Living with Uncertainty: Coping with a Chronic Blood Condition

I totally understand the worry Debbie. My wife doesn't want to hear about my worries, but I think that's a defense mechanism. So I need others to talk to. I just found this app a few minutes ago. Saw an ad on TV of all things. I joined a group on Facebook a week ago. I was diagnosed in February. It took me until now to look. Before, I think I just didn't want to face it.

I hear you. I range from total worry, to complete denial, to just trying to make the most of every day. I think the third option is the better one but it’s hard some days. I’ve been working on loving everything that is wonderful in my life, my husband, my boys, daughter in law, grandkids, dog, and my work. It seems when you get a diagnosis like this, things and people in your life become more precious. I try to focus on celebrating them and then I end up feeling better myself. I was diagnosed last August so I have been living with this for nearly a year. My numbers have been holding steady, which is good. Hang in there. There are support groups out there filled with caring people who have gone through what you are going through.

I feel the same. I'm only 48 and was diagnosed in August. I go back and forth between only eating broccoli, blueberries and green tea and wanting to have a last meal style at a fine steakhouse. Some days I don't feel great and other days I feel fine. Sometimes my armpits and groin hurt but I don't feel any swollen lymph nodes. I have fatigue sometimes but other days are fine. No other symptoms. Some of it I wonder if it's me being paranoid.

The anxiety surrounding quarterly appointments is something many in this community understand deeply. These feelings are completely valid, and it's encouraging that you're reaching out to connect with others who share similar experiences. Many members here have found helpful ways to manage that anticipation period and would likely appreciate sharing what has worked for them - perhaps others can offer insights on coping strategies that have helped them maintain their quality of life during the "watch and wait" phase.

I've had CLL for almost 20 years and over time it gets easier. Treatment 3 times but it really didn't bother me. I just go about my day. I know some people are sicker than others, with fatigue and all that. I have that as well, I'm in a physical rehab at the moment, so I just go about my day. Some days wheelchair, some days walker.

How old were you when you were diagnosed Chris?

42