So my initial call with my normal Oncologist seemed OK. I mean, it’s super bad the tumour is progressing, it’s not what anyone wants. But then immediately he said ‘Ok, what shall we do next then, we’ve got a few options, it’s just a matter of finding the right order.’ And it was decided radiotherapy was the logical next step. Yep, cool. We’re all on the same page.
So then I spoke to the radiotherapy Oncologist on Monday. Who was standing in for the normal radiotherapy Oncologist who is on holiday.
The thing they’re concerned about is the placement of the tumour. Firstly, it’s starting to push into my brain. That’s pretty scary. I made a strange squeaking sound when he said that, which just sort of fell out of me. But that’s not the scary bit, he said. (not the scary bit?) What’s really scary is that it’s spreading into my sinus area – the path of least resistance, upwards. Apparently it is dangerously close to my interior carotid artery, and making a nice bee-line in that direction. Quickly, really. Just sort of… Unhindered at this point. And the risk is that it’ll squeeze that artery and I’ll just drop dead any day now. Any day. Not ‘we’ll try this treatment, then another, then another, eke out the weeks, the months’. No. Drop dead any day, now.
Any day now? Just… drop dead? What?
Then he broke to me the swift kick to the stomach…
‘Oh yeah and there’s a 6 week wait for radiotherapy’
‘6 weeks? Wait, what?’
‘Yep,’ he shrugged.
‘What, so I just… die waiting?’
He shrugged again.
Ok so, he said we can look at wedging a lil chemo in there in the meantime to hopefully hold it for a moment, which is actually quite an attractive idea to me. He said that radiotherapy takes a good 4 weeks to actually start working anyway (terrifying). So if we can get some chemo in the meantime, that sounds good to me. But of course my chemo Oncologist is away on holiday until… ?? No one knows.
But before I could start rallying and moving to ask if there’s an option of, I don’t know, looking into going private to get something done LIKE NOW, GUYS, THIS IS MY LIFE! They’ve got me in tomorrow for my radiotherapy mask fitting (terrifying) and preliminary scans. So it is moving forward… Apparently I’ll find out about my schedule tomorrow. But it’s looking at like… Every-day-for-6-weeks kinda thing. And as Osteosarcoma is famously resistant to radiotherapy, they feel it’s unlikely to have much effect. Hopefully a couple of weeks, at best, maybe a couple of months. Unless I suddenly drop dead along the way… And no, they can’t say whether they think one outcome might be more likely than any other…
This idea of ‘might drop dead any moment now’ really shook me. Understandably. I knew I didn’t have long but I didn’t sort of realise that was a likely enough outcome… I suppose really, it’s not a bad outcome overall, means my suffering will be quick, it will happen immediately and I’ll just drop and cease to be living. It’s just not how I thought it was going to go… I sort of thought I maybe had some control over the narrative that when things got bad I’d just totter off back to Australia to die in my childhood bedroom and lie by the swimming pool…
I had my friend Nat over that evening and we drank Prosecco and red wine and ordered takeaway and sat in my living room and I played her some secret tracks from my upcoming album (better get moving on that, eh?) and we danced around my living room and my heart was full. Beyond full. Bursting.
Then on Sunday I had a Facetime with my Ma and Da for three hours and we laughed and cried. We talked about legacies and where my ashes would go and the possibility that I might never get back to Sydney again. That even if I did get some warning, there might only end up being space where I can’t travel back and instead, we all settle in here for those last days/weeks. And maybe that’s ok. I’m so grateful for the 10 months I got stranded back in Sydney in 2020 during Covid, before everything went downhill again (for me). I had so many perfect memories made then. Nothing will take that away. If we can’t repeat it again, that’s just life.
Then on Sunday Rosa came over and we drank Champagne and talked about serious stuff and light stuff and everything in between. We cuddled and cried and talked about all the possibilities and how we would navigate them always hand in hand, beside each other at every turn. I’m also realising I need to do the death admin I’ve been putting off because I might not actually get the warning of the end that a lot of my friends seemed to get – though it’s never not been a shock. (from boring stuff like making sure mum has access to my bank accounts and can contact my solicitor who holds my Will, to the fact that I’m insisting on having ‘I’ll Follow The Sun’ by The Beatles at my funeral and you will all cry, sorry, but never has a song felt more fitting for my final moments).
