CLL Support Association
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Living with CLL

Living with CLL

Hi everyone - and Merry Christmas!

I was just reading Taliesin's really interesting blog post about what changes for us after being diagnosed with CLL - such an interesting topic. I posted a comment in response which I thought in hindsight would probably be better posted as a blog in dialogue with Taliesin's...

I remember cycling to work one day shortly after being diagnosed, and narrowly avoiding getting hit by a van on a busy roundabout. Afterwards, I was telling someone about the experience, and they couldn't understand it when I said that for me, it was almost a blessing to realise that I could still face the very real prospect of dying in some way other than from CLL...I still have a life to live, celebrate and protect, and I'm still as vulnerable to the fundamental uncertainties of staying alive on a day to day basis as anyone else in this kind of "normalized" me after a period of feeling over-determined by my mortality following diagnosis.

However, despite my best efforts to stay philosophically grounded, I do find this disease hard to live with at times, and that's not just about fear. Like Taleisin, I have always had an acute sense of my own mortality - I lost both of my parents at a relatively early stage, and I worked as an emergency nurse for several years, so I would really have to bury my head in the sand not to realize how fragile life is...I have seen mortality up close on a daily basis. I can fully accept that CLL may kill me one way or another - and I'm prepared for that. Apart from the sense of the unknown, it doesn't really "scare" me (although I don't like it obviously)

No - what really gets me down (when I allow it to) is the loss of spontaneity and sense of freedom that comes with feeling "well". I have a sense of loss pretty much all of the time for the ability to see ahead as someone who knows they will ultimately die, and may well become ill or traumatized at any point in time, but for the moment is beating the odds.

It is that loss of a sense of the joy and strength that experiencing the world in a healthy body brings (which I of course took for granted when I had it) that I often grieve for. I just can't take chances with my body any more, and do feel hemmed in by that sense of having to "look after myself" all of the time. Arguably, we should all do that anyway, but the sense of constantly having to "bargain" with one's body to stay well is an onerous one at times - particularly when the bargaining doesn't pay off and our compromised immune systems result in constant infections, illnesses, or fatigue. I think maybe that is what Sparkler is referring to when she talks of living well or otherwise with this disease..?

It's not primarily fear then for me, but a sense of loss of some of the freedoms (however illusory) that living without the knowledge of a bunch of mutant cells going about their business in my blood and bones afforded me before I was diagnosed...Life remains sweet, and I enjoy it to the full, but I would be disingenuous if I were to say that I didn't experience a longing for the pre-diagnostic bliss of a healthy body with which to face the future...(including the Christmas drinks party I'm going to tonight!)

Much love and festive greetings to all on this site xxxxxxx

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8 Replies

Thank you jibs60 for writing this blog. The feelings you describe so perfectly, exactly mirror my own.

Warm Season's greetings

sparkler x


An insightful and thoughtful reflection jibs, much of which resounded strongly with me and I suspect many others on here.

Like you I've always had a sense of fragile mortality and ironically my father had a chronic disease but it was an RTA that eventually led to his death at a relatively young age. But he certainly lived life whilst he had it!

It's not death I fear, it's the possibility of living a half life. But more importantly it's leaving the people who rely on me. But I'm determined to embrace life as best I can while I can.

So you go and enjoy that Christmas drinks party tonight and have a wonderful time!

Very Best Wishes,

Newdawn x


Nice one jibs60. I have already replied to your comment on my posting, but to save people moving about...

I absolutely agree.


Nice post, I think it sums up my thoughts at times.

My current thinking is that I have a lot to see and do still so, whereas I'd planned to spread it over a 'long retirement' I need to front load it. Now, that might work out well because I could end up doing more than if I'd just plugged on in my old way. (Glass half full).



My thoughts exactly Rob.

Merry Christmas everyone! x


Hi I can only go along with all the other comments. I find living with this chronic disease hard and wish that I could be healthly once more. Good wishes to everyone.


I hope you had a good time? Do you find alcohol affects you adversely?I found when I stopped drinking my blood counts improved.


Happy New Year everybody and my heart and soul goes out to all of you.


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