I was diagnosed with CLL about 4 weeks ago. Still trying to digest the implications. I've read read extensively about the disease. This site has been particularly helpful.
Just wondering from others on this forum at what point after diagnosis did you come to terms with the diagnosis. I appreciate that everyone's experience (and symptom development) is different. Is there a point at which one can relax a bit and refocus back onto more pleasant aspects of life?
For me, being on W & W w/o severe symptoms at present (a good thing, I know), the depressing aspect is knowing that it's not going to get any better.
Any advice would be much appreciated.
Ned
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Ned1
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It took a while for me to come to terms with my diagnosis Ned. Be patient and take every opportunity to do the things you enjoy. I was diagnosed 6 years ago and will be starting treatment for the first time. The sadness and feeling overwhelmed comes in waves for me, I just try to ride it out.
Sorry to hear your diagnosis of CLL, something none of us on his forum wanted to hear. You have come to the right place though for support, reliable information, and the thoughts and suggestions of other folk suffering with CLL. I say reliable information because there is a lot of data on CLL to found on the web which can be both misleading and scary! As you rightly point out everyone’s experience is a little different regarding the various aspects of CLL. I see you were diagnosed four weeks ago which in the scheme of things is quite early in the proceedings, you are bound to be apprehensive and worried about the implications. You have two very positive aspects in your diagnosis. You are on watch and wait which means there is no immediate need to treat the CLL, and there are no severe symptoms present. Some folk have been on watch and wait for years with no symptoms or associated illness, and some; possible many of them may live their full lives as if the CLL was never there. I personally managed two years from diagnosis before treatment was needed but I am here today and looking forward to many years to come. It’s easy to say to you not to worry but we all know that is difficult to achieve. What I can say to you is try and live your life to the full and just be mindful of any advice you receive regarding your CLL. It is a common road we all set off on but which may take each of us in different directions, I sincerely hope yours is one of the smoother rides, take care.
I just read your previous posts and see that you are going through the process of wrapping your head around this. That's normal, I think.
The thing that's difficult for most of us to understand initially is that there is nothing to do right away. With solid tumor cancers, the approach is to immediately try and eradicate it (breast cancer, prostate, etc) and to keep it from spreading. With CLL, the cancer is circulating in our blood and it's already throughout our bodies, since the blood gets around. But CLL is considered an indolent disease.
When I was diagnosed, my doc told me not to worry and so I didn't. I also didn't bother with research about treatments. But when it came time for treatment, I had not done any homework. I wish I had spent that lovely W&W (watch & wait) time getting better educated.
You have an opportunity right now. Knowledge is power and learning everything you can during W&W will pay dividends. And most of all, it will give you some peace. Six months after treatment, I am learning everything after the fact. YOU were smart enough to find this forum early. That is so wonderful!!!
30% of CLL patients never even need treatment. The ones who do need treatment have more options now than ever before.
I watched this video posted by wroxham-gb and learned more in one hour than I have learned in a couple years: healthunlocked.com/cllsuppo...
As others have already shared, this forum offers a wealth of resources. I bookmark links, download pdfs and even create wordprocessing docs to save the info shared here. I am putting my energy into learning everything I can. And that helps keep me from worrying too much.
Welcome to our merry band, even if it is a conscription-based band that we would prefer not to be in....
Well it might not get any better (though it will when you finally need treatment), but it also might not get any worse for many, many years ...or indeed ever! Over time, you will enjoy like without worry again!
It is 4 weeks from my W&W diagnosis too and know how you are feeling. As so many, revealed through a routine blood test so right out of the blue. I am so very glad I found this forum and already feel I am in a family. Because other major things are going on in my life at the moment I do not want to discuss too much with them but the ability discuss and ask questions here and receive really informed responses is invaluable. I can then share what I feel is necessary without alarming. It is a very odd feeling isn't it. I blanked it for a day or two then followed a link to here and spent a day on my own reading reading reading. A couple of days later I absolutely gave in to sheer sorrow whilst at the gym doing a yoga type class. Had to walk out as the tears fell on my yoga mat during down dog!!!!!! But someone came out to comfort me and being a long standing member I have shared with people who asked. I have told people if I felt it necessary and feel comforted by the love and concern. I hope I never have to ask them for support in the future if it gets worse. I am shortly moving and will be living on my own. I might need them but I know they will be there for me. As will my family. Perhaps we will be in the lucky group who never develop anything further but if not we now know that we must not ignore things we might have done in the past. 'It will just go away' attitude. Our doctors know that they must not ignore infections. Knowledge is better if disconcerting. I am still constantly gathering information for informed questions for my next consultation. I have to be well informed to see if it restricts my charity work travel implications. That is a big factor for me but I cannot imagine finding a better base for building up those questions than here. Welcome to a great community but sorry that you are here too.
I'm so glad you are comfortable asking questions here. HU really is the best. My husband has CLL, diagnosed in Feb/16, so I am a newbie here as well.
It's never a good idea to speak for our spouses, lol, but it took several months for both of us to come to terms with the fact that he has CLL, and there are still moments we can't believe it. I'm the researcher of the couple, and finding this site has been a godsend. Reading all the first hand experiences has given me knowledge to share with our family and put us all at ease, as much as we can right now.
Keep asking questions, reading and sharing here! One of these days you'll notice the dark cloud over you isn't quite so dark.
You're right in so much as I think everyone is different. I'm coming up for 2 years since my diagnosis, but because I had no real symptoms & if I hadn't been told I had CLL I wouldn't have actually known anything was wrong, I made up my mind fairly early on that I wasn't going to let it control my life to any great extent.
Coming on here has helped enormously, because I soon came to realise that if you can keep yourself as fit & healthy as possible you can go some way to possibly dealing the progress of the disease & so far I think I'm not doing too bad, because although my counts are going up they are doing so at a fairly slow rate.
Having said that I'm due to see the doctor again in a month or so & will see if I'm still progressing slowly, but I do have a couple of side issues I want to discuss with him that may or may not be related to me having CLL, although they could just as easily be related to me not getting any younger.
Easily said I know, but stay strong, stay positive & look to keep yourself away from treatment for as long as possible.
I think it's different for us all Ned. For me, it no longer fills my thoughts every waking minute, if at all somedays. I have often repeated a piece of advice I was given on this forum when I first joined- Don't waste what you have today by worrying about what may happen tomorrow. I try to live by that rule most of the time. However, I'm sure most of us here will admit to the occasional 'wobble'!
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