Aww am sorry to hear that , take care and hope you feel better soon.x
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Hi @Lola2023 , hope your appointment went well
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Hi
Just back. No bombshells today! Ct scan showed slight swelling of nodes and spleen and blood count now 190 (was 168)
He spun positive that if I feel well no need for treatment yet. But I will need treatment in next few years as I’m also slight anaemic and it is a high count.
Need to get all my immunisations up to date but other then that Carry on with my life and back mid January to check again.
So I am going to try and chill over Xmas as much as I can. No rush to tell the kids before Xmas.
It seems treatment is evolving all the time and may change by the time I need it so we didn’t discuss that.
Feel relieved as you can be with cancer.
Thank you for checking in on me x
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Am so glad there were no bombshells!
Have a great Christmas, will check in in the new year if that’s okay
Take care
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Hi @Lola2023 glad that you did not have any bombshells and it seems quite a lot to celebrate and chill, enjoy and be kind to yourself xxx
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Hi everyone.
Happy new year!?
I must admit i was bah humbug NYE as even though 2023 ended on a low with the diagnosis I couldn’t feel positive about 2024.
I had 4 immunisations 3 days before Xmas , covid , flu, pneumonia and shingles and felt very sorry for myself, I bled from the injections (never happened before) and still have the bruises now so felt very fragile.
I constantly worried over Xmas that either someone would see my bruises or I would slip up in front of the kids. (I have still only told my mum and best friend)
I haven’t even told my dad, he lives on his own and lost his dog (to cancer) on Xmas eve.
And that’s my biggest dilemma atm, when/if to tell the kids. My daughter is 29 and my 2 sons 24 and 14.
The 2 older ones live in London with their partners and youngest at home with me.
They are close ( as they can be to each other my youngest does have a different dad who is my husband now)
We always get together for bdays/Xmas/Easter etc at our house and we often visit them in London. But when we meet it’s always ‘an occasion’ something fun.
I just don’t know when I can tell them
Do I tell them together (I think I should) but others have said no need as they will act differently with the age gap.
But I don’t want to put pressure on any of them to know before the others do.
Should I tell them at all? But over Xmas we had some covid scares and it felt very stressful as they now live with covid and don’t know that I now have to be careful .
Any advise re telling the kids would be appreciated even if just your own experiences.
X
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Hi @Lola2023 so many dilemmas.
We can only give you very personal responses.
My son was about 30 yrs old and I told him over the phone when he was sharing a rented house with friends fairly locally…
Very personally I have always really regretted not telling him face to face when we could have discussed it and I could have answered his fears and questions.
Yes, I expect all your children will react differently, everyone does, but if they are all together they can all say how they feel, their fears and questions and also support each other.
I would also worry that if they are told separately the jungle telegraph would tell someone before you told them. It would be natural.
The longer you go without telling them then perhaps the more upset they might be that they had not been told sooner.
Have you told your husband?
Please do let us know what happens and really look after yourself I am not surprised that you feel stressful and fragile
But it is your choice.
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Hi @Lola2023
I would sit them all down together and tell them face to face , they will obviously all react in their own way but you can explain clearly, use the blood cancer uk booklet for Chronic lymphocytic leukaemia (CLL) as it explains things in a really easy to understand format .My autistic son found it really reassuring.He has severe health anxiety but is very high functioning and he found it helpful and refers back to it sometimes.
I was worried they would find out inadvertently and wanted to be really clear with them .
I completely understand your anxiety around this but I have found them knowing really helpful., they know so won’t visit with a cold or infection etc
Take care
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Hi, I’ve just turned 53 and was diagnosed in May after HRT blood related tests. You’re not alone. It get less scarey as time goes on. Doesn’t stop you googling it now and again but the voice in your heads gets quieter. I hope everything g goes well with your scan results x
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Didn’t want to read and run. We had a much younger child to tell when my hubby was first ill (with a different blood cancer and a different Prognosis initially) but i still think we would do it the same way again. We had a child who knew something was very wrong, who had qts and fears and worries that needed addressed and that needed to know our life would need to change. I truly think we all know the best way to talk to our kids - im not saying we always know the best words to use. Whether its all together (will it seem like huge bad news and the end of the world if you bring all together?), or individually and using different tones and words. You’ll work it out- have the best info to hand, sources of info they can choose to turn to and make the conversation perhaps full of space for both silence and qts… And any emotions. I believe you won’t get it wrong any way you do it if you are prepared, honest and putting them first in the conversation. My every good wish to you all
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yip im the same cant focus or get my head into it was diagnosed last October and my mental state has been through the roof! Im on watch and wait but im having pains all over body not so mutch legs and arms.so when these pains flare up is it Chronic lymphocytic leukaemia (CLL) pain or Anxiety playing with my mind anybody else get this.
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Yes @HenrikLarsson67 my thoughts and emotions fluctuate, contradict each other, oscillate and are on high alert since my diagnosis too.
I also get anxious before and during all tests, results and appointments.
