The S Word

Last weeks foray back to hospital has left me a little emotionally scattered, and I am desperately trying to find my centre again, instead of a rickety little boat, trying to find a port in a storm.

Since coming home from my hospital stay and moving a week away from when I was supposed to have chemo, I have started to feel a lot better physically, and was pretty psyched about the idea of starting chemo break straight away and not having the planned 6th cycle.  Even though it has only been two cycles since the last scan, I still had a half dose of the big gun chemo on board and was hoping that would lead to a bit more shrinkage.

However, and I know these things happen, it did not.  I am actually completely stable, no shrinkage, no growth, and very importantly, nothing showing up anywhere else.  I was a bit disappointed, as this is the first time I have been stable while on chemo.  The oncologist said it was a win though, to be on the same combination of drugs for so long, and to still achieve stability.  And actually, long term stability IS the goal…..stable, using as few drugs as possible, so as to maintain quality of life as well.  I just achieved it one cycle sooner than I was willing to accept it.

So, in a nutshell, the WA trip is definitely ON.  And a review in about 6 weeks with another scan, to see where we go from there.  However, because some publicity that we are doing for the book is going to prevent us from being able to go for at least two weeks, the oncologist suggested that I might like to do cycle 6 of chemo today, just to back things up.  To feel “safer”, I definitely did want to do it, and he said that if I reduce the tablets to one week, my immune system should be cranking again by the time we go.  Insurance.

Walking into chemo today though, I was just bloody sad.  I hate living my life in increments of a few weeks…like hey….I am guaranteed these few holiday weeks will be good, yippeee…….let’s not think about how I might well be “unstable” when I get back, and we will have to re-assess the whole thing over and over again.   I was talking to the guy who is working with us on this book publicity about the ridiculous polarities of my life…like yesterday, I received in the morning from the publisher the final cover of my book, and I could not have been more delighted, or excited.  4pm the SAME day, I had to see my oncologist for a crucial set of results.  So, get this, right?  During yesterdays consultation, we were trying to work out when I should have my next appointment, allowing for us to get back from holidays, so we made it for 26 August.  Then I basically had to laugh, as I walked out and realised that is the day my book is officially RELEASED.  So, I will wake up on ye old most exciting day of my life, and I will then go to the oncologist and see what the following six week block of my  life might be.  Will I be stable and be able to take another chemo break to enjoy the book publicity and release?  Will things be moving again and I will have to go straight back on chemo and feeling dire through all of this?  What chemo?  Second line, which will probably make my hair fall out?  Take another stab at first line and hope it is still working?

I woke up this morning not in the best of moods, knowing I was heading back to the chemo until after a decision that was only made at nearly 5pm last night.  I didn’t want to go, I’m over it, I didn’t want one more needle in the chest, to answer one more set of 20 questions, have one more set of obs, have my body filled with anti-emetics, 12mg’s of Dex, Avastin which can cause shocking bone pain (I have pretty much escaped this so far), and my mate, the poxy oxy, to make everything twist and cramp, suck the breath out of you in the cold.  Here is another couple of boxes of horse sized tablets for good measure.  I want the insurance of another cycle, but I don’t fucking want this.   Why can’t I choose?  Why is my life taken out of my hands forever?  I have no control at all – not if I want to live.  All the choices I want to make, like FUCK OFF WITH YOUR NEEDLES AND TOXIC CHEMICALS AND LEAVE ME ALONE, for christs sakes let me have my LIFE back…I can’t make them, as then I just wait to die.  It’s all I have, and fuck I hate it today.

So, I give myself today to be shitty about it all.  Chemo wasn’t bad, even though I had no one to come with me today due to the late notice.  A friend did pop in to see me, which was lovely, but the the anti-histamine they gave me as I have started to have allergic reactions to the Poxy must have made me sleepy.  Once I was hooked up, I went to sleep and stayed that way for several hours – when i woke up they were ready to do the flush and I was out of there.  I came home and got into bed with Indi and fell straight back to sleep and there I still am.  A mix of tiredness and depression truth be told.  Just crap, crap, crap that my life could be so exciting at the moment, with the book so close, and the fun fun fun publicity, and keeping on hearing really exciting bits of news from the publishers about the degree of interest already being seen for the book prior to its release, but I have so much uncertainty hanging over my head.  And the fact that I will have to live with uncertainty as my reality forever now makes me feel like an insane rat in a glass cage….no way out.

