So I have a question for those of you have had CLL for awhile. Does there ever come a time that you actually go through a day or more that it doesn't consume your thoughts? I am a month into treatment now and everything is going beautifully no side effects I feel healthy and energetic, but I still feel so anxious and sometimes sad and scared. I have everything to be thankful for but just can't seem to get my mind to focus on anything else. How do you get to a place where you just feel happy again? I have the best family and support system and like I said I feel good. But I am finding it hard to just be happy and enjoy my life. I'm 60 yrs old with a beautiful family, great job and amazing husband. I am currently on O & V treatment. Starting second round of O tomorrow and ramp up to 100 mlg of V on Thursday.
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Hi, I was diagnosed in 2001 like many people with a routine blood test. My numbers were really low. It was a shock and made worse because I needed surgery for a ruptured disc and was in terrible pain.I think that this stopped me being preoccupied with the cll. The hospital only saw me 12 monthly for 9 years. I had fcr which was the best there was in 2010 and had complete remission for 5 years. I began ibrutinib in June 2019. It worked really quickly. My dose has been reduced and my numbers are normal. I do need ivig every 4 weeks.
Your question about worrying and being conscious about cll is difficult to answer. I was very nervous about chemo and my daughter with her tiny baby spent her days with me but I started going on cruise holidays to lovely places and I didnt worry about cll.
I have had more problems with my back and pain. I have fatigue which is hard.
As my numbers are ok I dont panic about cll but covid has stopped us doing some things.
I think as you are having treatment it is only natural that until you have remission it will be on your mind. I used to swim and see friends and I think being distracted is the secret to thinking less about cll. I see my friends but covid has stopped me going swimming and seeing others.
You have cll at a time when there are amazing treatments. When I began treatment the uk had not long had rituximab and it was a game changer.
Who would have thought we could take a tablet and carry on with life. I have had cll for 21 years. This site has given me loads of information but despite that I feel its best to limit how much time you spend looking at it. It is bound to make you think about cll.
Things will get better. If not I would speak to your cll nurse because they can support you. There may be ways to help you cope. Try to look forward to things and maybe exercise even walking will help. I like people and chatting about different things.
Thank you Anne. Your reply is so helpful. The funny thing is I'm not scared of dying or anything and feel physically better than I have in years. Then I get these days I'm just so emotional. I get so mad at myself. In time I will get there.
My advice is worth what you paid for it, and I am not yet in treatment though that appears to be imminent. But I do have the experience of both parents wrestling with terminal cancer diagnoses and a psychology degree so take this FWIW.
For me the first year or so, CLL was very present in my life. How do I manage career? How do I tell my kids and support their needs? How do I not drive my spouse crazy? Lots of research and reading. And every bad physical feeling was potentially linked to CLL.
I then had one W&W visit where counts had dropped, just a bit, instead of their usual rapid ramp up. Oncology actually said I could defer my next appointment a month, woo hoo! I then declared that summer to be CLL-free, and lived it mostly. Took a vacation with the kids, planned some career advancement, spent time with friends, basically forgot about it.
While the next appointment was a bucket of ice water (counts rebounded high and started to feel more serious pain and fatigue symptoms), I did have a few months' "vacation from CLL" I'm not sure I could tell you exactly how I got there, but you can get there.
Looking at parental journeys down the cancer road, they seemed to do best when they stayed in the moment. Eastern religious concepts and meditation tend to offer similar advice and support. What's the thing in front of your nose, and just work on that... and you can't work on three other things while doing that.
I have tried to learn from that mindset and also "break it down again" (with the Tears for Fears song as soundtrack) to really small stuff, even to the the kinds of things that little kids worry about. Hey, I got my shirt buttoned correctly, woo hoo! I walked the dog, yay Scryer99! I got this email done, hooray! Living in the moment tends to keep the bigger stuff at bay.
Professional support is also an option. I've worked with a clinical therapist for years (non-cancer, more related to severe childhood trauma) and having that neutral-but-concerned-advocate is really helpful. A lot of the CLL framing is not "scared of dying", as you say, as much as it is "how do I manage all this in light of family/loved-ones/career/legacy obligations?" Therapists / life coaches / social workers can help you build a framework that handles those issues.
