The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 300. Re: Any AML Survivors please post here
    soldol Registered Users
    Currently Being Moderated

    Thank you MW,


    by no means have you you overstepped the boundries, as I said it was my 1st youtube contribution ever, so I'm grateful for all the help I can get. Didn't even think about adding an address to it

    I think this is the first time I've ever been caught on video whilst singing and dancing, both of which i love to do, but unfortunately it looks and sounds a lot different in my head then when i hear and see it. Funny that Don't think I'll be trying out for american idol anytime soon (snigger) Wonder what simon would say to my MJ slipper tribute were I can't even remember the words

    How are things going with your son. I think about you guys a lot and even though my sister and brother have been amazing and fantastic. I allways wished I had a mother like you that was so involved and knew everything that was going on. I'm sure stephen thanks you if not to your face, then through his heart every day.


    Have a lovely weekend


    Love sol xx

  • 301. Re: Any AML Survivors please post here
    soldol Registered Users
    Currently Being Moderated

    Hi Binnie,


    I'm sorry your not getting paid, that seems so unfair. You tried to get home and if by setting off a volcantic eruption in iceland was your cunning plan of getting  a couple of weeks extra off work, then as your employee, I think I'd be more worried  about you coming back to work

    I hope your knees get the rest they deserve and offer you some well earned relief. And I hope that you don't have to foot the bill yourselves for food and accomodation? It's not exacttly as though those that have booked for now are tearing down the place trying to get in?


    I think it would be a step up to say that my dancing was rubbish. I'd be thrilled to hear that


    Enjoy the extra time in the sun.


    Love sol xx

  • 302. Re: Any AML Survivors please post here
    pmb Registered Users
    Currently Being Moderated

    Sometimes I feel like I'm living in bizzaro world. Not only was my WBC count high, last night I woke up and was sweating so much that the part of my pillow was soaked at the area my head rested on. Yikes!

  • 303. Re: Any AML Survivors please post here
    Tex Registered Users
    Currently Being Moderated

    I laughed all the way through the video.  You don't look very sick.


    I'm glad all of you had a great day.  Hope you're feeling better than Thursday morning.



  • 304. Re: Any AML Survivors please post here
    Binnie Registered Users
    Currently Being Moderated

    Hello everybody especially Soldol.

    Still here in Spain, should have gone back to the UK today, but no such luck.

    Might be another week that we have to stay here and I´m hearing the sun may come out at last very soon.

    I´ve put some washing in and can´t get it dried for the rain. We don´t have a tumble dryer in our apartment.

    We own our apartment in Spain luckily so we don´t need to pay out money for accomodation. But as we need a car, that has cost us a fortune as the car hire companies are cashing in our misfortune as others are too.


    There are no flights for over a week and if there are, they are charging the earth. Nobody seems to be sticking together.


    Anyway enough of me. How are you, probably silly question, but just thoughtI would ask.

    Hows the fever, is it under control now. How are you feeling in general besides very tired. Are you eating, drinking?.

    I´m going to checkout your You tube video now if i can find it.

    Will inform you when I´ve seen it.


    Lots of love


    Belinda x

  • 305. Re: Any AML Survivors please post here
    Binnie Registered Users
    Currently Being Moderated

    Just watched it, but not sure how to get any sound in this cyber cafe. But the smile on your face made it for me. What a wonderful, wonderful lady you are.

    You don´t look ill, you certainly have the stamina and love of life, I feel so grateful for knowing you. I am amazed on what you can do and how you think of others before yourself Soldol, make me proud to know and love you.