However I am aware that anxiety is not good for my mental and physical health
I do ensure someone looking after my Chronic lymphocytic leukaemia (CLL) is aware of all my symptoms, their severity and impact on my life.
I did find counselling helped me, but if you think you might like some emotional help it might be worth seeing if your GP can help with local services, their are a lot of personally perceived losses with a diagnosis.
Give yourself time and be very kind to yourself and keep posting
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Hi is it possible to get aches and pains with Chronic lymphocytic leukaemia (CLL) even though you aint on treatment yet.I get rib pain and back pain now and then but i also have Diverticolitis and i dont know if its pain from that or Chronic lymphocytic leukaemia (CLL).
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Hi @HenrikLarsson67 I always think it is so difficult to know if a symptom is connected to my Chronic lymphocytic leukaemia (CLL) or another condition I might have or has not been diagnosed yet.
We are such complex beings.
Perhaps it is one for your GP or specialist nurse or consultant.
Please do let us know how you get on and I always believe in getting things checked out .
Really look after yourself
Thanks for asking this as I was wondering the same , have severe hip pain and rib pain regularly.
I have asked my GP about this and am having blood tests to rule things out
As @Erica has said it’s really hard to say what aches and pains we experience are linked to our Chronic lymphocytic leukaemia (CLL) and what else is going on and causing them
Hope you get some answers
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i also suffer from Diverticolitis and i dont know if its aches from that as well as they all seem to come from the Abdominal area.was at Hemotoligist on the 4th of January for my blood work check up and they seemed happy about the situation,no treatment yet still on watch and wait.so im taking that if there was any new development they would have picked up on it then as it was only under 2 weeks ago.
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Perhaps @HenrikLarsson67 you could just check it out with your GP.
I have found that I cannot ever assume anything.
When I was first diagnosed my GP said that I should take responsibility for my health. Therefore I tell each specialism about all my different relevant conditions.
This includes my dentist and optician.
Take lots of care and please do keep posting
Hi
Sorry just catching up with all of this. Welcome to the forum Zena hope you are doing ok
I was diagnosed with Chronic lymphocytic leukaemia (CLL) in June 2022 aged 61 it was also picked up via an incidental blood test when I was having severe headaches. It was a shock at first but I have been a nurse for almost 46 years now so of course researched it all immediately and took a pragmatic approach to it.!! I am on a watch and wait with 6 monthly reviews just had my 3 rd one and everything remains stable. My approach to it is different to many others on here I don’t know if it’s because of my nursing background or me just being an outgoing person. I have been very open about my diagnosis I told my family straight away we talked honestly about it , all of my friends colleagues etc know too. I would rather people hear it from me than hear it through the grapevine and not be sure if they can mention it or know what to say. This approach helps me as if I’m having a tired day people know why and being able to talk about it if I wish to is supportive for me I also shared my story on the leukaemia uk website when they wanted volunteers if it helps you to read it . I try to be very upbeat and positive it has made me up my game and get on with my bucket list more enthusiastically , book the holidays , have the experiences etc. I go to the gym and try to stay fit I know I have slowed down a bit but that’s fine . I have 4 grandchildren and another on the way and we have great fun with them. Of course I have down moments of worry that would be expected I think but I just try to work through them. We are all different in how we deal with our diagnosis and it has to be right for you.
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Hi everyone. I’ve had a strange experience since diagnosis of Chronic lymphocytic leukaemia (CLL) in September at age 65. I was lucky to be diagnosed early and assured it developed slowly, maybe not at all. My haemotologist and I thought we wouldn’t meet again for 6 months for monitoring so I got on with things as normal. I’m an avid walker but found the anaemia making it more difficult.
Unfortunately I had a virus over the last 2 weeks of term (I’m a supply teacher). Over the Christmas and New Year break I went downhill quickly, until I could hardly stay standing for long. This was scary, especially as I saw my dad like that with Acute Myeloid Leukaemia and he died a year later.
At first my haemotologist thought the virus speeded it up but now he’s not so sure. I decided not to return to work in schools, to avoid catching more viruses.
Tests showed low haemoglobin and platelets so I had my first blood transfusion. When I continued to weaken I had more investigations. So far we know that my bone marrow isn’t functioning properly so cannot make any new red blood cells. My doctor is very puzzled by this.
I’m now on weekly transfusions until one of 3 treatments is chosen, to send it into remission.
I joked with him that my personality stepped in with impatience to get this done and dusted so I can get on with my life 
It’s kind of like being put on fast motion, not the experience I expected at all but it is what it is and I’m just in acceptance and going with the flow.
Where you’re cautious about telling children, I’m watering it down with my mother who’s 91. She’s in Australia and I’m here in the UK.
Hopefully I’ll get to visit later this year when it’s settled down again. Time is precious.
Wishing you all a smooth journey with Chronic lymphocytic leukaemia (CLL). 
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Great to hear from you @KayC with your update.
I like your attitude, but as you sort of say it takes a bit of time to come tom terms with a diagnosis.
You go for your ‘bucket list’ and enjoy.
Really look after yourself and keep posting.