not so good. Went to bed about 10 o clock just lay awake then listened to all the fireworks going off thats when it hit me, Michael was sound asleep (mophine Induced) I just let the tears roll, time is passing so quickly…[Read more]

  • Dear Mary Thank you for your reply, it must have been so hard for you. I cant imagine what pain you are feeling, my heart goes out to you
    Love
    Suex

  • Dear Dai So sorry your in hospital again lets hope they clear the C diff altogether this time, and you start the Bendamustine with a clean slate

    Take Care
    Suex

  • susannah replied to the topic Neutropenia Sepsis in the forum General 11 years, 3 months ago

    Dear Keith What a few ,weve had a few of those with sepsis, terrifying
    to say the least,.Take care of yourself

    Thinking of you

    Suex

  • Hi All thank you all for your replys, i feel so much better when ive been on the site. Tina and Eve if you read this post im having problems with my emails.
    Michael had to have a blood transfusion yesterday the ambulance fetched him in his weelchair, as he struggles to walk now, but he seems quite well today very tired though.His pain ismostly in…[Read more]

  • Hi Eve Thank you for replying to my post, its 5pm here so i would think its about 4am there and hopefully you are both fast asleep.
    ive never heard of a driver?
    And your so right about making the first move with people, I spoke to my neighbour yesterday and she came round with some homemade scones today, which i might ad she has never done…[Read more]

  • Dear Tom you are such a lovely man,thank you for my hugs.
    Tina and Gill you have both been through so much, it really does help when I read your posts.
    Managed to get some fresh air today, even if it was just to fetch a news paper, but it did clear my head a little.
    Regarding Michaels pain. his GP is now in control of that, well hes on mst and…[Read more]

  • Hi Sat in my lounge time 5.55am been sat here since 3.30am. Michael is asleep, he seems to be asleep more than he is awake over thepast couple of weeks, its probably the morphine hes now on a very high dose as he is in so much pain.I sit here looking at the christmas tree just wanting to take it down, the christmas cards, although very few this…[Read more]

  • susannah replied to the topic PE in the forum Related conditions 11 years, 3 months ago

    Hi Charlie My husband has had 3 DVTs first caused by Thalidomide, he was given clexin (think thats the right spelling such a long time ago)injections, he then went onto warfrin, which he has taken through all the trials he has been on apart from the last one which was very new and they did not know how the warfrin would react to the drug so he…[Read more]

  • Hi Dai

    Sorry to to hear you have had to stop Revlimid. I hope the Bendamustine
    works well for you

    Good Luck
    Love
    Suex

  • susannah replied to the topic Waiting in the forum End of Life and Grief 11 years, 4 months ago

    Hi Thank you all for your kind replys. Michael has been getting alot more pain recently, but he has coped really well. The worse thing is the panic attacks he cant let me out of his sight. He cannot walk very far but ive managed to take him out in the car, at first id take him to a coffee shop but his appetite has almost gone although he has a…[Read more]

  • Good luck Keith fingers crossed
    Love
    Sue

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