Meltdown City

So, yesterday it was the much anticipated return to the chemo chair.  Second line chemo, last real line of defence, so I had to have hope that this would work as well for me as it does for some other people and get me some good shrinkage, and stability for a while, so I could just, you know….get on with life.  Took this photo of myself before leaving:

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Last chemo was three week cycles, a few hours of infusion, 2 weeks of take home tablets, and a week off before I started it all again.  The side effects were pretty ordinary, but I could manage them and lived a reasonably normal life.  This regime however requires a 90 minute infusion, and then to come home for two days with a chemo bottle attached to a tube,  attached to a needle jammed into a plastic disk, jammed into your chest.  The bottle then infuses the chemo for the next 48 hours and you return to your favourite chemo unit to have it disconnected on day 3.  I can honestly say I had already built up coming home with the bottle as being a pretty bad thing.  If nothing else it is a constant reminder that you are sick, like every couple of fucking minutes, when you try to move somewhere and have to pick up the bottle and cart it with you.  I have REAL issues with anything coming out of my body too, as I am sure a lot of people do, but it is nearly phobic with me.  Years ago when I had a bone infection they inserted a picc line so that I could have antibiotics through a take home pump.  I coped very, very badly with this, and was actually relieved when it caused a near fatal blood clot and had to come out.  As soon as I come out of surgeries I start whinging straight away for catheters and drains and cannula’s to be removed from me…like, almost the minute I am awake the whinging starts.  So yes, I had built up the take home chemo bottle and my reaction did not disappoint.

It all started out ok.  I had talked myself through the way it was all going to be.  I’m going to get on with living, remember?  A new book to start, many ideas for shorter article pieces.  Plans for maybe a TED talk and some public speaking around my book and the concepts contained within.  Don’t you worry, I was just going to strap that bottle to myself, make those two days at home reading and writing and research days…work, live play for the other 9 days of the cycle, rinse repeat.

My chemo sidekick Anthony swung by to get me and we carried an almost festive mood into the chemo unit.  When I whinge he tells me things like if they are still pumping drugs into me I’m not yet dead so I should just suck it up princess, and he entertains the staff and other patients with highly inappropriate jokes.  I was glad he was there, and there was lots of chats with other patients, most of whom recognised me from 60 mins and wanted to have a chat about it all.  Things went slightly downhill when I snavelled my blood test results from the nurse before Anthony could snatch them from my paws (as he had witnessed the resulting meltdown when I got hold of such tests before and read them).  CEA numbers up quite a bit…liver numbers up just a little bit, but enough for my oncologist to reduce my dose to 75% and I took that very badly.  How are we going to hit these bastards hard with a reduced dose from the outset.  I start to smell the scent of people giving up on me, no one believing i can be one of those five year survivors anymore.  If they don’t believe it, how can I?

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The infusion finished, and the take home bottle got connected.  I tried to make a joke of it at first, commenting to the chemo ward at large about it’s phallic shape and joking about carrying it around in my cleavage.  When I got home though, my mood went downhill rapidly.  I was sick of dragging the thing around all over the place, I couldn’t lie still comfortably, the weight of my boobs kept pushing all the cords on my chest up into my neck, and then I would doze for a few minutes and wake up with all this sweat pouring out of my neck underneath the tubes.  No more than a few hours sleep in a few days due to steroids and I had a big dose of steroids yesterday morning through the drip, so I was a combination of dog tired, and wired and very very fucking pissed off.

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As so, I lost it.  Some time just after midnight I jumped out of bed and ran down the hall in a screaming rage.  I punched walls and kicked them, screamed at an alarmed Gaz that I just wanted to die, and I wouldn’t be doing this treatment, there is no point when it is only a reduced dose.  I was getting palliative care in to start writing the letters to my girls and start making memory boxes, I was telling my fucking oncologist that he could stick his reduced dose up his arse, I wasn’t having this bottle even one more fucking time.  (This is not a personal attack on my oncologist by the way, he always has my best interests at heart and he would have reduced the dose out of concern for finding balance, it’s just that everyone was in the line of fire last night)  There was no point in anything anymore.  I told him as soon as I had set the girls up with their memories that I was going to commit suicide, and I’d do it right there and then if I thought we had a knife in the house sharp enough to deal the situation right then and there.  Don’t think it’s the best night Gaz has ever put in…spare a thought for him going to work today on no sleep, won’t you?

Finally we went searching for the blue drops from palliative care.  I couldn’t find them and that made me fly into even worse a rage.  I finally located them in my handbag and took more than I should have, and laid down next to Gaz, and instantly started to calm a bit.  I watched a bit of telly and finally drifted off.

