Diagnosed with CLL yesterday

Hello everybody, new member here :wave:

I’m English, 44 years old and currently live in Switzerland but needed to find an English speaking forum.

So, diagnosed with Chronic lymphocytic leukaemia (CLL) yesterday afternoon and had absolutely no inclination what-so-ever that there was anything wrong with me. My immediate thoughts were and are of my wife and children.

The last 20 hours or so have been an absolute whirlwind and rollercoaster of emotions, I have no idea whether I’m coming and going. I’m usually a positive person but this has hit me like a Tsunami and, if I’m honest, it hasn’t properly sunk in yet. Once it has sunk in and I’ve gone through the acceptance and the feeling sorry for myself phases, I’m likely to start cracking jokes about it. That feels like a millions miles away today however.

My blood test yesterday has been sent off to a lab for more tests to see where I am, but I won’t know anything until the middle of next week, so its watch and wait for now.

I belong to a few social forums and below is an edited version of something I posted earlier this morning which sort of sums up how I feel. Reading through it again it is actually quite negative but was how I felt at the time. If there are a few erroneous statements on there please forgive me, I am still educating myself.

For those of you who have gone through this, please, how to I get through the next days and weeks? When does acceptance hit? How do I explain this to my children?

Thank you,

'Went to the doctor yesterday afternoon for a routine check-up. As normal I arrive about 15 minutes beforehand, they take a blood sample and I go and sit in the waiting room while it is analysed.

The doc calls me in and I expect the usual questions about diet and wellbeing, to be weighed and have my blood pressure taken. I had already resigned myself to being prescribed pills for high blood pressure as this has been on the cards for quite some time.

Instead I am diagnosed with Chronic lymphocytic leukemia (Chronic lymphocytic leukaemia (CLL)). I actually had to ask her to repeat herself as I thought I couldn’t have heard her right. BOOM. You have cancer.

This was a complete bolt out of the blue. I’ve had no symptoms, I feel absolutely fine, apart from the blood pressure and being a bit overweight I am physically fine. I still play football and planned to do another half-marathon next year as I hadn’t done one for a couple of years. I haven’t even had a sick day off work due to illness since pre-COVID.

As far as cancer goes, Chronic lymphocytic leukaemia (CLL) is not the worse. It is cancer of the bone marrow and cancer of the blood. It is a slow progressive cancer but it has no cure, so it is a death sentence. If I look after myself, have regular tests and we treat the symptoms as and when they arrive, I should have another 10 good years. Ok, 10 years, but I’m only 44. Come on doc, I can do better than that surely!

She was talking about it some more, and whilst I get by with the language, German of course is not my mother tongue, I was listening but not really listening if that makes sense. From what I can understand, my bone marrow is currently producing mutated white blood cells as well as normal, healthy white blood cells which fights off infections and diseases in the body. As the cancer slowly progresses and more mutated cells and fewer healthy cells are created, my body will be able to fight infections less and less until I eventually succumb to an illness or infection, whatever that may be. Ironically, it seems it won’t be the cancer itself that kills me.

My wife knows, I told her a few hours after I got home but apart from her and this post, I haven’t told anyone else. I have no idea how to tell my parents and God knows what I will say to my children (13-year-old twins).

As you can imagine, my head and my emotions are all over the place. I haven’t slept and spent all night contemplating ‘what next’? In the grand scheme of things time is on my side, I’m not dying next week, next month or next year – not from this anyway. But I have so many questions. Do I spend however long I have left working every hour God created to earn as much money for my family as possible before I shuffle off or do I spend as much time with them as possible? Do I now live frugally, only buying what I need to live and not treating myself to anything, or do I try and enjoy myself – do I write a bucket list for example? Aaaarrrrrrgggghhhhhh….

I don’t know what to expect by writing this, I guess I’m just ranting and getting it off my chest. I’m going to find some Chronic lymphocytic leukaemia (CLL) forums and post on there too, ask how people coped in the aftermath of their diagnosis. Has anybody here been diagnosed with the ‘Big C’ in whatever form? How did you cope in the first days and weeks, how did you tell your family, friends and employer?’


Oh @DanH I am so glad that you have found us so quickly.
I read your post and it could have been me.
Actually it is 20 yrs ago today that I was diagnosed with Chronic lymphocytic leukaemia (CLL) at the age of 53yrs old.
I have been a very lucky girl and been on ‘watch and wait’ (active monitoring) ever since.
I had had a gynae op and the gynaecologist told me after a blood test.
I felt in a bubble with the world going on as normal around me all I could see were the words Chronic lymphocytic leukaemia (CLL) in great big zig zags around it.
I came home and wrote my will and funeral music.
My consultant said to me that I would be more likely die with it, than of it.
My GP said I would be more likely to be run over by a No. 65 bus and trust me there there were a lot of those buses in those days.
It is not an easy time of the year as everyone is celebrating and you have the twins to consider.
I had not had a day off sick in 25 + yrs before my diagnosis.
Personally I think children pick up on what is not said, as much as what is said.
If you are calm and make them feel supported and safe and just tell them the main facts appropriate to their age at let them ask questions.
Give yourself time and it does take time, to come to terms with your diagnosis all of you. Perhaps acceptance is a process and does not hit.
Try and just take it a day at a time, who knows what the future might bring.
My 70th birthday was my best ever celebrated with lots of Colin the Caterpillar cakes.
My diagnosis has given me a chance to reassess my life and what I want to do and with whom. The best things in life are free.
A friend in the USA was diagnosed with Chronic lymphocytic leukaemia (CLL) at exactly the same time as me, she had treatment straight away and is now happily in her early 90’s
I could go on and on.
Please do ask me any questions you would like.
Perhaps just look after and be very kind to yourselves, it takes time to get over shock.


