Hello. I have been following this community for awhile now. There is so much great information and it is very helpful.
I am 47 yrs old. Mom of an 11 yr old and 18 yr old. Diagnosed from bloodwork for a minor procedure. Probably have had CLL for 4 yrs. I feel good. My numbers are still just slightly elevated. Doc says it should hopefully be another 10 years before treatment.
Most days I feel happy and normal. I am a planner and this has been really tough on me mentally. My life changed forever but since I am healthy right now, no one gets how I feel inside. Some days are great but other days are hard and my family thinks I'm crazy. I guess I just want to connect with people that understand what is happening.
Like I said, most days are good but I find myself searching for someone who gets it. Thanks.
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seagal70
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I think you will find alot of support and for what I have seen on this support group everyone does really understand. Like yourself I feel pretty good only recently diagnosed. i wonder if I was not diagnosed (routine annual physical which my GP sent me for further blood work) that I would even think anything was wrong. I do get tired at times and not sure if its my aged, stress, this disease or a combination of all three. I have only shared this with a few close family members which was tough, for the most part keeping it from friends, my kids etc... knowing that they would only worry also. It is a weird place to be, wondering if anyone notices anything different about you. I have my good days and bad days (mostly mentally) where I try to live my life and do everything I used to do before, work out, go out to dinner with friends and travel. I go to sleep and wonder what tomorrow brings. At first I was a train wreck inside but have found some balance by reading up on all the advancements and following this support group. I do try to be more careful with being in the sun and round sick people so I guess knowing sooner than later helps with that, but the mental part is challenging. I try to make the most out of everyday, laugh and joke around, don't sweat the details, pay more attention to my family, friends and kids. I am hoping for the best, maybe some real advancements that will help myself and everyone else on this board. If I can make everyday count and all the hard working smart dedicated efforts yield a good outcome for many if not all of us while with what I know now I make choices that really appreciate every moment, that would be a pretty awesome future. I am only 55 and have so much to forward too. I went to dinner with my three kids last night and it was awesome. For now that's my plan and what keeps my head together.
Thanks for your reply Superdad3. It sounds like I am not alone in the way I am feeling and thinking. Everything you mentioned is very similar to my daily experience. For now, I am working and getting plenty of exercise. I watch being around sick people, although that is getting hard with flu season and kids! I try to spend my time around people that I love being with. I let go of some of the negative influences. I am traveling as much as possible. That's what helps. Thank you for your story.
Hey there. I am 47 as well. Father of a 13, 11, and 7 year old. I know where you are coming from. Luckily I have good markers too and have a slow grower as well. Probably had this 5 years prior to diagnosis in 2016. I went through a period where it was all I thought about. I googled, read, watch youtube videos on CLL. Finally, I decided I have to get on and live life. I choose to look at the positives....mainly it is most likely a long time to treatment for me, there are great new medicines out now and more in trials, and I feel good.
The progress that has been made in CLL that I have seen in the past 1.5 years is amazing. I can't imagine how much more progress will be made in the next 5-10 years.
The whole video is great, and my specialist is on the panel. Dr. Wierda is usually conservative with giving overly-positive comments because he knows how complex CLL is. However, if you watch at around 34:40-36:00, he makes a comment that is very positive. He can see a day where we go in for treatment for set period of time and we're done.
My only advice is to try and stay positive, take care of yourself and if you need to talk to someone, seek counseling. I did.
BTW...the patient power video is a free membership I believe. It's well worth it.
Thank you for your advice and for sharing the link to the video. It was was a very interesting and positive video.
I am continuing with my pre-diagnosis schedule of working, running and taking care of myself and my family. That keeps my head on straight but it is nice to know that I have support from this community when needed!
Yes, it is tough mentally, especially on us planners. Our doctors can't predict either. Dr. Kostas Stamatopoulos (from Greece) used the words "cognitive dissonance" in a video once. (I've looked but can't find it online at the moment.) To me, that describes the psychological conundrum we live with. We're conflicted. We have an incurable cancer but we're supposed to sit and watch it simmer. It's a roller coaster, it's wearing and it can bring out our weaknesses in a hurry.
This isn't CLL-specific, but you might find "The Emotional Facts of Life with Cancer" helpful. I did.
Another 10 years until treatment - we all know that nothing is quaranteed, but who knows where treatment will be then. I was recently cleaning out old boxes of stuff and came across the LLS booklet I was first given when diagnosed (2003). None of the treatments now considered standard, not to mention all of the newer treatments recently approved or in trials, are even mentioned. Don't expect those outside of the CLL world to understand your feelings. They really can't. Everyone in this group has been there and does. If you are in the US, check cllsociety.com to see if there is an inperson support group near you, or one being planned. There is also a lot of good information on the site, regardless of location, including links to other reliable, CLL specific sites.
Thank you. I find myself telling people that I won't need tx for 10 yrs or more so that they will feel better. I know that is not guaranteed but it seems to make them feel ok with it. I am excited about the ever changing research and meds. There is definitely good reason to stay positive! I guess I just need reminded sometimes!
As the others said, we are a community that "gets it" and will help you when you ask. Let us know when you need us.
Len
I had a coworker say to me that cll is sort of like mono right? I was so angry but didn’t want to speak out loud what I was thinking. That was early days when I was hiding my disease. I am still in w & w and I’m on sick leave due to a 7 month long respiratory infection that at the moment is messing with my vocal chords. If the same colleague were to say that to me today I would reply “Except it’s cancer and I live every day wondering if this is the day the hatchet drops and I need treatment or some other cancer shows up.”
I now realize that I need to be more open about cll and educate those around us. If for no other reason but to show them that cancer doesn’t always equal immediate death or fight fight fight. Sometimes cancer means accepting your body for what it is doing and really living each day as if it were your last with the most possible optimism.
Thank you all for understanding and being there the share.
I have always been open about my CLL. My friends almost forget I have it. For me this is the easiest way. I want to be able to talk about it with no drama.
There have been lots of discussions about to tell or not to tell on this site. Do what's best for you!
At first I started telling my close friends and family. I told a few others, coworkers. Some ask me how I am oing every time I see them, some either forget or don't mention it because, I'm guessing, it is uncomfortable. I have since stopped telling people because I want to feel "normal" again. I don't necessarily hide it, I just don't bring it up. It seems to work for me. I look and feel healthy. I am still running half marathons. I am also doing things that I have always wanted to do. Trying to appreciate everything life has to give. I know not everyone gets that chance and I feel very blessed and thank my God everyday for another day.
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