CLL /mbl

[Vwcaliocean]

Hi newbie here and finding my way! Been a diagnosis with mbl in last few years but somehow after being unwell in recent months with higher than ever lymphocytes , am now better, but consultant has termed my by letter to gp as CLL no mention to me! Am confused how was that decision made? And why not informed??! Thanks for your help

[2003UK]

Hi and a great big welcome to our site. I am not surprised that you are confused and probably quite a few other thoughts and emotions.

Perhaps you need to contact your specialist nurse or consultant and ask those questions and any more you want to add including perhaps how you felt when you read the letter.

I always like to write everything down beforehand.

If you are happier going through your GP that is fine.

The main thing is you just look after yourself.

Take lots of care and if you would like to talk to someone at any point the Leukaemia Care support line is there for you

[Vwcaliocean in reply to 2003UK]

Thanks so much for your reply and that seems great advice so as i have the secs email ive asked for further clarification to see if ut was an error! But as u say was emotional time when i opened the letter! Thanks 😊

[DrunkJam_UK]

Hi, and welcome.

2003UK has great advice, as always.

I will say, you should *always* understand what is happening, so, if you were not aware that you were being diagnosed with CLL, it's definitely worth a quick call to your nurse specialist, or your GP, whichever you feel more comfortable with. I also definitely echo the "talk about how it made you feel" - that's important too!

I DEFINITELY recommend the writing things down thing though. I ALWAYS do a list for DH appointments (he is not good at remembering what they say, or remembering to deal with all the things)

Also, the LC phone line is super helpful if you have questions you want even quicker responses to.

[Vwcaliocean in reply to DrunkJam_UK]

Thanks so much fornyour help and yes writing things down sounds a good idea