Today is a new day.  It’s not a good day, it leaves a hangover of grief and fear and the feeling that things are winding down.  I can’t fight from that place, if I don’t believe, neither will anyone else.  I am hoping I can convince the oncologist to give me a full dose next time.  I am hoping I can get used to this bottle so three days out of every two weeks are not a write off from now on.  I hope that I can find my will to live again tomorrow….maybe not today, but tomorrow.

I’ve rallied a million times already.  I can do it again…..right?

If you are one of my fellow cancer fighting warriors, and you feel like this today, my heart and love goes out to you.  We’ll be okay tomorrow…let’s just give ourselves today, ok? xx

23 Comments on “Meltdown City

  1. OMG Jules
    I read this with tears streaming down my face. I am so sorry you are going through this shitfight. I have I no words of wisdom and I know nothing anyone can say or do, can take away your pain or heartbreak. But I couldn’t just read this post & not leave you a comment. 😰 So I’m just going to sit here quietly for a few minutes, close my eyes & open my heart, to send you lots of love, strength & prayers to get through the day. Don’t worry about tomorrow – just get through today. One minute at a time.
    One breath at a time. You got this girl – and you got a whole world of strangers that are supporting you and loving you and hurting for ALL of you. Every. Single. Day.
    xxxx

  2. Take a breath think of your babies and realize it is all worth it. No matter how tough our journeys are we must think of the ones on this journey with us and how they will have plenty of time to mourn for us when the time comes. You have done so well. This is just another little hurdle, you can jump it! I am having my own 90 min infusion now which has taken 3 hours so far lol. I will take home baby Baxter for 46 hours and then fast forward two weeks and start again. I am with you on this journey kia kaha, stay strong.

  3. Even when you’re losing your shit, I want to read your posts and blogs because you’re so honest and you explain it all and, though I don’t have cancer, I can see how you could feel like 75% feels like not good enough and a slight shrug of the shoulders. I wish I could give you a big fat hug and a tshirt that says “Fuck Cancer and Fuck Giving Up”. Because you are worth fighting for, and you are extraordinary, and fuck it, why shouldn’t you be the 5 year one? Team Jules is still hopeful, even if we are dancing around with budgie smugglers on our heads this morning. Relax, and know that your bod will adjust, the roid rage will settle down, and you’ll get back to living again. Xxx

  4. I hope today you all find some light, peace & hope again. And some sleep: tiredness lets in demons that we might ordinarily be able to keep at bay. Maybe these ‘time in a bottle’ days are moment to moment days: in this moment I am alive… in this moment I am not going to quit… in this moment I am going to keep going… in this moment I can do this… in this moment, I’m going to lose my shit! That’s cancer. A long, dark, night of the soul is never easy, but while you have the courage to write about it & put it out there & keep it real you are still in the game. Love to you all x

  5. I felt all the feels Jules, I’ve looked for that sharp knife myself and maybe there’s a reason I was a tightarse and had never coughed up to get ours sharpened. It was a moment Hun, a full on moment that distracted you from where you need to be. A lapse in focus because you are freakin human and tubes and bottles and shitty drugs bloody suck, you totally have what it takes…totally!! The roids will settle and you will be doing TED talks soon enough. Now excuse me because I think there’s something in my eye xx

  6. Dear Jules, so glad you are human and can look glam and confident one week and become a screaming dervish the next!! Get it out, let it go and I don’t believe anyone is giving up on you…not even yourself. Be kind to yourself today honey xxx

  7. Yep I am hearing you. I totally understand the bottle challenge. I am on the same treatment, 4 treatments in. It’s hard but you do get used to the bottle. You can do this! We are still alive and still have lots to look forward to in life with our loved ones. Every day counts, one day at a time! There are a few of us out here walking this journey right beside you! I pray you feel better today and can find that place of peace inside you. Live you my friend, barracking for you xxxx

  8. You have every right to be thoroughly pissed off and I really feel for you. Suffering through it must be just the pits, but my heart also weeps for Gaz and your girls.
    I have been lucky to not have been physically touched by cancer, but nearly all of my dad’s siblings were taken out by it. But the hardest was my cousin who was only in her mid 30s when breast cancer took her from her partner, kids and the rest of us. I think what she went through was why her father, almost 20 years later, decided to not to accept any treatment for his lung cancer.
    I’m sure the way you feel is the frustration of just about every cancer patient who is buying time. It is so not fucking fair.
    It’s a shame our tears from out here in cyberland are of no help.

