tiltingheads

Cancer and other stuff

Limbo

So here I am back at the hospice after I dragged myself through three sessions of radiotherapy to my neck (you may say ‘only’ three but when you tot up how much stuff I’ve had done to me over the last four years – yep it’s four years since my original diagnosis, maybe you can understand why every hour, every minute spent in a hospital is torture now). Anyway we went away to a posh spa last weekend, it wasn’t particularly relaxing and I barely slept. By the time I got home, I felt pretty awful and by Monday night was back here. Which is good, it’s a great place to be when you need to be.

I always thought I had this cancer thing nailed, right up until very recently. I knew and still do know what is going to happen to me, and I still am ‘ok’ with that. What I didn’t foresee is how difficult I would find it letting go of life. In the back of my head, I’m still planning festivals, still thinking about work, not thinking ‘when I get better I’m going to…’ because I know I’m not getting better. I have to remind myself, on virtually a daily basis, that I am riddled with cancer and it is physically painful and exhausting much of the time. Yes, today is ok but tomorrow or the next day or the next day might not be. And yet I cannot seem to get over this ridiculous guilt I have whereby I think I should be DOING something. Planning something. What I should be doing is taking to my bed and resting, really making the most of this time with family and friends, not torturing myself over the life I once had. I know how stupid this sounds and believe me it’s really hard to live knowing that others would have given anything to have had the time I’m having and besides it will be over too soon anyway. But I can’t help feeling utter frustration at the fact it often feels like we are all sitting around watching each other, wondering what we should be doing. We “shouldn’t” be doing anything except it’s not human nature to sit around and not do anything. Not in my world anyway.

Anyway I guess no-one has a handbook for any of this stuff and I’m certainly not wishing my life away – God no – just maybe wondering what it is I could and should be doing now. I don’t work without a plan!

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5 thoughts on “Limbo

  1. Louna on said:

    It’s difficult to just “be” isn’t it? I think we’ve been formatted that way, feeling that we need to always be doing, planning, advancing etc, etc. I can’t ever pretend to know what it must be like to be you, but I understand what you mean when you talk about feeling that you should be using your time differently. I’ve often felt that way at different critical points in my life – kind of off kilter with what I was supposed to be feeling, and feeling guilty because the time I had was not being used to the optimum. Just doing what you’re doing is pretty great and maybe taking it an hour at a time or and morning /afternoon, so that you still feel you have some control without feeling totally overwhelmed. Hoping you find a “plan” that works for you.

  2. Dear Francesca,

    I have no words for what you are going through, I don’t want to pretend I could help. It’s the people closest to you who see and act in such wonderful manner. You deserve all the good and definitely not the bad. But more and more I realise that the end is part of life and there is a strange normality to all this. And you managed so well to consciously deal with the wonderful and cruel part. I wish you the last bit of energy to be able to see the first signs of springs still. An end to winter and start of a new beginning.

    I hope it is not seen as odd if I steel the words from a wonderful writer, Hermann Hesse and this poem for you:

    ‘Stages’

    As every flower fades and as all youth
    Departs, so life at every stage,
    So every virtue, so our grasp of truth,
    Blooms in its day and may not last forever.
    Since life may summon us at every age
    Be ready, heart, for parting, new endeavor,
    Be ready bravely and without remorse
    To find new light that old ties cannot give.
    In all beginnings dwells a magic force
    For guarding us and helping us to live.
    Serenely let us move to distant places
    And let no sentiments of home detain us.

    The Cosmic Spirit seeks not to restrain us
    But lifts us stage by stage to wider spaces.
    If we accept a home of our own making,
    Familiar habit makes for indolence.
    We must prepare for parting and leave-taking
    Or else remain the slave of permanence.
    Even the hour of our death may send
    Us speeding on to fresh and newer spaces,
    And life may summon us to newer races.
    So be it, heart: bid farewell without end.

    x

  3. laylalayla on said:

    First of all, I hope the hospice is helping and your pain is under control. I hope too that the radiotherapy is helping the neck pain.
    I’ve thought about this. I guess you could do something really frivolous and anarchic, like order a load of stuff from Net a Porter, try it on, pose, post pics and then send it all back. Or, you could do something good, like make hot cross buns when you get home.
    I had a plan to make favourite meals for loved ones, freeze them and leave a note with my will.
    Can you make origami flowers? They are dead easy and if you use foil perhaps you could give them to other people at the hospice.
    Think of all the absolute wallies you know. I suppose you did meet some. Write them letters telling them what they are – this is really nasty so perhaps only to be used in extremis.
    I would be sorely tempted to write a letter to the oncologist you failed to test you for BRAC and copy it to the head of the hospital.
    Keep on writing your blog, because it really helps people. For example, it taught me that it is far, far better to go to a hospice at the end, because it is too much pressure on loved ones at home.
    Play computer poker or bridge if you feel like it.
    Buy lots of cat toys and play with a different one each day.
    Above all, try to find the beauty and small joys in each moment.

    Thinking of you. Kx

  4. Cari Cooke on said:

    I j

    • Cari Cooke on said:

      I just wanted to say I’m thinking of you. Your blog is beautiful and powerful. I hope you are managing to keep comfortable and strong. With much love xxxxx

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