Walking the line

It’s been a funny sort of a week.  One that I started last Monday thinking I was finally getting to grips with this living fully while not thinking about the fact I am dying caper, but ended with a glimpse of my “future” that I just didn’t want to have, and it’s shaken me a great deal.

It all started with a trip to Costco.  My friend Kez and I decided to head there to shop for food for my birthday party (44th, good as any to celebrate, lol).  Kez arrived o pick me up and found me in shocking pain.  It was pain I had had before, and I thought I knew what it was, I’d had it before, and just had to ride it out.  In 1.5 hours or so I had gathered myself  into a state where I was able to leave and try to get on with the shopping trip.

We got there and started to walk around, though I had absolutely no heart in it whatsoever.  The pain was enough that it started me thinking about, well….the end, and how bad it might be.  That we might be able to overcome this  one, and the next, and a few after that, but eventually there is going to be a momentum gaining downward slide, and I am not going to be able to push through.  I knew my mental slide was closely following my physical one, and I concentrated on just my steps, my breaths, anything to keep control.

Then I saw the pink pyjama’s.  Each year at Easter I buy my girls a pair of cosy pyjama’s for winter to go with their eggs.  It’s become a tradition.  It’s the kind of thing that I have always taken a simple pleasure in, finding just the right ones.  I love the fitted ones with the stipey and patterned legs,  Baby Gap style and Costco do a great version.  And so, I saw the sea of stripes and pink and girly patterns and my face automatically started to smile.  It was nearly Easter and I could get their PJ’s!

As I stood there and felt the soft fabric and thumbed through sizes though, my life started to flash before my eyes.  Motherhood for me has been such a revelation.  I always knew I wanted to be a mum, but I always pictured myself with a big tribe of boofy boys that I would be taxi’ing around to football practice.  Four girls!  It took no time to work out that they were just right for me though, I loved all the things that went with having girls, the fashions, the jewellery, the colouring books….the pink pyjama’s.

So, as I looked through them the “whys” started.  Silly, random things.  Why did I put them in daycare so I could have the occasional break?  Why didn’t I realise my time with them might be so short and I would want every day of it back, every single fucking day I gave away so carelessly?  Why did I whinge and complain about cramming 4 kids and two adults into an 11 square house.  Sure, it was messy, and cramped, but it was the house where four babies used  to climb into bed with us on Sunday mornings and watch tv for hours…in fact, most of them were still in bed with us from the night before.  It was the house where we lit the coonara in the shed when we first moved in, and only had two kids, and Gaz put some music on and we held a baby on each hip and cuddled together for a slow dance.  Gaz got a little teary at our beautiful family scene and said he hoped we would be able to do this for years and years and years.  With staggering naivete, I shrugged and said of course we would.  I want those years back…even that house.  Give it back to me, all of it.  I won’t complain again, I promise.  That was the last house I lived in that wasn’t sullied by cancer.

And then, I thought of the mornings in the pink pyjama’s.   They’d always put them on before they started to devour the egg supply.  Often we were away on Easter holidays, but it didn’t matter where we were, there were always four children snuggling in bed in cosy new pyjama’s.  And while I might have taken some things for granted, never that.  I am so weary of wondering if I am doing every beautiful and golden thing for the last time.

And so, with a simple offhand thought “I must make sure someone buys my kids the pj’s after I am gone”, I came unstuck.  Kez was onto the situation very quickly and steered me to the exit.  I was in an awful cold sweat full of physical pain and emotional longing and I had to get a drink.  So there, in the packed Costco cafeteria, the whys continued.  Why my babies Kez, why?  Why me?  I don’t remember ever being very mean to anyone?  Stupid questions that have no answers, but sometimes you make the mistake of asking them in the hope that someone will come up with some sensible explanation as to why this had to happen to you, to your beautiful family?

With the help of my friends Kez and Sandy the party was able to go ahead, but I played no part in the organisation at all.  Rather, I spent the whole week trying to sort out this acute pain situation.  Though it is most likely to do with complication from previous treatment rather than advancing cancer, it has been frightening.  I have had the district nurses here three times to inject me with morphine, a service offered through palliative care – I had never had to use it before, and I hated the slippery slope it feels like when you start.  There was a comfort in being able to access harder core pain relief so easily, as I know the day will come when I will need them more than ever.  They were very comforting in their quiet way, moving about the room, straightening sheets, drawing up syringes, but I wanted so badly for them not to have to be here…not yet…it’s too soon….

There was a lot of talk in the lead up of cancelling the party, as I was just so poorly.  I wanted to have it, as you never know which party is going to be your last in this situation.  And I got there, even if it involved laying fully dressed in bed until the first guest arrived, and calling the pain team for a shot in the late afternoon to get through it.

