Hi all, thought I would say hello

Had a shock call from the doctor today, had a routine blood test on Tuesday to check blood sugar and cholesterol only to be called in today and told I have CLL

Early days and waiting form a specialist appointment but as the notes say it is a non urgent specialist appointment I need I am assuming I am at Stage A and will be monitored.

To say I am shocked is an understatement so have been reading up all day.  The irony is I start a new job on Monday, I hope my new employer still takes me on otherwise I am stuffed without a job so keep your fingers crossed for me.  Occupational health seem to think I am fit for work.

That's about all I can say for now until I see the specialist, will be trawling all the sites for support and information.

Kirk

Hi Pitbull, we all shudder recollecting that initial stage of diagnosis and the shock and fear that goes with it so sincere words of support coming your way. I was only diagnosed 9 months ago and am 54. There's some great people on here who will be able to offer you the support, advice and Information you need at this time. Not sure whether your GP was able to give you any relevant CLL literature but from personal experience, reading random stuff off the Internet can be scary and misleading. I made that mistake..........Reassuring that there hasn't been an urgent response to see you by the specialist but I can imagine you have a need to know much more. I'm going to keep it short at this stage Kirk except to say those initial feelings of terror will subside and you'll find others on here at all stages who will be happy to help you in any way possible......I feel sure that Nick (Hairbear) and others will have lots of useful information and links to help you at this early stage........there's so much positivity and research around CLL at the moment so hang in there and keep strong. Please keep us updated on your progress. Love, Jue xx <><><><><<><><><><><><><><><><><><><><><><><><><><><>

Oh sorry, meant to say good luck with the new job Kirk. Bad timing I know but no reason why you shouldn't take up the position especially as you seem to be well and not symptomatic. Could be decades before you need treatment (if ever). Nobody knows at this stage so no reason why it should be made a problem. Good luck! Jue x <><><><><><><><><><><><><><><><><><><><><><><>

Hi Kirk,

That's exactly how I received news of my tentative diagnosis, so I totally relate to the shock that you're currently feeling.

The first thing to say is don't panic! As you no doubt have already discovered, CLL is a long-term chronic condition which may or may not ever need treatment. There are also many variations of CLL so until you've had the usual tests done, there's no way of knowing what particular type you have.

Do carry on researching, if only to know enough to be able to ask salient questions when you get to see the specialist. Nick (Hairbear), our founding member, put together a number of sites here which will provide reliable, current information which may help and avoid you having to trawl too far.

Take your time to digest the information available and don't hesitate to ask any questions as and when they occur to you.

Welcome Kirk

 

I agree with Jue. if you're asymptomatic you could be in that percentage that remain so for many years and never need treatment. CLL behaves very differently in each of us and the name leukaemia can drum up incorrect asumptions.  CLL is often diagnosed from routine blood tests, it is a shock and hard to get your head around. But the good thing is that the name chronic means slow growing so we have time to find out how the disease is in us and about the disease. there are a great bunch here who are full of information and experience. learn as much as you need .

 

Start with UK current sources of information, the latest LLR booklet is a good place to start if you are looking for reliable understandable information..

 

PDF Download the NEW CLL patient information booklet from Lymphoma and Leukaemia research:

 

 

 

http://leukaemialymphomaresearch.org.uk/sites/default/files/cll_july_2012_3.pdf

 

 

 

Chronic lymphocytic leukaemia: in a nutshell, 

 

http://leukaemialymphomaresearch.org.uk/information/leukaemia/chronic-lymphocytic-leukaemia

 

 

Support and further information:  

cllsupport.org.uk

 

Good luck with your up and coming consultation. keep us posted

 

Take care

 

nick

thanks for the kind words folks every little helps.

I do find myself going through a number of emotions at the moment but I said to my wife yesterday, it's no good moping around and feeling sorry for myself, I need to get on with life and fight this setback.

My next major challenge is telling my father who is in his late 80's and will be devastated and even worse will be telling my Daughter who lives in the North east (I am in the Midlands)  was tempted to wait until I see the specialist but I think this weekend will be more appropriate as I need to go public so I can be open about my research.

Thanks again and I can see there is a lot we can do to support each other via these forums.

Hi to Kirk and MazG

So sorry you are going through what we've all experienced - the shock of diagnosis out of the blue.  It does take some time to come to terms with but it does slowly get better in time.  I am one year since diagnosis and remember how I felt  when I was told. 

You are in a good place here, lots of friends who understand how you feel and importantly lots of really invaluable information and links from Nick.

Take care - we really are all here for one another.

Love Junie xx

Kirk, you will know what is right for your family and circumstances and I wish you well in breaking the news to your father and daughter. I decided not to disclose my CLL to family and friends for a host of reasons, many related to my individual circumstances which may not apply to you......But I've never regretted the decision because in the W & W stage, not a great deal is happening apart from being on a very steep personal learning curve and trying to internalise like the shock and the implications. My mum is in her 80's and I see absolutely no reason to tell her because it would distress her beyond her capacity to cope.......everyone deals with this differently but I'd urge you to give yourself and your wife time to come to terms with this as you're still in the diagnosis stage and family will have so many questions and fears you can't answer at the moment.......once you open that lid and let it out, there's no putting it back......I hope you don't mind me describing my experience because as the months have progressed, I've realised that some have regretted early disclosure and the reality is not everyone can fully understand. Cancer frightens people and they can view us differently even if we feel completely well. Especially professionally. I wish you well in whatever decision you decide to make as it's a brutal time for families....love, Jue xx <><><><><><><><><><><><><><><><><><><><><><><>