She who fortune favours

Today I finished my last classes at TAFE for the foreseeable future.  I’ve added another couple of subjects to my list of achievements, but at the moment I am not sure that I will return to complete my diploma.  The last few months, my studies have given me everything I sought from them.  Engagement, a sense of purpose, a chance to socialise with my peers, have a laugh, keep my brain active, and probably most importantly of all, it’s kept me from staying home worrying about dying.  Now, however, something has shifted….changed.

I’ve stopped worrying about dying.

I’ve been reading back through some of my blog posts, in order to have things fresh in my mind, to take part fully in the creative process that is going into the production of my book.  I don’t need to tell you that it  has been some batshit crazy year and a half.  I realise I have spent most of it waiting for some sort of outcome, and hoping that the eventual outcome wouldn’t see me in a pine box.  There have been several major surgeries, life threatening complications, chemo warfare, radiation poisoning, 13 months of trying to get to potentially curative surgery, the introduction of the 50% factor, a massive risk I had to take with my life in order to have one of any length.  Then of course, I took that risk, only to find that my cancer was too advanced to be cured, and I had to come to terms with my terminal status.  HOW.THE.FUCK.AM.I.STILL.SANE?

The months between the failed liver resection and the results of last weeks scan have by far been the darkest.  Yep, even darker than those 50% days, would you believe.  Even when looking that horror in the face, there was the chance, small though it was, of a very good outcome.  For a while it felt like when that was gone, everything that I was, every bit of strength that I had been able to muster went with it.  Oh sure, I lived, but I lived in fear, counting down the days, watching the sand fall through the hourglass, knowing that when it was all through, I wasn’t going to be able to turn the hourglass over again – that sand was my life force.  Then of course, last week I got the news that the sand might run quite slowly, and for me, that changed everything.

I’ve re-discovered joy.  That sort where you realise you have been smiling for so long your cheeks ache, and you have to rub them.  I’ve also become acquainted with something that I realise I knew little about before – flexibility.

In the famous words of Powderfinger “Control, well it’s slipping right through my hands….these days turned out nothing like I had planned…”.  Indeed.  It’s a bit of a cancer anthem, that one.  It’s made me ponder though, why we like to have so much control over our lives as a general rule.  Why we like to plan, and have an idea of how those plans will pan out.  It only sets us up to fail, when there are so many ways life can fuck us over.

And so, I give myself over to things I can’t control.  I am in a very unique position, as I can now live my life with the fullness of someone who doesn’t know how long their life will be, and with the unique perspective of someone who also knows it’s not destined to be the three score and ten.  I’ll take every opportunity to live, laugh, love, create, turn my face to that bit of winter sun that creeps through the clouds occasionally, and I won’t look at the hourglass.  How far the sand will fall is in the lap of the gods, and I’m not going to focus on it.

I think my next blog post might be the one where I get to give you a sneaky peek at what the book will look like, and also a brand new look for Five Fairies and a Fella.  Life can still go in this astonishing and exciting new direction, when you are terminally ill and least expect to START a new path.  My mind is full of ideas, and many exciting things are around the corner.  Can’t wait to share it with you all.

How Julia got her groove back

The last few days have been filled with so much love, hope and happy.  Where to start?

Last Wednesdays news changed everything.  It’s not for a minute that I am in any denial that this cancer will take my life.  But the minute that the goal posts were moved, that the response to treatment was positive, that I went from a possible lifespan of just months to not knowing how long we can give this beautiful life a shake, I became a changed woman.   The focus is definitely on life now, not death, and what a wonderful feeling it is.

Even the hook up to the poison pump the next day felt different…better…with purpose.  Instead of torture I didn’t even know was working, it was the key to keeping me alive.  Instead of being chained to a chair with a needle in my chest for 4 hours, it was four lovely hours having chats and laughs with the nurses, and my dear friend who sits through these hours with me and keeps my spirits up.  As we were leaving, a lady in the next chair who had been on her own through her whole treatment commented how lucky I was to have someone sit with me the whole time like that.  And she was right, I am lucky.

Chemo has hit me a little harder this cycle.  Last time i seemed to get away with nearly the whole thing with little more than the uber tiredness that goes with every cycle.  This time, a little more numbness and tingling in the extremeties, and nausea from hell.  We went to our usual Thursday night dinner out at the RSL with friends just a few hours after I was unhooked, and still hopped up on steroids.  Not long after we arrived, a big kiss and cuddle arrived from the side – my gorgeous friend Kylie over from Perth to surprise me!  This girl hates a flight with a passion, but drags herself onto one for hours to come and see me.  See, lucky.

Kylie came over the next day, but I was too sick to go out for lunch. Instead she prepared lunch for me and I ate it from under my blanket on the couch, and we caught up.  Friends that you don’t have to put on airs or graces for – lucky.

I booked in last week to go to a self-publishing masterclass.  My blog book has already been written, and production is underway, but if I was going to be given more precious time (at this point, I didn’t know), then I was far from ruling out giving another book a crack…I have so many crazy ideas, but I couldn’t entertain them until I knew I might be able to actually do them if you know what i mean…and I was very interested in the process that goes into producing a book.  It was a fascinating and informative day, and let’s just say the brain is in overdrive.

However, i didn’t know that my booking in for this was sending my camp into a panicked frenzy.  For six weeks  or so, my husband and Kylie had been cooking up a bit of a surprise for me (just a BIT!)  And the surprise was for the night after the masterclass.

