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

    Sorry, I got caught up in this other nonsense and forgot I'd intended to reply to you.  Have I mentioned I have chemo brain?

     

    I've had to take a lot of pain pills and muscle relaxers over my life (13-14 spinal injuries olus assorted other damage).  I've come to understand from my docs that some pain pills are more effective than others in working with certain muscle groups.  For my shoulder, I take Zanaflex.  When I take it, it helps a bit.

     

    Just something you might want to ask your doct about.

     

    Blessings

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

    Hello, I'm that dear woman from England.

    Sadly I didn't report back on here, but my mother passed away Sept 11th 2009 and I miss her everyday. It is still very hard to take in that she has gone from our lives and no amount of praying helped to save her. So do I believe in God or Jesus, I don't know.

    I didn't want to cause an argument on this thread, I just wanted honest stories about AML survivors to give me and my family some hope to pass onto mum. Sadly she didn't make it and I am so lost without her.

     

    I hope all you survivors out there, keep on surviving and most of all enjoy your life, you may only get one chance at it.

     

     

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

    Binnie,

     

    While it's wonderful to see you post, I'm sorry you had to walk in on this recent mess.  You certainly did not cause this situation, you asked a legitimate question and we've kind of taken in from there.  It's our responsbility not yours.

     

    I hope we'll see you posting again when the atmosphere is a little more friendly.

     

    Blessings

  • 183. Re: Any AML Survivors please post here
    HelenJackson Registered Users
    Currently Being Moderated

    I have not been on here for quite a while but I was very disappointed to find people on here bickering back and forth. We should support each other in every way, life is very tough. I have both leukemia and breast cancer, I fought and I won for the time being. God did help me but I am not sure why because I really do not feel like I am better than anyone else. Sometimes I feel guilty because I do feel so good. The thing we have to remember is that it could happen again at any time to any of us. I have read Nicole's caring bridge and I feel all of her pain! This board is a place for people to ask questions and get support. Please let us keep it that way.

  • 184. Re: Any AML Survivors please post here
    ncook Registered Users
    Currently Being Moderated

    Binnie,

    You began this thread, and I was the 1st person to respond.. hmmm we truly believed our mothers were survivors!  Just because our mother are no longer here on earth, they did survive.  I know you have helped me and we have helped so many others.  Because of our mothers we live to tell there stories and help other who are surviving here on Earth..  As I look at my post here it is unreal, maybe for you too!  I never thought my mom would succomb to this, but forever they will live on! Hugs to our Angels, nicole

  • 185. Re: Any AML Survivors please post here
    willowbayfarm Registered Users
    Currently Being Moderated

    Hi Binnie

     

    I just wanted to stop by this thread and say hello, I hope things are going as well as they can for you.  You really started something with this thread, eh??? 

     

    Please take care,

     

    - WBF

     

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

    HelenJackson wrote:

     

    We should support each other in every way, life is very tough.

     

    That's a pretty naive understanding of what a real community is.  In a real community, people bicker.

     

    I think that to pop in after at least a year's absence and tell us how we "should" behave is more than a bit presumptuous.  And let me ask you how supportive it is for someone to come here for the very first time saying, "I know God healed me," without any way of addressing the pain of those others who believe or want to believe in God but who read "I know God ignored your pleas for help."

     

    Not very supportive as I read it.  Not many people will speak up when someone tries to bully or discount others with their view of faith. They won't speak up for any number of reasons.

     

    I will.

     

    So, am I bickering or supporting those who won't speak for themselves against what almost amounts to religious tyranny?  In my mind, it's the latter.

     

    Now, you pop on and tell us how to behave?  Do you not even realize that is your own form of bickering?

     

    Sorry if that's important to you.  But if you don't like what's being said in a thread, no one is holding a gun to your head to make you read it.

     

    There is one thing I'm curious about.  Did you read all 13 pages of this thread or did you just read the end of this thread and comment on it?  If the latter, why this thread, why this time, why haven't you posted anywhere else?

