I wish I did not know......or am I wrong?

I am newly diagnosed. I have no symptoms, and the CLL was found by accident. I am on the watch and wait phase of this illness. The trouble is, the anxiety is making me unwell! I feel stressed, can not sleep, have indigestion and just feel miserable. I am giving my husband a hard time. I just wish it had not been found, until I presented myself to the GP with a symptom or a lump. Surely that would be better? Or am I missing the point?

15 Replies

  • I had it for 4 years before my doc felt I should be told, smudged cell sort of forced his hand....I made changes in my life. A year 9 months later Im in better shape, better blood test results. I get the fear and and anxiety....oh ya..but now I can fight...I do alot of natural things to help my body fight...we all have cancer in us all the time, it is getting you immune system in a state that can fight it again.

  • And you can never be wrong with what you feel. We're entitled to our feelings.

  • I think many of us have pondered on this one Thinkimjob and can understand how you feel. My lymphocyte level was rising for 4 years before I received a definitive diagnosis of CLL and by then I think I knew there was no self limiting infection causing the rise. Even then I was unprepared for the actual diagnosis because the words, leukaemia and cancer strike fear. Reality is, there are actually worse things I could have been diagnosed with but that doesn't help when we receive the news. I am grateful however that my GP spared me those years but was in contact with the haematologist who was overseeing my lymphocytosis.

    We all cope differently and it can bring on feelings of desperation and anxiety. If these feelings are enveloping you and causing you unpleasant side effects, please mention it to your doctor because you may need some counselling and/or medication to help you over the difficult adjustment period.

    It sounds like you might be retreating into yourself and taking it out on your husband when it's the ideal time for you to find support from each other. I can imagine he's fearful too. Is there someone who you can talk to, perhaps a close friend or family member? If you're in the UK, Macmillan have a support phone line which may help.

    For people who spend many many years (in some cases forever) on W&W, there may be an argument that ignorance is bliss especially if there's no symptoms but there's the counter argument that to be forewarned is forearmed. Regulars on here will know I was diagnosed with a malignant melanoma skin cancer a year after my CLL diagnosis. Frankly I wouldn't have been watching so closely for skin changes if I hadn't known about my CLL and the increased risks. In truth it may have saved my life.

    I wish I had the words to take away your fears and unhappiness at the moment Thinkimjob but sometimes we have to work through the grieving process associated with a cancer diagnosis ourselves. Although you may not believe it, it does get easier...the fear isn't as acute and we learn to live well in spite of it. You're at a very early stage and all is well. There's no reason that can't continue for a very long time and if you ever need treatment, developments in CLL make a very long life much more possible.

    But seek help if you need it and we'll help as much as possible on here. We understand.

    Warm best wishes,


  • I shared some of those same feelings at first, at least in private. (I was just diagnosed the end of April of this year.)

    The "easy" answer is that we can be thankful that we have time to learn about the disease and the medicines used to treat it, should it become necessary. We can build communal support (THANK YOU everyone here in this forum), and we can look for experts and form a network or medical team/resources. W&W is time to spend doing things that might have to be put off with treatment, so good to focus on them now. Learning your CLL diagnosis early is helpful in all these ways.

    The harder answer:

    Since we can't change the reality -- we know we have CLL --the main thing we CAN change is the way we think. Mental exercise is, at times, every bit as challenging as physical exercise, but both are important. Talk with a therapist if you need help learning how. I found that what I learned in such sessions to be invaluable now.

    You will find your own best path for accomplishing this, but here (in a very small nutshell) is what works for me:

    When I start to feel stressed and depressed about the fact that I have CLL, I very consciously (and often with some difficulty) force myself to change the subject of my thoughts -- typically in one of two ways:

    I may start by focussing on all the aspects of my life for which I am thankful. This could be anything from grandchildren to having fresh water come from my tap. Often, all I have to do is look around me to find more and more "good" that I've been blessed with. Sometimes there are negative thoughts that try to intrude -- the "yes, but the CLL..." -- and the exercise here is to refuse to let my thoughts continue on those negative interruptions. Being in control of my thoughts is NOT easy, but it IS possible (at least most of the time!) and it gets easier with practice.

    The second approach is more meditative: I take myself (mentally) to a place of beauty and serenity. It might be imagining a sunrise, a waterfall in a forest, the songs of birds in an aviary... and I spend time there, just "being". The effort of the meditation, especially when constructing all the details of that environment, leaves little room for stressful and depressing thoughts.

    These are both "temporary" approaches -- I can't spend all day in reverie -- but they definitely help stop the cascade of stress and worry that would happen without them. (It may mean you have an understanding with your husband that you will declare "time outs" when you can find a place to think -- especially when you start to stress out on him.)

    I'm not saying I will never have moments full of tears, moments of self-pity, moments of depression. They happen. The challenge is not to let those thoughts take over and drive my life.

    A third thing: Physical exercise. A good workout, walk or hike can do wonders. I especially enjoy having company on the walks and hikes, or music during a workout, to help me not to "dwell" on negatives of life.

    I wish you well, and hope you will find the support, information and compassion on this forum to be as invaluable as I have over the past couple of months.

