A First Christmas with CLL

A member (newdawn) has written a blog here about this being their first Christmas with CLL (2012).

It happens to be my second.

Newdawn writes of changes, in certainty, fear, everything, and blesses us all with hopes for better treatments in the coming year.

Of course, human emotions cloud reality. The big C, death, dying, leaving loved ones, and the deepest of cuts, leaving children. Of course, these fates could befall us at any time, CLL or no.

So let us step back and take pause. What is really changed? "Er, hello! I have Cancer, which part of that do you fail to understand?" No, that is the answer to another question. May I respectfully suggest the following...

In reality, far less than perhaps some think, who share their first Christmas with CLL, and who are, to all intents and purposes, essentially well.

Anyone could have died this morning, in their car, on a bus, a train, a plane, or walking down the street. And they have, people in perfect health. It could have been me, perhaps on my motorbike as I try to hit my knee on the road as I pull the bike over around a fast bend. That is such a thrill. I could have died from CLL, I could yet die from CLL. I could well survive CLL.

There is one thing I will not do, nor has anything else in existance, from single celled organisms to galaxies, I will not survive life, it is always fatal.

So, my prospects for dying on some unknown day in the future have not, in reality, changed. I will die, I must die.

Well, what has changed then?

Fear!

Fear of the unknown. A potentially unpleasant unknown, but fear none the less. Fear of dying. Is it simply that? No, of course it is not.

It is also the manner of one's dying, that focuses the attention. It is the fear of a terrible death, subconsciously we want to know we will die well.

You can die well and it can be a very long way away.

I wish you and your CLL a very Merry Christmas, and look forward to wishing only you a Merry Christmas.

Take care.

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  • Thank you for your thoughts and best wishes for Christmas.

    For me though, it is not just the fear of dying a with a "good" death or not but the difficulties of living well, or badly with CLL.

    I wish you a Merry Christmas too.

    Take care.

    sparkler x

  • Hi Taliesin,

    I always enjoy your posts - you have an interesting philosophy which mirrors mine to some extent I think.

    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 world...it 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 you, 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, 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 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 and illnesses. I think maybe that is what Sparkler is referring to when she talks of living well or otherwise with this disease..?

    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.

    I'd be interested to hear what others feel about how their view of life has changed post-diagnosis.

    Much love and festive greetings to all on this site xxxxxxx

  • jibs60 Hello.

    Yes :-) Very much so. Superbly put.

    For tomorrow (21st) Yule tide blessings. Merry Christmas and a Happy New Year (assuming you celebrate)

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