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Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by leukaemia to come together, share experiences...
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.
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.
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:
Chronic lymphocytic leukaemia: in a nutshell,
Chronic lymphocytic leukaemia: in a nutshell,
Support and further information:
Support and further information:
Good luck with your up and coming consultation. keep us posted
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
Thanks Nick that was some great info and another website and group to join.
Jue, Thanks for that sound advice, I will take on board what you said, I like you see no reason to tell my Dad yet and my daughter is coming to visit at Easter so may save it to tell her face to face and hopefully by then I will have seen a specialist.
Hi Pitbull, sorry about your news but you must really try to stay positive. I was diagnosed 3 years ago, im 56 now and during that time Iv felt reasonably well, odd lump and bump in my neck and under arms, nothing yet that really stops me doing what I want to do. I go for 3 monthly checkups and I believe am heading for some form of treatment at some time this year. Hang on in there, there are some lovely people on this site, it helps being able to ask questions or just have a moan if your feeling a bit down and everyone on here understands what its like to live with CLL. Also just to let you all know, im going next friday for my bloods after finishing that CLEAR Trial, so fingers crossed that it may have helped my counts, Love and hugs to you all, especially those who are going through treatment now. Take care, Pat123
Welcome also from me. I've only posted here once or twice since my diagnosis late last year, but I do call in regularly to read what others have to say. Perhaps I should post more, but at the moment I'm learning more from others and don't feel ready to contribute any more at the moment.
I agree with Jue here, but of course "who you tell" depends on your personal circumstances. I live alone, no nearby friends or family close-to-hand (which is fine, not an issue), so no practical reasons to tell anyone. I guess that if, like you, I was living with someone, I would tell them.
I chose not to tell my family. Older parents (with their own 'care' issues) and a busy sister (with two young boys), all live some distance away. Because I'm on 'watch and wait', and in reasonable health, it would have simply worried them for no reason.
I did tell a couple of friends. Again, my friends live miles away. They have been OK about it, although on reflection I perhaps needn't have told them so quickly (I did panic for about 24 hours!). But day-to-day, I don't discuss it with anyone. One trusted colleague at work does know, but that's it.
I am fairly well. I have felt rough this month (bad throat), but I am just getting used to feeling very tired all of the time. This makes working normally quite tough, but the advantages of "not telling" are still greatly outweighing the advantages of telling folks.
Like I said, I don't post here often, but I do read regularly. There are some super folk on here who do post regularly, and who's wisdom and thoughts I have been learning from. Perhaps I will have more to say in the future. But for now, best of luck and kind regards.
Thanks a gain all and Cheshire Cat I am much like you and while I monitor forums a lot I am not a prolific poster, I guess the beauty of a forum like this is you can learn so much from others. Like you I am very new to this so will learn and take on board any advice. Once I am more knowledgeable about it all I will be in a better position to contribute.
Some great advice on who to tell and yes after the initial shock it was who do I tell, I suppose it is human nature to try and share your problems with others. I have told my wife as she is the one who is going to have to put up with all this and support me most through it.
I have decided there is no need to tell my Dad unless the condition gets worse, no point in burdening him with something he cant really deal with and doesn't need at his time of life.
I will be telling my daughter at Easter when I can sit down with her and have a real long chat and again I should have more information by then. As for my brother, I don't see a lot of him so I again see no need to tell him yet. I have told a couple of very close friends and they have been very supportive
As for my new job, I went for the medical yesterday and apart from reveling my blood test results everything went great, Occupational health seem to think that there is no reason I cant start the job so I am starting as normal Monday, the nurse did say she needed to get some advice from her managers and she emailed me last night and told me they were going to defer the decision on my fitness to work until they know more, I will be monitored more than usual by them and she has asked HR to make me an appointment to see her in March, so all in all it sounds like I will get support from them and I will argue the fact that my medical shows me fit to work with the caveat of an abnormal blood test.
That is all for now :) I should start a blog with all this! It does help to record it though I find.
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