Thank you so much Erica!

There must have been a miscommunication or misunderstanding yesterday as when the doctor told me “10 years” I thought she meant I’d be dead in 10 years!

Of course as soon as I let the doctor’s office yesterday, that was it, its all over. Time to write the will, no point planning holidays next year and start transferring everything into my wife’s name…

I have had a lot of replies on one of the other forums, in what feels like a personal time of crisis, words of complete strangers can really mean a lot.

Thank you too for the suggestion on how to approach this with the children. I say children they are 13 going on 25. It would probably be best to have an adult conversation with them. Plenty of time until then however, my wife and I have agreed to get through Christmas and the New Year before breaking the news to anyone else. No point putting a dampener on what is supposed to be a joyous time of year.

Thank you again for your message,


I read on the internet (never a good idea!!!) that people with Chronic lymphocytic leukaemia (CLL) only have a 5-10yr life expectancy, that old wives tale is long gone @DanH.
I remember thinking I would never see my son get married and have children, well he has just had his 50th birthday and he is still not married !!!
I made the mistake of sort of blurting out my diagnosis ( as my gynaecologist blurted it out to me) and I could not explain to work what I did not understand myself.
Whereas if I had waited a couple of weeks to calm down things might have gone smoother.
Keep posting and we are about over the holidays. The Blood Cancer UK helpline (opening hours apply) are there for you on 0808 2080 888.
Just take your time and be very kind to yourselves


Hey there @DanH, really sorry to read of your diagnosis, and the somewhat blunt way you were told. While I have a different blood cancer, Polycythaemia vera (PV), I can empathise with how you’re feeling so soon after diagnosis. I’m also a Brit living outside Britland and find this forum incredibly helpful and homely. Almost makes me miss the NHS!

If I may be so bold at this early stage after diagnosis, try to find others you can talk about all this with. A trusted friend, loved one, or someone who can listen to how this chronic disorder makes you feel. I was in shock after my diagnosis as, like you, I had no symptoms, and then a furious sense of sudden loss for my pre-cancerous self took over. Now I’m feeling more acceptance of this chronic disorder that I’ll always have. Definitely feels like grief, but I don’t quite see it as a death sentence—more of a potential risk factor in how I will eventually pass away, hopefully in many years!

I’ve been fortunate to have a keen therapist supporting me, also my spouse, and close friends. The support in this forum cannot be underestimated, either, especially wonderful folks like dear @Erica (happy anniversary of your diagnosis, Erica?!). I hope you find somewhere safe to process all this too, Dan.

Many fellow survivors journal or keep notes of changes, reflections, and symptoms at this early stage as it can help chart how well we adapt. Also our doctors can build a more thorough understanding of our specific needs based on what we tell them we’ve noticed. Art-making can be super helpful for expressing the unspeakable right now. Keep writing as it can help get it out of one’s system, I find. You’ve mentioned exercise already being part of your life, and maybe now it’ll be a way to shed some of the worries inevitably brought up.

Like dear @Erica says, it’s never a good idea to google our diagnoses.There’s just so much inaccurate, outdated nonsense online. Perhaps stick to blood cancer organisations like this for information, there’s some CLL information. The Leukemia & Lymphoma Society is pretty good too, I’d say. What I’ve found reading information from different countries is that there are slight differences in medicines, frequency and types of treatment and advice offered, and that actually your own treatment will end up being unique to you, much like these rare blood disorders.

Anyway, perhaps that’s too much right away! Sorry if I’ve bombarded you. Bear in mind that your youth and health is on your side. Please keep posting Dan as there are folks here to support you with this.

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Thank you Duncan for taking the time respond, your words are very much appreciated.

As each day passes I am feeling in a much better place than the day before and it won’t be long until things seems back to ‘normal’. Hopefully not too much though, I have found myself stopping to smell the proverbial flowers which I have not done for years and years!

I had a sonogram yesterday, the liver, spleen and lymph modes are all good, so nothing to worry about there. I also told my bosses of my diagnosis (I’m normally quite bubbly in the office, they would have picked up immediately that I wasn’t myself) and they were very supportive.

Just waiting for a call from the doctor now to sit down - with my wife joining us - to talk about where I am, what happens next and what to expect in the years to come. Have definitely decided to wait until after Christmas to tell my children and immediate family.

To you Duncan, Erica and anybody else reading this, I wish you all the very best in your personal battles, lets cherish the life we have been given.

Love to all,


Hi @DanH thanks for your update and please do let us know how your doctors appointment goes.
It is great if your wife can hear 1st hand what is going on, if you can go through this as a team it might really help.
Don’t you worry I am grateful every day.
We are around on here over the holidays if you feel the need to post.

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This all sounds great, Dan. It’s my pleasure to offer you my experiences. I remember my diagnosis only too well and this forum made me feel less alone with it all.

I hope the call went well and that it gave a modicum of relief, or perhaps further clarity. Having your partner alongside you will no doubt help a lot—especially for keeping note of the denser information, I find!

Totally agree about cherishing life. Long fruitful lives ahead :crossed_fingers:t3:

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