I got home, exhausted, gave myself a bit of a shake and we headed out  for our scheduled dinner with Kylie at the hotel she is staying at.  As we walked in for our booking for 7, the staff kept on going on about these tables for 25.  I’m like, no, we are only 7, and they walked us to this massive table, where we awkwardly tucked ourselves into a corner.  I am slow as a wet week, and not for one minute was I jerrying that anything was afoot. Finally Kylie said she was going to ask the manager to move us to a smaller table – cue my surprise as she went and told everyone to come in.  I looked up and said to Gaz “Gaz, isn’t that Andy Bugg”, and THEN the penny dropped!  I got up and ran over, and they all filed in….some of the nearest and dearest members of my “Down syndrome family”, including friends that had driven down from Canberra for a whistlestop stay, lovely friends who I had not seen for years.  Exhausted, yes, but all of a sudden this girl had a second wind.  Lucky, and loved.  Here are some photos of the night:

There is no greater gift that being loved.  To know that all that work went into surprising me.  Sorry for all the stress guys, for worrying I was burning the candle at both ends, and would be too tired to turn up for my own party 🙂  I had the best night ever, love you all so much.

Here is a picture I had taken yesterday morning, on the way to the masterclass, as I could see it, that I was back, the essence of me, and I wanted you to all see it too.

The first thing I need to learn is my limitations I think.  Still getting used to those.  I want to pack so much into these days, and I can also feel myself about to hit a wall.  The last week of TAFE this week, and so much work to do.  I have decided not to continue with TAFE for the second half of the year….I have a project with this book that I am really enjoying and revelling in, and I want to give it all the time it deserves…it is after all the realisation of a massive dream for me.  I also want to concentrate on having the time to put into healthy eating, and exercise, and trying to get this magnificent life to go on as long as possible.  I’ve just got to get through this uber busy week, and then it’s home and hearth and healthy meals, and snuggles with my people, and a good bit of learning to slow the hell down!

That’s it from me for today.  Content, loved, lucky.

The sun will come up, tomorrow.

Thought I better blog tonight as I know you are all waiting for news of scan results.

In short, they were bloody brilliant, and far exceeded expectations.  All my liver mets have shrunk 25%, which is absolutely fantastic considering that I have only had three cycles, and one of them didn’t include a particular drug, and all three of them have only been on a 50% dose of the most powerhouse of all the chemo drugs (and the most toxic).  My oncologist said two sentences that were music to my ears today: “you are obviously still very sensitive to first line chemo”, and “we are looking at getting a long period of control”.  I don’t know how long long is, but that will do me, thanks.  I now know, that while nothing in this shitty cancer life is guaranteed, I am a possible contender for living with this cancer for some years.  The oncologist also said “we’ve still got quite a few options up our sleeves for later”.  Did I ever tell you I bloody love that man?

I said recently in a post that I would never know what it was like to feel joy again.  I mean, how can you, when you have a death sentence hanging over your head?  But I tell you, the mood in that oncologists office today, among my sister, my friend Kez, and my (sobbing) husband was almost festive.  My oncologist was beaming, we were all having a laugh about me being an author and whether I would have time to attend my 3 weekly appointments with him anymore, and we all felt pure relief.  I walked out of that office, I hugged my people, and I felt it.  Yes, it was joy.  I’ve missed you my friend.

What lies ahead?  Three blissful months until I have to think about this crap again.  Three weekly hook ups to the poison pump, and quiet confidence that the mets will continue to shrink.  In three months if I am still responding I will be shifted onto maintenance chemo, and that is where we seek to start on this long period of control.

This news today means so many things for my life.  I looked at my children tonight and I wasn’t terrified that we’d already had our last Christmas.  I am confident that I will walk my eldest child into her first day of high school, and then I will set another goal when her sister follows her a year later.  I have enjoyed the last few months, as I refuse to waste too much time worrying about what I can’t change, but if I was to be honest, there have been moments of pure terror.  There has been no way in the last few months to know whether I would respond to chemo like I did before – sometimes the cancer gets too big for the chemo, and it just can’t overcome it.  On the way back from our weekend away, I started to have pain over my liver area (despite taking a lot of photos of the grog haul on the weekend, I didn’t actually drink very much, I know it’s not in my best interests), and over the next couple of days it got really quite severe, into my back, and up into my shoulder.  I could only think that my liver was worsening and not responding, and going into these scan results I have had to take the blue drops of calm from palliative care a couple of times to help me cope with the fear.  I really and truly thought a couple of nights ago that my demise could actually be quite close, and I was really very very scared.  This is going to be part of my life forever now, so I just have to work it in.  So, the results of today also mean that when I get pain, I don’t have to be scared.  Pain in itself I can cope with, but the psychological terror that goes with it, when you don’t know if treatment is working is diabolical.  Now I will say ah, it’s just pain, pop a pill, and chill.  Kinda…something like that!

There are things that are happening in my life at the moment that are truly extraordinary.  And I mean beyond my wildest dreams, gobsmacking.  There will be a book, as I already told you, but there are actually other things which I will be able to talk more about shortly too.  The other day I was really struggling with the positive direction my life was heading in juxtaposing with the possibility of a really quite imminent death.  Now I can really enjoy what the next few months will bring (and they will bring amazing things – can’t wait to tell you more), comfortable in the knowledge that I am not going anywhere any time soon.

