'My first Christmas with CLL'

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!

Newdawn x

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  • Nice post Newdawn. I can relate to this as this too is my first Christmas with CLL (knowingly). Our main difference is that I've just finished my FCR (6 cycles) and await my checkup in a couple of months.

    I do concern myself about the future reading, like you about the challenges others face, however to date my main problem has been dry, itchy skin, easily resolve with some of my wife's moisturiser on the couple of times it's been annoying enough to force me into action.

    My view is that today is th first day of the rest of my life and this is the first Christmas of many in that life. I don't know what's in store for the future, but in reality never did before CLL, just thought I did, and it is having CLL that has made me focus on the future more.

    I also have part of my family that are not aware of my situation and I plan to keep it that way to avoid worrying them, my wife and children will help me cover if necessary.

    Have a great Christmas, I intend to.

    Rob

  • Thanks for your response Rob, your comments are very much appreciated.

    I hope that your treatment has been successful and that you and your family have a wonderful Christmas. Like you, it's been a roller-coaster of a year. Who could have known what the year would bring when we let the New Year in for 2012!

    Sorry to hear of the dry skin condition but there's no shame in the male beauty routine these days which includes moisturiser! Lol! I have a bad dry eye condition and joint problems but of course I'm assured that's not CLL related. Problem is, once diagnosed, it's hard to know whether problems are symptomatic or unrelated. At first I saw shadows at every turn.

    To all who are having their first Christmas with CLL or are much further along the journey, wishing you improved health and contentment for next year.

    Newdawn x

  • Wounderfully said. I too am facing my first christmas with the knowledge of CLL. I understand just how you feel, I just could not express the feelings like you did. Thanks and Merry Christmas

  • Thanks F2L, your kind words are appreciated. The diagnosis is even rawer for you and I can remember the fear and bewilderment of those first few months. I had a knot in my stomach that threatened to choke me some days. Some days are still hard but by gaining knowledge and sharing the burden, I've somehow learned a grudging acceptance of this reality. I hope you can too and remain positive and well.

    I remain optimistic of new and exciting treatments in the future. This condition has come out of the darkness and the light shining on it gets ever brighter. That keeps me hopeful.

    Love to you and your family and Merry Christmas to you too.

    Newdawn x

  • Thank you, Newdawn and everyone else who's commented above. I've just read all your comments and it's good to know we're not alone.

    Happy Christmas, everybody,

    Paula

  • No we're not alone Paula if we support each other on here. We need each other's individual and collective experiences and I urge everyone to reach out and share because it helps even those who don't have the confidence to post.

    Sending every good wish for Christmas Paula. Keep well,

    Newdawn x

  • Hi I have always loved Christmas from the real sense of faith that I have to the bling in the High St. I want to enjoy it as much as I can for as long as I can. However I know my limits, gone are the days for cooking and entertaining on the scale that I used to ( I once had 20 people to Christmas day dinner)Its just the four of us (myself, husband and two grown up sons) its on a scale that I can now cope with. I'm not afraid to ask any of them for help. I know that I cannot do it all and now I don't even try. Have a great time.

  • Yes I think you're right jangreen, it's possible to put too much pressure on ourselves over the Christmas period and it's good that you've managed to find a balance and support with it.

    Although I haven't mentioned the true meaning of Christmas, I hope that people find added strength in their faith at this time.

    Best wishes,

    Newdawn x

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