Then I had a pretty scary couple of days (wait, you say, then you had a scary couple of days???!!!!) I finally got my 4th Covid booster and it did not go down well. Raging fever of 39.5, hardly able to sit up, look at my phone, type, see anything, and the most excruciating pain exactly where my cancer progression pain is. I lay on my bed drifting in and out of delirium for two days, wailing in pain even despite all my hardcore pain meds, wondering if this was going to be the inflammation that broke the interior carotid artery’s back? Did I do bad?
But I guess I’m still writing, aren’t I? You must have guessed my arteries are still somehow intact.
Today I had lined up to go watch my niece and brother fencing in the Commonwealth Fencing Championships. So I pulled on my outside world costume and I got on the tube early in the morning and I went to somewhere exorbitantly far out East London and had the time of my life. Felt immediately accepted with open arms by the NZ fencing team and their parents and coaches and supporters. The youngies (under 20s – my niece and their friends) treated me as one of them – I think the fact that we all had black nail polish on and I dress like a pirate in huge black clompy boots stood me in good stead. They immediately felt like my people (I think we can sense like-minded souls a mile off) and it was just such a dream to get to chat to them all. They’re a great group. I also spent time sitting with their parents and cheering too, getting to know them all too and again, feeling immediately accepted. Then I got to go watch my bro fence and got a couple of ‘you must be Jules’s sister!’ which just filled me with pride. YES I AM! So proud of my big bro!!! And my niece! They both came second of the New Zealanders in their respective age groups (which tops my first in the NSW Novice State Championships back in my day [and later third about 8 years later when I forgot I’d already fenced in that particular competition and probably wasn’t eligible to do it again but hey, no one stopped me] but I’m still going to try and muscle in a bit, it’s MY blog after all!!). Mostly it was just fun to watch, who cares where they came. Though very proud sis/aunt/god mother right here. Just the fact they BOTH qualified to fence here is incredible.
I got compliments on my boots, on my eyepatch from kids who ran past me on the street, from the comrades of my niece and brother at the tournament as well as other complete strangers there, from the homeless man at my local tube station. Oh, and I got to ride the Elizabeth Line for the first time, which felt iconic. I cried, it was all very moving.
Then I cried the whole way home from my local station, via a brief stop at the chemist. Big tears. Happy, sad, whatever you could think of reasons to cry for, I did it.
How can being so ecstatically happy sit so easily beside the extreme fear of being told there really probably isn’t long now?
Walking home down perfect streets of evening sunlight filtering through dappled leaves, so overflowing with complete joy, while also thinking, knowing, that this might be it. The last evening I’ve got, my last walk home to my beautiful flat. Did I just hug my friends, my family goodbye for the last time?
How can terror and joy sit so close together, holding hands fast, right there with me at every turn?
But of course they do, because what else is there? This is life. And it’s all here, all existing together.
On Tuesday when I couldn’t move or look at my phone, I got voice notes from my lovely friends to keep me connected and Rosa checked in to see how I was doing at the news of my friend Danna dying. I hadn’t even known that she died. She was diagnosed with Sarcoma around 6 months after me. An even more rare version, in a similar place to mine. The exact same type my dear friend Ferg died of not long ago. Danna’s had spread to her lungs. And only a few days ago we were texting, not long before, voice noting from where she was in America (after having to leave her life’s one great love story, Helsinki (like London is mine) to move back in with her parents – which she showed me is so beautiful). There aren’t many of us left now. We’re all in our final stages, my original cohort… But there are a few of us still here, banding together even more tightly.
It’s been a hard few days, I guess. That’s putting it unreasonably lightly, isn’t it. I don’t know what the bright happy ending to all of this is, maybe there isn’t one. And I’m terrified of this mask fitting and scan tomorrow, and 6 weeks of radiotherapy that I might not even make it to. But tomorrow my big brother is coming with me to maybe hold my hand, maybe read to me, maybe sing to me as I go through this next scary bit and remind me that I’m not alone, I’m never alone. I don’t think it gets much better than that, really.
But for all those who clocked to the idea of me going to a fencing championship and what that might mean for my peak pirate persona, you will not be disappointed. London Ultimate Level Pirate Life Activated. And let me tell you, this pirate does not look ready to drop dead any moment (though of course I have absolutely no control over any of it) so let’s at least enjoy this one while it’s still here.
18 Comments Add yours
I’m just completed stunned that your doctor could be so blasé and even more so with the internal carotid news!