Cancer, as much as I hate it, has given my courage.  And I am not talking about the courage to die, I am talking about the courage to live.  The opportunities that have come my way recently are not things I would have the confidence or self-belief to chase after even two short years ago.  Do something courageous tomorrow, in honour of my news.  Chase a little dream.  I love the thought of that, I just love its guts.

My sister and I tonight, celebrating my fabulous news.  It’s so so hard on other family members, I am so glad she came to support me, and hear first hand that things are on track.

On a devastatingly sad note, yesterday bowel and liver cancer took my beautiful friend Amelia, the second member of our close knit cancer support group that we have lost in the last few months.  Amelia was in her very very early 30’s, and she was bright and beautiful, and had her whole life in front of her.  Her heart was golden, and I know that she would have been so thrilled at my news today.  The unfairness of this, the cruelty, it’s truly breath sucking.  Much love beautiful girl, you were a shining light in our group, and we all adored you.

The Sisterhood of the Travelling Beanies

First of all, I know that lots of you are awaiting my scan results.  And, would you believe, I don’t KNOW!!!  I always meet with the oncologist in my second week of treatment, so that we can tweak the chemo if need be….ALWAYS the second week.  So, when the appointment was made for this round, I didn’t even look at the card.  Wednesday my Gaz came home from work early and I was waiting at my friends place for him, as she was coming too for extra support, when I realised that I had not received the usual confirmation text message from my oncologists office…and believe me the colour drained out of my face at that point!  I looked at the card, and sure enough, the appointment is next week!  I called his office in a panic, but they could not and would not get me in to see him, and I have to wait until this coming Wednesday for the results.  I did ask for him to call me, but he did not…he won’t give results over the phone, so he avoids calling to avoid being asked for give them, I guess.

I quite simply had to move on.  It can’t be changed, it will be what it will be, and I had a weekend away to look forward to!  It wasn’t easy, but I refuse to waste any of my precious life over something that I have no control over.

A while ago, my dear friend Sandy offered the use of her gorgeous beach house on Victoria’s stunning Great Ocean Road for a girls weekend away, to cheer me up.  We decided on the weekend just gone, and we got a group of 8 together, including my sister and sister-in-law.

This sort of thing, while wonderful, always has a confronting element.  Will I be able to think of it as a wonderful weekend away, of which there will be many more, or will I stumble….worry that it will be the last time we all manage to be together like that….let this make me fall into the proverbial heap?  Triumph, or tragedy?

Let me tell you, every single minute was a triumph.  I took living in this here moment and gave it a massive shake.  We drank, we ate, we drank, we slept when we wanted, got up when we wanted…and LAUGH?  I’ve damn near broken a rib.  I was a bit concerned that if I managed to keep the sadness at bay, others would struggle, but nope, they did me proud.  It was just a normal girls weekend away, where I felt enveloped in the love of some of those dearest to me.  And will there be another one?  My word there will.

Some photo’s, starting with our view, while doing all that eatin’ and all that drinkin’ and all that laughin’:

Sam arriving with some refreshments:

With my gorgeous friend Simone:

My sister and sister-in-law:

My Kez and I hitting the sack for the night.  I wore the pug suit.  She called me Wilfred

My sister-in-law managed to whip 3 of us up beanies over the course of the weekend, and we modelled, along with a couple of ring in’s…:

And I rocked this somewhat thrown together new look:

I know, right?  My, how we laughed.  How could we not?  Life is there to be lived – live it!

That is not to say the weekend was free of emotional stumbling blocks.  They will always be there, and I just have to roll with them.  In this case, it was in a shoe shop in Lorne.  I was buying my second pair of boots for the day, and commented to the women who owned the shop that I would love to buy my little girls a pair of shoes each, but as I had four of them, and the shop was rather high end, I had to stick with spoiling my good self instead.  They told me to make sure I bring all my girls back when they are older.  I swallowed the lump in my throat and said I would.  My sister-in-law told me the next day she noticed it too, and had to swallow her own lump.  Such a simple, throwaway comment is now a minefield.

The other thing that I am struggling with is how incredibly fucking good life is.  As Kez and I were motoring back home along the Great Ocean Road earlier today, the sun was shining, the water was like diamonds, my love tank was totally filled by some wonderful women who I know love me with all their hearts.  I was going home.  To my fairies.  To my fella.  To my huge group of supportive friends and family.  To my lovely home.  To the busyness of the last couple of weeks of this semesters studies, at which time I will add another 3 passed subjects to my list of achievements.  What the blue FUCK is this dying business?  I can’t do this shit, I am too happy, just way too bloody happy for that.

I can’t buckle under the weight of this, the fear and the unfairness.  I MUST use it as the impetus that drives me on.  People sometimes search a lifetime for this sort of happiness, and many never find it.  I have, and I will hang onto it for DEAR LIFE, every single minute that I can.

