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  • 18 months to live

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    Old 08-20-2018, 04:37 AM   #1
    kat17
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    Unhappy 18 months to live

    cananyone please give me advice I nowere to turn or ask whilst I was away with fami9ly in may2018 I collapsed was taken to hospital my father paid privately whilst there I was diagnosed with multiple myeloma and systemic sine sclerosos and told I had approx. 18months to live, I dischargted myself came back home I not been out house since 1st june 2018 im so scared on the 17thAug18 I received a letter off the hospital I was in saying they are removing me of their systems now as I am nolonger in the area and no contact has been made I have copies of my file which they have sent me it again states prognosis 18months I do not want to die I have history of depression now dieing scares me

    Last edited by Administrator; 08-20-2018 at 08:11 AM.

     
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    Old 08-20-2018, 08:39 AM   #2
    yayagirl
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    Re: 18 months to live

    Dear kat,

    That is very scary news! I'm so sorry!
    Didn't the hospital refer you to any kind of after care or support? I find their diagnosis and treatment of you appalling. Can you get care somewhere else? They must have cancer treatment in Wales.

    Listen, we all will live as long as you are supposed to live. My doctors didn't think I was going to live since I was born through all sorts of injury and illness that usually people seldom survive, and now I am 69 and none of it was that bad to deal with. DO NOT pay attention to anyone that decides how long you will live. They are not God that they can know.

    Get your focus on being there for your children, as much as you can for as long as you can. Do all you can reasonably do on your end to support your health. Learn what is OK to eat, what treatments that will help, etc.

    What about bone marrow transplant? There are foods to avoid. All sorts of info is out there on the internet. I have seen people lay down and die and others that choose to do what the can do to help their condition and they thrive in spite of all odds.

    Hon, you don't need to give up on your life just because someone else makes a judgement call. Research, research, research. Do this for your on sake but also for your children's sake. There is hope, hon.

    Contact the Mayo Clinic to learn more.
    https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/diagnosis-treatment/drc-20353383
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    Old 08-20-2018, 11:16 AM   #3
    kat17
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    Re: 18 months to live

    thank you your words made me cry happy cry tho. I need to c my gp they didn't offer nothing in ways oof treatment as when I was told I wen for freshair and never returned and hidden away since I will go to gp xx

     
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    Old 08-20-2018, 11:19 AM   #4
    MSNik
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    Re: 18 months to live

    Dear Kat,
    I am very sorry that you are going through this! I just wanted you to know that I have a dear friend who was also dx with Multiple Myloma and was given 2 years to live....that was 17 years ago. He traveled all over the world and found treatment in many places; the most recent in Germany via a bone marrow transplant donor...he is still very much alive and doing very well! He fights every day for his health; however, is still living each day fully.

    You need to get all the information on your disease as possible. There are agencies which can assist you. Please call the hospital- they have dismissed you because you checked yourself out and they don't know if you are still interested in hearing what they have to say- but if you ask for help navigating this, they will steer you in the right direction.

    Try to be strong! It is not over until you decide to give up all hope. Until then, the immediate future is in your hands.
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    Old 08-20-2018, 12:28 PM   #5
    yayagirl
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    Re: 18 months to live

    Dear kat,


    Of course that was a huge shock so you recoiled. Now you rise up and fight for your life and do all you can as an example to your little ones.

    I find it appalling the staff at a hospital treated a patient that way!
    When you are stronger I hope you make a fuss about the insensitive blokes that gave you a death sentence.

    Hon, there are things you can do to help yourself. Be sure to read all you can on reputable websites. Never give up. Yes each of us will pass from this life some day. But others have no right to predict for us when that will happen. Don't tolerate anyone 'predicting' your future.

    For your family and for your own self, put a smile on your face. See your doctor. If you have to have referrals, ask to see specialists to learn what you can do for your own self, then do those things.

    Love,
    __________________
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    Last edited by yayagirl; 08-20-2018 at 12:30 PM.

     
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    Old 09-22-2018, 02:50 PM   #6
    NoCrystalBall
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    Re: 18 months to live

    The one thing to keep in mind is that everyone is different and there is always a chance. New treatments are being discovered every month, and I wouldn't give up without a fight. If there is a 5% chance for survival, this may be you. Don't give up.

     
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