Finding the ya’s in my blah’s.

I forgot again this morning.

I stirred awake to the sound of the children turning the cartoons on in the loungeroom on a regular Saturday morning, a comforting sound that wakes parents to the promise of a new weekend right around the country. I smiled, snuggled into Gaz’s arms, and started thinking about what I was going to do with my day. Then I rolled into my sensitive liver, and I was back to the reality of what my life is now, a sea of fear and worry and wondering. It doesn’t happen very often now, that I don’t wake up with it, the knowledge already heavy. I don’t know whether to be grateful for those few seconds of innocence, or resentful for having to recover from them.

I haven’t recovered from the tearfest of Tuesday. Going into scan week next week, with the knowledge that my lung tumours did not shrink on this new regime, I have bits and pieces of pain, and my liver numbers are rising in the wrong direction….I am trying to find my usual optimism, my mojo, trying to tell myself I have been wrong before and might be wrong again….to be honest, no amount of logic gets you through times like this. I guess that by Wednesday I will know..whether we stick with the current regime (I hope so), or we have to find a new plan. There is another drug, which can be added to this regime as long as it is working at all, or used as a “third line” treatment (after which time there will be nothing left for me but clinical trials), which might hold things for a while, but not likely very long. And the kicker? This drug has major side effects, the most significant being a red, angry acne like rash, often found on the face. I think I am too vain for this shit nowadays you know. But…better red than dead?

So, let me tell you about the good things that happened this week! I am so sick of having nothing good to say, nothing happy! And there have been some truly great things about this week.

I took Tana to the camp bus to go on her very first school camp on Wednesday, the day after the big watershed. I felt sick, the anti nauseants don’t seem to be working as well this time, but I at least got to drop her and see her off, and if that was all I got done that day, it was enough. I came back to find two beautiful members of Team Jules cleaning my kitchen, and folding about 87 loads of washing. They listened to me talk about my feelings about the way things seem to be going so terribly south nowadays, and they listened to me cry. I’m lucky to be so very loved and supported, both physically and emotionally through this hell.

Thursday, Gaz had the day off to take Georgia to a long awaited orthopaedic appointment. We were very scared that they were going to say she needed major surgery on her hips, and in all seriousness, we didn’t even know how we could undertake such a thing without going crazy….not with my health…she would be in hospital for weeks, and someone would have to be there with her – just not doable without someone in the family going through a mental breakdown. Thank goodness, they decided to splint her wee legs and re-assess things in a year, but it is unlikely major surgery will be needed. Phew.

Then Gaz took me into town to meet with the director of an agency that books authors for public speaking. I went and saw Dev speak in front of a rapt crowd of 100 or so at Frankston library just over a year ago, before there was any talk of me being an author myself. It is another one of those moments that stick out in my mind, as I remember thinking how amazing it would be that all those people thought you were interesting enough that they wanted to come out at night in winter to listen to you speak. Fast forward to a couple of months ago, as my book was coming out, Dev put me onto the very agency that books her for these events, and to cut a long story short, after meeting with the director, and explaining to her that I cannot in any way shape or form guarantee my health, though I was very keen to do the speaking, she is adding me to her books, and I too can be a speaker like Dev. What? That shit is CRAZY. How bloody exciting! I should be uploaded to the website in the coming week, and as soon as I am, I will furnish you all with a link, in case you know someone who wants to book a speaker and thinks that I will fit the bill! Crazy life!

I only ever watched one season of Big Brother, right back when the last two were Chrissie Swan and Reggie. I, along with a lot of other people, loved Chrissie from the start. You just wanted her to be your best mate, so warm, so natural, such a fantastic role model for being real and accepting yourself for who you are. Even my kids have taken to her, we used to love listening to Chrissie and Jane in the mornings, and we all got caught up in the emotion of the Spelling Bee show :) Anyway, when I first met my publicist Kelly a few months ago, she mentioned that Chrissie’s book was also published by them. I said right away now, if you do NOTHING else, you must hook me up with Chrissie! She said she was sure our paths would cross one day! So! What do you know, this week I also got a GORGEOUS message from Chrissie about my book and how she thought I was great. Now, I am not a particularly star struck person, although there are certain people in the public eye I admire, I do believe they are just people and don’t place people on a pedestal. Including Chrissie, I am sure she would hate to find herself on a pedestal, but it was so lovely to hear from her, and got me once again thinking gosh, is this my life now? Public speaking and friendly messages from someone you really admire. Cool, huh.

