Limboland

I know that a lot of people are worried about me at the moment and the lack of posts, so I thought I would give a bit of an update.

I am OK. Sort of.

Since finishing radiation, I have had a big increase in symptoms and pain in my liver. Liver pain, shoulder pain (from liver), and nausea. I have spoken to my oncologist and of course we know now that my big hope that the progression indicated by my cancer markers a couple of months ago was not coming from my liver, now has to be given up. My liver is definitely progressing, and all that remains is a scan in a week and a half to see how much. If my liver function is still up to it, I will start a new regime the next day, he has already booked me in. Cetuximab, which is a tumour targeting treatment and can be very successful in some people. He is giving it to me with Irinotecan, which is a chemo that I have now “failed”, but Cetux works better with chemo, so he is hoping they will kick each other off. It means a weekly infusion at the start, don’t ask me how I will show up at that fucking chemo ward once a WEEK, but it must be done. This treatment won’t include the cock bottle though – small mercies.

To be honest, I could have posted a blog many times, pouring out what is in my heart and mind at the moment. But, as we are getting to the pointy end of things (This being my last real treatment available to me outside of trials – what if it doesn’t work?), I really have to spare my nearest and dearest from reading what is going through my mind at the moment, the “plans” I have started to think about. I know it is usual for me to throw it all out there, but this is not the time.

Despite all this, I am not in a blind panic. The emerging symptoms that don’t go away have been very confronting – nothing like constant pain and nausea to remind you constantly of what you are up against. However, I am controlling it with steroids and some opiates if need be, and things are still pretty normal at home. Thanks to a friend cooking for us, and my own efforts (the tiredness from radiation is easing a lot) we have eaten at home all week – no going out or takeaway. That is a bit of a big call around here for the last couple of years! I am currently packing for a weekend away in Bendigo, where I am meeting up with quite a few friends, including some I met through this blog :) I am looking forward to the family time, and yes, while I hate the connotations…..”making memories”. I am trying very hard to remain positive that the next treatment will work, and for a good while and offer me some breathing space and time for lots more fun.

Back to packing, more from me soon. Just wanted to reassure concerned blog readers that I am still alive – and kicking!

14 Comments on “Limboland

  1. Julia , I hope you have a great weekend.
    May we all show as much courage as you do in life’s ‘incredibly difficult’ adversities and also deep gratitude for the things we ‘get to’ do.
    Keep kicking.

  2. I have done weekly chemo. It sucks but you get into a routine. I am also on a combined treatment now having had progression on one element of it previously.
    The places your mind is going are places all of us stage 4 peeps need to go and they aren’t thoughts that you blithely bounce around. They are hard and, for you, harder now. I am thinking of you and praying for you. xxx

  3. I’m on weekly chemo for the next 12 weeks. 4 hours of drip, drip, drip. Is sooo boring. I had read that if you fast the day of chemo the chemo might be more effective because it will be busy processing the chemo and not food. Anyway I asked my oncologist what he thought of that idea and he was very positive and encouraged me to give it a go. Then I realised I need to have food with the anti-histamines they give you but that’s ok, just a little bit of food should be ok….then, because I was so bored I ate the biscuits offered at morning tea time and the sandwiches at lunchtime. I really wasn’t hungry either, just bored. Next week I will plan ahead. I’ll bring in a salad at lunch to pick at and turn my nose up at the biscuits….maybe, I do like their biscuits. I did skip breakfast and dinner and today I’m not feeling nearly as squeamish as the last lot of chemo. Maybe this plan is working or maybe I’m just tolerating the chemo a bit better, I can’t rightly say but I figure it can’t hurt to trial it for a bit longer. I think this is the first time I’ve left a comment and look how much I’ve waffled on. I’ve been a fan ever since that article you did on Belle Gibson.
    I love hearing about your beautiful fairies and your fella.
    Hope the pain issues settle quickly. Cancer sucks enough without having to put up with that crap. Love xxxx

    • I have read about the fasting thing and it sounds really interested. I might well give it a go, it makes sense, and can’t really do any harm xx

  4. Dearest cousin of mine. Have a fat time with your family. Sending much love from the N. T. Xxx

  5. Hi Julia. I’ve been ‘stalking’ you for a while now and even though I don’t know you I was getting worried when you hadn’t posted for a while so thanks for taking the time to give an update. I’m a cancer researcher and reading your blog helps to remind me why I do what I do! Your insights are invaluable.

  6. Good to hear you are kind of doing Ok Jula.Enjoy the weekend in Bendigo with your beautiful family . love and prayers continually surround you each one. ,and all . Xxxxxx

  7. Enjoy your weekend Julia
    You are amazing and make sure you rug up xxx

  8. You are an inspiration Julia and I thank you for sharing your stores 😃
    I’m an in tears a lot as the compassion I feel is quite overwhelming at times.
    I pray that this treatment works and this blog is a bump in the road and a story of how you kicked cancers butt!!! Love and hugs xxx

  9. Thanks for keeping us in touch with how things are going for you. I had guessed that it was tough for you at the moment. I am sorry that you are having to go through all this stuff – seems so unfair. Go on you for pushing through yet again. I hope that you weekend brings a time of refreshment for you, and you have some time to chill-out whilst you are away. Be kind to yourself. And don’t give up. We are all on your side! Deb Xxx

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