This is perhaps a good time to mention that whilst I was coming home to all this happy, I was also coming home to….wait for it….throw myself into the creative process of TURNING THIS BLOG INTO A BOOK!!!  It’s a happening thing, my lovely readers!  The ultimate for any writer is their name on the cover of a book, and I can say, giddy with excitement, that it will indeed be a thing.  Thank you so much for asking for it so many, many times.  Thank you for believing in me.  I thought about it so many times, but I didn’t think I had the energy to see it through, not with the energy sapping festivities of “chemo for life”, and I was very emphatic that it would not be done posthumously.  So, how would it end?  Not with the most “natural” conclusion, as I said.  I know what the last chapter will be now, I just have to write it.  And as for the work?  A team of wonderfully creative people have got behind me, and taken all that on board.  Heading up that team – my absolute idol, which makes me trip out all the more.  How amazing, eh?  Stay tuned for more info, I don’t think it will be too long 🙂

Go out there and live your best life this week.  Hug your kids, plan your own girls weekend…take the first step in a dream.  Even if you make a small inroad, one day it can yield great results.  I dreamed of one day being an author, and I am going to be one.  If my dream can come true, so can yours.

Last but not least, please come and join  my new Facebook page that I have set up for this blog.  I will post all new blogs there, and it will be and easier place for you to comment and communicate with me.  I read all of your comments and appreciate them, and I am more than happy to connect with others in similar situations to me through this page.  Facebook just makes life easier, I reckon 🙂  Updates on the book will be posted there, too.

https://www.facebook.com/pages/Five-Fairies-and-a-Fella/1446684982309715?sk=timeline

Much love my friends….back on Wednesday with the dreaded scan results!

That long forgotten feeling

I went for my CT scan this afternoon.  I didn’t take anyone with me, as it’s “just a scan”…results are tomorrow and Gaz will be with me, of course.  I’m always ok, I just drink the drink, hold out my arm for the cannula, look at the screen on the scanner that says “chest, abdo, pelvis”, take a deep breath…wheeee, they roll me in.

I wasn’t really ok today.  Truth is the anxiety is a bit of a killer when there is never going to be a happy ending, that the only “answers” I will get tomorrow is whether it is awful, or really really fucked up.

I always look around the waiting room, in the hour it takes between the contrast drink and the scan, and wonder what other peoples stories are.  Are they sad like me?  Dying?  Lonely?  Scared?  I always hope they are none of those things..that they just have a bit of a pain in their leg, or need surgery for gallstones, or something that can be god damned fixed.  It doesn’t help me that I am not alone, that there are probably other people in that waiting room by the law of averages that know all about the turmoil inside my head.  You just wouldn’t wish it on another living soul.

I was telling someone the other day about Gaz and my trip to Vanuatu…I think it was about 12 years ago.  After I told her, I was trying to call to mind the freedom of that time, that we just ate, drank, went to bed (and it was the “honeymoon period”, we went to bed a LOT 😛 ), got up, jumped in the hire car without having to buckle anyone into a seat..only worried about applying our own sunscreen…you know, things like that.  But the thing is, I couldn’t.  I couldn’t evoke that feeling, that memory….I couldn’t remember a time when we didn’t have our children, and it was fascinating to me that they were ever not here.

Now it’s fascinating to me that cancer was ever not here.

I tried to evoke that feeling today when the pregnant woman came in.  I was sitting there trying (unsuccessfully as it turned out) to keep the iodine drink down.  She wandered up to the reception desk with her partner and the receptionist asked if she had a full bladder and she said she did and made some comment about how the baby was bouncing on her full bladder and she hoped she’d get in quick.  Then she sat down opposite me and I watched her and her partner exchange excited glances.

I smiled…I was genuinely happy for them.  I’ve had four babies, I’ve felt that  joy four times.  And I begrudge it to no one.  So, I sat there and cast my mind back to the scans with our babies.  I remembered sitting outside the room at the Mercy hospital with Gaz, as we waited to see our first baby on the screen.  We were nearly jumping out of our skin with excitement.  A baby!  A life filled with promise – hers and ours.

I wondered if it would help to think of happier times, so I tried to evoke that feeling, that pure joy that I know we felt that day.  But do you know, for the life of me, I couldn’t.  I don’t remember joy.  I don’t remember innocence.  I know I felt them once, but I don’t remember what they felt like.  And the heavy weight of knowing that I never will again is breathtaking.

I mourn joy, I grieve for it like a person I once knew, and loved, and won’t see again.  Instead of being able to enjoy the memory when the technician said “do you want to know the sex” and we said yes, and she said “it’s a little girl”, and I burst into tears, because I always wanted a little girl, all I could think of was holy fuck, what if I had known then that I would die and leave that baby girl without a mother when she was 12 (she’s not 12 until September, but I am quietly confident).  I’m glad I didn’t know.  I’m glad I got to feel, for a little while what this lady must  have felt today.  That beautiful feeling of thinking you are bringing a child into the world that you are going to see graduate from high school (hell, I’d even take seeing all of them out of primary school), and make their way into the world, have their  own babies….I hope she gets to do it, too.  It’s something that no one should have taken from them.

I was sobbing in the scanner….my whole body shaking too much for them to do the scan at first.  Finally I was able to gather myself enough for them to do it.  On the way out the nurse gave me a cuddle and more tissues and asked if  there was anything else she could do for me.  I gave her a sad smile and said “not unless  you can find  the cure for cancer”.

And that’s all I wish for everyone.  If you are reading this and you have to face life every day knowing that your babies will  soon know a world without you in it, I’m sorry.  I wish I could take it away – for all of us.