I also lean on time management systems. It's geeky tech stuff, but it also helps actualize the points above. How do you build a planner that's not just a to-do list? How do you keep that plan aligned with your values in life -- which are definitely not just "deal with CLL"? Once you write those values down, what's the structure in how to work on the tasks that build up to those values?
On the values-centric living front, Stephen Covey's work can be helpful. I found great value in "The Ten Natural Laws of Successful Time and Life Management" by Hyrum Smith.
For planners, a lot of folks like Getting Things Done or the Pomodoro Technique. I personally am a huge OmniFocus fan, but it's pretty heavy-duty planning capability.
That all sounds like a lot of work. It is, at first. But it makes sure that Health is one of the five values that I work on every day, and there are four others that are as important to me and I make headway, however minimal, on at least one or two of them a day. Helps keep things balanced.
Long, rambly, late at night post on morphine, but hopefully some decent thoughts somewhere amidst the mud. Hang in there. Good times do come along when you maybe are not expecting them.
It is hard not to think about CLL when you are going for blood work every other week, seeing your CLL doctor every 3 months and taking Venetoclax with lots of water every day.
However, Venetoclax will probably put you into clinical remission at some time after the first or second year. Then when no longer taking the meds for 3 to 5 years you will have weeks or even long when it just does not enter your thoughts unless the occasional blood work is due. When it does pop up in your thoughts it passes through quickly and does not occupy much of your time. 😊
Reading Philippians Chapter 4 and verses 8,9 has always been helpful for me.
it’s not easy to know we have an illness and although all is good now it can all change …
It’s natural that it consumes lots of our thinking and results in anxiety . Start with enjoying different good things in your life … meeting friends , going out with family , special occasions and more ,and during those times CLL thoughts are on the back burner … We forget “ we have this illness even though it’s there ….It’ll be waiting for us but as long as it’s not interfering with other parts of life now , we can enjoy .
As has been said by others , put those CLL worries in a box and leave it on a shelf , you can always get the box , but in the meantime it’s out of site, out of mind .
Best would be if we could cure CLL and then be illness free Since this is not yet an option , let’s try and make the most of the good things …
Hi, like Anne I was also diagnosed in 2001. Initially I was consumed with worry but as I got more accustomed to the idea I realised there were a ton of opportunities for me to divert my mind, so I quit my full-time job in 2002 and put a lot of energy and time into travel. I often have to remind myself, even in these Covid times, that I do need to be very careful though and I am.
In the early days I teamed up with another person — a complete stranger — who also had CLL and we formed a fun support group called the Wednesday Loafers. Search for “Living Wednesdays to the Full” on YouTube if you’re interested
I haven’t travelled since 2019 for obvious reasons but I’m seriously planning for 3 trips in 2023. I’m currently taking Venetoclax (commenced in April 2018, in remission since November 2018), have just turned 75 and am already thinking about how to celebrate my 80th.
I was only diagnosed in August and thankfully I’m stage 0 but I still feel so anxious about the future. Everything seems tinged with sadness, even the things that used to make me happy. I live in the beautiful Lake District but when I look at the wonderful views now I feel sort of heart-broken. I carry on with each day as if all is well but I don’t feel any joy. However, not to be too depressive, there are moments now when I do forget. Mostly, when I’m doing something creative. I’ve joined a painting group and that is my solace. I have to concentrate to paint and that’s the time when I’m thinking like the old me. I’m really new to all of this so I’m hoping that gradually I will adjust and forget more often. I hope you can find something that gives you pleasure. I guess all these thoughts are normal and it does help to share them with others who understand. This group has been a great help to me. Sending you hugs.
Great responses. This is something a doctorate could / should be based on.
Your feelings are normal and common to us all. We all respond in our own ways.
I am 2015 diag 2018 FCR 2022 start yr 5 of remission. When was it that my first thought on waking stopped being CLL? I can't recall! I do remember wondering if that would ever happen, then at some point it did.
Three things helped me.
