I didn't know I had CLL last Christmas. Of course I did have it but it hadn't been diagnosed. That momentous event occurred on the 31st May this year. I can well believe that everybody remembers the day of their diagnosis almost like a 'where were you when the Twin Towers fell'.
And I got to thinking, does the world, well my world to be exact, seem a very different place?
The thing that was different last Christmas (seems like years ago and yesterday at the same time), was the sense of contented certainty I had about the world then. I counted my life in decades and felt an inner strength from the prospect. It made living my life more effortless somehow with no sense of urgency or fear. I knew I could be struck down or knocked down at any time of course but it wasn't going to happen to me. How could it?
So last Christmas passed without any stark focus, it was just another festive occasion with too much cooking and tv repeats. It had the boredom you can only appreciate when time isn't threatened.
And now this Christmas is nearly upon us and so much has changed. I've been plunged into a new and scary world dictated by the fluctuating figures on a blood test sheet. I understand medical terms I'd never heard before and my morning starts with the ping of emails describing CLL trials and literature. I agonise over people I've never met and pray I'll never suffer like them. And I gain strength from the long survivors and convince myself I'm one of them. Because I will be. Won't I?
But the one positive, really positive thing I've gained from this are the friendships I've made in such a short time. The fellow 'sufferers' who sustain and entertain and share my hope and fears. Shared suffering intensifies relationships and I've exchanged personal thoughts with complete strangers in the hope that there's emotional safety in the shared evils of the condition.
In fact just like this blog....who else could possibly understand what I'm saying?
So what has changed in me as I prepare for my first Christmas with CLL? I'm fortunate to be in the early stages although I'm more aware of fatigue this year. I'm pushing myself to achieve the same as every year as the family champion shopper and organiser. Because my family don't know of my condition and for very genuine personal reasons, cannot be told until absolutely necessary. But I fear for next year and the year after. So I must achieve the same for now which is exhausting to be honest. But brilliant too. Because I love life.
I've said that somehow every page of my life is now tinged with a grey border (a wit of a friend did ask if it was 40 shades of grey) lol. It's just a sense of instability I suppose. The certainty has gone and everything I do feels like decorating a house built on crumbling foundations.
And yet this Christmas I'm less concerned about too much cooking and repeat tv because I now realise those are the precious, mundane things that make life special.
So I've bought people more, am less stressed about minor detail and every bonus is just that, a bonus. I like that quote, 'you know you're middle-aged when the 'phone rings on a Saturday night and you hope it's not for you!' (Except in reality I'd be out dancing!)
I apologise if this is beginning to feel like an overdose of egg-nog but it's my reality of my first Christmas with CLL. And I'm going to embrace it fully. I hope you all can too and I so hope for a major treatment breakthrough in 2013 for us all. Hope is everything, it's the only thing that's stronger than fear.
I've decided CLL over the festive season stands for Christmas Loving Life! Early Seasons Greetings to everyone!