The unbearable heaviness of being

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The blog posts are coming rather thick and fast at the moment, but I am heading into what is possibly the most terrifying week of my life so far, and writing is therapeutic for me, so they may get more, before they get less.

Tomorrow I get rolled into the CT scanner to see where I stand with this cancer.  Wednesday afternoon my oncologist will tell me whether this chemo is working, or I have to switch to another one.  Either way, there will be a plan, but there is so much at stake here, as I was hoping to respond well enough to this chemo to get onto maintenance (which aims to hold the cancer steady for as long as it can, with as little chemo as it can), and not look at “second line” (and effectively last line) chemo for a good long time.  Plus there is no guarantee that just because first line chemo worked really well for me for a time, that second line will do the same.  So much uncertainty and fear that I feel scattered and crazy going into this week, and literally hanging onto my sanity by a thread.

My palliative care nurse came over on Friday for her fortnightly chat.  I really like her, in fact, all the people working in palliative care are an exceptional group..they really do find the best of the best.  We talk pretty openly around matters of death and dying and legacies, and how to live well while you “wait” for the death and the dying and the legacy leaving.  She said to me that some people come into this world and go out of it and leave very little impression on it, and that basically no one was going to be able to say that about me.  That my blog alone has touched and helped so many people, and that it is a part of me that will be left behind forever, and my words here a legacy to leave my girls, to help them remember a little of not what their mother looked like, or what she did for them, but who she WAS.  The nurse wondered if it helped me to know that some people weren’t meant to live a long time, but leave a large footprint?  It’s hard to answer.  I mean, really, it does matter.  Surely everyone wants to have touched peoples lives in one way or another.  Had my life been longer, it was always going to be lived in the service of others in some way, and perhaps, with this blog, I have already done that?  But the other part of me wanted to scream NO!  Let me swap, let me burn slow and dim, let the light flicker and go out as I bounce a baby grandchild on my lap, let me experience the full circle of life.  Unfortunately, I don’t get to choose.

Yesterday was mothers day.  It was a beautiful day, but it also landed me on my arse in a couple of ways.  First of all, it was the 23rd mothers day I have spent without being able to say happy mothers day to my own mother.  Our relationship was rocky for a number of reasons, and while I loved her greatly, there has been a resentment towards her which I have carried through my whole life.  There has been a great need in me lately to put these sort of ghosts to rest.  These words were a favourite of my mums, and were always displayed in our house growing up, in a frame:

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Wise words, really, for a lot of reasons.  And so, I can’t change any of the things that happened, and I can’t have it out with her about things I would still like to know…..and yet I still needed “closure”.  And so, I wrote a letter to her on the blog yesterday, forgiving her for everything, and remembering only the love.  I do feel like a weight has been lifted, and while I have no belief in god myself, perhaps if I am to meet her again soon, somewhere out there, we can start again with the slate wiped clean.

And what of mothers day for this mother?  Well, it was a ripper, but at no stage was it lost on me that I am not expected to make next May.  I had an ace morning, receiving the children’s lovingly handmade presents, along with ones selected from the mothers day stall.  Then Gaz took the four girls out to sports commitments while I went and shopped up a storm and had a nice peaceful breakfast by myself.  Then I came home and we all got dressed and headed into Big Huey’s Diner, owned by our friends, for mothers day lunch with a whole bunch of people I love waiting there to share it with me.

Honestly?  Best.day.ever.  I laughed and ate and drank and chatted and kissed children, and hugged friends.  At one stage I surveyed all that was around me and realised that in the picture was pretty much everything I have ever wanted.  My four contented, BEAUTIFUL children.  Three were colouring and playing on their ipads, and my magnificent man was tickling the chin of our darling 7 year old, who has Down syndrome.  She doesn’t walk, or talk, but knows how to win a heart, and she has won that of her father.  She was so interactive with him yesterday that I was mesmerised by their bond, and at the same time had the breath knocked out of me by the staggering weight of my grief for what i am going to lose.  My family…two tables of people that weren’t even my family, but loved me enough to want to share their mothers day with me, perfect hosts and friends that fussed over me all day with drinks and spoiled the children, and just generally turned what would have been a special day for me into one of the most awesome ever.  I spend a lot of time wondering if my life being so BEAUTY  FULL will make it harder to leave this  world.  The answer varies, but yesterday, as I looked around at all that was mine, the answer was yes it fucking does.

Some photos from my day:

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Hold the space for me over the next few days, won’t you?  It’s going to be a killer.

11 Comments on “The unbearable heaviness of being

  1. You are amazing. The level of articulateness and realism you have while you grapple with all the emotions and realities of life and death is admirable. Keep writing if it helps you. It’s certainly helped many others.

    I wish you all the best this week. Lots of love x

  2. wishing you all the love this week Julia. Your blogs help many around you so by far if it’s helping you go for it. Thinking of you always x

  3. Hi Julia, My name is Annie. I was diagnosed with brain cancer last August. The best thing I got out of spending money on Belle Gibson’s app and book was coming across your blog. . I can relate to so much of what you are going through. Keep soaking up all those special moments that keep you going. All the best with your scan. Xxx

  4. Your courage is mindblowingly wonderful. What a bastard of a disease. I so hope for you that your oncologist can give you a ray of light.
    Holding the space.

  5. Please keep writing, I enjoy reading, and it is unbelievable what I have learnt from you.

  6. Thank you for the privilege of allowing us to read your writing. I find myself waiting impatiently for the next one to see how you are. Thinking of you as you go through the next few scary days.

  7. As always, I’m wishing for the best possible news on Wednesday. I thought of you today, something triggered me to remember your scan. Testimony to how your blog has touched people. We are strangers, but you’re in my thoughts. Keep happy, keep fighting, keep writing. X

  8. Holding the space. Write if you can & if it helps YOU.
    xxxF

  9. Hi Julie,

    I’m no one. I’m just some woman on the other side of the world that happened to see a link to your blog at the beginning of the year. I can’t make anything better for you. I can’t tell you I understand how you feel, because I’ve never gone through anything remotely close to what your life is. I can tell you that you are heard. Your inner light has shined over my world in the northeast of the United States. You have touched and been seen.

    All good vibes I have are yours for the week. Postage free, and none of that impossible to open packaging. =)

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