1. Become the patient. Let your Doctors make the decisions and "fly the plane". Your job is to live your life.
2. Mindfulness. I found birding and photography and a good friend with the same interest and to my amazement 2 hours could pass and I had not thought of CLL. For you it could be painting, reading or the garden. Find your thing.
3. Know what makes you happy, and do it! Often. Your friends and family will notice!
Steer your focus and preoccupation and ruminating about the "what ifs" away to things that are real. CLL is real enough, sure, but most of the "what ifs" are not.
Know what is in your control. Know what makes you feel happy.
Like so much in life gets easier with practice.
...says me, day 4 post total knee replacement - the "what iffing" knocking at my door again!! 😉
I was diagnosed in 2006 and later realised that for the first 18 months I was in total shock. I thought at the time that I was coping well but looking back I clearly wasn't. However, after that I came to realise that CLL wasn't a death sentence and there was a lot of life left to live. I was 48 at diagnosis. At the time there were few support groups and fewer treatment options. FCR was still in trial I believe. I was lucky and in W&W until 2013 when FCR was available. By that time CLL had just become a part of my life and not something I dwell on overly much. With the massive advances in treatment I am able, in the main, to just get on with life without it clouding my thoughts. I go days without thinking about it really. It does influence how I live since Covid. I still shield and am very careful re hygiene etc. I've had treatment since FCR including Idelalisib. I'm currently on V and R and feeling very well. Before Covid I lived a mainly normal life working and going abroad for holidays. Everyone is, of course, different but for me it was a big help to do things I'd always done. Also we all naturally have different mindsets. I'm a bury my head in the sand person to begin with and not a natural worrier. I do have an off day about it sometimes though and, like everyone, the worry comes back quickly if bloods are out of kilter or I'm unwell. I think the biggest influence on how I've felt and coped over the years is having absolute trust in my consultant and specialist nurse. They have given me such confidence with much kindness. The haemotology unit I attend is key to how I feel about having CLL and I always recommend everyone, if at all possible, having a specialist CLL consultant who they trust and can talk to. And of course people on this site are always here for you too 🙂. I wish you the very best. Gillian
I agree with Anne. I have had CLL since 2016. In treatment since 2017. I am now on a maintenance treatment and except for my every 3 month doctor appointments and IVIG every 6 weeks, one would not thing I was ill. As with Anne, my muscular-skeletal issues are much worse than my CLL issues.
Early on I would wake up in the morning and my first thought would be, I have blood cancer, CLL….now, I really don’t think about it until I see my pill (Ibrutinib). Since COVID obviously I am reminded of my CLL more often since it is what caused my immune system to be wonky. I saw my specialist last week, numbers all good, no enlarged nodes, all is good except for my immune system. Were I not on the Static trial here in the US, I think he would bump my visits to every 6 months.
One bit of advice I will give you…at first I devoured this Healthunlocked CLL page first thing every morning and what I saw or read would sometimes determine how I would think about my CLL that day. I still read it every day, but not first thing in the morning. Now, when I see the e-mail waiting in my box, it does remind me, but it doesn’t consume me. You will get there as well.
Lot of good advice from your friends here, GradyBoy. Just remember that life is a process of ebbing and flowing of which CLL is now a part. You have obviously taken all the useful steps one can take in accepting this new addition. The “what-iiffing” readily intrudes itself now, inviting you to think that more “what-iffing” will get you to a better place. Sneaky bugger, the What-iffer! So, when he visits, just greet him as a new companion, giving a polite “Hello. Thanks for your concern. Everything is OK. Thanks for checking on me. Sorry, no time right now. I’m ….playing with my dog……smiling at my wife….finishing my knittng….being grateful for the beauty of the day…….working……listening to a friend……..feeling my feet while I walk…..making the grocery list……or anything else. Go gently back to anything else than continuing the visit.
Anxiety always thinks more of it will make things better. Poor fellow. Needs our sympathy and peace that passes understanding.
One main thing that helped me avoid spending time & energy worrying about the condition my condition was in, turned out to be this forum, coupled with words of wisdom from my CLL doctor.
I am a worrier by nature, and a jump in and fix it now person ...... preventative maintenance???? Thats me 100%.
Theres a ton of stuff I worry about on a daily basis, but for some reason, this concern rarely involves CLL.
