Hi
I’m new to this, I was diagnosed with Chronic lymphocytic leukaemia (CLL) in January (could of had it longer) . I’m on the watch and wait. Just don’t know how to feel sometimes I forget anything is wrong other times it’s overwhelming. The only person that knows is my husband which is what I want but sometimes I really want to tell our Son but he has enough to worry about as my husband is not well either. Just wanted to to tell someone.Thanks for listening sorry for the rant
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Hi @Lizzie380
Firstly welcome to the forum and sorry to hear about your diagnosis.
I was diagnosed just under 3 years ago with a different form of blood cancer and though initially when I got the news I was confused, in denial and all over the place, I made the conscious decision not to tell anyone about my diagnosis. This was primary due to other peoples misconceptions of the word cancer and all that it means, but also the fact that we lost my sister (36) to a different cancer and she lasted just over 8months from her diagnosis and with my parents both elderly and immediate still recovering from being down 1 and doing my research into my cancer that it would be for the time being be manageable to keep it to myself.
A few people know and though I hate lying esp to my parents I feel it helps me carry on. Its great because I’m not reminded about it or anyone treats me differently and also I take ownership of my cancer and don’t need to feel guilty for anyone else’s feelings in knowing I have cancer and what the future entails. But it’s tough working round the reasons and explanations of when you have the bad days and making up reasons to go to appointments and hiding away medications.
Giving yourself time to process everything is really important and undervalued. Of course everyone and mainly you will have tonnes of questions and there are specialist people who have the answers. And it’s tough to answer other peoples questions when you don’t know the answers which stresses you and them out massively. One thing that has put me in the place I am now are the amazing people here on this forum for all their support, advice and just always being there. It really is a safe place to escape but also to dive in to that’s yours and yours alone away from everyone and the drama that surrounds you.
Well done for reaching out and making the initial step. Trust me… you will soon see you’re not alone with this!
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Thank you for taking the time to reply. It was really helpful
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Hi @Lizzie380, a warm welcome to the community. Thank you for sharing how you’re doing since your diagnosis- you’re not alone in this and it’s so understandable to find it overwhelming at times. If you’d find it helpful to talk things through, you’d be so welcome to reach out to our Support Team (0808 2080 888). If you’re not ready to, that’s okay, but we’re here for you as and when.
I thought I’d share these resources that some people find useful, just in case they’re useful for you-
Blood cancer: mind and emotions | Blood Cancer UK
Watch and wait for CLL | Blood Cancer UK
Take good care of yourself, Lizzie.
Best wishes,
Tanya.
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Thanks for the information it looks helpful,
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Hi @Lizzie380 and welcome to the forum.
I can see the other members have already shared their experiences and offered good advice.
What you describe is exactly how lots of us have felt. You are so early on in your journey and your emotions will be up and down. It’s a lot to get your head around!
Telling people/not telling people was always my biggest dilemma. All I can say is that you will know when the time is right.
Use the support line if you need it and the forum. There is always somebody to listen and you can say how it really is for you X
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Hi @Lizzie380 a very warm welcome to our forum you are now part of our form family.
I also have Chronic lymphocytic leukaemia (CLL) and was diagnosed 19 yrs ago and I have always been on watch and wait.
I maintain that my emotions went on to high alert with the shock of diagnosis and they are like a roller coaster.
You do not say how old your son is but I believe they sense if something is not right if they are living with you or if they see you regularly.
It must be an extra anxiety and stress for you and your with your husband bein not well
The 2 bits of advice given to me by my GP and consultant were:
You are more likely to die with Chronic lymphocytic leukaemia (CLL) than of it.
You are more likely to die from getting run over by a 65 bus than of Chronic lymphocytic leukaemia (CLL), funnily enough I have been on two 65 buses today…
In my book your feelings are very natural so please be kind to yourself and look after yourselves and please keep posting and the Blood Caner UK support line is there for you as others have said
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Thank you for all the replies they have been really helpful. Just a question is anybody else’s body tired and achy, also has anybody got a permanent itch or is it just me imagining these things
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Yes to all the itchiness is easily fixable with some iron but your med team will fight against this. But if your symptoms intensifies this is a quick and risky fix
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Thank you I’ve been told it’s my imagination for the itch by the hospital so pleased I joined this group I feel feee to ask anything and not be judged
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Hi @Lizzie380, sorry to hear about the tiredness and aching as well as the itching you mentioned- this sounds very real and very uncomfortable for you, and we appreciate managing symptoms is not always easy. Would you feel comfortable speaking with your team about it again, perhaps your Clinical Nurse Specialist? It’s so important to get both an understanding of the symptoms and support in managing them.
In case it’s useful at all, here’s some information about tiredness and coping with it- Tiredness (fatigue) | Macmillan Cancer Support.
Take care and do remember we’re here for you (Blood cancer information and support by phone and email | Blood Cancer UK).
Best wishes,
Tanya.
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You can definitely do that! The forum family are always here!
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Hi Lizzie I was diagnosed will Chronic lymphocytic leukaemia (CLL) 4 years ago I was on watch & wait but 2yrs ago I had to go on a tablet called ibrutinib as my white cell count went to high also I became ill with pneumonia I’ve been doing well with medication & generally feel well ! But like you I get very mixed emotions about it all i have some bad days !! so I very much feel for you !!
Stay well Lizzie 
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Hi @Trig60 A great big welcome to posting and you have shown one of the great advantages to our forum by sharing your experiences.
Yes, the emotional side really hits me too, a complete mixture.
Look after yourself and please keep posting
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Continuing the discussion from New to this:
hi im new to this two…told 2 months ago still coming to terms with it …tell poeple get it off your chest…i have been told i could have had it for about 5 years…its the tiredness and fatigue that gets you …chin up.
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Hi! Welcome to the forum @Lizzie380
my own experience with “watch and wait” is not very well, lots of question inside my head, dilemma, it seems everything is not right! oh i wish i could turn back time and cherish the moment, as now I’m under treatment I can’t stop what I’ve started…
Don’t worry be happy and positive no matter what 
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Hi @gordo and a great big welcome to our forum.
I reckon it takes a long while to get over the shock and come to terms with a diagnosis.
I find it is too hard work to keep my chin up sometimes, but I do manage my fatigue so much better in the last 19yrs since my diagnosis.
I often have an afternoon nap if I can.
I find this is a safe space to say how it really is for me.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
I look forward to hearing more about you.
Be kind to yourself and please keep posting.
I’m glad you found us. You are early o in your journey and I remember my emotions being all over the place. I look forward to getting to know you better 
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