The unbearable heaviness of being

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:

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:

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

Dear Mum

Your mother…well, she is everything isn’t she?  The only person whose heart you heard beat from the inside, beside your very own.  The person who will, without question, love you more than anyone will in your whole life.  The person that you will miss, beyond comprehension, every single day that she is gone from your life.  Today, on this 23rd mothers day I will spend without you, I want you to know that you were everything to me.

You went back to work when I was very young.  I will always remember the story that Auntie Thel told me about how you would rush to her house every day at lunchtime, on the bus, so you could breastfeed me and cuddle me – you never had time for lunch yourself.  I remember how you risked so much so you could have me, 43 years old, and 19 years since you had a baby.   I remember the story of finding out your were pregnant with me…”The doctor said that if I was pregnant, the slide would go furry.  Furry!   It was like a bloody angora rabbit!”  You were so funny mum.  I remember you insisting that you would not terminate your pregnancy with me, and convincing the doctor to perform an operation on you when  you were 5 months pregnant with me…”the surgeon said he could see you in the womb, and that you wouldn’t last the night”.  I did, of course.  Thank you for my life, mum.

Down the track, things got a little darker.  Parenting and depression are a hard combination, and there were times it seemed to get too big for you.  There were many times that you seemed absent from my life, even though you were there.  I focused a lot on those dark times, on the things that you didn’t do for me, on the times that I felt you could have been present, but weren’t, and especially on the time that you didn’t offer me the ultimate protection from an events that shaped the course of my whole life.  I’ve written before about how hard it has been to forgive you for  these things, and I am not going to write about it again here.

I understand how hard it must have been to love your family, your own children, when you never knew what it was to be loved yourself.  I remember the times you took to your bed and cried, sometimes for days…”nobody loves me, nobody ever has..”  Dad and I would look at each other in despair, as we did love you,, so much, and we didn’t understand how  you couldn’t see what you had never felt.

Today I remember all the beautiful things about you…there were so many.  The way you cared for people less fortunate (I think she is where I get the desire to do the same).  Dad and I sometimes got frustrated that there always seemed to be someone down on their luck inside our home.  Thank you mum, because you taught me compassion.

I remember the time that I got called in front  of the principal at school, and you were called into a meeting with him.  He spent 15 minutes extolling all the bad things about my character, and  you listened intently the whole time.  I thought I was toast, until you called him an idiot, grabbed me by the arm and said “come on love, you don’t want to go to this school anyway!”  Thank you mum, for believing in me – always, even when it seemed like no one else did.

I remember getting off the plane after 18 months in England and seeing you waiting for me at the airport.  We both ran sobbing into each others arms.  Now that I am a mum myself I realise how hard it must have been to unselfishly let me go and live in another country, half a world away  from you ” you go love, live your life, don’t worry about me”.  Thank you mum, for giving me wings.

I’ve often talked of breaking the cycle of the way I was parented, in my own parenting.  But lately, I have come to realise that you were already breaking it.  No one is perfect in this  world, and to  come from where you did and be able to show compassion, and kindness, and tolerance for everyone no matter how different they were from yourself, and most strikingly, to  show your children how it felt to be loved, is the ultimate breaking of the cycle.  And for all the bad things that I have held onto all these years, I have never once been able to say I never felt loved.

I forgive you mummy.  None of those things matter any more, and never will again.  I forgive you for all the things that I know you were never able to forgive yourself for.

I’ve been talking to you in my head lately, of all the things that I am scared of.  I’m so scared mum.  I think about you taking your last breath while your beloved child was another world away, and how gut wrenching that must have  been.  I wish I had been there mum.

Today, as I face what may be my last mothers day with my own children, it comforts me to  know that you might be there, somewhere, when I take mine.   Wherever you are, I imagine you patting the chair  next to you, opening up a fosters and lighting a fag, and saying “come on love, sit down, let’s have a drink and a yarn”.  And somehow, it makes all of this a little better.

I love you mum.

Your Jules xxxx

A penny for your positivity

First of all I want to thank you for your support since my last blog.  I sit down and my words just pour out onto the page, and I know that they reflect all the raw pain and angst of this ride I am on, and must sometimes be terribly hard to read.  They are however, my reality, and I appreciate you having the courage to read them, and to better understand me, and where I am at any given point in time.

You know the saying “What will you do with your one wild and precious life?”  Well, I can tell you when that life is going to be cut very short, the answer can be quite hard to come by.  It’s something I spend a great deal of time thinking about, as i don’t have any idea how long my visits to the poison pump can keep me alive.  A gent in a bowel cancer group I belong to posted a photo on our forum last night of him checking in for his fourth year of “chemo for life”, and of course I live in hope that that will be me one day, regardless of the statistics being far from in my favour.  The fact is, they probably weren’t in his, either.  None of us know.  So I, as I have mentioned before, intend to live as though I am going to keep on living.  Mentally, for me, that is the key to doing just that.

Back in February I signed up for three subjects at TAFE for year 2 of my diploma.  It was a few weeks before the proposed liver resection, with it’s 50% mortality rate, and at the time, i didn’t know what I intended to do with it…it was simply my nod to “normality”, or as close to it as I could get.  Straight away I did a class presentation with a classmate, so we could get it out of the way before I went into hospital, and we were pleased to scrape in with a high distinction, as back in my old life, they were very important to me and something I always strived for.  When the operation didn’t take place, I continued on with classes the next week, and have enjoyed every minute of the learning, the interaction, the just feeling studious….while studiously avoiding all the assessments that were due at the end of the semester!

