Fifteen minutes

It’s been a “long” time between blogs, and I know that a lot of you will be wondering how I am going.  To be honest, I have started a draft a few times, but I just feel so lost….so completely unable to describe the amount of feelings I have to process in one given day…or even an hour.

I remember writing a post a while back about how I had to revisit shocking news (at the time it was the 50% mortality factor) every morning, when I woke up, as though I was hearing the news again for the first time.  Well, now I am having a breath sucking revelation about my mortality approximately every 15 minutes.  There is the waking thing, yes, there is still that.  Then I gather myself, get up, start getting the girls ready for school, put the kettle on, smile at something that girls have said…..SMACK……HOLY FUCK I AM GOING TO DIE OF CANCER.  Start to panic, breathe deep, practice mindfulness, drag my mind back to the present.  Continue on with my morning, get in the car for the school run, someone asks me about the school play later in the year, and whether I will come.  I say yeeeeeessss, and then SMACK.  I DON’T KNOW!  I’M GOING TO DIE OF CANCER AND I DON’T KNOW WHEN!!!  Breathe.  Mindfulness.  Drop them at school, listen to the radio on the way home and hear them talk about some sequel to some kids movie that is due out in 2016.  Start to smile and think about taking kids….SMACK.  I’M GOING TO DIE OF CANCER, BY THEN I WILL PROBABLY ALREADY BE DEAD.  Breathe.  Practice mindfulness.  Rinse, fucking repeat.

None of this is because I feel negative.  None of it is because I am giving up.  It’s just reality, and I am in the early days to learning how to really live with it.  As human beings we are remarkably resilient I think, as I am, despite how the above probably sounds, still living, still loving, still enjoying, still smiling.  Even if it’s only for 15 minutes at a time.  I have been thinking a bit in the last week or so about what I have lost.  The ultimate loss is one that I can’t think about…the loss of seeing my girls grow into women.  I can’t go there, so I won’t, the only thing that keeps me sane at the moment is not allowing my mind to go there at all.  One day.  Not yet.

Then there are the other things.  The loss of life itself…the irony that I am going to lose it when it took me nearly my whole 43 years to really start loving it.  The career that I hoped I would have.  The home that I nearly bought.  The books I hoped I’d write.  That chance to reach the potential that I am starting to realise I have.  Why now?  Why me?  I have to stop myself time and time again from asking the unanswerable.

I was very worried before the liver resection, what would happen to me if it didn’t go ahead….and of course, now that is what has come to pass.  I said that I would not want to fight for time, and that any life in the absence of hope would merely be an existence.  And yet, I have found that a life lived in the knowledge that it will be very finite is still very much a life.  And time?  I’ll fight for every minute of it.

Realistically, sometimes the sadness just gets too much.  Last week I went to TAFE on the Wednesday in the knowledge that our beautiful Deb was being farewelled that day.  I really wanted to be at her funeral, but it was about a two hour drive away and I couldn’t work out the logistics of getting the kids to school and making it there in time.  I also felt guilty about my internal struggle with going to her funeral, even if I had been able to work out a way, due to the fact that a funeral will be held for me in the not too distant future.  The person that would have understood all this better than anyone else would have been Deb herself, but that didn’t stop it eating away at me all through the morning, until the tears started to fall at lunchtime.  I was comforted by friends, and was able to get on with the day, but the misery started to build again when I had to leave early to go and get a baseline CT scan before starting chemo.  I sat there, trying to get down the disgusting iodine contrast drink, and the reality hit me that we aren’t working towards anything anymore.  The first scan I went into with no hope that things would be better.  We know they are worse from what the surgeon observed and we will only find out how much worse.

While I waited for the contrast to go through my system, I went up to see my oncologist and get a script for worsening liver pain, and thought about how we hope that chemo will make things better for a time – hopefully a long time – this is far from assured.  I went downstairs again, and got fed into the scanner, after a clumsy placement of a cannula to insert more contrast, which HURT.  Then I went to pathology to have my baseline bloods, and the struggle was on to get a vein, and then to make it bleed enough, and I started to feel myself becoming really unstuck.  After months of a break from chemo, and operations, in an effort to get to the liver resection, my life was back to being so medicalised, my body back to being constantly invaded, but this time, there was no end in sight.  By the time I got home I was sobbing, and despite my best efforts to regain some control, my daughters unfortunately witnessed it.  While I howled and unpacked groceries and tried to prepare some dinner, my 8 year old came and reached her arms up to me for a cuddle.  As I bent to her, she tenderly wiped a tear from my cheek, and said “it will be all right mama”.  And I wished more desperately than I’ve ever wished anything that I could tell her it would.  Tremendously difficult, gut wrenching stuff.