    Belinda x

  • 306. Re: Any AML Survivors please post here
    brickandnanook Registered Users
    Currently Being Moderated

    can somoeone send me a link to sol site



  • 307. Re: Any AML Survivors please post here
    brickandnanook Registered Users
    Currently Being Moderated

    my husband does this too and it is common with this cancer the sweats and the temps, just some days it is more  then others and as your body fights it it will continue to do it, some nights the bed is soaked and he will do this for a few weeks or days then nothing but a light clammy sweat and then wham. and as it grows it will continue, but know your body is fighting it too.. I believe you can and I see my husband wills himself to live longer and blocks it out of his mind and yes to see the up and having a good time I question this whole thing, I know I have had him longer then expected and hope to continue too.. have you lost, can I ask any of your functions, he has and we know there is allot of brain involvement going on and he is in blast crisis right now his counts have gone array by leaps this week, does anyone know what counts to watch for, that will elevated or decrease. 

  • 308. Re: Any AML Survivors please post here
    mamawarrior Registered Users
    Currently Being Moderated

    Good morning soldol, don't know what time of day it is there or what season.


    My son is doing well, we went to a relay for life at his college campus on friday night. It is to raise money for the american cancer society. But they called all the survivors up on the stage and my big old boy was standing tall. They played the following song, fitting for all of you that have to fight daily.



    I hope you have a beautiful day today. I can't help but think your tiredness a few days ago was the infection. I hope you have many precious moments today.

  • 309. Re: Any AML Survivors please post here
    rellaann Registered Users
    Currently Being Moderated

    Hello Soldol,


    I don't have AML but I have been following this thread because of your story. I guess your story has greatly impacted me - I had a very vivid dream about you last night!


    You were smiling and your head was thrown back in laughter.  You had long, curled hair.  The dream was so vivid I thought of you all through church this morning!


    Anyway, may you rest well today - Cyndi

  • 310. Re: Any AML Survivors please post here
    Tex Registered Users
    Currently Being Moderated

    I'm glad you have a place to stay, Binnie.  My first thought was how do you extend the budget to stay on vacation an extra week?  Sounds very convenient to me.


    Hope things go well for you.  Do let us know what's up.



  • 311. Re: Any AML Survivors please post here
    Binnie Registered Users
    Currently Being Moderated

    No further news I´m afraid Tex. It´s hard work getting any info from anybody. The internet has been useful for information and the television, but thats all.

    We have looked into getting to different parts of Spain, then take a ferry home, but it isn´t as easy as that with the area we are in. We are 1.5 hours drive from the airport, then if we drove to say madrid the capital of Spain, we would have to pay an arm and a leg for the car hire again, then the journey takes 5 hours to Madrid.

    Then the ferry to France which costs a lot of money, then France to the UK. In between all that we would need hotel stopvers, it just never ends.


    Anyway Soldol, how are you?. Hope you are still around and smiling and moon dancing.


    Love belinda xx

  • 312. Re: Any AML Survivors please post here
    soldol Registered Users
    Currently Being Moderated

    Hi MW, at the moment it's 10.30pm here at the moment, so we're 6 h infront of NY in any case.It's slowly but surely turning into spring at the moment and eack morning one of the nurses has been out gatehering some of the first spring flowers so that eveyone gets a little vase with a spring flower in it for breakfast on their trays. They really do do eveything they can here as to make our stay as comfortable as possiable.

    I can imagine how proud you were to see your son standing on the stage. I got teary just watching the utube link that you added. Could certainly relate to it that's for sure.


