Hi Jackie - I was diagnosed with CLL I think 11 years ago now, when I was just 50. I’m now 61, and doing fine, living a normal life, until the pandemic happened! In fact it wasn’t till then that I bothered to ‘come out’ about my CLL really. No-one knew apart from medics and a few close friends from diagnosis times. It seems I’d actually had it for a while before diagnosis, but that they’d forgotten to ask me to repeat a blood test. I’m glad I didn’t know earlier, actually.
In my experience the first months, maybe year or so are the worst. They’re scary because you don’t know what your rate of progression is, or so what the impact is going to be. Once you know that I think it’s easier. Apparently only 50% of us ever need treatment (mind you the average age of diagnosis is older).
Be gentle with yourself (and your husband). Do ask for print outs of all your blood tests. I put mine in a graph. I don’t understand it all but I can see the rate of rise with my own eyes, and thankfully it’s slow. Hopefully you’ll join the watch and wait gang, with annual blood tests and a normal (if slightly cautious) long life. Treatments (if you need them) are very good and getting better. The consultant on the CLL webinar yesterday was saying that CLL isn’t something that needs to affect life expectancy for most people nowadays. Hope that helps!