hi my name is gordon i have has nhl for three years and keep gettinf more worryed about how long you can have treatment i have just found out that i need a bone marrow transplant they tested my sister to see if she was a donnor but unfortnet for me she was not a match !how long dos it take to get a match ? do they keep givin chemo ?and i was told i would never get rid of my nhl it would be with me all the time am really scared now a have being through so mutch it really has took my life away from me !
FormerMember
Dear Gordon,
I can't help you much as I don't know a lot about nhl or transplants or how long you may have to wait. But I will say this - I have cml (chronic myeloid leukaemia) which I won't get rid of and will have forever. I know it sounds like a dire prospect when you're first told but honestly, life goes on if you let it. I'll be on medication for ever. The stuff I'm taking at the moment may well stop working at some stage. But on the other hand, it may not. I'm just grateful to have a magic pill that's keeping me alive and well and able to live my life.
I don't know how long you'll have to wait for a bone marrow transplant but I wish you the best of luck that it's soon. And when you have it, I expect you'll feel a lot better and more optimistic. As for how long you can keep having treatment - well, how long is a piece of string? Have the treatment as long as it's doing some good and be thankful for it!
Please try not to be afraid and worried. I hope somebody will come along who knows a lot more about nhl than I do and is able to reassure you. In the meatime, live each day as it comes and try to do things that will take your mind of your illness.
Sorry if you got a half unfinished message as l was saying to you, l also have the same condition as you (lymphoma non hodgkins)
l am stage four and like you my family (six Brothers and sisters) came up with no match, its a very scary thing to get your head around but its a good cancer for controlling and there are lots of different things the doctors can do. l am not letting this thing take over my life, l have to work with it but you must go with the bad days and really enjoy the good. Recently l have had a harvest on my stem cells and after second time round got them, l am still being put on a waiting list for a Donner. During Christmas l have to go into hospital for five weeks for Gene therapy to buy some time, don't let this thing make your life hell, when I had my first chemo l was in remission for six years, anyway hope you find some way of getting your head around this, hope to hear from you soon
thank you very mutch for writing to me its very nice of you ,i do try to take my mind of things but just some times i get so worryed and my head just ticks away. i really do value my life for my kids and i have learnt loads of stuff that i would not have done. and just try live day to day ! thank you i hear what you are saying . gordon
hi ronnie most of the time i am more positive it was just a big shock when they said my sister was not a match my head just would not stop ticking away and got myself allupsett it is hard work top keep your mind of it but i really do try. thank you very mutch for writing to me it does help all the best to your self and thank you .