I completed O&V treatment 4/2020 & 12/2020. Luckily that experience went very smoothly and it left me with renewed physical and mental energy.
Perhaps the only negative issue currently concerning CLL, entails me keeping informed about all the new CLL medications & treatment combos that abound ...... and lets face it, thats a damn good thing.
This group taught me that we have a long term disease, it can usually be controlled, knocked down and in most instances we'll have enough time to gather info, learn about CLL and make (hopefully) intelligent teeatment decisions.
Optimistically, as you progress down the O&V treatment road you can get to a point where you feel better . . . . MindBody.
You might come to the place where, concern and worry energy is directed towards, things like, "I been driving on bologna skins, I gotta spend a bunch on new tires, what a bummer" or "My best friend just passed, what can I do to help her family", and conceivably, over time, your CLL thoughts move away from constant daily thoughts.
Thank you for your reply. You sound like you did the same one year treatment plan I am currently doing. May I ask did and of the Venclexta ramp up bother you? I am only on week two (50ml) but so far I haven't had any negative effects. I am hoping that continues. How was it for you?
I dont know how or why ... neither the Venetoclax rampup and full dose, as well as the Gazyva, bothered me. As far as a medicated experience this could not have been easier.
I wish you a smooth ride as well .... and who knows, in time, you may find yourself barely thinking about CLL.
I just try to stay busy. I have also learned not to assume every ache and pain is due to CLL. I have managed to beat down my back pain by first steroid shots, followed by PT. I continue to do my PT exercises. My husband gave me a massage table last year which makes it much easier to do my PT exercises.
We try to get outside as much as possible - hiking, walking, riding our bikes.
Hi I don’t have CLL but had another treatable cancer this year and am 73. Unlike you I greatly fear death always have from the time I understood what it is. As I see people around me getting older into to their 80s what I’m seeing in my life is numerous people dying from complications of a fall more than from a terminal type of illness. What I’m trying to say is nothing is guaranteed accidents can happen any day so try to enjoy every little thing. Take that trip that you’ve long to do of course with precautions due to Covid and others. Take time to enjoy your family and friends. From my husband’s course with CLL and now with him being in remission treatment has come so far. Take care.
Just wanted to say yes this day did come for me. I was diagnosed at 54 and I’m 62. I’m starting my 9th year of diagnosis. Leading up to treatment was a difficult time for me, lots of worrying and being so afraid of infection due to being immune compromised.
The turning point was after I’d settled into my treatment of ibrutinib, 3 years and eight months ago. It was a rough start getting medication levels correct but I’m doing great now. I’m retired so most of my days are spent exercising, puttering outdoors or playing with my grandkids.
Have confidence in the process and gratitude goes a long way. It sounds like you have that in abundance.
I was diagnosed in 2013...started treatment 2014...except for the problems last year, I have been good. Tired alot but if I stay busy, I am good. I try not to dwell on the fact. When first diagnosed, my oncologist told me " if you have to have cancer, this is the best kind to have." I get monthly blood work and see the doctor every 3 months...we have no idea what might be coming down the road but live life well and don't let it consume your thoughts. Be glad you don't have something much worse. And the advances they make all the time are very encouraging. I wish you well!
I found that a significant amount of anxiety comes from experiencing the affects of CLL and treatment, yet, being subject to the awareness that others do not perceive our challenges within our reality. Not so much in a mental measure as needing pity, but rather how responding to other's perspectives affect experiences in outcomes giving measure of our person. E.g, expectations of participation in events including work, weddings, funerals, recreation, social gatherings, holidays, routine daily responsibilities etc... Because I did not look like a hospice patient at the end of a failed chemo attempt, It appeared that others thought it would have some healing or dismissing affect if I was to charge out front as I did before CLL.
Perspective - "Those of us hosting CLL experience the presence of an uninvited guest more intimately than those who are able to decline the visit".
Yes there can be a burden of expectation within us that amplifies the consuming thoughts present will CLL (anxiety). I found this to be most intense right after diagnosis (4-5 months), during the higher level of disease progression (3 months), and during treatment when I was having side affects (minimal and random). The dissipation of anxiety came increasingly as the treatment improved both my lab reporting and my quality of life.
