Just a few reflections on a resting day between Infusions

Cycle 1 Thursday Feb 11th

Following my emerging awareness of “how I feel in all this” I felt moved to write some reflections on “being ill”. I immediately recognise that other people have certainly written about this with much more skill, thought and depth that I can but, hey!, the role of this blog is just to chart my journey so let’s just go from there!

A few thoughts ….

  • I’m not too bad….” – a quintessentially, Australian male response!. I haven’t actually had much of a reaction and apart from tingling in my legs and some fatigue. I’m OK.
  • This led me to wonder, in a back-handed fashion, this morning whether I might “feel better” if I was “crooker”! I feel a little bit, that if I was “really crook” I might be a bit more at ease with the care and concern that is swirling about me.
    • Other people, on precisely the same or other efficacious treatments for CLL do have different responses to the medication. It is very much an individual journey and while the fact that I have had a good start could augur well for the future Cycles there is certainly no guarantee.
      • Even Deb “Chuck” Sims’ body baulked at the last hurdle (Cycle 6) in 2016.
    • So, definitely no chickens being counted here.
  • It is good to lie down when I get tired but “am I really needing to lie down or just a bit wimpish”??!! The last time I was “really crook” was after an operation that left me with a 30cm wound around my kidneys, which still gives me a bit of gyp, but which meant I was obviously “crook”!! That was easier!!

The reality is of course that how I am now is far from the point. The proof of this pudding will be in 18-24 months (and hopefully many years on) when we see what the outcome is longer term. The reality is, of course, that a significant number of people die of CLL every year still. An email comment from a medically qualified, intelligent friend after describing a good CLL success story for another friend of his, first diagnosed in 2011, which finished: “I hope you will be one of the lucky ones!” sort of gives the perspective.

Lest you think I am worried let me assure you that “I’m good!” I am podcasting-listening walking again in the mornings which I find good for body and soul even if I need a bit of a kip later in the day. I am very positive about all this and genuinely expect a good outcome even if the need for “acceptance” and “patience” is growing in my consciousness! 

Published by Mick Prest

Retired former elearning Jedi

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