Hi Foxy1. Yes it takes a while to get used to the diagnosis. I think we’re definitely the lucky ones being on ‘watch and wait’. I decided to be totally open about it. My kids know, but not my grandkids. I believe the key is that if each blood test we have is ok, we can feel safe. I just want to feel safe and enjoy every second of my life. All the best. Dermot
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Also, have a look at the Chronic lymphocytic leukaemia (CLL) Support Group. They have been brilliant for me.
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Thank you I will and as you say as long as each blood test is OK, just keep living our lives
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Hi I was diagnosed with Chronic lymphocytic leukaemia (CLL) about 1.5 years ago no one told me I was in hospital for infection and they said I was fine when discharged ! I got my records from hospital because I had recently fainted so needed my blood results. My chart said I have possible leukemia, kidney stones on Rt and anurism on left renal artery!! I went to hematologist she said why are you here ? Now really confused and numb! I am numb all the time with doctors! I said my mom had non Hodgkin lymphoma and she said yes Non do you know what that means ? So confused why am I here ! She gave me a piece of paper about leukemia and took blood! Never went back then went to another big establishment for leukemia and I am on wait and watch ! I have lips burn stomach burns worst is face have crystals under my skin so painful and disturbing! So happy I found this form to express myself! My levels are abnormal but they never called me to talk about my results feels so worthless! I have symptoms but nothing I can fo so frustrating! 
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Oh @Karen I am so sorry that you have had so much lack of communication.
I am so glad that you have found us and you are certainly not worthless on here and a valued part of our forum family.
This is a place where you can say what it feels like to be you.
I attach the information from the Blood Cancer UK website for you
Chronic lymphocytic leukaemia (CLL) - what is it, symptoms and treatment | Blood Cancer UK
Non-Hodgkin lymphoma - what is it, symptoms and treatment | Blood Cancer UK
Active monitoring (watch and wait) | Blood Cancer UK
The Blood Cancer support line is there for you on 0808 2080 888
You say that you are numb with doctors, my mind also goes blank.
My trick is to write down everything I need to say, including symptoms and their severity, feelings and practicalities and be pleasantly assertive and not leave till I get the responses I am looking for.
My levels are abnormal and I have been on ‘watch and wait’ which I prefer to call active monitoring for 20yrs and I count myself as a very lucky girl.
Please do let us know how you get on and I look forward to hearing more about you.
Thanks for having the courage to post.
Be very kind and look after yourself
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Thank you so much it means alot to have support!! 
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A big welcome to the forum @Karen.
As I was reading your post I really felt for you. It’s sounds like things have been very confusing and communication poor. No wonder you have so many questions!
Like you, I am on active monitoring, but for lymphoma. The best advice I was given was to write down all of my questions and take a note pad with me to write down the answers. Is there somebody who can come with you to your next appointment for support?
@Erica has given you links to some really useful information and I will post the link for the support line in case you want to contact them to talk things through.
Please keep posting. On here you can say how you really feel. Your forum family are here to support you 
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Link as promised
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Thank you so much !! I just was told I was yelling at the Nurse and team through texting because I used an explanation mark after my sentient when I was told the Doc would call me back and never did! Wow so shocked and yes I have my Husband who comes and wants to be involved but he doesn’t get it so still alone!! Anyway appreciate you thank you again ! Karen
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