Just been diagnosed with CLL

Just reaching out that this is not just me. I’m 52 , I thought I was healthy but after getting bloods done to get HRT, I’ve been diagnosed with Chronic lymphocytic leukaemia (CLL). At first I was relieved with the diagnosis, I was told I wouldn’t need to go on chemo and that I could still live a normal life. I have had just had more bloods done and scan to see where I’m at. Find out Friday. Im now scared, sad and just lost my focus to even function. I can’t concentrate on my job or anything. Anyone else on their 50s going through this?

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Hi
I was just diagnosed in September with Chronic lymphocytic leukaemia (CLL)
Thought I was doing okay , on watch and wait and told I would probably be fine and healthy for a while . Now though am same as you struggling to focus and manage with things .
It’s really hard and am unsure why .feel like I am worrying about everything
I find that making sure I do some exercise and take a little time to myself each day helps but I understand your concerns
Are your care team and nurses easy to approach, mine are really nice and have been really reassuring .
Hope things improve for you .The people on this forum are really helpful and lovely
Let us know how you are doing

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Sorry should also say am 54

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Hi DottieB

Thank you for replying to my post so quickly I turned 53 on Saturday, it wasn’t my best birthday after being diagnosed 7 days before.
My older kids all came home to celebrate with me they are in their twenties and my youngest is 15 . I haven’t told them. It would break their hearts and I don’t want to worry them.

My husband, my mum and my HR manager are the only ones who know. We live in a small town and I worry someone will find out and my youngest will find out by accident.
But I’m struggling to contain my thoughts and people are chatting to me and I have no idea what they are saying I can’t think about anything else. I’m dreading Friday I don’t want to know I wish I’d never found out as I’m not poorly. Such a Head f@&k!

I haven’t really got to know anyone at the clinic yet I’ve only been twice I hope it gets easier.

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Ahh that is rough and as you say it’s a complete headf##k !
I wasn’t going to tell my boys as my oldest is autistic and really struggles with illness and worries a lot .I eventually did tell them as like you I was really worried they would find out inadvertently and I wanted to control the narrative if that makes sense .It was awful but we got through it together.
I gave my son the blood cancer uk booklet about Chronic lymphocytic leukaemia (CLL) as it seems to explain things really clearly and explains about watch and wait etc I was given this when diagnosed……Did you get it too ??
The clear way it is written really seems to have helped explain things I couldn’t and whilst they still are worried they seem less so than they were .Its a lot to carry around on your own …the watch and wait seems to just leave you in limbo although i know its a helpful way to “treat” what we have I find it the hardest thing to deal with sometimes.
Work has been difficult, I work in a health care setting and have had to change my role somewhat to try and avoid infections etc …I sometimes feel like this thing has changed me completely.
Sorry to go on , just wanted to explain that I understand how you feel and it’s really tough
Sending you love and hugs
Here for a chat anytime

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Hi @Lola2023 - welcome to the forum. So glad that you found us - you’re among friends here. A diagnosis is tough especially just before your birthday. I was diagnosed with chronic myeloid leukaemia three days before my birthday almost 12 years ago. I can understand how you are feeling - I was walking around in a daze, lost in my thoughts and not able to focus. I found it helpful to jot down my thoughts, feelings and questions so I could talk through them with my care team at my next appt. Look after yourself and let us know how you get on :hugs:

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Such a relief to talk to someone in a similar situation who can relate and understand.
When do u next go for check ups, is it 3 months or 6 months. How did u find out in the beginning?

Luckily I have hybrid working so telling my HR manager means I can push to work from home more.

And how old are your children ? Have you told many people outside your family?

I’m going to wait until I know what happens after Friday. Whether I need treatment or watch and wait. I’m meant to be going out Friday night with a couple of close friends (they don’t know) but I’m really nervous, should I go and be distracted but I might blurt it out or should I stay at home ( and try not to feel sorry for myself). Feels like we have to take each day as it comes.

I need to get myself out of this mindset of feeling sorry for myself, and get on with it!
Life is too short to dwell, I had a good nights sleep last night so feeling a bit more positive today. For now anyway!