So, that was Thursday, a good day, and one that I thought might actually turn my week around. After meeting with the booking agency, I popped into my publisher and went out and had coffee with my editor, and met a new publicist who is helping me ramp up publicity again in the lead up to Christmas sales of my book. Then we came home, went to the chemo ward to get me disconnected from the cock bottle, and then picked up the kids and went out for dinner with friends. Once we got home, I was exhausted, so went to bed, and fell asleep for the night at 8.30pm. What do you know, this made me absolutely DROP MY BUNDLE. When I woke up the next morning, I thought about how many of my friends that I have lost to this dreadful disease, and how they all slept a lot when they were reaching the end of their lives. Clearly if I was going to sleep at 8.30pm, the end was nigh! I spent the next couple of hours staring at the ceiling in fear. I had to ring a friend to come and take my kids to school and cancel lunch with my dear friends who I know would have lifted my spirits, as I was literally paralysed by the magnitude of all of this. I burrowed back into bed until the doorbell rang late morning, and as luck would have it, it was my palliative care nurse, Michelle, who has been visiting me for over a year. I forgot we had an appointment, but it was timely.

I sat there and howled for the next few minutes about this going to sleep early and how it must be the end. She probably had to try not to laugh as she said “so, you got up yesterday, got kids to school, went to the hospital for an appointment for your daughter, went into the inner burbs, met with a booking agent, had coffee with your editor, came home, got disconnected from the pump, went out to dinner with friends, and you did this TWO DAYS AFTER HAVING CHEMO, WITH YOUR PUMP STILL ATTACHED, and you think there is something strange about you needing to go to sleep at 8.30pm? I would think it was stranger if you did not!” I know she is right, and we have worked out that there in lies the problem of me not being able to forgive myself for not being able to push through all this misery and find the good in life. Michelle said that she has never in all her years of being a palliative care nurse seen anyone function on my level, and do what I do. And this is not because i do cancer any better than anyone else, not by a long shot, it is just simply my driven nature, and i do it because I CAN. But when I CAN’T, then we have these horrific lows and I start hating myself for not being able to rise above the fear.

Anyway, onwards and upwards, lots of things to look forward to, and still the hope of some decent news, or some decent plan at least next week. Until then, just home and hearth, family and kids and cooking and colouring, and all the grounding things I turn to when things get tough.

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Til’ next time xxx

4 Comments on “Finding the ya’s in my blah’s.

  1. Hi Julia, just wanted to say how amazing I think you are, your positive attitude, your driving force, your love for your family & friends which is so very obvious, and just your ability to see the good and the positive in life when sometimes life is just NOT FAIR!! I loved reading your book, and I love reading your blogs! One minute you have me laughing, the next I’m in tears lol. Would really love to hear you speak! I live in Adelaide but might just have to think about a trip interstate! Good luck with everything ❤️ ..Rachel

  2. the rash means its working, if you go on that drug you want the rash, you can live with acne if it means more time

  3. You are amazing.
    Now here’s a threesome (in the politest of senses) : you, Dev & Chrissy Swan. Cool, eh? Now that’s a lunch worth organising.

  4. Listen to you, what you did in that day, most people would be in bed at 6:30pm. We are on a road trip in WA & drove from Albany (yes I know the Royals were there, but some times you have keep moving on) to Busselton & I was in bed 8:30pm, all I did was sit in the car or stop for coffee (love my coffee). Yes & looked
    at the ocean at Margaret River, beautiful.🤓

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