Let there be light !

Does anybody know any books at all that have any 'positivity' about how to live with CLL. Since I was diagnosed five years ago all I encounter is dark despair. Cant we lighten things up? and count the blessings we have life, live life to the full, not define ourselves by this challenge and discover the insights about life along our journey.

I am new to this site so ...

Because I encountered 'no light' at the begining of my own journey I have had very little to do with information and communities etc so this is a long shot....

All the best to my fellow travellers :)

10 Replies

  • This site will bring light into your life. Honest people with the same aim to live life and enjoy with hope.

    Yes, some stories of struggle but most of success and personal experience which is worth more than any book when shared amongst those that are living with a chronic blood disease.

    A strong community. A knowledgeable community. A get on with life community.

  • Hi Markie,

    One of the reasons I love this forum is that we can be our authentic self. If we have worries or concerns we can share them along with our joys. I don't want to bury my head and not face facts. Knowledge is powerful. I like being a partner in my health decisions.

    I continue to enjoy life more since diagnosis. I find beauty in the simplest of things. I quilt, garden, cook, volunteer, practice yoga, listen to music and love my friends and family. CLL doesn't define me. It's just a chronic condition I live with. Some people deal with much worse diseases.

    I'm glad you found us. I hope you continue to follow this forum. There are so many warm and kind people sharing their journey in order to help others in the same predicament. Good luck on your journey also.

    Kind regards,

    Sally (USA)

  • I was diagnosed 5 months ago and had no understanding of the disease and all the jargon and terminology.

    I have found this forum very positive indeed and have also learned a lot about CLL and the successful treatments.

    I do hope that you too will find it helpful and stay well.

  • Well maybe you thought your long shot had less of a chance than Elon Musk's Mars vision...but you were just out in your previous targeting.

    This time you have hit the jackpot: prepare to bathe in the light of positivity (indeed, you might need sunglasses)! We are all in same boat and have ups and downs.....but ups there certainly are!

    I am just drying off after cycling to work though rain......and still smiling!

  • Aha' Markie your long shot has finally hit the right target. Both sides of light and dark here, but positivity abounds as well as up to date knowledge.

    I wonder why after 5 years on your CLL journey the dark side is getting you down, have you googled and found yourself immersed in old news? Has something happened, that has badly affected you and left you feeling sad. I can understand the reaching out for the energy and happiness we once had, here you will find lots of us enjoy life despite that loss.

    I sincerely hope that you are getting the best out of life, and wish you happiness, at the same time if you need to get things off your chest we will listen, and help and support you if we can.

    Welcome to the warm community that is Health Unlocked CLL.

    Today the sun shines,


  • Hi Bubnjay thanks for responding, I sense you didn't mean to be patronising. I'm not 'reaching out for happiness we once had' my point is about the whole 'response ' to the diagnosis of leaukemia (not mine I hasten to add...all I have heard is no help, no hope, ...nothing you can do etc) and how ( in contrast to many cancers) its doom and despair. I wish you happines too.... that was my point

    Hi CLL California ...I don't think I'm burying my head in the sand, I will think about that...,BUT I don't want to 'be CLL' ....yes knowledge is great but I have just recently lost a friend who would introduce herself as having M.E even before her name ...so theres a balance here.. and I hope that I may find it here. Please excuse me I have been totally alone on this journey since diagnosis...

  • Hi again Markie1

    No I certainly did not mean to be patronising, thank you for realising I did not mean to be.

    Sometimes trying to find the right words I get things wrong, especially if I make the mistake of writing when waking zombie mode is still hanging about.😞

    For sure we are not defined by our cll, though some need to not feel so alone, it's quite an isolating disease. We don't often meet others with cll.

    We all deal with it in different ways, so pleased that you have already received a reply from sebsgram. Lots more positive people in our community, I hope you pop in now and again and meet them.


  • Thank you Bubnjay1...I will be posting things occasionally and you sound sound like a solid human being...

    God bless

  • Hi Markie,

    I've lurked here for several months and have only replied to one post, but yours struck a chord with me, so here I am again.

    I was diagnosed six months ago and went on Imbruvica (ibrutinib) five months ago with great results. I've never felt sick and only have joint pain on occasion. No fatigue or other things related to CLL.

    A little background - I'm a 66 year old married woman, with three children and two grandchildren. Our youngest daughter was born with a physical condition called Arthrogryposis Multiplex Congenita. Simply put, her muscles are either absent or weak and she can't bend her arms or legs. (No biceps, only shortened triceps, for instance.) She is fully functioning due to her tremendous determination and seven surgeries in her first seven years, is married, has graduated from college twice, and is a working member of society. She is also a positive influence on all who know her. Never once has she said "Why me?" and she's 32.

    My husband and I are retired and three years ago, he was diagnosed with Parkinson's. He's doing well, has a great attitude, and keeps us laughing with his humor. He cooks every meal and cleans up the kitchen, a true treasure!

    I am fulfilling a lifelong dream of being a writer, under the name Brita Addams, and have successfully navigated the publishing world with a total of ten published historical romance novels, in a couple of genres, including gay romance. I write every day, research, plot and at ten each morning, I take my Imbruvica, the only acknowledgement I give to CLL. That and no more writing conventions, due to the high probability of coming home with "con crud." I have not told my readers about CLL, nor have I announced it on Facebook or anywhere online, and won't. CLL isn't who I am.

    After delving into Parkinson's, diabetes (hubby), Arthrogryposis, and ulcerative colitis (our son had this twenty years ago,) I have chosen to listen to what my doctor says but I don't study CLL. I have adopted the attitude that I will handle what is coming when and if it comes, but I won't anticipate things that may never happen. I won't live in CLL or become CLL, because to do that negates each beautiful day. I don't ask for information on prognosis, etc., and have spoken to my doctor about only giving me information I need at the moment. She's wonderful and apparently I'm not the only one to make that request.

    I don't consider this the ostrich syndrome. Rather, self-preservation. As I learned with Arthrogryposis, each person is different. To bathe in the could bes doesn't serve my life well. It will be what it is and I can't change that. But we can change the way we think. I loved my life the day before diagnosis and I love each subsequent day. I have books to write, television shows to binge on, the Walking Dead seventh season premiere to look forward to, much laughter and joy with my family. No gloom and doom here. Don't have time for that! The rain might come, but I'll enjoy all the sunny days in between.

  • Dear Sebsgram,

    You get what Im saying and that is fantastic ! yes we need to know 'a bit' but all in its time ... and if we slip into a sort of daily immersion we can be tainted and 'troubled' by it and suddenly 'we are' it and cannot breath and greet each new day with optimism and glory and love for every thing we have. I love the fact you are creative (I too have dabbled) but the main thing is that 'MOST' of the time we maybe should 'forget' this and take each day, not dissect and peer down a black hole full of horrendous 'imaginations' ...

    Your a very special person and there will be more like us out there

    Much appreciation from soul to soul