I always intended to contribute to the group assessments and would never have let anyone down, but last week I had to hand in my first individual assignment, which required a bit of self motivation!  I realised that mentally, I had always given myself an out….that I could just be doing it for the “experience”, that I didn’t actually have to do the individual assessments, that it didn’t “matter” if I passed, that I was only there to keep my brain from atrophying, and stop me sitting home and contemplating my impending doom.  I looked at the assignment, which was quite dry and far from inspiring, and contemplated the doing of it.  I couldn’t remember how to do anything, even firing up a report template eluded me initially, and the thought of referencing scrambled my chemo brain entirely.  I wrote a few things out longhand, which I never do, the dog was barking, the housework was calling, the weather was shit, and i wanted to go back to bed with a book.  It might sound crazy, but I knew that was the moment that was going to dictate the direction of my life now.  Do I really want to put so much into studying for a diploma that goes beyond the expected timeline of my life?  Surely I could be ticking things off that I want to make sure I do.  Bucket list, or books?  And then I called it.  I threw all my papers into a bag, and found a usb stick, and got into the car and headed to the TAFE library, where i sat there like every other student, with papers and books spread out around me, and I remembered how to do everything and punched out that assignment and hit submit.  Air punching moment…and it wasn’t even LATE!  Then I fired off an email to the place I am proposing to do my second placement, and grabbed the timetable to see what classes I am taking next semester.  I feel BLOODY FANTASTIC about it.  It wouldn’t be for everyone, and I know there are folks who think I am batshit insane, but there is no right or wrong way to do this, and this works for me.

Now, this quite neatly leads into something I really want to address, and that is the power of positive thinking.  I know that a lot of people with cancer read my blog now, and I get lots of comments, all of which I would like to answer and I am sorry if I can’t.  A lot of them ask how I manage to stay so positive, and some lean towards berating themselves for not managing the same thing in their own battles with cancer, sometimes terminal like mine.  A lovely lady contacted me the other day and wanted to know how I remain so cheerful in the face of this, when she doesn’t always manage it, but knows it is “so important”.

Now, this is very important to me.  Just like every person with cancer is an individual, just like the beautiful and unique person they were BEFORE cancer…everyone’s way of coping with their own cancer / chronic illness is individual too.  The LAST thing I would ever want a reader of this blog to do is measure themselves against me and find themselves wanting in some way.  How do I stay positive all the time?  Oh my goodness, I DON’T.  And the thing is, I can understand those who berate themselves for not being able to constantly harness the power of positive thinking, as I remember when i did the same.  It was during my first major terrified meltdown, when the palliative care nurse had to come and calm me and arrange some sedation to get me through the rest of the hellride that was that particular day.  Instead of thinking it was normal, which of course it bloody IS when you are dying to be petrified and sad and broken and really, really fucking angry, I looked at her and implored her to tell me how to get back on track, as all this cortisol and adrenelin and stress hormones running through my body were “not good for me”, and I thought for all the world that they would take me out of this world quicker than I was actually going to go.  The nurse kind of laughed, like she has heard this bullshit before, and assured me that to be positive all the time in my situation would be completely impossible, and that indeed, it was far from healthy not to have, and honour the fear and the rage.

She was totally right.  Because here is the way I see it.  Positive thinking, when it is possible to harness it DOES have power.  It has the power to get me up to face each day, raise my children, do my studies, contribute to society….it helps me LIVE, but it sure as eggs isn’t going to KEEP ME ALIVE.

So, to my other friends with cancer, terminal cancer, chronic illness….all of you who  are reading this that need to know.   This shit is a white knuckle ride through hell, and sometimes it’s one hour, or even one fucking minute at a time.  For me, just the same as for you.  Some days, when I feel the darkness falling, I know there is nothing for it but to take a sedative and go to bed and howl and rock for hours on end.  If that’s what you have to do, that is fine, you do it your way, and know that it’s ok.  And then, when it passes, get up and put one foot in front of that other, and know that you are fucking brilliant to be able to do that.  I’m proud of you.  I’m proud of me.  We’re doing this shit the best way we can, and I promise you I am not doing it any better than you are.

On a related note, I have never plugged anything on the blog before, but if you want to give a card to someone with cancer / chronic illness, consider giving  them one of these empathy cards.  They have been coming through my facebook feed non stop over the last couple of days, and they are absolutely BRILLIANT.

http://info.emilymcdowell.com/empathy-cards-for-serious-illness

It’s normal not to know what to say to someone facing serious illness, or death.  There are no platitudes that are going to make it any better.  Just be there, and if you want to know what to say, considering letting these cards say it for you.  I love every single one of them.

My family love to make me laugh, so when Gaz heard about these pug onesies yesterday while i was at TAFE, he took the children to Best and Less to get me one…..so you can have a giggle too, I give you me, in a pug suit, with my pug!

On the edge of the abyss

Ever since I found out that I can’t be cured, I have always been scared that when I have one of my episodes where i fall into  a really dark place, I won’t be able to crawl out of it.  That mindfulness will fail me, that the fear of the future will flood in so strongly that I won’t be able to find my way back to the present, which is the only safe place for me to live.

