Hi all
I saw my GP yesterday for what I thought was going to be another discussion about starting statins after a recent blood test only to be told that I was producing too many white cells and have Chronic lymphocytic leukaemia (CLL).
I am still in a daze. Yesterday was a blur trying to get through and here I am today still lying in bed trying to make sense of it all. Not ready yet to tell family and friends…
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Hello Crazycatlady. Iam sorry you have received such devastating news, you must be feeling a range of emotions, I know I did and Iam still trying to process it after being diagnosed with Acute myeloid leukaemia (AML), very recently on 25th March and like you I also went to my gp for blood tests which then flagged up abnormal results. Have you had contact with a haematology consultant about a treatment plan? That should be the next step, telling your family and friends will be extremely hard and I expect upsetting but they will want to be there for you, personally I couldn’t do this without mine. Iam also glad I joined this forum, we are all here anytime to just listen and offer advice if needed please dont feel you are alone. Sending hugs and love.
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@Crazycatlady
Hi, some great people on this forum you definitely will get some fantastic support. They’ve looked after me for nearly a year. It’s the first port of call if I get wound up with stress.
Best wishes
Unclejack.
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Am sorry you have had such difficult news
I too have Chronic lymphocytic leukaemia (CLL) , I was diagnosed in September last year
I have attached the link. Chronic lymphocytic leukaemia (CLL) - what is it, symptoms and treatment | Blood Cancer UK
Hopefully this will give you some useful information.I know how worried I was by my diagnosis so I know it will be hard
Please be kind to yourself, take care and let us know how things are going
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Hi @Crazycatlady,
It is great you have found us and so early on in your diagnosis. You must be feeling a thousand things right now and no doubt have lots of questions. If you need to talk things through or have any questions at all- please do know that our support service team are very much here for you- 0808 2080 888.
I would imagine you have been referred to a haematology team now and you may very well receive more information around Chronic lymphocytic leukaemia (CLL) in general but also more importantly what this will mean for you.
In case it is useful in anyway we do have some booklets you can download or order which will talk you through these first few days/weeks of being newly diagnosed including how to tell family & friends- Your blood cancer diagnosis: What happens now? | Blood Cancer UK Shop & also our booklet specifically on Chronic lymphocytic leukaemia (CLL)- Chronic lymphocytic leukaemia (CLL) booklet | Blood Cancer UK Shop.
I’m certain you will have great support from our forum but do know that our helpline is very much here for you too.
Take good care & keep in touch, Lauran
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Hi thank you for responding. My head is all over the place at the moment. Very pleased to have found this forum though.
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Hi
Thank you
My gp is making the referral to a haematologist but says it could take a while which does add to my anxiety as you can imagine. It was a lot to take in yesterday when I saw her as I was blindsided to say the least ! I have another appointment in two weeks to go over it again- I need time to process and get as much information as possible.
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Hi there
Thank you.
All too early for plans yet as I was only given the news yesterday and am still trying to process.
All the best to you x
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@Crazycatlady . Hits you doesn’t it!
Let me be clear I’m no doctor I’m a patient of BC twice so can only comment by personal experience.
My 1st experience of the ‘C’ word was 40 years ago and I’m stiĺl here. Chronic is a clue, it’s “over time”. Hopefully they get a handle on its development and programme accordingly.
Watch and Wait monitoring not unusual along with Bone Marrow Biopsies (BMB) but the key is they now know you’re out there and are watching. On that point if you are not feeling right, body or mind, shout out for support.
Hope all goes well. Modern treatments are developing so fast and remember incurable doesn’t mean it’s not manageable.
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Hi @Crazycatlady I also have Chronic lymphocytic leukaemia (CLL) and when I read your post I immediately remembered my similar shock, thoughts and feelings when I was diagnosed 20 yrs ago when I was being treated by a gynaecologist for something different.
I was in a daze for ages and felt in a bubble with the world going on around me.
It took a long while to come to terms with it.
You have entered a world that speaks another language, and I find there is a lot of waiting.
Personally I think having another appointment to go though things in 2 weeks will give you time to just start to get your head round it.
Perhaps write down all your fears, questions and practicalities for that appointment.
I am so glad that you have found us and so quickly as I have found that Googling is not a good idea.
I found that I could not explain to others what I did not understand myself.
Perhaps read the information on the Blood Cancer UK website and then when you feel ready to tell family and friends you can let them read the literature as well.
You are now part of our forum family so please do keep posting and be very kind to yourself xxxxx
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Hi, I am in much the same situation. Blood tests taken just to eliminate things - I thought, and GP tells me I have Chronic lymphocytic leukaemia (CLL). I know my white cell count was high, but is that all they use to determine this? I am still waiting for Haematology to contact me - so much for 2 week cancer referrals- not these days unfortunately. Blindsided is a good description! I also don’t feel able to tell anyone until I know more myself.
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Hi @Kas44 a great big welcome to our forum, it sounds as if you have read all the posts above and I would just like to reiterate them for you too,
Yes, I have found that there is a lot of waiting.
Personally I would say be very kind to yourself and give yourself time and just tell others when the time is right for you
We are here for you whenever you need us so please do keep posting as I look forward to hearing more about you
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Hi
I feel the same. I don’t want to tell anyone until I have more information so am going back to my gp in a couple of weeks. I was completely taken aback by what she was telling me so was unable to think of any questions.
I have gathered a lot of information from this this site and may well try to speak to someone before I go back.
It’s just horrible isn’t it x
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Yes, @Crazycatlady yes, the waiting and not knowing is horrible, please do let us know what your GP says
Look after yourself and please do keep posting