I have been diagnosed with cll at 50 very worried about how long I will live because most people under 55 have unmuted cll which is more aggressive I can't eat or sleep crying every day I have children and I want to see the grow up

[Spangleystar]

@Gary4 have you been told you have it? If not push this all out of your mind until your appointment on 8th. You will likely drive yourself mad with what ifs and maybes otherwise. The lovely @Byrnebaby went this route -looked into absolutely every possibility and it gave her a lot of anxiety (sorry BB I hope you don’t mind me mentioning this ). Right now the internet is not your friend, wait until you have confirmation and then look into it with specifics. You will be told about many side effects and possibilities- a lot of them you won’t get, try and limit what you let into your brain. It needs to be a fortress to help you through this really difficult time. It does get easier.

Focus on watch and wait - I’m pushing that out into the universe for you lovely xx

[Byrnebaby]

@Gary4 listen to my lil she’s a wise one indeed, she is right and if you look back on any of our threads, you will see just how bad I have been and unfortunately I’ve slipped back into that mindset this week, and I’m crucifying myself by scouring the internet, mainly as I have too much time on my hands and mainly because I’m waiting to go back on treatment and don’t know what treatment it will be, at the moment even making a simple decision is causing me distress which isn’t me at all. It’s true all this does change you, and it’s very hard waiting for a diagnosis and putting a plan in place. Dony surpress your feeling though, try and work through them, when you do get your diagnosis, please try to not do what I’ve done and read all the bad stuff and only concentrate on the ‘what ifs’ as I’ve brought myself down going down that route and now I’m brining my hubby down, and life is miserable some days, I’m hoping when I get to the next stage of treatment, I can finally accept it and be ‘aware’ of it and not having it become me, I have to learn, as many have said ‘I have cancer, cancer doesn’t have me’ This isn’t to bring you down, just warn you of the pit you can fall into very easily, and I wouldn’t want you to go there, but please bear in mind, I lost my dad 2 weeks after my out of the blue diagnosis, so there’s a lot of factors at play, I wish you well and we are all here, sorry it’s such a long post, but I’ve tried to be honest, I’m ok with you mentioning me @Spangleystar xx

[DuncanB]

Hi @Gary4

Some really sound advice from @Spangleystar and @Byrnebaby which I hope helps.

Won’t be long until your appointment where hopefully you will get clarity and insight on the next steps.

Take care

[DuncanB]

Fantastic post sharing personal experiences and great information @2DB

Thanks for taking the time to give such a comprehensive response

[Duncan]

Hello there @Gary4, welcome to the forum at this worrying time. I see you’ve recently been diagnosed with Chronic lymphocytic leukaemia ('CLL') and have received lots of great advice, including from others who have lived with Chronic lymphocytic leukaemia ('CLL') for many years like dear @Erica. Do take Erica’s advice!

Can’t say I know what unmuted Chronic lymphocytic leukaemia ('CLL') is, but I live with a different chronic type of blood cancer to you called Polycythaemia vera ('PV'). Dear @DuncanB has shared those great links to properly researched information about Chronic lymphocytic leukaemia ('CLL') so do have a read.

I’d add that googling our disorders will likely only bring up very generalised information, and I find it’s often very wrong. I say this after having googled my own prognosis and was told 5 years, which is totally wrong.

Something my haematologist reminds me is that living with a chronic disorder means it will only develop slowly, if at all. A disorder that will only develop slowly means we have the rest of our lives left, and many of these chronic illnesses are very manageable with active monitoring of blood test results and following any treatments we’re offered.

Another thing my haematologist tells me is that I am likely not to pass away due to my chronic disorder, but with it. I should be able to live into normal old age, and I’m a similar age to you. Perhaps this is worth checking wth your own specialists so you can gain some relief from those very understandable worries?

And may I say, after diagnoses like these it is a very worrying time and perhaps all those tears and anxieties are to be expected. Let them out I’d say, better out than in! It does become less worrying once you’ve had a few blood tests and can follow along with your results, try to give it a bit of time.

My final point is a personal one but for me thinking of blood cancer as a fight isn’t very helpful. It’s been more a case of learning about what I’ll be living with in the long-term, and I certainly don’t want to be in a war with it! A slight shift in how I see it helps me feel less anxious, maybe for you too?

Do let us know how you get on @Gary4.

[Unclejack]

@Gary4 hi Gary. 5 years ago I was diagnosed with Chronic myelomonocytic leukaemia ('CMML'). Other than penechet (specks of blood under skin on lower legs) and blood test levels all over the place I felt well and couldn’t believe after a bone marrow test I was being told prognosis was eight months to two years. That was 5 years ago and even though I have several mutations I still feel quite well. Last year I had a second bone marrow test and the result was no changes since the first test years before. I know it’s easy for me to say but try and stay positive. I think all of us have dreadful anxiety when first diagnosed. I have a blood test every couple of months and the stress builds up until I see the results. Still on active monitoring. Anyway I wish you all the best and many others on this forum will offer all the support they can give. Best wishes Unclejack.