Let’s end with something cheerful.  Here is EXACTLY what the book will look like.

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It’s so close now. I am so proud of what it has become, and for the fact that I managed to achieve something like this with terminal illness as my constant companion.  It’s a real lesson for me, and I hope to anyone in my position that reads this, just what is possible when you never think it will be again.  Official release day is 26 August.

I don’t want to put anyone off from buying the book of course, but I am mindful that I want you all to know that the book IS this blog.  I have written a few extra pieces that you won’t find here, but for the most part, it  is the chronological story / memoir, straight from these pages.  Just in case any of the people who have pre-ordered want to get their money back.  Sounds a silly thing for me to say, but I want to be completely transparent.

Today, I’m craptacular, but tomorrow, I am BACK.  I’ve got a trip to plan…a few weeks of seeing some of the best scenery in the world, with undoubtably the best people in the world….nothing else, but me, and them.

Perfect.

9 Comments on “The S Word

  1. WA is awesome and I hope you feel better tomorrow.
    Life is so unfair and you have every right to feel shitty about the cards you have to play with.
    The book cover looks fab.

  2. Hi,

    Take these results with positivity, they could have been a lot worse like mine were today when told the Chemo I am on is no longer working and the cancers has grown.

    Any result other than growth is an extremely positive result in my eyes.

    Hope you have your trip to WA and also overseas and they are both amazing.

    Stay possitive!

    Steve

    • Sorry to hear that you were also at the oncologists today Steve and your results were not what you hoped. I can’t be positive all the time, it’s not realistic, but I do my best. Do you have a plan to change chemo’s? PM me on facebook if you like x

  3. 26th…my darling sister’s birthday. Can’t possibly know what you’re going through. BUT…can definitely recommend Cowaramup Taunton Farm big 4 holiday park…cabins, secure sites for camper vans, camp kitchen and bathroom, feeding the farm animals at sunset, camp shop…it’s an amazing part of a faraway universe. Go and be at peace for a bit. Have a cider/wine for me while you watch your girls jumping themselves silly on the jumping pillow. Run your feet through the long grass and revel in all that is good, peaceful and 20 million miles away from the rat race. I’m there with you in spirit xx

  4. I love that in your crazy and sometimes shitty world you still have amazing clarity and can articulate it with such eloquence. I’m so looking forward to your gorgeous book sitting on the shelf in my home library. A book of inspiration that will live on beyond you and I and i will be in the queue to get my copy signed and give you a giant hug, if that’s not too creepy. Enjoy the trip.

  5. As soon as I saw your headline, Pink’s Blow Me (One More Kiss) came to mind : “I’ve had a shit day; you’ve had a shit day”.
    Hopefully tomorrow is a lot nicer.
    I love the colour of the cover of the book. I so want you to have a great trip over west and try and put all the crap out of mind and enjoy the moments.

  6. You’re allowed to feel crap, shit you are not a saint!! So glad you can go on your holiday, don’t miss Albany and Margaret River hey?? It’s so much warmer in WA!! You all deserve a break have fun xx

  7. I hope the coming days are better for you. I also cant bloody wait to buy and read the book – even if I have read it all before!!

    Much love to you and your family xxxxxxx

  8. I know you get bombarded with all sorts of advice from well meaning people, but this is interesting, cannabis reduces tumour size. Medics are advising people not to self medicate, but it does look like it can’t actually do you any harm. Tho you would have to tell your docs – if it works they might think it was the chemo and maybe not try more effective drugs. Good luck to Julia and Steve. Kay

    http://www.sciencedaily.com/releases/2015/07/150709144842.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily+%28Latest+Science+News+–+ScienceDaily%29

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