I’m falling….losing my hope.   Bad news never really felled me before, but I am struggling to get over yesterday. The chemo ward refused to give me my cancer markers, saying I had to get them from my oncologist, but I looked at them sneakily, and immediately freaked out, seeing that they both numbered in the 200’s, as they had when we did the baseline markers before I started chemo.  They got on the duty doctor to come and see me, and he said that there was no great cause for concern yet, that one marker was slight up, but the other was slightly down.   I know all the rational things.   That I have only had two cycles, that the bloods might take a while to take a hit, that I am having only a half dose of the most heavy hitting drug in the regime because it is getting too toxic for me at full strength.  But I’ve slugged those markers before, kicked them out of the park after each chemo session.  I am discouraged by this, and I know my oncologist will be also.  He has spoken before of the clinical picture starting to turn against me, that  the cancer appears more aggressive.  I have a scan next week, and that may be more telling, one way or another of how we go forward, but I feel my hope of being on maintenance chemo at any stage, on this regime of drugs, slipping away. I know markers can be unreliable, but mine have always been very true to what is going on with my cancer.

There has been an image that has haunted me since I was diagnosed, but after a few weeks I learned not to let it in.  It’s me, in hospice, as I want my family to always remember me alive in our home.  The girls go home for the day, and I know, I WILL know, that it’s the last time that I will ever see them.  I’ll say goodbye and kiss their sweet faces, and watch my children walk out the door forever.  I hope coma, or death comes very quickly after that…..mercy, please.

This horror movie has been rolling around in my head all night.  There has been the occasional intermission, where my mind plays previews of the staggering magnitude of what I, and they, will lose.  I might see one primary school graduation, and I might walk one into high school if I am very lucky, but the other three will look at the proud, and tearful faces of other peoples mums, and there will be an empty space where their mum should have been standing.  And there will ALWAYS be an empty space where their mum should have been standing.  At every sports match, when they kick a goal, or shoot a hoop, they will look for the proud face of their parents, and only find one of them.  When someone breaks their heart for the first time, I won’t be able to hold them and say it’s ok, I’ve been there too, I know you think you’ll never get over this, but you will, I did, and I ended up with my true love.  There will be no “mother of the bride”, there will be no grandmother.

And I think that makes me the saddest of all.  I always hoped that our relationship would be good enough that they would ask me to be in the room with them when they gave birth to their first child.  I wanted to hold my grandchildren in my arms, for sure, but what I wanted most of all was to watch their faces at the very moment that their life was transformed, that they realised that a heart could open wider, and feel more love than they ever thought was possible.  And I wanted the moment that they looked in my eyes, and they knew, they knew that they had done that for me.  Each and every one of them, they showed me true grace, they opened a heart that was closed from years of pain.  The transformative moments in me, with the birth of each child, are moments that I will never forget.  I felt every one of them happen, so profoundly.   The knowing that as I felt each one slip from my body, there was another massive piece of my heart that I would never be able to protect again….they made me RAW.  Naked.  Vulnerable.  Better.  You did that my darlings.

I think of Gaz.  There was a moment at the netball presentation last year when our daughter won the best and fairest.  She had won the year before, and we didn’t perhaps expect her to win again, as she told us that she didn’t think she had.  I was sitting in front watching and Gaz was over to the side having a beer with a mate.  When her name was called two things happened, first she searched in delight for our faces, and then we searched for each others.  That connection that Gaz and I have, we do that ALL THE TIME when it comes to the children, or to anything we delight in really.  We search for each others eyes, so we can share it.  We MADE them.  No other two people could have done it.  I think Gaz will find love again, and as much as the jealousy rips through me like giant shards of glass, I want someone else to love my children.  But there will come a time that Gaz won’t be able to find my face, and even when he is able to find someone elses, that connection won’t be there, as they didn’t make those children together, we did.  We’ll always have that, my beautiful man.  Love someone else, but don’t forget you were mine.  Don’t let them forget that they were mine.

A friend said to me that as soon as I let fear open it’s ugly jaws, it’s going to gobble all my fight.  And I know it to be true, it’s what I have feared all along.  And so I have to find a way out of this again.  I have to remember that I am a long way from out of options, even if this chemo is not working.  I don’t feel sick, I don’t have a lot of pain, I’m tired, but not out of enthusiasm for life.  This is the hardest hit I’ve taken, but I still think I’ve got the strength to rip fears sharp jaws apart, and crawl out again.  I have to.

The price of fame

Bear with me folks, today is going to be a bit of a mixed bag!

First of all, the title of this blog is very tongue in cheek, but I have indeed had my “15 minutes” in the last week or so.  My last blog “How to save your own life” was published as an article in the Fairfax media, and all of a sudden things went quite mad.  It was posted by the Sydney Morning Herald on their facebook page, Fox FM shared it on all their radio station facebook pages, and two of their websites.  Just from the article there were 8,000 shares, and there were more shares via Fox FM. All were linked back to my blog, and this little old collection of my thoughts had thousands (I think it was about 10,000) of extra views. I spent the next few days trying to keep up with the zillions of comments on my article on the various places it was posted, did two radio interviews with 6PR in Perth, and 3MP in Melbourne.  I was interviewed for the WHO magazine, and much to the delight of my children, they sent an absolutely charming photographer to take photos of our family, and I am lead to believe that if you buy this weeks copy of WHO you might find yours truly in it.  It’s been a whirlwind to say the least.

