My message

I am going to keep this short, sweet, and succinct.

After last weeks devastating news, I had a visit to my oncologist (who I really love), I think it’s the first time I have visited him WEEKLY, and I wasn’t bloody impressed. I was going to put the appointment off until next week, when I saw the radiation oncologist, as I didn’t want him to pre-empt things by telling me that he didn’t think the radiation oncologist would treat me now. I wanted to hear it from him.

But, I realised that last week I was so hysterical that I took nothing much in, and I really did need to talk him about a plan going forward. I expected it to be a very depressing meeting, but this time I dressed up, and whacked on some make up, and by god I went in swinging. I told him that I still felt well, I still run my family and my life normally to a large extent, I have exciting prospects on the horizon, and sorry, I wasn’t going to take his third line chemo and wait to die.

He listened politely, but as it happened, he’d had a bit of a think himself and things moved sideways. He said I have always been radical, never taken no for an answer, always chased very extreme treatments (like a liver resection with only a 2 percent chance of saving me, and a 50% chance of killing me springing immediately to mind). He said to me that because I do this, I have to be realistic that a lot of what I am asking has a fairly small chance of coming off. BUT, he totally understands that there is no way that I am going to get to the end of my life and look my children in the eye, knowing I haven’t done every single bloody thing that I could. EVERY SINGLE THING.

Rather than telling me that the rads on my lungs are a pretty slim chance of being done, he pretty much told me the opposite, that he had spoken to the radiation oncologist, said I really really want my lungs done, and he sounds like he has pretty much agreed to do them. Well, fucking BINGO. Then he said about starting back on chemo, as the radiation oncologist would need time to plan the treatments and he would want some drug into me in the meantime. I think he thought I had decided to bugger the chemo off, which I never had, I was just gearing myself up for this dreaded third line business. Then, another sideways move – he thinks it’s too soon to move to third line chemo, and he wants to try another three treatments on the current regime, and then do another scan and see if it has changed. In the event of an unchanged scan, even if markers keep moving, it is safe to stay on the chemo regime I am on and assume it is holding it enough, as while the liver tumours stay this size, I can stay alive, they just can’t start growing out of control. He said that sometimes he has been able to keep people ticking over on chemo that appears to be losing effect for 3 or 6 months if the scans stay stable. HELLO! This 45 year old skin can stay smooth and rash free for a few more months darlings!

Then he really spun me out and told me to go to Thailand. He said in my position, he would travel as much as he could, do everything he could, have every bit of fun. I was going to take an extra week off chemo just to settle down, and he was fine with that, but he said if I am going to Thailand, I must have it next week, to give my immmune system time to recover before I go, so I have less chance of getting an infection.

Things ARE going south somewhere. We know that. But in the absence of knowing where, we can continue with treatment we can realistically hope will give me more time. The best bit of news was when I asked him if it is possible that my liver is still stable and there is some movement we can’t see yet in my lungs that is pushing those numbers up, he said while he couldn’t know, it IS possible. And that is what I have been hanging onto, the only thing that has kept me sane this last week. He said while we are treating two different areas with two different treatments, there is always the potential for responses in different stages. It’s WORTH having a go at these lungs, as if that pushes the numbers down, we will know that is what is happening. It is really the only way the prove it – how could I NOT push for this treatment? What if? I’m realistic that the upward trend in numbers mean my chances of years just got a lot smaller, but they are not by any means GONE.

THIS is my message, if you have cancer, chronic illness where there are treatments available etc, YOU MUST CHASE THESE, YOU MUST BE YOUR OWN ADVOCATE. What if I didn’t basically force them to sit up and take notice of my and my absolute determination not to close my eyes for the last time until I have done every single fucking thing I can to keep living this wonderful life. I dreamed all my life of being this happy, this fulfilled, and I will never give it up easily.

I have heard so many stories of people being told this is the end, take the chemo, go home to die, and do you know what – a lot of them take it on board as gospel, and do just that. DON’T TAKE IT LYING DOWN. Not ever. Not until you have explored every option. There are treatments out there that are medical treatments that are still not quite mainstream, but certainly backed by science and not snake oil, and by their very existence it means THEY HAVE WORKED FOR SOME PEOPLE.

If my oncologist and I were not learning to travel this path of my cancer together, if the universe had given me someone else for an oncologist, and he was just giving up on me, I would have started third line chemo tomorrow and I’d be dead by Christmas. Now maybe I won’t be. THINK ABOUT IT!

Sorry – this WAS going to be short and sweet!

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This is me last night, out for a night out to watch my friends graduate from their diploma – I should have been graduating too. But I was proud to go, happy to still be alive, and look at that person. She is a LONG WAY from dead. That was the other profound thing my oncologist said today. It’s 40% how the patient feels, 40% the scan, 20% the markers. So, if you will pardon my French for the millionth time, the markers can go and get fucked. The other 80% is KILLING IT.

IT ALWAYS SEEMS IMPOSSIBLE, UNTIL IT IS DONE!!!

Love to everyone who needs it, and please hang onto HOPE. If it’s not everything in these trying times, it’s pretty freaking close!

12 Comments on “My message

  1. Glad to hear your head is in a better place. You are right – keep pushing for new and different treatments. Get a 2nd , 3rd , 4th opinion. Who knows what might happen? We all have our low moments (I am also stage iv) but I will never give up. I can’t ! Keep up the amazing blog and all the best for the treatment.

    • You are amazing. And inspiring. But please be aware that for some, the ongoing fight is too much. This doesn’t mean they value their time or life less, or that they don’t want to fight for more time. I am so, SO happy that you have more energy to give but please don’t think that those who don’t are giving up.

      • Oh I do completely understand. One day the time will come when I have nothing left too, I think…..just to make peace with everything before then. This is a way off for me I think, but I completely understand what you are saying, and I hope this didn’t offend you in any way.

  2. In as much as all the statistics dont look great, if you can remain positive and focussed you have a great chance of beating the odds, you have done it before. You can do it again. You have so many things and so much to strive for, keep it up, All looking good. Keep it up. 💜

  3. I love how you keep getting back up Julia. Behind you all the way <3

  4. Julia love, your attitude turn around to being absolutely positive and your never say never determination is just you and who and what you are.Love you for that. Go get ’em, Here for you and Gaz and each of your treasures always..You have been given a very humble,caring, thinking and humane Onco, who is a fantastic blessing.
    Love snd hugs love .Thank you again for sharing. You are a true advocate for love, life and all that is good.
    Xxxxxxx Lyn

  5. Your ‘graduation’ picture says it all and I am sure that nobody will give up on you e v e r.
    Chapeau!
    Christine

  6. Julia, there is more to the universe than we know. If you need them, the Sisters of St Joseph and the tomb of St Mary McKillop in North Sydney, are there for you. xx

  7. This is wonderful news. We are nothing without hope. Keep on sucking the marrow out of life and I pray you have many more months and years to enjoy your big juicy, joyful life. I am a sometime lurker but have learnt so much from your beautiful and positive perspective. Bless you and your precious family and keep shining. You look especially radiant in your photo from the other night!! Keep on showing them and don’t give up!! X

  8. I love your attitude – it would be so ‘easy’ to just listen to Drs and challenge them with the hard deals.
    Thailand sounds great.

  9. Dearest Julia
    So sad to hear of your cancer but very proud of your fight.
    Tracked down your book at Southland on Friday was sick of waiting for those Brighton shops to restock!
    Couldn’t put it down.
    You were always very bright,personality plus and gifted with language.
    Not at all surprised you are a writer with an important message.
    Your 4 girls are beautiful and you do have a good bloke.
    Much love Deidre

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