I was diagnosed with Chronic lymphocytic leukaemia (CLL) back in October 2022 (though it still feels very recent to me) after routine blood tests revealed an abnormally high white blood cell count. I’m 35 years old now.
The initial meeting with haematology was a strange experience. My father came with me to the hospital and joined me for the appointment to discuss the findings. At the time, I didn’t know what leukaemia was, nor did I ask. I just remember thinking, “OK, cool.” It was my father who explained that it was cancer.
Naturally, there were tears—both my wife and I were emotional. Over the last two years, my white blood cell count has risen; it’s now around 91k, though I still don’t fully understand what that means for me or my body. I remain asymptomatic, apart from some mild fatigue.
I used to get ill quite often, probably because my young son was attending nursery and bringing home bugs. Now that he’s at school and I work from home full-time, illnesses have become much less frequent and far less severe.
Anyway, I just wanted to share my story with someone outside of my family—how it started and where I am now. Thanks for listening.
Hi @bloodytall a great big welcome to our forum and I certainly listened.
I too have Chronic lymphocytic leukaemia (CLL) and was diagnosed 20 yrs ago, through a blood test, concerning something else, and have never had treatment, yes, fatigue is my main symptom too.
I was 53 yrs old and I can still replay the day as if it were yesterday, I also did not know it was a cancer at the time.
The plus side to my diagnosis is that it gave me the opportunity to re-assess my life and see what I wanted from it and with whom.
I am less materialistic now, I was going through life on auto pilot, and now I realise that the best things in life are free like family, friends, music and nature.
I am fitter now and have a far better quality of life.
Yes, young children and nursery school do tend to mean a lot of illnesses.
If you would like to talk to someone the blood Cancer Support line is there for you on 0808 2080 888.
We are all very unique, special people so the way forward is different for all of us.
Now you have found us please do keep posting as I look forward to hearing all about you.
Look after yourselves
Thank you for your kind words and for sharing your story. It’s comforting to hear from someone who has lived with Chronic lymphocytic leukaemia (CLL) for so long and has found a way to focus on what truly matters in life. Family will always be my number one priority too—my wife and son mean the world to me.
Looking back, my diagnosis came after a bad reaction to the Spikevax Covid-19 vaccine. Not long after, my blood tests were taken, and the cancer was found. I don’t blame the vaccine at all—it didn’t cause this—but I do wonder if it sped things up or brought it to light sooner. Either way, I try to see it as a silver lining, as it led to the early detection of something I wouldn’t have known about otherwise.
I’m still finding my way with all of this, but it really helps to hear from others like yourself.
Thanks for reaching out to us and sharing your story. I am sorry to hear about your diagnosis. I cannot even imagine how difficult this must have been for you especially at such a young age.
Everyone deals with their blood cancer diagnosis differently and finds their own way with it. You sound like you are managing brilliantly. I am glad you have a lovely family unit and that you are asymptomatic, that’s really positve . Hopefully, your experience with haematology has improved and you have a supportive team who you can contact if you have any concerns.
As @Erica said, keep posting and please feel free to contact the nurses if you ever what to talk things over on 0808 2080 888. We are always very happy to listen