    I'm feeling so much better at the moment that I'm SOOOOO lucky they didn't check me into hospital when I feal ill on thursday as I'd probably still be there,, and they don't allow children in the department, so that would have been heartbreaking at the moment. That's the funny thing about what's going on with me at the moment, is that I can see that I look very fragile and I bruise if somebody gives me a dirty look, but I'm in no pain for the first ttime in over 2 years as the morphine naturally works on my wicked eyes as well. Which is such a blessing that just that fact alone is enough to make me grin from ear to ear. So for the greater part, i'm still able to partake in a lot of what's going on, even though there are some scary moments from time to time. I think it was on friday that I got up at arounf 4ish in the morning to go to the bathroom ans felt that there was something in my mouth. I spat out what turned the sink into a set from a crazy splatter film. Gave me a huge fight as I'd spoken to the doc about kicking the bucket due to inner bleeding. Mt 1st thouht was this is it then!. My 2nd thought was pull your socks up sol and see what's going on. It was bright brigt well oxegenated blood which ruled out innerbleeding straight away as that is normailly very dark, close to black. After rinsing my mouth out and gurgling for 5 minutes and seeing that the blood was getting watered down until it was clear was a relief to see. It turns out that from when i went to bed to 4, I'd developed about 4 or 5 blood filled boils (for want of a better word) in my mouth, which must have all burst when i spat the first time.As i've been truely blessed with strong teerth from natures side and used time looking after them (as that's the one and only healthcare benifit that the government doesn't foot the bill for after you're 18.Oh boo-hoo, poor us, one thing we don't get for free unless of course it comes under surgery and a thousand other holes no pun intended there actually ) it's hard to live in a socislist country. I'll say no more on that subject as my sister entertained me for hours the other day about an american friend of ours that had started a discussion on facebook about healthcare and friends from all over the world were chiming in. Having it read to me whilst i was getting a blood transfusion was like being the soul attendee at a really good stand up club. We were in tears! But emotios weren't just running high, they were leaping over tall buildings and being mistaken for planes After been given 4 different solutions to use, it hasn't since (phew).



    Then today I had a strange turn and had to lie down for a really long nap, which helped and probably the reason I'm still up and feeling fine. But I woke up and their was a male nurse sitting in my room waiting for the antibiotics to go in. I asked him if he heard what was just said as I was unable to catch the last couple of sentencs. When he asked me who said them, I said Death. That that was our second conversation we'd had that day and we'd been interuppted both times. When he asked me if I spoke to Death a lot, I said no, don't be silly, it's not like talking to god who you never have to make an appoinmtent with and he never closed, but that it was really hard to get an appointment with death and he really didn't like being interupputed. So it was unfortunate that neither of us had heard the last thing he said and that i hadn't spoken to him in over a year as i didn't have anything to say. The funny thing was that in my dream he wasn't sitting in the comffy main chair as that's were the nurse was sitting, but next to him on a hard wooden folding chair and that he wasn't too happy about that! I remember vividly talking to him, but not the context of what was said. Don't worry. I'm quite aware that I sound like a complete nutter here so any thoughts there Tex?? I was still waking up, so not quite with it when I was having this bizzare  with the poor nurse that was simply speechless. It was more that he was in the room whilst I was musing away to myself.



    And it's amazing what a childs laugh and love can make happen. It can move mountains and make stubbrn aunties do the craziest things without giving it a second thought. My sister and I laughed so hard when we saw what she tapped that if there's anything in the saying that a god laugh will make you live longer, then I think I must have got myself a few days extra right there. As my soctor said, he EXPECTS to see me everymornning whilst I say that I hope to see him in the morning. Don't want to start getting greedy this late in the game


    I feel asleep for a couple og hours here and it's now definatelty time to hit the sack.


    have an intervju with one of the largests papers today. Should be interesting!


    Lots of love to all..


    Soldol XX

  • 313. Re: Any AML Survivors please post here
    mamawarrior Registered Users
    Currently Being Moderated

    That song made me cry too, soldol.


    I would be interested to hear tex's insight on your little episode too. I have never had a near death experience of my own but i have talked to 3 or 4 patients over the years that did (post cpr situation) and they all talked of such a peace during the transition that when they were brought back to life they went through a period of depression. That it was so peaceful to them, they almost wished they could have passed then. And they said they weren't afraid to die after that.


    I am sure when your time comes, God is gonna be waiting there with open arms. After all He needs some moonwalkers, strutting the streets of gold, those to bring smiles on the faces of others.   


    I hope you have a quiet peaceful night....and sweet dreams.



  • 314. Re: Any AML Survivors please post here
    gonebeyond Registered Users
    Currently Being Moderated



    Yesterday is gone, tomorrow may never come, today is a Gift,  that is why they call it  the PRESENT.


    You bring joy to my heart. I love reading your post.

    Gone beyond

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