Here is my blog as it appears as an article, though don’t knock yourselves out to read it, as the content is the same as the last blog:

http://www.essentialbaby.com.au/life-style/current-affairs/why-i-will-never-forgive-belle-gibson-20150423-1mrg3x.html

Here is my interview with Brett de Hoedt at 3mp, if you want to hear my thoughts on the Belle Gibson saga:

I can honestly say that it is a complete honour to be heard, to have a voice, to have read so many hundreds, or thousands of comments that have spoken beautifully of my writing, and most poignantly for me, many of them have spoken beautifully about me being a voice for THEM.  It is something I have been told many times, and I always feel a bit embarrassed, as it is just simply something that you don’t usually see in yourself.  I just get inspired, or moved, or angry or sad about something, and I sit down at the computer and all the words fall out of my brain and onto the screen without much thought at all.  But do you know what?  I’ve heard it enough times now that I have to believe it, and I want to say that if I have ever spoken for you, or you have been moved by my words, this is an absolute privilege, and thank you.

The whole thing has been so much fun, but a double edged sword for a number of reasons.  The first being the smack in the kisser that I have to learn to realise my limits now that I am on chemo for life.  It hasn’t treated me too badly so far, but it has treated me to a few bouts of absolute exhaustion, deeper than anything I have experienced before, where every bone and muscle seems to ache…where you blink and feel like you need a crane to lift your eyelids back up again.  It’s all consuming, and absolutely impossible to “push through”…fuck knows I’ve tried.  When I have added that to the excitement of the last week, the fact that my writing has been read by so many people, the adrenelin surge to know I was going to be speaking on the radio (and like everyone, I certainly did go “omg, surely I don’t sound like THAT!”)…the photo shoot, gosh, it was all great fun, but I felt like I had been hit by a truck.  The glamourous life that was Sunday morning, having our family photographed by a magazine photographer turned into an afternoon of shopping for things we needed for the girls, and this shopping trip involved me stopping continuously to rest…like, every few minutes.  Sunday night saw me in bed by about 6pm, so stuffed that I could hardly even form words.  I just felt so angry…is there a price to pay for everything in this bullshit journey?  It would appear so.

The other difficult thing to come out of this is starting to realise my own potential, and wondering how I am going to channel that in the time I have left.  When I was studying community development in 2013, before I got diagnosed with cancer, I also started writing some articles, also published on Fairfax media.  They were well received, and a plan started forming about combining writing with community word.  While I thought it a bit too smug and egotistical back then to hope that I could be a voice for others, that is actually what I really wanted.  I’ve never wanted to do anything self serving with my writing, but I hoped that I could speak of issues that I felt really strongly about – human rights and social justice issues, those who are marginalised, and discriminated against, who generally have a poor image through no fault of their own – refugees and asylum seekers, the homeless, people who work in the sex industry….people who have no voice.  I have always thought that I would write of these things in a hard hitting, pull no punches way, but always with the utmost sensitivity and respect for the people at the heart of what I was writing about.  And the thing is, I want to do this more than ever, and the events of the last week have made me think for the first time that I actually CAN.

But how do I fit all these things in?  Being on borrowed time, and not knowing how much of it there is can be a “blessing” and a curse.  It gives me an impetus, a drive, a mind full of creative ideas and a real desire to see more of my work “out there” before that time is up.  On the other end of the scale, I am losing hours each day to mental and physical fatigue just trying to carry out normal day to day life and there are so bloody many things that are important to me.  Selfishly I still want to chase my career dreams, but of course I want all the precious time with my family I can get.  I still want to be a student, and using my brain, but I am getting very behind with my studies, and very annoyed that I am finding it hard to keep up with everything.  I know soon I am going to be forced to make some choices, about what stays and what gets left behind, and I am finding that very hard to do.  So much for stopping the glorification of busy, eh?  I want to do it all, but the sand is slipping through the hourglass….how quickly all the sand will run through…who knows?  Whatever time I have left, it will never be enough to do all the things I want to do, and at the moment that is making me so sad and angry.

There were a few other things I wanted to write about, but they are a bit emotional, and I’ve hit my limit on that front.  Time to light fires and read books, and cuddle kids, and make hot dinners, and just immerse myself in the love of my family for the next few days, while I hope to get some of my energy back.  Third cycle of chemo is tomorrow, and then in about 10 days, a scan to see if it is working.  I don’t really have any feeling about it one way or another…none of the symptoms related to my cancer have got  any worse…just some transient liver pain, but no more than usual.   The exhaustion I know is due to treatment, though just the business of having cancer takes a lot out of you as well.  Fingers crossed I can stay  on first line chemo for a long time, and the aim is to get me on maintenance after a couple more “hard” cycles.  My oncologist has said to me that he has had patients on maintenance for a couple of years before having to switch to second line chemo, and right now I am hoping like hell that I can be one of them because, well…..so much to do, so little time.

We had plans to go to IKEA last night to get some things we need, and this would have been on the back of a huge day I had, attending an excursion through TAFE which involved a LOT of walking, and despite people seeing me in a bit of distress with pain and breathlessness, I insisted on walking the whole thing the same as everyone else.  I was paying for it pretty badly last night, so we decided to forgo the Swedish megastar and go to our friends for a visit, which turned into dinner and drinks of the alcoholic kind.  Here I am, tired but happy.  Good friends are gold.