I suppose that what influenced much of the anxiety for me was brought on by how I felt when people that I know made statements like "You look good" and "I have read that if you are going to have cancer, Leukemia is good cancer" or "People with CLL can live a longer than people with other cancer". In addition, an overwhelming number of people would smother me with reading material that allegedly proves that leukemia is either curable by changing your diet, consuming quantities of power foods and herbs, or using a mysterious substance used by ancients or exotic peoples. In people trying to help, they actually intensified my despair. People who's point of view that I valued seemed to have dismissed the validity of what I was experiencing by measuring my capability from my appearance. The irony was that I worked hard to shine up both my appearance and mental posture so that the unpleasantness that I was experiencing from CLL would not define the interaction in relationships.
Aside from the on going analytics, I realized the importance of living well primarily one day at a time (they pass by quickly and soon add up).
I can honestly say that a day does not go by that I am not visited with the thought of CLL, but it is no longer the Sword of Damocles, rather it is a passing aggravation that is replaced with some action of benefit relevant to the elements of the day. The accumulation of enjoyment during the day mostly dissolves the aggravating awareness of CLL.
Faith in God being my greatest compliment in overcoming anxiety, a few strategies that I employ to help me live well with CLL and replace anxiety are:
1. Increase in the knowledge of CLL through credible sources.
2. Observe and emulate experienced CLL patients who pioneer and advocate.
3. Focusing on advocating and improving my outcome with the knowledge gained.
4. Share credible information with other patients.
5. Nurture thoughts and actions for which I can positively influence.
6. Limit exposure to the things that I cannot control or influence.
7.Feed the spirit of gratitude.
8. Forgive and accept forgiveness.
9.Live one day at a time being reasonably productive relevant to the day.
10. With regard to long term plans, I go ahead and plan, yet, with the understanding that the plans may change as God directs my steps.
This is a post I wrote nearly 6 years ago (I’m now 10.5 yrs since my CLL dx and thankfully uMRD). I think in many ways it acknowledges your feelings on the subject and I’m posting it to let you know your feelings are entirely normal;
This is the description I gave at that time of how CLL made/makes me feel. However, it feels more like a sleeping pussy cat than a prowling tiger these days but never do I underestimate its power to awake and pounce! 😳
‘I can't quite explain what internal spark has been extinguished in me and I'm not even sure people around me notice but it's clear that just the knowledge of CLL has tarnished something. It's secretly corrosive like internal rain on a sunny day and it's the thing I hate CLL most for. Sometimes I find myself looking at photos to see if it's visible in my eyes and to my horror, I think it is. It's that 'hidden aloneness' which the condition makes us carry even when it's not causing noticeable physical mayhem.’
Beautifully written You nailed it! Thank you, for posting this. I am going to work very hard to work on saying no when it consumes me. I couldn't ask for things to be going any better, if you have to have this condition. I feel great with zero side effects frome treatment. Thank you! I hope and pray you will continue to do well.
You express your feelings so eloquently and I’m very much relating at the moment. I suspect that it’s in part due to my 2nd ‘cancerversary’ coming up in December.
I have the SLL presentation, from the outside, even looking at my bloods, with the exception of lymphocytosis flagged as HI it all looks normal. On the inside though, routine checkups have given doctors scan anxiety.
I am still early in this journey but far enough away from diagnosis to have come to a place of understanding, if not total acceptance. For now this disease is very indolent. I am naturally an optimist, the glass is always half full kinda girl. I know and feel I am lucky on many levels, I practice gratitude regularly. As a realist though, there is a big BUT …
They tell me I have the ‘good kind of cancer’, heard that a lot. Logically, intellectually I can’t disagree, but on the inside I don’t always feel lucky! I still have an incurable cancer, no one knows how or when it will progress at a time when an evolving virus is still running amok. I am also at that difficult age again, too young and financially unable to retire, still believing that life is an awfully big adventure, (despite the inevitability of death), but with an uncertainty about a future that may stop me going out to play like that recycled kid I am, after a life time of adult responsibility. That can still make me mad. It is what it is & I have a good therapist.
