Hair trigger.

The return to the chemo chair on Tuesday started out well enough. I paid a visit to radiology first, where they accessed my port, ran some dye through it, blood clot gone, everything running nicely. I had a coffee with my friend Bekkii and then we headed to the chemo ward for my infusion. Scored my favourite chemo nurse, barrel of laughs from start to finish, he is, and we were almost festive. I looked at my liver function tests and they are travelling nicely downwards, and I have a good feeling that the SIRT is doing it’s job. All we need is for chemo to hold my lung tumours under a centimetre until my scan in early February, and then if the results are good, we can start working on them. My oncologist says if they go over a cm, the radiation doctors won’t touch them, making the SIRT effectively useless as the lungs will get me. But, chemo is going in, all good.

Right.

Until about 3/4 of the way through, when I felt a lump and pain around my collarbone. Called the nurses…the chemo is pooled up in the vein – it’s blocked. They disconnect and give me the rest of the infusion through my arm, straight into a vein. Missed half my chemo dose, because they couldn’t connect the cock bottle, and of course, that worried me, but I was still hanging in there, I was ok, it’s only one dose, people miss a dose all the time due to various things. Still on track, sort of. There is talk about trying to move the port again to see if we can get it into a more optimal position, and they talk about doing that before my next cycle. I am worried….very worried, as I face having a picc line in my arm for the rest of my life if this doesn’t work.

No swimming with my children for the rest of my life.

No showering without wrapping up my arm within an inch of it’s life JUST TO HAVE A FUCKING SHOWER.

I’ll never have another bath.

Never walk into the ocean and get soaked.

NEVER AGAIN. EVER.

But still, I rally. It’s ok, it will work out.

Today started out well. I fell asleep very early last night, exhausted from chemo and the worry, worry, worry that I wasn’t letting in. Best just sleep through that. I woke up when Gaz went to work at 5, but I went back to sleep and my beautiful babies didn’t wake me until after 11, they just got up and watched the telly and fed themselves.

I’ve been enjoying this beautiful home since we got back from Mitta. I have been motivated, very motivated to finish it. I have other rooms i want to change around, things I want to organise, so I got into that yesterday. So much house proudness coming back, so much I haven’t felt for two years.

I was feeling so good.

So, two days after chemo (the bit of chemo I did get was the one with the most side effects, so I have still been getting them).I tell the delighted kids it’s baking day. They have been dying to get into that new kitchen, and so have I. So, I pile four kids, including a 7 year old that can’t walk into the car, and we all head to the local shopping centre. We have a lovely lunch together at the food court and then load up $120 worth of baking needs (really it would be cheaper to buy the biscuits and the rocky road, but that wouldn’t be as fun). We head to the fruit shop, and then comes the call.

“Hi, it’s such and such from radiology. We’ve got a request for you to come in tomorrow at 1.30 to have that port looked at. Is that ok”.

On the outside I would have looked and sounded normal, but nup, I’d lost it. I wanted to say..

NO! I HAD PLANS WITH MY CHILDREN TOMORROW.

NO! MY HUSBAND JUST WENT BACK TO WORK, I CAN’T ASK HIM TO STAY HOME AGAIN.

NO! DON’T YOU GET I HAVE FOUR FUCKING CHILDREN AT HOME, I CAN’T JUST GET SOMEONE TO LOOK AFTER THEM AT THE DROP OF A HAT.

NO! I WAS JUST THERE TUESDAY. I’M NOT READY FOR THE NEEDLE IN THE CHEST AGAIN. I’M NOT READY FOR THE PUNCTURE HOLE IN THE GROIN SO YOU CAN STICK YOUR FUCKING WIRE UP INTO MY CHEST. I DON’T WANT DAYS OF LIVER PAIN LIKE LAST TIME BECAUSE YOU PUSHED THE WIRE PAST A LIVER TUMOUR. LOOK YOU ARE A REALLY NICE PERSON, BUT I JUST WANT YOU TO FUCK OFF!

I didn’t say any of that of course. I said yes, I will work something out, I will see you tomorrow. And I went home and baked with my children.