Twice in as many days I’ve heard shitty news from beautiful strong amazing women being attacked by osteosarcoma. Well it can F off
So sorry about this sad news but holding out hope for you that there will be a better outcome🙏🏼❤️🩹
So sad to read this. You make one very beautiful pirate. Sending another big Welsh cwtch…they’re the best hugs in the whole world x
Hi Jen … Alice’s grandma , Louise here. I want
to tell you loudly that you are a truly amazing girl who is an inspiration – you will never know how much you helped me when managing little Alice’s cancer these last 18 months. Living life to the full has been your consistent message, no matter what life presents us with and I am so grateful to you for that. You are brilliant. I am thinking of you so much as you face this scary next stage in your life but please know you are in my heart and your legacy is firmly in my mind for always. Thank you Jen.
Sending you much love, peace and strength. Xxxxx💕💝🌹💕💝🌹💕💝🌹💕💝🌹
I am so sorry and sad to hear this. I have never met you but it just all seems so wrong. I know life isn’t fair sometimes.
You are one incredible lady to be able to even write this after receiving such awful news.
I am so pleased you have your Brother here at the moment and your friends sound pretty amazing.
I will be thinking of you.
Hey, long time reader and lurker here (that sounded far more sinister than it meant to!) I just wanted to say I’m so sorry that news was delivered to you so bluntly and I’m so sorry you’ve had that news. Your bravery and zest for life are incredible. And you make an amazing pirate!
Sending our love. I am glad Juls is there to go with you.
Dearest Jen Sending you all the love in the world and the best of luck for the treatment whatever it may be. You live your life in a big way and enjoy every moment. We’re all thinking of you here in Aus. Big squishy hugs to you pirate girl. J xxx
Ohhhh Jen ❣️ We’re here on the ride feeling the hope and the fear with you . Of course our little microcosm is no where near as intense as your front line macrocosm of these experiences, but thank you. Thank you for sharing so honestly and giving us a glimpse into what it’s like to face such unknowns and for allowing us to come along with you. We wouldn’t want it any other way! Xx
I’m so sorry that this terribly difficult news was broken insensitively. We’ve never met, but you are in my thoughts a lot. Your joy for life and your talent for writing is incredible. Good luck with the coming treatments Jen.
That waiting time?!?? Nooooo. They have to refer you to somewhere else, private, another NHS hospital, anywhere. In these situations it’s such a challenge to choose the right words, but OMG that was an epic failure. I’m sorry you had to be there to hear those words.
I just think that the waiting time is so so unacceptable! They must do better. What happened to NICE guidelines etc? 🙈
Your amazing attitude has made me take stock of all I have on numerous occasions. Why / How is it that patients who are on a time limit have a much clearer understanding of how to ‘live’? Amy was the same.
You have taught me so much.
Oh Jen that’s totally unacceptable. They must be able to refer you to a different hospital. What about all these instagrammers that just rock up to the Marsden and have in their own words their consultant on speed dial !! Surely you can ask to be treated there too ?? If you haven’t already ,please check out Mary Huckle on IG She’s a stage 4 sufferer herself and an amazing advocate . She will maybe be able to advise. Her DM’s are always open.
You are simply incredible. I hope your parents get over to spend quality time with you. I can only begin to imagine how stressful it all is for everyone.
Please please get someone on your case. It’s not fair you’re being put on hold literally for six weeks before treatment can begin. Sending love.
I can’t quite get my head around this news, so I can’t even imagine what you must be feeling right now! And saying that – you make a great pirate!
Jen, like everyone else, I’m stunned and outraged on your behalf. And nauseous just thinking of your pain and anguish. I admire you so much for your talent, courage, humor, determination and all the qualities that have attracted so many loving friends. At 77, I’m at peace with what’s ahead for my MBC, but your youth makes the situation so poignant. Wishing you many more good days.
It must be very difficult to live in this space at the moment but you clearly show how every single moment on this earth is to be cherished. Thank you for making me sit up and realise this. Your honesty takes my breath away.
Maybe the radiotherapy will be the godsend. You deserve so much more time. I will keep everything crossed for you.
Hope the mask fitting went OK.
Love your boots sweetie! You are the most astonishing woman, How great your brother is there to hold your hand. We are sending our love from Newport. Big hugs, S&A
Hey Jen ❤️❤️
Sending hugs and your pirate piccy is awesome 😎 xx