  9. Your blog makes me feel like I’ve known you for years, when in fact we have never met but I got hooked on your blog through my gorgeous friend Megan. Cancer took my Mum – her favourite saying right to the end was “if you don’t smile life sux!” Keep on kicking it’s arse Jules – you WILL be a five year survivor! Dee xoxo

  10. Jules, let it all out, have the crap day – its all OK to do that – we are all here in the wings cheering you on – we ALL believe in you and we ALL will fight alongside of you so remember the huge Team Jules is behind you all the way. Rest up, watch crap TV, snuggle into Hope and tomorrow WILL be better, nothing ever stays the same x

  11. Hey mate, I know tomorrow or even the next day, you will be back , give yourself these days if you need them, sending a massive hug to you from Jode and I, Team Jules in with you all the way…we will be in Melbourne for 5 days from Friday, will call you over weekend to see how you are.

  12. Jules, dear sweet Jules.
    Searingly honest, as always.
    Evil Irene can give you those sweats and I blame her for surging moods too. But she fades. Really she does.
    I look forward to seeing your TED talk.
    xxxxx

  13. Jules, my response could be just a waffle of shit, so take it for what you will..

    You ask the question about how are you meant to belive you could be one of the ones to make it to five years if your doctors don’t belive it.
    The answer, to me anyway is glaringly obvious! You are literally weeks away from making it to their “best case ” scenario, you will fucking smash that out of the water because Of YOU! Yes, medication, doctors, friends, family, life and complete strangers have helped and played a huge part in it but it comes down to you.

    Cancer is a fuckng bitch and there’s no rhym or reason as to how it unfolds. There are heaps of medical things that can prolong it, destroy parts of it and give you more time but the really shitty thing is so much of it is pure luck of the draw.

    The fact is with all of this you have still evolved, you have advanced far beyond what I dare say even you had imagined for yourself 10 years or 5 years ago and that’s due to your determination, your drive and your ability to think fast on your feet and adapt!
    You don’t NEED anyone to belive in you Jules, you have steered your course from day dot of this cancer and what it has given you is the remarkable truth that backing yourself is the most inportaint thing!

    And if all logic fails in persuading you of that…. well that FIVE in fivefairiesandafella has to stand for more then five women, let it be YOUR bench mark, let five be your lucky number in more ways then one xox

  14. Thank you for your brutal honesty and your bravery and for sharing this with us, don’t be afraid to have the meltdowns and have the bad days and here is to tomorrow which will be a better day xx

  15. I hear you.
    I heart you.
    Step away from the knives.
    I cannot imagine how you feel or cope on days like these.
    I wish you didn’t have to go through them but least ways when you , thank you for being honest . Raw deal , raw days and I tomorrow things go up.

  16. *wipes tears* (and now so should you) Now, missy – get up, get on and rally. You can do this, I can hear it in your words – you know you can. Yesterday was just harder as you’ve been on vacation, and it’s always harder to get on with life after a vacation. Love to you and yours from Croatia (where I live) and i look forward to your next blog xx

  17. Oh Jules! Massive hugs to you, my heart is breaking for you right now. Honestly I can’t even deal with a drip bung in my hand after multiple bouts of HG so I cant even begin to imagine what you are dealing with. Seriously FUCK stupid fucking cancer. Don’t let it take the time you have left, fight it all you can, yell, scream, punch and kick but know that tomorrow is coming and will be a better day xxx

  18. Beautiful Lady, I do spare a thought for Gaz everyday. I work where he works. I don’t see him often but I have always known about you, his dear wife. I watched 60 minutes on the advice of Mrs Woog and bugger me, there is Gaz. Your meltdown is something to be proud of. I hear the roar of a woman. Stand strong, fight hard. Get this cancer in a headlock, drag it down the field and kick the fucker out of the stadium. Go Jules Go.

  19. I read this and my first thought was “I would have had this kind of tantrum long ago”. You are a fighter and truly amazing and what you have achieved gives you the right to have a throw down if you want to. Hell my 4 year old has a temper fit of we cut his sandwich into squares instead of triangles.

    I hope today you are feeling more positive because you are right if you don’t believe your body won’t either.

    Thinking of you and sending you lots of love xx

  20. i just finished your brilliantbook Jules. Thank you for your breathtaking honesty & sharing your talent with us all. I’ve now gone to your blog & read this post. What a roller coaster you are on. You are human. So human. That’s why we all relate – sick or well, married or single, mothers or not. As humans we all have times when we feel we can no longer fight the fight. And…then there is tomorrow. Everything is a phase & none of these feelings – the good, the bad, the pain, the laughs and the tears can last forever. You will move into your next phase, as you always do. This too shall pass. Keep writing – THAT will last forever. Thanks for your spirit.

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