  • 187. Re: Any AML Survivors please post here
    HelenJackson Registered Users
    Currently Being Moderated

    Tex,

    I did read all 13 pages and I have posted before. I am back at work and do not have the time that I used to have on the computer. I did not mean to offend anyone and was certainly not intending to tell anyone how they should behave. I am sorry if I offended you or anyone else. But, I am far from naive and in case you have not noticed, this is not a 'real community' but a 'supportive community.'  That is what I meant about being supportive of each other.

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

    HelenJackson wrote:

     

    I am far from naive and in case you have not noticed, this is not a 'real community' but a 'supportive community.'

    I usually don't make a big thing about how much time I've been here or how often I post.  But I think in almost daily posting for over five years, I've noticed a hell of a lot more than you have.  This is far more than a "supportive" community.  We laugh, we mourn, we fight, we console...that you want to pretend it is otherwise does not make it so.

     

    I know you've posted before.  I certainly remember you.  But you haven't posted in at least a year.  The fact you just joined the new boards yesterday and have (now) made two posts tell us that.

     

    I would never suggest anything other than you are completely entitled to spend your time on these boards as you see fit.  Just seems to me that if most people wanted to be supportive and had limited time to do so, they might seek other ways to do so than read a 13 page thread and then only complain about how it's not supportive.  I'm sure I don't see the support there.

     

    You say you weren't trying to offend in your first post.  Can you truly say the same about your second?  Seems your last couple of sentences were designed to piss someone off.

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

    Hi Belinda,

     

    Personally, i'm so grateful that you started this thread and I'm the first to admit that this is the only thread I've replied to.

     

    I will however in the future start posting on different forums. As I'm still a 2 time AML surviver, not to mention a 1 time BMT surviver and finally a bilateral lung transplant surviver (due to a complication of cGVHD), i'll now have to find a forum for those terminally ill and how they deal with that. Didn't even see it coming as I've just celebrated my 2 year BMT and recenlty my one year lung transplant. I was only in for a rutine check-up for my lungs when i was blindsided by the news that the AML (read SOB) is back and this time there is no treatment that won't shorten my life and leave me in terrible pain and that I could expect 3 months at the max.

     

    I must admit that I was surprised as anything when I saw some of the latest postings. I'm a so called christian, and i believe in miracles, but I also have HUGE faith in moderrn medicine having worked in the field for so long and I should be replying to Tex on this one, but I know he'll read this and he seems to have a lot on his plate at the moment. I just think that evert case is so unique that if we're lucky enough to find something that works for us, be it spiituall or otherwise then we should use whatever we can to get through, I'm pretty sure EVERYONE on this forum will agree with me, is one of the worst possible things to go through. I'm not doing a little jig at having to go down that path again knowing that there is no light at the end of the tunnel this time. I've made my peace with this, but what is absolutely breaking me into a thousand pieces is the thought of what my family has gone through and NOW what they'll have to go through. Just writing that makes me cry and I would do anything and i do mean anything to spare them the pain, but i'm at a loss and don't know what to do. So any suggestions as to what I could do would mean the world to me!

     

    Having followed those and the pain of those that have lost loved ones, oh golly, i've got to sit and blubber  badly here...Big breath, back agin, makes it even harder to bear. My pain will end, believe me, I want to live more then you can imagine, I'm 38 and thought that I had a lot more living to do, especially as I've been saved in the nick of time so many times. I hoped i had some unfinished business that someone/thing7entity wanted me to fulfill and maybe, unbeknowst to me i might have fulfilled? Who knows. But that my familys pain will still linger is giving me a stress head ache just thinking about it. It's frigging unbearable. Please excuse my language and that I'm all over the place, but i was given this news 48 hours ago and I'm still coming to grips with this. I haven't posted in ages due to a number of things, but in all honestly as that seems to be the special of the week. I've got to admit that Tex was very helpfull in answering many queries that i had and I know that my sister is a great Tex fan, I was a wee bit put out by some of his comments which I just shrugged off. The old sayng is true, you can't please all the people all the time. I'm not going to end this with a 'no offence' because with so many people here of course someones going to take offence. That's the short coming with net chatting that you don't get to see the 80% of non verbal body comunication that a disscussion contains and on a bad day, the smallest thing can be seen as the largest insult.

