Always on my mind

[larry54]

When I am not thinking about this cll, everything is fine. When I am just relaxing i start thinking about it and I start taking deep breathes. Worry......This I dont think this will ever go away.

[seelel]

You haven't told us what your cause for worry is. Symptoms, poor predictive markers, etc.

Because 1/3 of those diagnosed will never need treatment. Another 1/3 may live for many years without symptoms or cause for treatment. And 1/3 will require treatment soonish......

Where do you fit? Maybe you are worrying unnecessarily. Tell us more.

[Sushibruno in reply to seelel]

Just the fact of having a serious illness makes me feel this way, personally.

[J_88 in reply to Sushibruno]

me as well

[larry54 in reply to seelel]

Hello: I see my doc every 4 months now. My blood work is always good. I too am taking Improvica. I have been taking it for about 1 year. Telling me I have a form of cancer does this. There is no cure, just a fix. Thanks

[Sushibruno]

I go through this same thing, and i feel the same as u, don't think it will ever go away... But at least for me it got better. I hope it does for you too.

[Mystic75 in reply to Sushibruno]

It feels really good to read your post, Sushibruno!

[Sushibruno in reply to Mystic75]

Thank you☺

[Ironj]

I agree ... the old saying is a busy mind will keep the what if’s at bay. I know we all want to relax and have peace of mind and I’m sure some do. I’m the same way but in time I hope I can just look at it for what it is as a chronic condition with great treatments like my diabetes. I don’t care about my diabetes anymore and I think In some ways diabetes is worse. Best wishes John.

[Sushibruno in reply to Ironj]

Hey John hope all is well☺

[Ironj in reply to Sushibruno]

Thanks Lydia everything is good. Best wishes your way. 😊

[Sushibruno in reply to Ironj]

👍☺

[cajunjeff]

Well you know miltion that when we worry being told we shouldn’t worry doesn’t often make us not worry. Anxiety just doesn’t work like that.

I think everyone on here worries about their Cll, it’s just a matter of some worrying more than others.

And it doesn’t always correspond to the seriousness of our Cll. Someone with indolent Cll might worry constantly that it will make them die early. Some with very aggressive disease who are ill might be very much at peace with their situation.

My clumsy zen approach now is not to worry about worrying when worry thoughts come, or try to force them away. I just try to let the worry feeling come, realize it’s natural to feel worried about having cancer, and let the feeling pass. Like the guy on the Kung fu tv shows would do😎

I have tried to meditate like in the movies sitting with palms up and chanting. It ironically stresses me out more that I can’t still my mind that way. Lol.

Long evening walks are my way of meditating now. I come home from work with a million thoughts and then just completely zone out on my walks. I have found that does still my mind.

Everyone has to find their own way to calm nervous thoughts. Mine is long, quiet walks. Sometimes it’s not a matter of trying to think about something else, but rather try to think about nothing.

Sorry for the fortune cookie sounding advice, just passing along what works for me when worry thoughts creep in.

[Sushibruno in reply to cajunjeff]

Agree

[Hidden]

Trying to put into perspective from someone who does not have CLL but has experienced depression. If you feel it has taken over your life and you are obsessing over it I suggest you get some professional assistance. Although I don't have a serious illness - yet- I turned 69 this year and find myself thinking more and more about the years I may have left, knowing the next 10 will probably be far different than my last ten and if I can make it that far the inevitable changes that old age brings will be my reality. I don't know if this helps but just wanted you to know that though you have CLL, at least it is a condition that for most people can be managed with many never even needing treatment. In my husband's case, treatment was needed sooner than we expected, but he was also 75 years old. I wish you well at this holiday time. Surround yourself with friends and family and be grateful for the present.

[Chuddie48]

Please I know it's hard but I was the same I worried my self sick for 5 years on watch and wait . Then started on Ibrutinib and spent another 2 years worrying my self to death about my CLL thinking what if ??. On my 3rd year now and finally stopped thinking the worst , all those years worrying and I'm still here . Don't worry be happy cheers and good luck you will be ok

[jiffer]

Perspective is the key. I recently went for a CT scan. My Hem/Onc called 2 days later to tell me they found lesions on my liver and I need to go back for an MRI. In what was possibly the longest 2 weeks of my life, my mind raced with thoughts of another cancer and an early death. I managed to stay away from Dr. Google and keep myself occupied with a home improvement project. The office called after the MRI to say the lesions were not very concerning and to stay with the usual appointment schedule. During that 2 weeks I was hoping that I "only" have CLL. We have a manageable disease that is only getting more manageable as the years go by. Stay busy and active.

[W00dfin]

I trust the process and endorse some reality checks:

There are much worse cancers! Every month I go in for IVIG and see folks in the clinic with bigger things to deal with.

And expanding treatment options.....

[Mystic75]

Hi Miltion - I don't think any CLLers or their family member will ever eliminate worry entirely but a couple of things that have helped in my own situation are gratitude and knowledge.

My husband has CLL and every day when I wake up, I think about how he feels and if he feels reasonably good, then it is a good day! Of course, there is a lot more than that - including all of the research going on and the different novel agents - and even talk of one day there being a cure.

And there is all of the knowledge available on the forum, which has made such a different to us.

Of course you are worried - you wouldn't be human if you weren't. It is just something we all have to learn to manage and sometime it takes time. Just remember your life is more than CLL, even if sometimes it doesn't seem like it.

All the best,

D.

