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Theres nothing more they can do

No. of entries: 8 | Posted on 7 Apr 2008 10:21 PM

Theres nothing more they can do

  • Im 20 and have Non hodgkins lymphoma. After numerous treatments we were told last week that there was nothing more that could be done and my care was now palliative, just conrolling it and ultimetley terminal. They may do some radiation to help my breathing and I've been put on steroids but aside from that i'm having no more treatment. I'm so scared. Ive been in hospital for nearly 2 weeks with a apleural effusion (fluid on the lungs) and the lymphoma casued that - thats how they knew it had come back and means i can't have my Bone Marrow Transplant which was my one chance of a cure.

    I'm scared of dying, im scared of not seeing people gain. I'm scared of everything and i feel like noone understands, some of my friends still keep saying 'im sure you'll get better soon' even when i've told them the prognosis and it makes me feel worse when they say that. My family have been great and i feel like they do understand as much as they can and its hard for them as well in a different way.

    I just feel so lost and i think its all starting to sink in....

    Is there anyone out there in a simalar position? the doctors said they dont know how long i have. it could be weeks or months. it just depends on how fast the lymphoma grows. i feel like i have so much more to do in my ife, im not ready yet to go and leave people behind. I'm only 20 and i could do sooo much more... im so scared.

    sorry if this is rambling now..
  • Hi Mel, so so distressed for you reading your post. Which NHL do you have Mel? Can you not be put forward for any clinical trials? Are you still in Hospital, Mel I am here for you. Your friends are saying those things babe cos they probably dont want to give up hope. How do you feel in yourself physically? Is this a low grade slow moving lymphoma? Of course you are scared, wish I could be by your side. xxxxxxx Sarah xxxxxxx
  • Hi There

    I have just read your post and whilst I am not in your situation I really wanted to send you a huge virtual hug. Life simply isn't fair sometimes and can be a complete b*stard. My thoughts are with you.


  • There are no trials that the dr. has mentioned and im at one of the best lymphoma centres in the country so he wud know if there was any. i understand why my friends r saying it i just find it so hard to take. im still in hospital but am being let out on tuesday. i have mediastinal diffuse large b cell non hodgkins. unfortunetley its an agressive one, high grade. which is ususally good cos they respond to treatment better but i was unlucky.
  • i mean ill be let out on wednesday. not tuesday (i wish! lol)
  • Mel have PM you ok. am here if you need me xxx
  • hey am ok gonna try and get some sleep. will speak tomorrow. xxx
  • hi

    i lo st my husband to bcell lymphoma in october 2007 just wanted to say iam so sorry that you have been given such awfull news life is so unfair andy always said at least ihave had some life he was 55 when he died he always felt for younger people we met at chemo days i wish i could take your fear away andsay somthing to comfort you try and grab hold of everyday and do the things that make you happy spend time with the people you love . and care about you i am new to posting just reading the last few months but i just had to say somthing to you mellfc ifeel so much for you and your family ..
    bye for now