CLL (Diagnosed 2024) - currently on watch and wait. Is there anyone else with this diagnosis?

Diagnosed in 2024, went into hospital with a swollen leg, also a palm size lump. They thought it was a blood clot? They took my bloods, and I was called into a room in the Intensive Care Unit after 11 hours waiting, and told by a lady in white tunic, that it looks like you may have Leukemia?  She then said " It's okay some people can live a long time with Leukemia." (I couldn't believe how she told me It was like living a Nightmare!)

I left the hospital 11pm, drove home in shock. 

I then found out that lady in ICU should not have told me, and should have referred me on to Cancer Haematology for tests. I then waited for 8 weeks for appointment after more bloods were taken, but NHS sent the wrong bloods off. Waited after more bloods taken for the next diagnosis day (Which was 11 weeks 2 days of waiting for diagnoses.) 

I am on Watch and Wait (Which is every 6 months now, my next blood test is September 2026.) I do feel like I have been left on the shelf with CLL, as there is no cure. But I believe you can have tablets to try to control the white blood cells when it is necessary/When ever that is? 

Would love to hear from anyone else with CLL/Blood Cancer?

  • Hello Candyfloss777 and welcome to Cancer Chat.

    I'm sorry to hear how you found out about your diagnosis, as well as the journey you have been on since then. It sounds like it has been very challenging.

    I hope this information we have about the watch and wait approach will be able to address some of your concerns but if you'd like to discuss this further with one of our cancer nurses, they're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very easy to talk to and will do all they can to answer any questions you have about this or other treatment options for CLL.

    I'm glad you've managed to find others within our community who have this diagnosis but hopefully more members who have CLL will introduce themselves to you on here as well.  

    In the meantime, we're sending you all our support Candyfloss777 and hope you can take some strength, and comfort, from knowing that you are not alone.

    Kind regards,

    Steph, Cancer Chat Moderator