[Erica]

Hi @Gary4 and @Duncan and all coincidently I was in a meeting on World Chronic lymphocytic leukaemia ('CLL') day on 1st September and the speaker did mention unmutated and mutated Chronic lymphocytic leukaemia ('CLL'), but I still do not know the difference.

I agree with @Duncan that where I am now in my head I do not think of my Chronic lymphocytic leukaemia ('CLL') negatively, it is just a condition that I live with, I am a great one for reframing my thinking from negatively to positively. However I do have my good and bad days like everyone. I celebrated World Chronic lymphocytic leukaemia ('CLL') day and I celebrate, albeit reflectively, the anniversary of my diagnosis. And, yes, @Duncan by raising my evening mug of hot chocolate to it !!

Give yourself time and be very kind to yourself @Gary4

[Duncan]

Aw @Erica what a lovely optimistic response, thanks for sharing about World Chronic lymphocytic leukaemia ('CLL') Day and that you celebrate it! I misunderstood about “muted Chronic lymphocytic leukaemia ('CLL')” so I hope I didn’t confuse you @Gary4. I’d say anything that doesn’t make sense can be noted down and asked of your specialists.

In the meantime, like Erica says so wisely, do give yourself time. These early days after diagnosis are bound to be full of worry and so I’d say remind yourself that this will fade. And don’t forget to eat, you need your sustenance!!! Even if it’s hot chocolate for every meal, not to tempt you Erica

[Byrnebaby]

You have such a calming influence @Duncan thank you for being here, I picked up on your words there of not thinking of this as a fight

[Spangleystar]

It’s not the way I see it either @duncan and @byrnebaby , but let’s remember a former pro kickboxer is the original poster here and whatever gets you through, keeps you focussed and determined, works! Xx

[Byrnebaby]

Very true @Spangleystar I hadn’t thought of it in the context of a pro boxer, it’s probably the very attitude needed! I focused on my own attitude of it up to now, which was, why me, what did I do to deserve this, who hates me this much ( not logical I know) but put that down to Catholic guilt​ and I was personally looking it as a battle and fight, which I don’t have the energy for, but K has flipped the switch (the brain one!! ) and just learning to ‘accept’ it as a way of life, and not let it ‘be’ left

[Willow]

Hello @Spangleystar I am pleased you had a better nights sleep. I agree that I don’t like to think I am at ‘war’ with my blood cancer. It’s an analogy used quite a lot. For example people say ‘keep fighting’ or someone ‘fought bravely,’ etc. I agree with what @Duncan has written about learning about what I am living with, finding some acceptance, rather than being at war with it. Willow x

[Spangleystar]

Absolutely @Willow and I said I don’t see it as a fight either, but we have had longer to process our feelings and come to that acceptance. That said I don’t think we should ever assume that the way we feel about it is the same for everyone, or that we are at the same point in our journey. Language is very important - but we all have our own life experiences and triggers providing the lens we look through so if a fight helps someone visualise them beating cancer into remission and that works for them so be it xx

[Spangleystar]

This has just occurred to me that this could seem confrontational in black and white! I hope we’re all friends enough to know that it’s conversation not criticism! I’d hate to upset any of you @Duncan @Willow @Byrnebaby xx

[Willow]

Hello @Spangleystar @Byrnebaby @Duncan I would never want to criticise or upset anyone either. I am just sharing what works for me. As you say, hopefully we all realise that it’s an exchange of thoughts and ideas and there’s no right or wrong way to look at it. It didn’t come across as confrontational so try not to worry! Willow x

[Byrnebaby]

Abso-bloody-lutely my lil x it does not seem confrontational at all! Words are important, and whatever helps us through in our own ways is good for me and look at us now, talking like old timers, as you say we are much further down the line now, and remember those first weeks and months so well, and it’s great to support others beginning this trip, we are all individual, we all support each other, we will never, ever fall out over ‘words’

F.R David - Words (Official HD Video)

[Duncan]

So interesting to wake to these comments @Spangleystar, @Byrnebaby and @Willow, or rouse from dozing I should say as my sleep was totally disturbed by a couple having a blazing row outside their car effing and blinding in the street at 4 am, as one does Seems weirdly apt considering all this fighting talk!

This discussion doesn’t feel confrontational to me though, and I like that you’ve drawn attention to my anti-war bias—whatever language or mindset helps us tolerate these illnesses is helpful, full stop!

I’m just hoping @Gary4 is doing okay a few days later, how are you getting on?

[Spangleystar]

@Gary4 wishing you all the best for your haematology appointment tomorrow. Do let us know how you are doing, when you feel ready. Please know you have a ton of people on here rooting for you xx

[2DB]

Thinking of you today @Gary4
Let us know how you get on

[Gary4]

Got told have to wait on genetic tests to see what my risk group is if it’s the bad mutantion gene I’m starting treatment if not I’m on watch and wait until the 20th October