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  • thats-life-
    thats-life- Member Posts: 169
    edited June 2011

    kathy, i hear you there, and i feel the same :) you have made me think that maybe we could have a thread, or the moderators could make one, called something like "how i would like to be remembered on bco" I know that Konakats friends were eating chocolate in celebration of her life,  wanting to do something....we could then have one place where we have said how we would like the notification worded,  if we would like donations to a charity, or a slice of bco chocolate cake, or even a poem or saying or a message to be posted.....i think if we wrote these things prior to when we are coming to the end of the journey and unable to,  it would help our friends here to know what to do, or say, or just be comforted.....

    what do you all think of this idea?...we could put it to the moderators if you all think it would be a good thing?

  • imbell
    imbell Member Posts: 61
    edited June 2011

    If there is a choice I am going to Phecda, part of the big dipper. That's where my brother was headed and I am going to join him. Don't know why he chose that star; loved astronomy in general.

  • corian68
    corian68 Member Posts: 86
    edited June 2011

    Omg, that's a wonderful idea thatslife!

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited June 2011
    SSD is the retirement money you would have gotten when you would have retired at 62,65, it is not for poor people it is the money you put into social security since you started working, that is why people that never worked outside of the home does not qualify for it.  Yearly you get a form if you work) saying how much you put into SS....I applied for medical insurance because I didn't have any and got it under the "healthy women program" It is medicad and I use my access card that I get my food stamps on....
  • K-Lo
    K-Lo Member Posts: 826
    edited June 2011

    THATS LIFE: Beautifully put! How do we start the thread?

  • ma111
    ma111 Member Posts: 167
    edited June 2011

    K-lo, You are not too cynical to be an angel. I am one to say that we should not expect too much of ourselves. Our situations suck and we are forced to deal with it in an enviorment that the public thinks breat cancer is a curable situation and we should not indicate otherwise.

    That's life, I like that idea. I picked a card for my funernal that says, "don't cry for me I am in a better place". So when it is my turn, please eat choclate.

  • ma111
    ma111 Member Posts: 167
    edited June 2011

    K-lo,

    To start a thread go to the forum index. At the top of whatever forum you want click on start new thread.

  • thats-life-
    thats-life- Member Posts: 169
    edited June 2011

    thanks klo, corian, ma111...i thought i would be nice.. anyway......

    imbell phecda, thats so nice....we will be trully part of the universe...see you out there xx

    ma111 hope things are looking up a bit for you, thinking of you x

  • Mazy1959
    Mazy1959 Member Posts: 254
    edited June 2011

    thatslife..greattttttt idea

  • chrissyb
    chrissyb Member Posts: 11,438
    edited June 2011

    The thread has been created called 'How would you like to be remembered?' Please feel free to add your preferences.

    Love n hugs.  Chrissy

  • texasrose361
    texasrose361 Member Posts: 895
    edited June 2011

    About SSD- it is tricky because it only counts your work credits after the age 21 (who knows why?) and up until you become disabled. Thats why i didnt qualify for that because my work credits were in the wrong time frame- i stopped working at 22 to stay home and raise a family. But 16-21 worked guess it didnt count.

    Medicade is typical government insurance- things may take a while to get approved and also there are limited drs that accept it. My oncologist doesnt so i pay my co-pay from my primary insurance to see him, when i got approved for medicade i didnt feel like switching oncos in the middle of my treatment.

    Thanks chrissyb!

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited July 2011

    New thread on social security questions answered by a lawyer whose wife has BC. Knows his stuff------posting on a bunch of threads---------go to financial forum

     Can't make link work without trouble, not up for it.

  • texasrose361
    texasrose361 Member Posts: 895
    edited July 2011

    thanks!

  • ma111
    ma111 Member Posts: 167
    edited July 2011

    hello all,

    Sorry I haven't posted for a while. They decreased my dose of Taxoterible on the vaccine trail to prevent me from being hospitalized. No intake results in dehydration and malnourishment. I was discouraged and considering stopping treatment because I cannot stand being that sick all the time. Stand up get dizzy, drinking water hurt the stomach, how much are we supposed to withstand? My tumor markers have decreased faster than when I was on the high dose chemo for my first round and I was on Taxoetere, Carboplatin and Herceptin.

    I don't like to post when I am down and discourage others. But really, let's keep treatment resonable so we can function.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited July 2011

    Hi Ma, sorry you are feeling so down but perhaps the lowered dosage may give you a better QOL.....here's hoping.  It's good that the tumor markers are going down.  You can come here to post anytime, wether you are up of down because either way, you still need support.

    Love n hugs.  Chrissy

  • thats-life-
    thats-life- Member Posts: 169
    edited July 2011

    really happy to hear from you ma111....and hope we can help some way, i do not get discouraged by sharing :) ...talk away, im here to listen any time :)

  • ma111
    ma111 Member Posts: 167
    edited July 2011

    The reduced dose did help me feel better and I am able to intake at least fluid this week. But now, I am having trouble with my legs and feet. Both feet trip me and my legs a wobbly. I might skip next weeks Taxotere. It's the vaccine that's helping anyway. The markers are going down faster than last time. However I half to do some of the chemo or they kick me off the trail and I cannot have any more vaccine. I want to be able to walk and take care of myself or I will be a misurable person one would not want to know!

  • steelrose
    steelrose Member Posts: 318
    edited July 2011

    ma...

    I'm glad you're feeling a bit better. I hope you will regain some strength in your limbs as well so that you can continue on with the trial. Great news about the TM's! I am thinking of you and send you love...

