Bewildered
Posted on: Thu, 13/03/2008 - 14:10
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Bewildered
my cousin has been receiving treatment for NHL for just over 12 months. He had stage 4 and has received chemo and stem cell treatment.
One month ago we were all informed that the treatment that he had received had worked and he was in remission. (cue big celebration)
This week, after only 4 weeks of being in remission we are told that it is back and he has between 1-3 months left to live????
My reason for this post is to see if anyone can help me make sense of above.
How can they get it so wrong as to put my cousin in remission one week then 4 weeks later predict he only has 1-3 months left to live.
I have searched the internet but I cannot find the miracle cure that I want to help but if there is pls let me know
thanks gem
My heart goes out to you and your cousin, what an awful confusing time for you all. The helpline on here is very good, they will give you some very good advice on how to cope with whats happening. Please be very wary of so called "miracle cures" some very unscrupulous people are operating on the internet and really do not care about anyone or anything as long as they extract your money, and you should always check any supplement out with your cousins oncologist. please let us know how your getting on, we'll all support you on here
Alisonxxx
i am not positive, i am realistic
I know a little bit how you feel (read my story if you want to see another patient with several rather vital misdiagnoses!). It may be, however, that this "3 months" is another miscalculation. I was told I had 3-4 months last May, that I'd get a list of serious conditions pretty soon, and - bye bye! However, here I still am, nearly TEN months on. My cousin has just flown over today to stay with me, and we are going out and doing lots - and we thought last July would have been the LAST time. I send my heartfelt sympathy to all of your family. If you want to talk to me later, or your cousin does, this website is the place to find me and lots of other understanding people (g Alison above!!). xxxx Penny
Penny
Thank you both for your replies and support, it means alot.
I will have a look at your story Penny, thanks.
I do worry about the "giving up" aspect, as in my cousin will not maintain the positive attitude he has had during his treatment. I do believe a positive attitude helps.
Will post more when I know more.
Thanks both for caring. x
Hi Gem
I'm so sorry to read about your cousin. My partner has just been diagnosed with stage four lymphoma too and is waiting for his treatment to start.
I think I can understand how helpless and angry you might feel about the change in events. It must be so overwhelming for your cousin and your family.
I think there's a real balance between not giving up hope but also trying to come to terms with something so emotionally painful.
Perhaps your cousin's consultant could say where else in the world major research into your cousin's particular type of NHL is happening. Or he/she could suggest any clinical trials your cousin could take part in.
Have you asked your cousin what he needs from you? He might just need some company/someone to talk to.
I've always believed that when someone you love is seriously ill you should do everything in your power to help them. But that also means thinking about what is within your power to do for them and not beating yourself up if you can't do everything.
I'll be thinking about you over the next few weeks.
x