I’m hanging on by an absolute thread.

Gazbo came home and we went to meet our friends at our usual Thursday night pub dinner date. I couldn’t pull myself together, not at all, so by the time we got there, I had abused Gaz for no reason, several times, then when our friends asked how I was I told them I wanted to be dead. The sooner I was dead the better. I made quite a scene for the rest of the pub guests, and some of the staff too, who must have been wondering what was wrong with this nut. Needless to say, we ate and ran.

I’ve snapped back into that dissassociative state that felled me a couple of months ago. I don’t know what to do with my mind any more, I have no power over it. I am so tired, I can’t roll with any punches, give me the knock out blow. What do you do when the black looks so attractive. It never has before. Don’t get me wrong, I am not going to do away with myself, I could never do that to those who love me. For so many reasons, I want to live.

But I don’t know how long I can live like this.

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19 Comments on “Hair trigger.

  1. It will pass my love. Ride it out and it will pass. Sucks the big one till it does but it will xx

  2. So sorry it is so tough. But do try and hang in there. You have been through lots of tough times and survived. Take care of yourself and have faith in yourself. Love to you all😘

  3. You write in a way that I feel like I’m inside your heart, feeling everything you do. The ache, the fear, the outrage, the unfairness and everything else that goes with what you’re going through. Just makes me admire you even more. Hugs. x

  4. I cant believe what some people get thrown at them Julia and you have had enough by the sound of it to last three life times. Sometimes life just gets in the way of life, all you want to do is enjoy your new kitchen with your fairies and they probably understand more than you realize, sometimes you just cant do it, it’s amazing how they got their breaky and just left you to rest and sleep. AMAZING YOUNG GIRLS JUST LIKE MUM, I await your next post and pray you stay well and the news will be better than ever take care brave lady, cheers Veronica xxx

  5. PS l still haven’t found your book, but l will one day soon and cant wait to read it…

  6. So much strength to you,Julia as you ride these tough waves of emotion. May we all show as much courage in life’s inevitable adversities.

    I can’t imagine it – even though I had a port for 2yrs and I know about PICC lines.
    Are they any interventional radiologist doing the Port ?

  7. I can’t offer much, Jules, but all my love and light are yours. Hoping for better days very very soon xx

  8. You will live. You will put one foot in front of the other, and fake it until you make it. You’ve done it before, for your amazing family, and you will do it again.

    But until you are ready to do it – thank you for sharing and being honest. Take our cyber strength, the love and courage of all of us – those who know you and those who don’t. Know that we are there for you, to support you on your way. You have given us so much of you – try to find a way for the thoughts, prayers and support of strangers to prop you up until you can stand again.

  9. bloody hell, that’s shit, I’m sorry. is there anything I can do, want photos or not in the mood ? can I take you to chemo ? or babysit ? my boys are heading off on choir camp and I am free for the next 5 days, text if there’s any thing I can do…. xo

  10. Oh Hun! Just sending you love and prayers to you and your beautiful family xoxoxo

  11. Sending love & strength to help you get through the tough times. Your tenacity, courage & love for your family is inspiring. Hang in there gorgeous girl x

  12. Beautiful lady… I am sending every inch of love, light and strength your way. From me to you X

  13. You need an outlet to get rid of the spurts of pain & anger. Boxing bag, drum kit, a big sheet of paper you can throw water paints at, paper you can tear up. Anything to get rid of the Adrenalin. Paint a wall in your bedroom with black chalk board paint & using chalk, write swear words on it or draw the cancer & tell it where to go! We don’t all know you, but we’re thinking of you & we’re on your side & barracking (praying) loudly :)

  14. You and yours are just so amazing. How you keep it together at all is an achievement.
    You are allowed to be pissed off, to doubt, to rage. Do not keep it in. Share it with us, we can take the load.
    You are so loved. Your true friends will hang in there with you.
    Life is not fair, cancer sucks and can get fucked.
    Enjoy your kids. Gaz gets it.
    I hope they have a happy solution for you. Take care of you.
    XXXXXXX

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