  • Well said. I needed a therapist when I went through a divorce after 23 years of marriage. I continue to use the invaluable words of wisdom and coping techniques learned at that time. I'm sure that's why I have an easier time dealing with my CLL. Great advice! Sally

  • Your post could've came from me. I feel the exact same way you do. I'm coming up on 7 months since my diagnosis and feel like I'm doing worse now than I was 3 months ago. Every ache or pain freaks me out; I think that it is some other horrible cancer lurking and if I dare to get a headache; forget about it; it's a brain tumor. While I realize that these feelings are not normal and hopefully all in my head; I hesitate to go to the doctor for medication. For me; anxiety medication is not the answer. I would like to learn how to deal with this without putting a chemical into my body. I would also like to have every test there is to rule out any other cancer but that one is just not practical. I have thought about seeking out counseling but sometimes I feel like there isn't anybody that understands how I feel; with the exception of the wonderful people on this site. I can tell you that when I was fundraising for the Leukemia and Lymphoma Society Team in Training (I was training for a 10 miler) I felt great. I think it had something to do with keeping my mind and body occupied and busy. I hope things get better for you and please know that this site is so helpful; whether you want to ask a question or just vent frustrations! Best wishes to you!

  • Thank you all for the great input! My head spins so much!! Always asking "is my tiredness due to the CLL? My joint pain? My abdominal discomfort? My cough,? My grinding teeth and head pain? My first ocular migraine? " All these questions and newly diagnosed not even 2 months!!! Honestly, I was never a worrisome person!!! I will say many of my concerns have been answered on posts and wow I just keep having more and more respect for everyone here. Thinkimjob, I too wonder what if we hadn't been told, but I do agree knowledge is power so here we are. I absolutely love the exercise comments but I never did have that surgery for bilateral knee replacement so here I am doing chair exercises! Best of luck in being empowered!


  • Yeah - I don't really have mu.ch fatigue but I have a big case of fatigue fear

  • Time is the great equalizer and thankfully you're in early stages and have plenty of time until you need to "worry" worry and even then you shouldn't worry!!! The current treatments available are extremely effective for the majority of us and once you get all the genetic markers you will have a better idea of what your future might look like BUT DONT FORGET that we are on the cutting edge of breakthrough therapies. If and when you need treatment hopefully it will be a cure!!!

    My doctor told me a few months after my diagnosis "don't worry until I tell you to worry" and I have been using that to get through all my anxieties and fears. Because there are days where every fart is colon cancer, fatigue is lycotosis because I have lost weight, a rapid hearbeat from stress is clearly my heart about to implode and so on and so forth. And other days I'm just normal crazy. And I'm not going to worry until it's time to worry.

    Best of luck. You're in the right place.

  • Hi Thinkimbob,

    I most certainly understand your fear. My husband was diagnosed (just routine blood work) a few months ago and we went through those exact same emotions, and still do on occasion.

    After a couple of weeks of just lying on the couch (and worried that was the fatigue everyone talks about), he dealt with it by getting back to being active, we started eating even better than before, just getting back to a somewhat "normal" life. I still struggled and googled "distraught over husbands CLL diagnosis" and up popped HU! I completely credit the people here for pulling me out of that dark dark place! Hearing from people who are actually living with it has been my healing process.

    We had his 3rd appt with the hemotologist yesterday. We high-fived when told he should come back in 4 months not 3. We never imagined, a few short months ago, that we'd be celebrating having an extra month before going back!

    Everyone deals with this diagnosis in their own unique way. Youll find your way!! I promise you that there are better days ahead, hang in there!

  • I had CLL for about 6 months before my primary doctor sent me to a cancer doctor, a cancer doctor,why is he sending me there. That was 3 years ago, I am still on w&w. So yes it was very hard in the beginning, I had also just came through a divorce, but I tried to eat healthy, exercise and take care of myself as best as I could. Now I just try to look toward the future because I have plans and I plan to be here. Would I be happier if I didn't know, I go back and forth on that, I don't have an answer to that. But you've found a great site here, we are all here and support you. Good luck.

  • Yes, I can agree it's not a good feeling. The time I was most anxious was between seeing my GP about what turned out to be an unrelated sore area and blood tests and scan done to check that out and then getting the actual diagnosis. By then I knew what the tests were looking for and had researched. The actual statement of the diagnosis came almost as a relief.

    Once they'd established what stage I was at and being told I was a likely candidate to be a long time on w & w, possibly for good, life began to normalise. Being more knowledgeable as a whole now - including a bit about treatment developments should I end up needing them has helped. Sensible precautions re infections are in order.

    The progression from 3 months (3 times) to 4 months to 6 months to 1 year (now continuing with contact information for the consultant should I need it) between consultant visits has been my experience and has also helped to convince me to get on with living my life. After all, I can't claim back time spent 'on hold'.

    I would recommend being very selective about who you tell (pretty much on a 'need to know' basis, yours or theirs - people react in such a range of ways from trying to wrap you in cotton wool, to ignoring what you said, to almost cutting you off because they don't know what to say or how to cope with what you said and to the lovely, quietly supportive ones who treat you as they always have.

    May you have all you need of the latter type and a long healthy span on watch and wait.

  • I know exactly how you feel! I am in the same situation. I finally asked for some medo for my anxiety,depression and to be able to sleep. I was having horrid nightmares, if I could fall asleep. Now I am in a much better frame of mind. I like to explain my response to my diagnoses as it took me 2 months to get up off of the floor and quit crying. I have only been diagnosed for 6 months. Good luck. Reach out. There are a lot of us out here.

  • Can I ask what you are taking? I feel I may need something to get through this also.

  • Your experience mirrors mine (diagnosed 6 years ago). All I can say is that you do come to terms with it and realise that you are not going to suddenly keel over. Take it one step at a time and learn everything you can so that you can ask your docs the questions that become important to you (always make a list and take someone with you when you attend your appointments for a second pair of ears).

    Some of your current symptoms could be stress related - maybe your GP can help with this?

    Take care and remember to be kind to yourself.


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