    But as said, I have to check out the other more relevant forums for me at the moment, Clutching at straws, but better then doing nothing.

     

    Seriously, this thread helped me a lot as I'm sure it has many others

    Thank you.

     

    I'll still be checking in here though as I'm still a surviour and will be until i'm dragged kicking and screaming off this mortal coil!!

     

    Love soldol

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

    Dearest Soldol,

    I just read your post to Belinda.  I wish I were in the same room with you.  I would want to give you a HUG!  My heart is sooooooooooooo hurting for you right now.

     

    Your  post put it all into perspective for me.   And beleive me, I can only speak for me.   You must really be a strong person to have been tru so much already.

    I so admire your loving way of your concern for your loved ones.  You asked Belinda for suggestions on helping your family with this. It sounds like she would be great to give you

    sugggestions in that area, as she is still greiving from the loss of loved ones.  I hope she can give you some comfort there.

     

    I was diagnosed with AML when I was 42.  Two years before that my Mom at age 66 died  from a stroke/heart attack.  Totally unexpected.  And just 2 years prior to her death my sister age

    41 died suddenly of a brain hemorrage.   Totally unexpected.    

    With both my sister and my Mom I always feel like I wish I had one more day to tell them how much they mean to me.  Just one more day.

    When i was diagnosed I was given a 50/50 percent change to survive if I took the treatment and only a few months if I did nothing.  All I could think of was my loved ones.  I took

    the treatment and had to rely heavily on my family to help take care of me for the next 6 months or more. They went tru a lot.  I did not like putting them tru this.

    I have two sons and they were 21 and 24 at the time. Neither of them were married at the time and I so wanted to see them start families of their own before i left this earth.  I wanted grand

    children so bad.

    Well, I lived to see both of my sons get married and both now each have a son of their own. I know how important my loved ones are to me.  That is why I am so upset for you right now.  I know I will not

    find the words to offer much comfort.  Apparently my posts seem to upset more people than they help.  But malice has not been in my heart during any of the few postings I have placed here.

     

    One of the most blessed things I received from my bedridden days was sure appreciation and love I felt for my loved ones.  I spent most of my time praying  and meditating.  And I remember I

    was always seeking the right things to say to my loved ones.  Because I knew that anything i said to them might be the last thing I ever said to them.

     

    Could it be that your family feels blessed to have this precious time with you right now?  Could it be that it does not feel like a burden on them, yet a blessing that they have your full attention

    and can say whatever their heart desires to you?  Could it be that both you and your loved ones are now receiving the best blessing of all, that is feeling each others love.

     

    I can almost guarantee you that your loved ones want nothing more from you but for you to be as pain free as possible and for you to feel their love for you.

    I doubt they want you to worry about them.    

    May you enjoy every day of your life!    May God richly bless you for caring so about your family!

     

    Thanks for your post.  You just gave us all a bit of reality here.

    Gone beyond

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

    Hello Soldol,

    Iam so sad to read of your latest news that the AML is back. It really is a beast of a disease and I hope one day they can find a cure for it.

    I really don't know what advice to give you for coping with it. I think my mum struggled as she was worried about my dad and us children . She used to cry when dad did the shopping, cleaning and looking after her. She said she felt a burden somedays and was worried that dad didn't have any time on his own.

    I regularly went round to sit with mum in her home so dad could do the shopping,. It gave him a break and mum had a different person to chat to,

    There were plenty of days when she just slept or felt terrible. She got the shingles which made her very ill, so things were awful for her.

     

    Even when she went into the hospice, she thought of us all. When we cried, she reached her hand out to comfort us. We never did get to hug mum much as we were still living in hope that she would get better and we were scared to get too close for fear of giving her any germs.