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Hi @Lola2023 welcome to the Chronic lymphocytic leukaemia (CLL)’ers club.
There is a theme here, I was diagnosed after a routine blood test, after a gynae op.
I was diagnosed at this time of the year at the age of 53yrs and turned 54yrs in the early
January.
I had never had a day off sick in 30 odd years.
However I sort of blurted it out to everyone as the diagnosis had been blurted out to me.
My son was in his 20’s.
I sent an Xmas card to a friend in Los Angeles with my diagnosis and our cards crossed over the Atlantic and she put in her card her exact same news.
That was just coming up to 20yrs ago, she immediately had treatment and is now in her early 90’s.
I have not had treatment and have been on watch and wait (active monitoring) for all that time, I have been a very lucky girl and I am now 73yrs old and my 70th birthday was my best ever with many Colin the Caterpillar cakes.
When I was diagnosed I felt in a surreal bubble with the world and festivities going on around me and that went on well into the new year. Coming to terms with my diagnosis took a long time.
I had my life mapped out, my son would get married and I would have grandchildren etc. etc.
I also found that work took away all the nice proactive parts of my job and I was left with the reactive parts of my role.
Perhaps if you are not poorly, when you feel ready just try, and it is not easy, to live your live as you would have.
I found the one advantage to my diagnosis is it gave me the opportunity to re-assess my life. I had been living my life on autopilot. I decided what I wanted to do and with whom. I am also less materialistic and the best things in life are free, like family and friends.
All this takes time and I still get anxious before and during all tests, results and appointments.
Be ever so kind to yourself and please do keep sharing and using our forum, we understand.

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hi same here im on watch and wait,i was diagnosed on 27 Oct this year and due back at Hemotoligists 4th Jan next year i know its only 3 weeks away but the last 2 months have been a nightmare,i put every small ache and pain down to the Chronic lymphocytic leukaemia (CLL) getting worse or even more serious than that. Been to Docs about it and he has examined me and said everthing is fine and its down to stress and anxiety,i also have Diverticolitis and its difficult to determine when i get aches and pains which one its coming from,cant really focus on doing mutch so yes life sucks just now and i know how you feel.

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Hello, I was diagnosed with Chronic lymphocytic leukaemia (CLL) in October, since then I’ve had scans, more blood tests and bone marrow biopsy.

My bone marrow shows heavily infiltrated with the leukaemia (almost 80%) So although I’ve been told I will need treatment at some point I’m currently on active monitoring and back to consultation end February. Currently my lymph nodes along jawline and neck are swollen but I’ve been told this is normal

Thanks for reading xx

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My boys are 28 and 18 so a little older than your youngest
I haven’t told lots of people but I have blurted it out occasionally to my closest friends , it can be a lot to hold
People who know me well have continued to treat me as normal which I find helpful as I just want to get on with things and live a normal life
That is great that you can work from home , I have an admin day at home which feels really helpful as by the end of the week I am more tired than I can ever remember being :blush:
I find doing things I would normally enjoy to be really helpful even if I am not always feeling like doing things so go out if you feel up to it after your appointment
I hope your appointment goes well and things feel clearer for you
I am due for tests in January
Let me know how things are !!
Take care

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Hi @HenrikLarsson67 I am also on watch and wait (active monitoring) and I remember when I was diagnosed I was in shock for a long time and it took me a long while to come to terms with my diagnosis too
Personally I think my thoughts and emotions went into high alert when I was diagnosed and have stayed the same.
I found stress and anxiety did not help my physical or mental health
Yes, you will worry about every lump and bump, ache and pain etc.
Also personally I found that counselling helped me.
I would say just be kind to yourself, give yourself time and try to distract yourself and live your life day by day.
Please keep posting that is why we are here.

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Hi @Zina a great big welcome to our forum and thanks for telling us what has been going on with you.
How have you been coping emotionally?
Have you got support?
Look after yourself and be kind to yourself and please do keep posting.

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Hi Erica

Thanks for reaching out. My husband and family are a great support thank you. I feel like I’m in limbo to be honest and that makes me v emotional

Zina xx

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Hi @DottieB, sorry not to have replied to you earlier in the day, but I hope some of my reply to @Lola2023 helped and rang a bell.
Your experiences that you shared were really valuable.
I found it really difficult telling work as I could not explain about watch and wait as I did not understand it myself. Logically I think we all felt if I had leukaemia I would be treated, cured and I and everything would go back to normal. How wrong were we.
Please do keep posting and let us know how your appointment goes in January.
The value of our forum is that we will be about over the festive period

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So sorry meant to include you and @Zina in my replies
I hope you’re both okay , it’s good to have people to speak to who aren’t family and the folks on the forum are really helpful
I have found reading comments and replies really useful even if I don’t engage at that point
Take care and here for a chat anytime

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Hi Erica
Thanks for replying, your comments are always helpful
I noticed that you haven’t been too well recently I hope you’re recovering and feeling better

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@DottieB Thanks for asking I was feeling better till yesterday when my breathing was bad again, taking it slowly today.

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welcome to lola2023…i was diagnosed in jan beginning of the year…at first i was all over the place with emotions, worried about outcome, having to tell some work mates .bosses and hr…telling kids …then older grandkids…go back feb for next check up so fingers crossed all gos well…it is hard to take in at the beginning but it does get easier…not saying it gos away always in the back of your head.if you continue on wait and watch doing fine…as Erica’ told me listen to your body if you nead to sleep have a nap…keep posting someone allwas there to listen
take care

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So glad I found this group :pray:

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