    Rose. 

  • ma111
    ma111 Member Posts: 167
    edited July 2011

    Thanks ladies for the support. I also hope my legs get better quickly and thanks for understanding I want to walk. Some peole just seem to not understand not wanting chemo when we go throught he hell parts of it. So many times I am sick from it I think bad thoughts and think well, just let myself go throught the dying process and lets get this over with. I would rather live, however I want QOL so very much and some days just don't have it to my satisfaction.

  • ma111
    ma111 Member Posts: 167
    edited July 2011

    I have been e-mailing the study doc. I am allowed to skip the 3rd chemo this session and stay on the study. Today my feet and legs are still weak, but I will be getting another vaccine.

  • apple
    apple Member Posts: 1,466
    edited July 2011

    how would i like to be remembered? 

    as the director of the invisible choir.. (in the sky).

    Best of luck to you ma111.. may you recover.  My onc. suggested nutritious infusions (by infusion) at the cancer center if I got so weak and depleted.. I've not used that option yet.

  • blondiex46
    blondiex46 Member Posts: 2,726
    edited July 2011

    that is a good question apple, how would I like to be remembered?

    As someone who cared about the feelings of others and loved her children and grandchildren!!

  • chrissyb
    chrissyb Member Posts: 11,438
    edited July 2011

    I started a thread called How would you like to be remembered!

  • Foxlairfrm
    Foxlairfrm Member Posts: 126
    edited July 2011

    This is my first visit to this page, primarily because I was to chicken to see what others are going through. As I am getting more "comfortable" with this dx, I can now look at it. I'm not in denial, heck I knew a long time ago this was going to take me eventually. All my paperwork is in order. Living will, power of attorneys, final arrangements. I just can't bring myself to finish the actual will of who gets what. I so admire the others here who have written notes for special occasions, memory boxes, letters. I can't do it without breaking down in tears! I know I need to, I have 3 kids, a step-daughter and one grandchild due in September. How do you do it?

    DH really doesn't want to talk about it. As does anyone else. I'm worried as many have stated about the last weeks, the pain, how long will I be able to walk and take care of myself. The most dreaded thing in my mind for some silly reason is - if I have to go to the hospital, will it be the last time I look at my house, dogs, family as they wheel me out? Whew! I can't say these things to anyone else but the feelings are sometimes overwhelming. Not consuming, just occasionally popping in my pea brain. I had to get out of bed this morning because I started tearing up when DH rolled over to give me hugs. I laid there for a while and thought, what will he do without me, what will I do!

    Sorry for the Saturday morning blues, but for some reason I got brave, opened this topic and spilled it!

    Deborah

    Foxy

  • thats-life-
    thats-life- Member Posts: 169
    edited July 2011

    i hope you feel better for letting all that out foxy, i have those worriess too, but they come and go, and less often as time goes by, and i have realised that life is temporary for us all. a close friend died surfing the other day...made me realise i just have to enjoy the days i have on earth, do things that are important to me....i hope you have a nice weekend. x

  • chrissyb
    chrissyb Member Posts: 11,438
    edited July 2011

    Hey girls, these thoughts are always going to pop into our heads as no-one wants to leave loved ones.  I also think what will my DH do without me but I'm also reassured in the knowledge that whatever happens, after the initial grieving he will survive and that makes me happy.

    Love n hugs.  Chrissy

  • Foxlairfrm
    Foxlairfrm Member Posts: 126
    edited July 2011

    Chrissy, I know he will. My kids have said they will take care of him. I worry about him more because he went into such severe depression after my first dx. It was incredible. He was the rock through all treatments, with the kids, taking care of me and the farm. When they said you are in remission, he fell, and hard. Four years of severe depression. Lost his job, had to pour ice water on him to get him out of bed. He's great now, no meds and his happy old self. People that really know us are a bit more worried about him than me. Lol.

    Since the dx I have been showing him how to do things around here and started a calendar for general maintenance. The new fancy washing machine had the engineer stumped for a bit. Lol

    Now teaching him about giving shots and worming the horses. How to look at them everyday and make sure they are ok, wound treatments, ect.

    He will be ok, I'm a worry wart and a control freak! That's been hard, giving up a lot of control.

    Thanks for the support and hugs!

    Deborah

    Foxy

  • chrissyb
    chrissyb Member Posts: 11,438
    edited July 2011

    Deborah, the teaching thing must be in our blood as I've been trying to teach my DH to cook and operate the washer and dryer.  His biggest bugbear is that fact that I have not long ago put in a new stove and he has to relearn how to use the it.  

  • ma111
    ma111 Member Posts: 167
    edited July 2011

    Apple,

    I like the choir thing. They haven't offered iv nutrituin to me. I still have to hang on to something to walk. It's getting better.

    The one thing I havn'et much thought about is how I want to be remembered. Not badly of course.

    thats=life, sorry to hear about your friend. That does bring to the surface that anyone can go at anytime, even with out our dx. Sometimes I feel that at least we have a chance to get final stuff in order.

    Foxy, It seems to be common that DH don't like to talk. As you can see we talk about everything. It makes me feel better, however I need to post when I am down to help me feel better. Hopefully this site helps you out.

  • texasrose361
    texasrose361 Member Posts: 895
    edited July 2011

    thats life, sorry to hear about your friend. It does bring home the fact that anyone anywhere can go at anytime...

    I wonder how my husband is gonna get along when i am no longer able to do for myself or die... dishes, laundry, paying bills, so many things he needs to learn to do.... I am glad my daughter has started doing the dishes :)

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