Hello everyone, I'm 51 and was diagnosed with CLL 4 months ago and on watch and wait. I have always been very healthy but while on my honeymoon in November I became ill and it lingered on with a tiredness that sent me to my general practitioner. He took blood tests and the elevated counts concerned him so two weeks later he redone them with the counts being a bit more elevated. Out of caution he referred me to a hematologist who confirmed that I have CLL. I am finding reading the posts here are very helpful, Thank you all.

7 Replies

  • Hi Mommeekins,

    A warm welcome to our supportive community where we embrace you into our fold but are sorry you find yourself here. What a dreadful time to find yourself fatigued and unexpectedly unwell on honeymoon and having previously been healthy, this diagnosis must have come as a bolt out of the blue for you! 

    I'm so pleased you're finding the posts and information useful because it's a steep learning curve initially and a bit of a curious cancer to fully understand. I don't have any information about your staging or plans for your care so it's difficult to offer anything other than general advice but my advice would be take time to come to terms and understand all this before widely disclosing. This can fortunately be a very slow burn condition and it may be years and years before the CLL becomes problematic, if ever.

    I hope you're coping emotionally and have good support round you. Please feel free to ask any questions and share any concerns you may have. It's very soon after your diagnosis and the psychological impact can be enormous.

    Sending best wishes and hoping your particular brand of CLL bores rather than bothers you! Whatever it does, don't let it dictate or rule your life because being newly married, you have a lot of wonderful living left to do! 


  • Hi Mommeekins,

    Sorry to hear the news. I hope that you find comfort in the community, and that your panel comes back with a favorable prognosis.


  • Hi Mommeekins. Sad that you had to find yourself here but glad that you did because I know how much help and information you will find on this forum. Initially, I was EXTREMELY frightened by it all and it took many months for that feeling to slow down. My son suggested this forum and it's been a life saver to me. Ask any question, however silly it may seem, because someone will be able to help. Sometimes, it's just nice to vent your feelings to supportive people who actually know how you feel. Lovely though it is to have good friends and family, I often find myself protecting their feelings rather than showing my own. Find out as much as you need at your level of health before you try to understand everything. Mostly, don't waste what you have today by worrying too much about tomorrow  (a piece of advice I was given here) There is much hope for the new treatments, remember that. Peggy

  • Peggy4, I already find myself looking out for my family's feeling first and keeping mine all bottled up. I know this is as scary for them as it is for me.

  • Hi Mommeekins,

    Welcome to the community. You may feel a bit like a rabbit in the headlights as you come to grips with the diagnosis, but that will pass. There is a lot of experience and knowledge here that you can draw on. Please ask as many questions as you need to. I've found this site an incredible support over the last three years since diagnosis, particularly in the run up to treatment. 

  • Thank you everyone for the warm welcome :) It's nice to be able to chat with and read post from people who truly understand what you are feeling and how confusing this all can be.  On a good note the doctor is very positive, He hasn't said a stage but my but my CT scan was very good with only one lymph node under one arm slightly enlarged, and I'm told my blood counts are doing good. I'm not one to be down for long so I'm just thinking of this a bump in the road :)

  • Exactly, a bump in the road.  Don't let this diagnosis consume you.  Live your life as usual.  I've learned this after my diagnosis and pondering over what could be.  I will tackle this if and when I need treatment.  Until then...best wishes to you 

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