Newly diagnosed with CLL

Not sure where to start. Been in medical profession for over 30 years and it was still a shock hearing the diagnosis of leukaemia.
Fortunately I’m on watch and wait but my haematologist keeps mentioning that it will have an impact on my lifespan! Then he tells me not to worry about it.
Still in shock phase although have told my siblings not told my daughters.
Just talking aloud as I’m not sure what or how I should be feeling


Hi @Harnek a great big welcome to our forum and I am so glad that you have found us.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 years ago, at 53 yrs old, and I have always been on watch and wait (active monitoring).
At diagnosis my life expectancy was 5-10 yrs and my 70th birthday was my best ever.
I went into complete shock and all I could see was those 3 words in my mind with great zig zags around them. Quite a few of us were diagnosed out of the blue, I through a gynaecologist.
I felt in a bubble with life going on around me as normal.
I felt very isolated, the only one in the world.
You say you have been in the medical profession for over 30 yrs, perhaps that might make your shock worse, I don’t know.
You say that you have told your siblings and not your daughters, is there a reason for that?
I find that there is no right or wrong with feelings and they are often conflicting and illogical.
My thoughts and emotions have been on high alert for 20 yrs, I have found it an emotional rollercoaster.
What I would say is to be very kind to yourself and really look after yourself.
I look forward to hearing more about you and the Blood Cancer UK website and support line are there for you on 0808 2080 888
You are not alone now you are part of our forum family, please do keep posting


Hi Erica

Thank you for your kind words I really appreciate them. I think being a doctor you forget that it could actually happen to you. We are so used to breaking bad news to others that naively I suppose you do not think it will be you receiving the bad news.
My daughter has just gone travelling for 3 months. I did not tell her before she left so will have the chat upon her return.
I feel completely well.
Not sure if it was because I am a doctor but I was given no information at the time of the diagnosis. I have not spoken or seen any CNS.
I am a gynaecologist so I know very little about Chronic lymphocytic leukaemia (CLL) and have had to google the condition.
There are days where I think ‘it is what it is’ and just get on with it but there are times you start thinking I want to see my daughters getting married and having grandkids.
I have found it reassuring reading the forum articles to know I am not alone and my thoughts are similar to what a lot of members are going through.


Hi @Harnek I also wanted to see my son get married and 20 yrs later he is now 50yrs old and still not married !!
The Blood Cancer UK website link to clll is Chronic lymphocytic leukaemia (CLL) - what is it, symptoms and treatment | Blood Cancer UK
If you have not got any symptoms go out and have ‘love the life you live and live the life you love’ when your shock slowly subsides. It gave me an opportunity to reassess my life and what I wanted to do and with whom. The best things in life truly are free, family, friends, music and nature.
You are never alone on our forum.
I have subsequently been told that I am more likely to die with Chronic lymphocytic leukaemia (CLL) than of it.
Just be very kind to yourself, your world has been rocked and please do keep posting

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Hi Harnek , I also have a Chronic lymphocytic leukaemia (CLL) diagnosis so know a little of what you are experiencing
I was diagnosed last September and have had a lot of ups and downs but generally feel well
My one piece of advice is try not to google too much as it can be really scary
This site has great information and I see that @Erica has messaged you too !
She is incredibly knowledgeable and helpful

Take care

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