Hope springs eternal

When I left the oncologists office two weeks ago, he had told me that he was going to speak to the liver surgeon about the possibility of me having radiation beads placed next to the tumours in my liver – a pretty groundbreaking procedure that can do absolutely nothing useful at all, but can also hold liver tumours steady for months, or in some cases years. If I could have this procedure, they would look at targeted radiation on my lungs. As much as I loved hearing this, because, by golly it was FIGHTING talk, I never really allowed myself a minute to think that I could actually have it. In the 13 month quest to get me to a potentially curative liver resection, the anatomy of my liver was altered several times – veins and arteries were blocked permanently, in the hope of shocking the “healthy” part of my liver to grow bigger, procedures which were unsuccessful. These radioactive spheres need to be delivered to the area next to the tumours via these veins and arteries, and because mine are largely blocked, it is a procedure which my liver surgeon told me back in February, when the resection did not go ahead, would never be open to me. As he said at the time “we burned a lot of bridges to get to the resection”. Sadly, I realised we had, but I knew that at the time I wasn’t the slightest bit interested in life extending procedures – I wanted the cure, the whole cure, and nothing but the cure. The surgeon said to me at the time “if I had offered you the chance to have SIRT down the track, but it meant forgoing the chance of the resection you would have said no way”. And I would have. I had to try, and regrets? Well now maybe I’ve got a few, but worrying about it is a pointless exercise. I didn’t have a crystal ball, and I wanted to live for a potentially long time.

For all the world I expected to walk into my oncologists office this afternoon for our regular appointment, and have him tell me that he had spoken to the surgeon, but they ultimately decided it was a waste of time. But, because my life is an absolute fucking circus, this of course did not happen. They DID refer me to the SIRT specialist and he rang me yesterday to tell me that he had me booked into hospital next week for the usual SIRT workup, including a liver angiogram to see where we had blood flow, and where we did not. I talked to him about the blocked up veins and he did admit to being “very concerned about that”, but said that there was some possibility that the arterial flow had started running again, and it was worth having a look, and assured me that if there was any way of getting these beads into where they need to be, he would give me the treatment. He asked me what I knew about it, and I said that I knew quite a few people on my online bowel cancer group that had had it, some with no success at all, and some with a lot. Then he said these words. These words…..”I have terminal patients I am still looking after three or four years after this procedure”.

For 13 months, I lived on the dream of the liver resection. Even when blow after blow came, my liver didn’t grow, I faced a 50% chance of dying, hope was still camped out here full time. And on the 27th of February, when I reached down in the recovery ward and felt my stomach, and realised I only had small adhesives covering laproscopic holes, and knew I had not had the resection, I had to face the fact that everything that had kept me alive and positive and hopeful was gone. Yes, I re-framed again, learned to go forward, but I was changed forever that day, and there is no use saying otherwise.

When it was confirmed at my next oncologist appointment that I would never have any “active” treatment again, only palliative chemotherapy to extend my life as long as possible, I can’t say I didn’t feel that this had the air of everyone giving up on me. That changes you, too. I knew my oncologist would always do his best, to find more drug regimes, clinical trials, anything that would eke out a few more months. But clearly, my chance to chase down years was all but gone.

So, next week I go into hospital, meet the surgeon, have these tests, and I will know. I’ll be honest and say I don’t know how the fuck I can do this again. The waiting and the hoping don’t feel unlike the liver resection, and waiting for the surgeon to utter the fateful words, will not be unlike that day that I reached down and felt those bandages.

However, I know there has to be a reason why my oncologist, who always wants to carefully weigh what he puts my body through with whether there will ultimately be any benefit to me, decided to refer me for this treatment. Due to my lung mets, and not being out of chemotherapy options, I am not eligible for this treatment under medicare, the protocols for funding it are very strict, and if I can access it, I will have to pay a not inconsiderable sum for it. Another reason I know my oncologist would not suggest it unless he thought there really might be some big benefits to it. And as for the specialist, who I liked very much after speaking to him yesterday, I realise that if he thought there was no point to this testing he simply wouldn’t carry it out. They all want their patients to live as long as possible, but things are pretty black and white when it comes to what they will attempt and what they won’t.