Those feelings I can manage, what I struggle with is what I believe to be ‘Toxic Positivity’; perhaps this is me plugging into your description of ‘hidden aloneness’ and feelings of zestlessness, missing that spark!?
Feeling the need to hide, deny or swallow my negative emotions/feelings so that others don’t feel uncomfortable, or protect them from my reality, rather than fully acknowledging, processing or just sitting with them comfortably until they pass, can be as toxic on the body as the cancer meds I have yet to take!
These are just my thoughts, no need for a response, sometimes they simply need a place to go. Thanks to Newdawn & all the mods who have created this safe space so people can express themselves honestly.
Think I’ll get myself a cake, iced with “Congratulations on getting the good cancer”. At least eating my feelings will be sweet & satisfying.
Rainbows & tornadoes, a visual picture of CLL/SLL as the ‘good cancer’.
Many thanks for your kind and insightful comments PoisonDwarf (though I’m reluctant to call you that). You certainly seem to have adapted to and adopted the right attitude and long may it continue. Your mention of being told ‘we have the best kind’ made me think of something I penned very early on. Not that I’m wanting to encourage cringy poetry but maybe I’m feeling a bit nostalgic these days. Anyway here it goes;
'I woke up this morning…(well that's a result).
I winced with the backache and put on a brave front.
What's aching or paining? Why am I so hot? Shall I go for a brisk run? Am I losing the plot?
I'm itching and scratchy, nose runs like a tap, brain has ground to a slow crawl and I need a deep nap.
I'm up now, I'm showered, I've had my green tea. I'm not sick at all... I'm on Wait and See!
It's not your condition, it's all in the mind...Be grateful dear patient....you've got the best kind!'😉
Newdawn’s a poet & I didn’t know it! I love your way with words. Thank you for the grateful giggles. Much needed and appreciated. 💐 Can I have permission to take a screen shot of the poem & share elsewhere?
Maybe it’s time for a complete name change. Any suggestions anyone? I meant to edit it to Poisoned Dwarf - I’ve always been under 5ft, now older & wider but never taller. The Poison bit was being mad that my body had betrayed me - Larry & The Lazy Lymph Nodes hadn’t learnt to play Don’t Worry Be Happy at that point! 😜
Yes no problem. It’s hardly Poet Laureate stuff but I don’t mind putting my name to it. It’s rather a tongue in cheek observation of how others can judge our illness.
Yes choose a name more deserving of your bright outlook (though you’ll find so many are already taken now).
Wow, Newdawn, I wish I had known about your old post as I was navigating the last few years. It would have been a sort of lighthouse during rough seas. Thank you for writing that.
Thank you for your post. I’m a way behind you on this journey, so don’t have a definitive answer on many things, but it’s reassuring to get others’ perspectives even though their path is different, it’s a reminder that I’m neither alone nor that different in a lot of the thoughts/feelings it evokes. I have certainly asked myself the same questions.
At times I felt guilty for allowing myself to be happy, even grateful that it’s not an aggressive form of this wily disease or any other form that they regularly monitor me for. I have also beaten up on myself for feeling overwhelmed with anxiety & fear at the whatiff’s??? I came to the conclusion that it’s part of being human & learnt to be gentle with me when the big girl panties go into hiding. It passes a lot more quickly then.
That’s a long way of saying, I am really glad that you are feeling so well. That treatment is working with no side effects & you have the supports you need. Enjoy the good times, let yourself be happy, in the knowledge that the uncomfortable feelings will pass and you will deal with any challenges, as you already have done & continue to do! stay well.
There is a dragon and it is mine.It can be fierce and menacing, threatening and sometimes it can even be comforting before it tries to leap and take a bite out of me. If it were only CLL I could slap it silly and push it back into the cave it hides in when I am able to forget it for a while. It's called life, aging, death of loved ones, illness and it's CLL.
I fight the dragon but it always is growling in the background letting me know it will be back. My confidence has increased with O and V as I am now UMRD. My dragon lurks but I am able to forget it a little more with the passing of time and the great care of my team. The support and knowledge of everyone here is the best assistance I could ever ask for. ♥️♥️♥️♥️♥️♥️
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