[gralnick in reply to Mystic75]

Your words touched me greatly and wishing you and all on this journey a peaceful and stress free happy year and years ahead Worth the voyage despite the blips. Ive verb so thankful as

Was diagnosed at sixty over twenty four years ago and w ad w the lymph’s up and down. The chimp like face that eventually reduced convinced due to large doses of green tea tablets as Mayo Clinics report suggested. But watch liver toxicity. Usual fatigue and night sweats but reasonably good bloods.

Think also having had two pretty major ops this year and pacemaker last an extra exhausted might be the reason not cll. Blame most of my odd illls on it Having I. V G F for low low immingobulins. But feel at last. Might need to give in to treatment.

Just thinking of all the energy over all these years and panics of the cll. But we are all human so guess its as it is

With these wonderful new discoveries its so good to be around still

Lots and lots of hugs to everyone out there. We will overcome in the words of MLuther King. I think!!

Gralnick

[Sushibruno in reply to Mystic75]

You're right our lives are much more than cll i get that, but the fact that the word CLL is in my mind almost all the time is draining and there's nothing i can do about it not even a phycologist can help with that, maybe they can help me cope but it will never go away.

[DriedSeaweed]

Some worry is normal and healthy I think. Vigilant survival mechanism. CLL worry sure beats having to worry about predators and spending all day looking for food like other animals.

Problem is when worry/anxiety keeps us from sleeping! Sucks.

[Sushibruno in reply to DriedSeaweed]

So true

[TinyTattooedToes]

Completely understand and although I can’t offer advice I can say that after time I genuinely just stopped thinking about it. (12 yrs post diagnosis next year) To the point at times I would ‘forget’ I have CLL. Wishing & hoping for the same for you xx

[Workers in reply to TinyTattooedToes]

Me too ,I never think about it and I sure don’t worry about numbers etc ,when I read what some people right about bloods etc I think leave it to the experts ,I tell my consultant don’t give me figures just tell me if it’s going in the right direction don’t see the need to get into the nitty gritty !

Merry Christmas everyone ,hope you all enjoy 🎄🍾🍽

[Ladylin151]

I am a worrier by nature but my husband's diagnosis nearly broke me and I am trying to be better. I believe my worry will take precisely ALL of the time I give to it. So I purposely fill my mind with gratitude, prayer and plans to change the things I can. I try not to let worry for things that may or may not happen in the future waste my precious time TODAY. And I remind myself often that there are things I cannot control or predict; hubby could have been smooshed by a bus any of the days in our last 40 years but I had not been spending valuble time thinking about that, so if we are able, today, to "live life" then we should and we will!

[Newdawn Administrator]

For me, it’s not really about ‘active worry’ but more a pervading sense that I’m no longer a carefree diner at life’s feast. CLL has been ‘a lightness thief’ for me and being symptomatic this Christmas has brought its power into stark focus.

It’s a changed reality but a reality nonetheless and for me, no amount of diversions or comparatives is going to change that.

Having said that, I make sure it’s my private battle and am pragmatic about what needs to be done.

Newdawn

[kathymac52 in reply to Newdawn]

I relate to that....my husband has CLL, but I am the worrier....it is always with me, and has made me less spontaneous and carefree...private battle indeed. He said he is happier that I do the research, and do the worrying. LOL

[HappyDave]

Hi

Your anxiety is natural given the illness that we suffer from

Can I respectfully suggest a free online course on mindfulness. It will not cure your anxiety but you will understand why anxiety occurs especially when you are not busy or engaged in activities. It will also give you some strategies for dealing with it. It helped me and many others.

Whatever you do don’t suffer in silence.

The course can be found online at FutureLearn.

Best of luck

Regards

Dave.

[LenfromSoCal]

Hi Miltion,

I really connected with your post. From the moment that an oncologist confirmed my diagnosis of CLL, my thoughts and fears of mortality greatly increased! Leukemia is often associated with the worst outcomes. But over time, after becoming more knowledgeable about CLL by being a part of support groups and on-line forums such as this, I learned to be more accepting and a little less worried.

After 8 years of watch and wait, I started treatment with a mono therapy of Rituxin. After the third week of an 8-week regimen, my labs were near perfect, and they have continued to improve. My Dr. says that I am in remission. (I love the sound of that)! I get a re-fresh every 2 months, and I have had no side effects, and the whole process is relatively easy.

We are blessed to have so many treatments available to us, and there are new clinical trials now available which have proven to very effective in controlling this chronic condition. I have even read that a complete cure for CLL may be possible in the next 5 years.

And...you may never need to start treatment! Take care of yourself, exercise, do what you can to keep you immunity system strong, and try to enjoy your life. I feel that having this disease has given me the opportunity to be more aware and more grateful for the things I have in my life.

Sincerely

Len

[srdh50]

Been in w&w for 3 years. I never think about it.

[scarletnoir]

Worry is a funny thing - I doubt anyone can avoid it completely, but we are all very different in how much we worry, and how often.

I'm not normally one of nature's worriers, but after diagnosis it was just about the only thing I thought about... I was recently retired, and didn't have work or any other obligation to consistently draw my focus elsewhere... as the disease progressed rapidly, it was a heavy burden at the time.

I then had treatment (with complications) followed by a bad skin cancer (that summarises around 15 months of serious worry pre- , during, and post-treatments.

After all that, the worry was that either the CLL or the skin cancer would return... a daily concern....

But I've been lucky - nothing has come back, for 5 years now... and as time has passed, I've more or less stopped worrying, gradually. Now, I sort of think that if and when the CLL returns, the new treatments should be able to help, with any luck. A positive experience can do wonders for one's optimism about future treatments and outcomes!

So - just hope for the best, and keep going. It's all we can do, really.