I’ve struggled a lot more mentally recently, and while I still enjoy life, and am still motivated by what I might be able to achieve while I am still here, I have had to find things to be excited about, to “keep me going” so to speak. Currently, these things involve doing some writing again, hoping to find the burst of energy I need to start a new book….Christmas at Mitta, and my new kitchen and living room renovation, which starts next week.

I’m ok, but realistically I’ve never been the same since February 27. I only imagine a single Christmas in that kitchen, and as for the book, I figure I better get started soon, or there will be no point at all. I don’t consider myself, or any of this “negative”..I have to be realistic, I am really too scared to be otherwise.

Since yesterday has the Hampton’s kitchen started to look brighter, and even more beautiful? Do I imagine hosting more than one Christmas in it? Did I name a couple of chapters in the book and mentally map out what the might contain? Did I think about how I might get to attend Indi’s grade 6 graduation as well as Dakota’s? Well, yes I did, and that is scary as hell! The landscape has changed again, everything has shifted. How do I cope if it’s taken away again?

Gazbo woke up with the dreaded gout this morning and didn’t go to work. I woke the children up for school, and came and got back into bed, spooned into his back for a few more minutes of warmth. Indi and Tana came down, and as they always do, waiting to take turns for a five minute spoon with their mum – a treasured routine that eases us all into the day. When they saw dad was there too, Indi formed a little spoon into Gaz, and Tana came and “big spooned” into my back. We lay there for a few minutes, all of us falling back to sleep, and I realised that because of what happened in the family bed this morning, I will go and lay on that hospital bed next week, and hope and dream again, for more moments like that. I’ll always want more.

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10 Comments on “Hope springs eternal

  1. And more you deserve. I’ll be wishing and praying, and thinking all good vibes for you next week. Big loves from Croatia xx

  2. I guess the thing about where you’ve been since you were first diagnosed has prepared you for the concept of steps along the way. And now you have a half step : the tests to ensure you are a good candidate for the procedure and that is wonderful. :)
    I’m looking forward to you letting us know about living with a kitchen renovation. I reckon it will not be as simple as I imagine.
    Cheers
    Rob

  3. These moments like you had this morning with your fella and fairies is what will keep you fighting Julia, I dont know you butI wish I did, you are so iinspirational. Hang there xoxo

  4. I’m so pleased that you have been given this chance and I’m praying like crazy for you! Every glimmer of hope is worth grabbing onto with both hands 💗

  5. I’m a Lymphoma survivor (so far) & my last surgery was June 2014. Having laid on many beds also, I wanted to share some of the mind games I use to play with myself. It helped me escape the harsh reality of the clinical room I was in &/or settle my often skyrocketing blood pressure. I can recite the Alcoholics Anon Serenity Prayer, the poem ‘Desiderata’, the start & finish of many songs on the radio & would often sing “We are a happy team at Hawthorn” to name a few. My mind has always been too busy & stressed for real meditation, but this is what helped me.
    Its a journey Fairy Queen. More power to you girl x

  6. All available limbs crossed for a positive outcome. What an awesome Christmas gift that will be xx

  7. Well I’ve never ‘rushed’ so much down a blog to take it all in. I was sensing ‘hope’ hope’ and more ‘hope’ and I had to see it in writing to believe it. How much ‘hope’ was I going to read? Lots of hope, I’d say! Tears are flowing here, down under, Tears of HOPE!!! xxxx

  8. Hi Julia,
    You probably won’t remember me but I had the absolute pleasure of meeting you today, chatting to you, admiring your tatts, and generally being in awe of your amazing spirit. As I said today, tomorrow i will go out and buy your book and let me tell you, I’m going to live my life and appreciate the little (and the big!) things. Thank you for your perspective and for being a fun visitor to our little place! Wishing you the very best in SIRT outcomes xxxx

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