    She seemed to accept that she wouldn't get through the relapse, she always said she felt worse than when she first got diagnosed with AML.

    But I refused to believe it, me and dad were the strong ones in front of her. We made her smile, laugh a bit, we cried with her, we reminisced about old times.

    I think thats why I still find it tough as we had such hope for her. She was due to go on a new drug trial at the end of Sept last year, but unfortunately didn't make it and passed away just two weeks before.

    The hope we had was then unbearable, I still feel numb and regularly break down. I had a cry last night as it's Mothers Day today in the UK and I miss her so much.

     

    I think people cope in their own ways and my two brothers keep busy to forget the bad situations. Me and dad talk about it and cry about it. But then we have days when we can talk about mum and nice things come into our minds.

    For the moment though, it's those last few days which haunt us. We feel blessed to have had such a wonderful mother/wife and will never, ever forget her.

     

    I hope Soldol, you prove them all wrong and keep on fighting. But I also hope, you aren't in any pain and suffering. I'm not good with words, but I have a listening ear if you need me.

     

    Love Belinda

  • 192. Re: Any AML Survivors please post here
    ncook Registered Users
    Currently Being Moderated

    Soldol,

    I know you were not talking to me, but my sweet friend Belinda, but I feel like I need to post too

    First, Wow, you have been through a hell of a fight.. I cannot imagine what you have gone through and thought only 1 SCT was enough.  In a wierd way your post helped me to remember some things. You wrote about being worried sick about your family and what they have gone through and did go through.  The same feeling was true for my mother.  She battled AML for 3.5 years.  After a SCT in Aug. 2008, she had severe bouts of gvhd and about everything else you can think of, fungals, pneumonia, BK, CMV, shingles.... In March 09 she had most of her colon removed from gvhd and cmv.  That began what we thought was already a battle and new battle.  I will never forget the day in April when my mother cried and told me she felt like a burden.. She sobbed as I held her hand, knowing I needed to listen to her vent as hard as it was. She shared the only thing about dying she was sad about was how it would effect us and hurt us.  She too, was a Christian, an awesome woman with a loving and giving soul.  I stood there in that room crying too as I could not believe she was worried about me, dad, sis, and my brother more.  It was not true.. She was never a burden.  We never complained and did what we had to.  Sure there were family fights with other relatives who would mention money and taking time from their routine, but not from us who loved mom.  Honestly we would have gave up everything.  I had called off our first wedding date becase of mom and honestly I would have called off my job, lost my house, and whatever to have her.  I know many would say thats crazy and that is no way to live for yourself, but only each of us can choose our future and no one else.  So anyways, what I am trying to say is that your feelings and fears are so natural, I dislike the word normal

    On Aug. 2nd I stayed by my mothers side until Sept. 18 the day she passed.  I lost a lot of money of the top of my salary and now cannot pay all my bills for the next 5 months, but I have NO regrets.  As my father told me yesterday on the phone, he would have gave up everything to stay in that hospital room with her.

    I hope I have not said too much!  I feel for you, and honestly want you to know that if your family is anything like mine:) then I am sure they Love you, would do anything for you, and if that day would come they will praise you and love you each day more and more!

     

    Praying for a miracle!  love nicole

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

    Soldol,

     

    I hope and trust you know I think the world of you.  When I saw your post to Petra, I was really happy.  The news you've just shared breaks my heart and is making me feel ill.  I'm sorry you're facing this and I wish there was something I could do to take it away from you.  I have an inkling of what you're feeling.  I didn't have to deal with the reality but we all have to deal with the "what ifs."  I know that's not understanding, but I've been down the road far enough to know there aren't really any clear or good answers about what to do now.  I wish I had some but wiser people than any of us have not been able to find any.

     

    I am also sorry that you seem to have a dminished opinion of me.  I'm even more sorry that I seem unable to clearly communicate what my issues are regarding faith here.  I want to try to explain what they are one more time.