Despite all this, life goes on, and I have had a tremendous amount of fun these last couple of weeks, as well.  I’m not in limbo anymore, not waiting for anything, just taking one day at a time and getting on with the business of living.  On the very awful day describe above, I found out that my friend who I was going to the Lady Antebellum concert with next week had entered us into a competition to meet the band, and front row tickets to boot….AND WE WON.  So Tuesday night we are going to eat dinner at The Press Club, somewhere I have always wanted to go, and then go backstage and meet Lady Antebellum, and then watch them from the  front row.  We know they are an awesome band live as we saw them a couple of years ago.  Best of all I get to share the experience with such a very dear friend.  Can’t wait :)

Also, we just came back from a weekend away staying with friends at their beautiful holiday home on Victoria’s Great Ocean Road.  The scenery was stunning, the company magnificent, and our friends spoiled us rotten.  Fantastic family time, and friend time, all at once.  There are still so many good times to be had, and I will keep having them as long as I can.

On a final note, I want to share with you my new friend.  She is awfully pretty, and resides permanently on my arm.  For many years I have wanted a half sleeve tattoo, but the old me used to worry a bit too much about what people would “think” of me if I got one.  When a remission looked likely, had the liver resection taken place, I made a deal with myself that I would get one done as a remission present to myself.  It was all going to be based around a print that a friend posted on our cancer support group way back when I was just diagnosed.  This lady came to mean a lot to me over the year, and my friend Jo even sent me an ornament of her last Christmas.  As I return to chemo next week, and it will be for life, which means no tattoos for life, I decided that, although there would be no time for a half sleeve, due to that needing a few sessions at the tattooists, I could still have my lady.  I’d like you to meet her :)

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She has “I choose hope” written across her chest.  And despite the odds being stacked against me, I choose hope too.   Without that, you have nothing.

10 Comments on “Fifteen minutes

  1. When I first saw the picture of your newest friend the picture of the bird right in the centre of her chest reminded me of Emily Dickinson –

    “Hope” is the thing with feathers –
    That perches in the soul –
    And sings the tune without the words –
    And never stops – at all –

    And sweetest – in the Gale – is heard –
    And sore must be the storm –
    That could abash the little Bird
    That kept so many warm –

    I’ve heard it in the chillest land –
    And on the strangest Sea –
    Yet – never – in Extremity,
    It asked a crumb – of me.

    When my grandmother, who in retrospect was not very old, started dying from her cancer she asked me why her, of all the people waiting around to die did it pick her who had so much left to live. I didn’t have an answer then despite going all the way to medical school to try and figure it out. And I don’t have one now. But I have faith that you will find your own meaning.

    Much love.

  2. I’m sorry that you’ve been cheated of the time that should have been yours. It is not right to be confronting your mortality at your stage of life. It’s so unfair, frightening and sad. Most of us go through life in denial of death or thinking it is something that will happen to us after we’ve done everything we’ve planned out for ourselves in our heads. It just doesn’t compute for people of our age who have lives still in progress, stuff they want to do and families to bring up. So, so wrong.

    So yes, in the face of all that is so wrong, choosing hope is so right. I love the lady … she is perfect for you. xx

  3. Hi Julia, think of you often. Just a note on the painful cannula- has it ever been suggested by anyone to get a port inserted (either in arm or chest)? I have one and all chemo is administered via it and also bloods can be taken from it. No pain when it is being used and when not in use can hardly see it. Just a thought it might be of use. (My hospital is Peter Mac) Take care xx

    • Thanks Melissa, I had a port inserted yesterday :) I had one put in last year, but it got infected and had to come out so hopefully better luck next time xx

  4. Hi Jules, your writing is both uplifting and sad at the same time. I look forward to hearing your blog. My Husband is stage 4 colorectal cancer.He also had liver resection. Been battling 2 years now, it really changes the way you look at everything does’nt it. Its amazing what we used to find important. We try and enjoy life whenever the opportunity arises . You seem like such a warm lovely person, sending massive hugs and loving thoughts your way for lots more good times ahead. Love from Julie Foley xxxxx

  5. OMFG JULES, you bad bitch you got a tattoo! And I missed it because fuck facebook in its asshole face. Miss you though x email me if you’re ever bored, I miss your face ( or profile pic whatevs)

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