Part of my quandary was that I always show the world my game face.  It’s easier not to have to comfort other people in the face of my failing health, so I only venture into the world when things are “good”, and I retreat quickly from it when they are not.  It means that we can all retain the illusion that things are “ok”…it’s as important to me as I feel it is to other people, but I can’t continue to do it.  And Saturday night, where I had to greet my guests from a chair on the deck and wasn’t able to mingle due to the pain, well, that was shit getting as real as it can get.  I had a really good time, but I felt some people were less comfortable around me than they used to be.  A friend mentioned to me that they had never been to a “birthday wake” before.  Pretty spot on, actually.  I hate to make people feel uncomfortable with my cancer, but hey, what can you do?  Only a few will have the strength to go right to the end with me, but that’s ok, it’s a very confronting situation.

School holidays start today, and the scene next to me looks like this:

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There are snuggles to have, movies to watch…..and I’ve got to go out and buy some little girls some pyjama’s.  For the moment, life goes on.

11 Comments on “Walking the line

  1. I feel you. Facing the same situation here in the states. Sitting here on the couch crying as I empathize with the “is this the last time I get to do this?” thoughts. Crushing at times. Wish I could tell my kids that I will be there for them when they need me in life… but I can’t. It feels pretty lonely at times…. but know that you are not alone. Popping oxy like tic-tacs these days, but so be it.

  2. I know we have not met but your heart rending and savagely truthful writing has formed a bond with many of us. I wept when I read this, truly heart sad for you. Holy shit we do anything for our children don’t we? Is wanting to live for them asking too much ? But nothing in life is fair and your suffering sure ain’t. I watched my 21 year old son suffer through leukaemia and the pain was awful. Yes, he lived but 12 years on we still have pain, both of us. Your fella and your girls will have pain but that is not something you cannot protect them from, I am sure you have given them a ‘good enough’ role model to carry on and make you proud of them. But it royally sucks!!
    All I can say is keep writing as long as you can, this will be a fabulous legacy for the family and friends. Oh and Costco is enough to give anyone a pain!!
    Enjoy pink pyjamas, chocolate and morphine this easter, what a combo!! Love……..sisterhood…..blessings…xxxxx

  3. Jules I have followed for some time and you always pull on my heart strings but tonight I am crying at your words. I hope that you are pleasantly surprised about who goes right to the end with you. I think we were surprised with my mum.

    She too hated the world to see her on a bad day and always put on her game face for friends and extended family.

    You have been so strong, keep making beautiful memories with your kids.

  4. Thank you for your beautiful words. You are a beautiful woman. Xoxoxoxoxox

  5. Jules, I hope you are pleasantly surprised in so many different things. I’ll be here reading whatever you write. Your last post’s call to action – to get going on what we want to do while we’re still feeling naive about time – it kicks me up the bum every time I think of you (and you’re in my thoughts a lot). To take steps every day towards what I want to look back on and feel satisfied, that I did it, or I gave it a red hot go. I don’t expect that to make you feel better, but I do hope you can feel your words are reaching people. Heaps of love and enjoy seeing your girls try on those winter pjs. Xoxo

  6. You don’t know me- I’m just a random stranger who tripped over your blog through a friend. I have since trolled back to the start and have fallen in love with your heart and your words and your brutal truths. I had the urge tonight to tell you, firstly- thank you, and secondly, that I’m gonna miss you when you’re gone. I hope to God that day is a loooong time off, but in case I don’t get a chance to tell you, I’ve told you now. You say to do what fulfills you, to follow your urges however weird they may be. Well, YOU were today’s weird urge, and I’m done. I’ll go back to being a silent witness. Bless you lovely lady xx

  7. It’s all “one day at a time” right now. To distract yourself and try to love and be loved.
    Your words bring me to tears and make me think so hard about what is really important.
    God bless you my friend. xxxx

  8. Coincidence or fate that I came across your blog today? The day I start an agonisingly long wait to see if I have the dreaded ‘c’, we’re almost the same age, both with 4 kids. With my bowel issues I always figured that would be the one I get if the day came, but alas, it is the beautiful cervix that birthed my children that is now betraying me. At this stage we’re just calling them dodgy cells and going through the motions of investigations, while I’m as scared as all hell, I come across your blog which I’m struggling to read but I promise whatever the outcome I will let my light out, your words are not falling on deaf ears. I hope we both have many decades to come xxxx

  9. so I only venture into the world when things are “good”, and I retreat quickly from it when they are not. It means that we can all retain the illusion that things are “ok”…it’s as important to me as I feel it is to other people, but I can’t continue to do it.

    It’s actually horrible we all do retreat so fast and FAKE. PLEASE STAY REAL. said the velveteen rabbit. I’m going to start going to parties and sitting. You don’t have to be the head social entertainment even at your party! It’s the point of being together and love. You have got ThaT part down. Enjoying learning from you every day. Stay in the day and do what you can and share what you dare. Love and strength and go away pain NOW. SO glad you are getting the pain treatments you need — look at it as necessity not ongoing and final. It’s final when its final. I love that yoir doctor says some have years and yipppee for nodules. Combining two posts here but love to you all

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