     

    I want to clearly state that I do not know everything about faith.  Indeed, the more answers I find, the more questions I have.  I do not presume to tell people what to believe or what not to believe.  I have no reason to doubt that Jesus appeared to the individual who claimed he did.  I have no reason to believe it, either, but I never cast doubt on that experience.

     

    Heck, I shared a private experience and I only know in my heart that happened.  My heart is not what I think with, though, and my brain is not sure it accepts it.  It doesn't know what to make of it.

     

    Anyway, while I might have private doubts about the experiences of others, I don't question the personal side of it publically.  However, and this is the point that seems to get lost as no one ever addresses it...

     

    I know that religion, faith and belief are subjective.  I know there has never been an empiricaly proven miracle healing.  So, when people talk -- in front of others -- about what they "know," I call them on it.  Because there is no way they can know, that so-and-so died because that was God's plan for his/her life or that God healed an individual.

     

    Now, why do I call them on it?  Well, I hate to point to your situation as it might seem insensitive to you and I don't have any desire to upset you right now.  But if I coould, this might be a learning point.

     

    Perhaps the faith of you and your family are okay with these types of statements, perhaps you believe and even applaud them.  Now, imagine a individual in your situation or a family in the shoes your family is wearing whose faith was vulnerable, or weak, or non-existent confronted one of those statements.  How do you think they would feel?  How do you think it would affect their faith?

     

    I can't say how it affects everyone.  But during my years in the pastorate, I dealt on so many occasions with the debris of broken people who crashed against the rock of what other people "know" to be true.  They know this, though they can't prove it.  They don't keep this unprovable "knowledge" in their minds and hearts where it belongs, they have to put it out there for anyone to read/hear.

     

    For many of those people, that's the straw that breaks the camel's back.  They lose faith, they become bitter towards God, perhaps even hate God.  Jesus taught us that we are not to do things to cause alienation between God and people.  Whatever else one might believe he did or didn't do or purpose he might have had, he definitely came to free people from the yoke of reiligious oppression.  He taught us not to stand between the little ones and him.

     

    If it needs to be said at this point, these statements get between others and God.  These statements place a form of religious oppression upon others.  These statements can be harmful and devisive.

     

    I often wonder if, perhaps, the problem I have with communicating this message is I get too involved in explaining it and the real message gets lost in the verbiage.  So I'm going to state it very concisely one last time.

     

    I don't care what you believe personally.  Believe what you want.


    When you state those beliefs publically, they can sometimes cause great spritual damage to people and really hurt them.


    I truly believe that a practicing Christian would do what s/he can to avoid causing damage to others.


    Please be circumspect when you're making unequivocable statements about God.  At the very best, we can only hope to know God as in a mirror.


    Finally, this isn't a requirement, but I'd like people to think about what they believe and what they say about their beliefs.  Too many people -- in my opinion. which is worth what it's worth -- don't spend much time thinking as they're too busy believing.

     

    If it still comes across as if I'm attacking people's individual spiritual experience, I really don't know what else to say.  I can't shut up.  Some of those people who are in precarious positions in their faith journey might be reading a particular comment and that comment might be the rock they crash against.

     

    None of this takes away the impact of what you've shared.  I continue to think people simply aren't getting my point and then they get snotty and misrepresent what I've said which, as Bill Engvall sais, pushes my jackass button.  I get frustrated and that does sometimes result in insults.

     

    I thank you for stating your thoughts in a nonconfrontive way.  And I hope we can reestablish the respsect and relationship we've had previously.

     

    Blessings

  • 194. Re: Any AML Survivors please post here
    KyGuy Registered Users
    Currently Being Moderated

    Soldol,

     

    I'm so sorry to hear about your diagnosis.  Please know that I'll keep you in my thoughts.  Don't stress too much about your family.  They'll just want to spend as much time with you as possible.  Feel free to come here and vent to us.

     

    Take care,

    Kelly

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