CLL Alternatives

CLL: Facing the Fear and Loneliness

Posted by: Denise on: March 31, 2019

Finding joy in everyday life! Denise with grandchild #3.

I just answered an email from a CLL-buddy who is feeling the fear and loneliness of a CLL diagnosis. She does not want to burden her husband by dwelling on her dark thoughts and worries about CLL, and her friends don’t seem to be any comfort. Of course not! This worries them too, and while they wouldn’t say it to her, knowing that a friend has a potentially fatal diagnosis makes them worry about their own lives, as well as about their friend. So what is a person to do? This was my answer to her:

Dear CLL Buddy,
I do understand how difficult it is to keep a happy face on this when you are so frightened. Eventually, you will feel confidence in yourself and in your health, and you won’t feel so frightened. Believe me, you are not alone in having fear of CLL! Here are a few suggestions that have worked for me.

1. Allow yourself to be frightened or upset for only one day at a time, particularly after a blood test that wasn’t what you wanted.

2. Research. The next day, concentrate on the blood marker that concerns you, and start some research on what you can do about it. Look up supplements and herbs. Make a lifestyle change, etc.

3. Have fun! Find time every day to do something you enjoy that is relaxing and gets your mind off of CLL! Read a book, go to a funny movie, visit with a friend (and not talk about CLL) maybe shopping or an art museum or something that you find fun (and gets your mind off the CLL).

4. Find your own personal meditation. I’ve tried meditation tapes (now they would be CDs or better yet, mp3s). This wasn’t for me, but many people find relief in this. My personal meditation is reading novels or writing, or even drawing. I have sketch books, and I find that when I’m sketching, I’m not thinking of anything but the pencil and sketchbook. I lose track of time. It is wonderful! Think back to childhood and what you enjoyed doing that made you lose track of time. Give yourself a gift of figuring this out, and then act on it!

5. Get a good night’s sleep. Make your bedroom light-proof so you can get a good sleep at night and make your own melatonin. Nothing makes you feel better than a good night’s sleep!

6. A new watchword: you are NOT about to explode! Any doctor that would see you today would send you home and then go about his or her business. You are not in imminent danger! Enjoy today! None of us know if there is a tomorrow (we get hit by the bus, etc., who knows?) So why waste today? Enjoy it! It is a gift you are squandering on worry.

7. Recognize that you can gain control of your health. It wasn’t until I became Macrobiotic (ironically, I am no longer macrobiotic, but still…) that I started to see the control I could exert over my CLL diagnosis. After one month of giving up all processed foods back in 2005, my WBC dropped back to 14, where it had been at diagnosis. While I’ve moved on from Macrobiotics, the lesson learned was that I COULD get control of this CLL thing. Since then, I’ve also learned that healing is all about the gut, the digestive system. Work on your digestion and you are working on your health! I’ve not been able to get to where my blood work indicates I’m CLL-free, but I am back in stage zero.

8. Seek out a therapist. If all of this leaves you worried still, see if you can find a therapist. There is nothing to be ashamed of about this. You are facing down your mortality, and we don’t like to do that. It is crazy-making. Back in 2003 or maybe 2004, I was constantly crying with worry and wondering how my boys would grow into manhood without me there. I worried about my husband. I cried about never meeting grandchildren. And see, all those tears were a waste of energy. That said, I DID see a therapist at that time, and it really helped me.

What I learned from him at that time was that I had to take action. Until that point, I felt like I was a victim; I had this CLL diagnosis and I believed it was too late to do anything about it. Damage was done, and I had to accept my fate. Now THAT was crazy! There was so much I could do, but talking to this therapist helped me see it. 

If you continue to be depressed, please find someone who might help. If they make you feel worse, find a different therapist. But do try all the other items above, first.

And I AM here for you. So please write whenever you need to. I do truly understand. I’m wishing you radiant health and a wonderfully happy day! Love, Denise

PS Writing about your worries here, on the site, really helps others. We’re all in this together!

6 Responses to "CLL: Facing the Fear and Loneliness"

Hi Denise, Your message to your CLL buddy is a wonderfu lpowerful reminder to all of us.
On looking closer at the PeakImmune4 ingredients I discovered it contains Tumeric (Curcumin) , substance Which clashes with my Trial programme capsules so have put the idea to one side.
In the interim I have discovered a local company http://www.Medi Mushrooms.co.nz ( I am not associated in any way with the company) which manufactures and markets Cordyceps, Lions Mane, Reishi, Shiitake, Maitake capsules so have started a daily regime of taking them to assist my Immune system.
Go well. Terry.

Hi Terry,
The mushrooms sound perfect! Be well and please stay in touch! – Denise

Hi Denise, Your message is a wonderful/powerful/timely reminder for all of us here with the CLL condition. Thank you.
I recently discovered the PeakIImmune4 has Tumeic/Curcumin as an ingredients which is one of the elements I have to avoid as it clashes with the Trial programme capsules.
Recently I found a local company http://www.MediMushrooms.co.nz ( I am not associated with the company) who produce and market locally Cordyceps, Reishi, lions mane, Shiitake, Maitake mushroom capsules.
Apparently the mushroom capsules work on a bio active accumulative principal. They recommend 2 ea cordyceps, reishi, Shiitake , Maitake twice daily for three months then 1 ea twice daily for next three months of the four mushrooms then 1 ea daily as a maintenance dose rate.
It will be interesting to monitor effectiveness via my complete blood tests.
Go well. Terry.

Hi Terry,
I just looked up the Peak Immune ingredients, and it does not have curcumin in it. Here is a link to the product on herb.com. (The ingredients will be the ingredients no matter where purchased.) Here is the text on that page (and on the bottle): Peak Immune 4, an immune enhancing complex containing Rice Bran Arabinoxylan Compound (RBAC), is produced by patented process using Rice Bran Hemicellulose and Shiitake mushroom mycelia.

And the link to the page (scroll down to “Product Review” section: https://www.iherb.com/pr/Daiwa-Health-Development-Peak-Immune-4-250-mg-50-Veggie-Caps/28387?gclid=EAIaIQobChMI7PyB7LW84QIVi4bACh2eLQb2EAQYASABEgIjE_D_BwE&gclsrc=aw.ds

I try not to take curcumin these days because of the oxalate connection. I hope this helps! – Denise

Hello Ladies,
I surely didn’t realize that Peak Immune has curcumin. Too bad Terry you can’t use it because it does keep those neutrophils at the correct range. How about AHCC, did you look into it? I’ve read about few people it has helped but I’m still waiting on me. Stabin used AHCC and green tea along with vit D to conquer his CLL. He also only ate fish no meat. Also cordyceps which you mentioned. I certainly will post once I have some concrete evidence that my numbers are only declining now they fluctuate – still stable but not quite where I’d like to be yet.
Well, wishing everyone the best.
Have a great weekend.
Nathalie

Hi Nathalie,
I’m not sure if I’ve already responded to this (but it’s showing up again on my dashboard). Peak Immune does not have curcumin. Here is a link to the ingredients https://dhdusa.net/products/peakimmune4-immune-complex. This is too good of a supplement to be cast aside for the wrong reason! Just wanted to get this out there.
All best, Denise

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