Of course there is. Well, at least it’s not all bad I guess… that makes for a change… Ok, give it to me, Mr Radiotherapy Oncologist. Actually, sitting in his office back on the 9th of December, only 4 days after my MRI and 7 days after the PET Scan, I wasn’t expecting he’d have the results yet. But he said he knew I’d want them before my impending flight to Australia, so he made it happen. A different story form last January when I waited two months for scan results… (since then, the hospitals and the NHS has been plunged into absolute crisis though, and I dread to know what the effects of that are for cancer care. But alas, that’s a discussion for another time).
I hadn’t liked him at first, my Radio Onc. He was the one who first became obsessed with saying I was going to die any day now. But since then, I’ve got a bit more respect for him. For example, soon, you’ll see how he adjusted his communication style based on the feedback he was given by my pain team of dreams and my psychologist – to stop telling me I’m about to die.
So, sitting in his office, a week or so before my flight, he tells me there is good news and bad news.
The good news, it seems, is actually a damn sight better than good news. In fact, it’s a miracle. You might remember that the consensus was that radiotherapy wouldn’t work. And if it did, the only hope would be that it would make the cancer just slightly less active for a short amount of time, perhaps buying me a few extra weeks, maybe a month if i was very lucky…
‘You might have noticed my shock,’ he said, ‘when you told me a couple of weeks ago that your pain got better after two weeks of radiotherapy.’
‘Yes,’ I replied. ‘You seemed very surprised.’
‘Well, I was shocked because it’s not possible. Radiotherapy doesn’t work like that, certainly not with Osteosarcoma. If anything, it might start working maybe 6-8 weeks after, and even then the gain is minimal.’
‘Yeah well, I was in ever increasing pain since July, and we were going up in strength of Oxycodone every few days because it was so rapidly progressing. Which was absolutely terrifying. Then two weeks into radio, the pain plateaued, and then it just… disappeared.’
‘It’s just not possible. But the scans show the same thing – your tumour is completely inactive. It’s switched off. It’s had a complete response to radiotherapy. I’ve never seen this happen, I’ve never heard of it happening, it can’t happen. Yet it has.’
Hey, that’s me. A walking, talking miracle. Don’t underestimate me, Ol mate.
The bad news is that the MRI shows that it has grown. Significantly.
Hilariously, this has completely stumped both of my Oncologists. They can’t get their little heads around it. Which amuses me to no end because obviously that’s the case. They can’t understand why the PET Scan shows no activity, yet the MRI shows it’s grown.
‘There must be something wrong with the scans,’ they both said, separately.
Let me break this down for you – my most recent scans were in November, and my last scans before that were in July, around a week after I was suddenly in debilitating pain, the type of pain I had last time it was growing. They didn’t start me on radiotherapy until mid September. In that time, the pain was getting constantly worse. In fact it got so bad that I got up to taking 100mg of Oxycontin twice a day to vaguely manage the pain, which is almost the maximum you can have, and is a hell of a lot (not to mention also Gabapentin, Amitriptyline, almost constant Paracetamol, and liquid Oxy too). Of course the tumour grew in that time, I didn’t realise that was ever in question. Yet they both still say ‘there must be something wrong with the scans. It makes no sense. We don’t understand it. Oh, I guess unless it was between July and September it got bigger… But no, it makes no sense.’
Argh! OBVIOUSLY it grew in the time the pain was increasing and I was on no treatment! Honestly, for very smart people, common sense often evades them.
The tumour is now so big it is threatening 3 arteries. As my radiotherapy Oncologist says ‘now there’s three times as much chance that… the thing we talked about, I don’t need to say it again, will happen. Any day now.’ – That ol me dying thing. At least he now calls it ‘that thing we talked about’ rather than ‘your immediate death’, so I guess that’s an improvement… Also now, it’s threatening my remaining optic nerve. Which means if I don’t drop dead first, I may go blind. So that’s scary. But for now I’m focussing on the whole ‘tumour is switched off’ miracle.
Radio Onc was very quick to tell me that although he doesn’t understand anything about how or why it’s working, there’s no chance it will hold for any longer than 3 months, which takes me to mid January. No chance. In the same breath he admitted he has no idea what’s going on, he said he’s absolutely sure on how long it will last.
I say stuff him and his estimates. I’ve proven I’m not one of his statistics, I am an unexplained miracle, so I choose to believe what is the truth – that they don’t know. And although they feel uncomfortable about that, I feel pretty great about it.
I’ve been reading a book about people who have achieved radical remission – those who have been diagnosed with late stage cancers, had no treatment options available (or turned them down), and were sent off home or into hospice care to die. These people went off and then ‘miraculously’ (according to conventional medicine) went into remission, with no further chemo/surgery/radio/immuno etc. The book is great, with scientific research and case studies. And I figure; if anyone has achieved radical remission from Osteosarcoma, I can do it too. And if they haven’t, I guess I’ll be the first.
Look, I’m not stupid, I’m not in denial, this is really serious, I know. But I’ve got days left to live. Hopefully many. And I want them to be the best they can be. I’ve made it to another Christmas, another new year, another trip to Australia – and not just to move back to die, a proper, fun trip. There was a time, a few times, where that didn’t seem possible. I feel good. In fact, I feel better than I have in a very long time. Since I can remember. What’s the harm in hoping for and working towards NOT dying right now. I don’t want things to go rapidly downhill halfway through January, I’m hoping to stay on holiday until the end of the month, in fact. And I’ve got so many things I still want to do. The album was only the start. So I’m going to do anything within my power to make it through this trip and back to London, renewed and refreshed and ready to jump into the next thing.
The lessons in the radical remission book – the top 9 things that almost everyone who achieved it did – are relevant to all of us, I think, so I’ll share them here:
- Radically changing your diet
- Taking control of your health
- Following your intuition
- Using herbs and supplements
- Releasing suppressed emotions
- Increasing positive emotions
- Embracing social support
- Deepening your spiritual connection
- Having strong reasons for living
So if you’d like to join me in bringing some of these things into your life more, welcome on board. I think they’re things we could all benefit from.
Anyway, cheers from Sydney. Hope you all had a nice festive period.
11 Comments Add yours
Permit me to shout, HALLELUYAH!!!! You’re indeed a miracle and not one of the statistics! You made it through another Christmas and I am so happy for you! Here’s to all the good things that await you and easier days ahead!
Thanks for sharing your lessons from the book, looks like a good place for us to start our 2023 resolutions 👍🏽🙏🏼☺️
I’ve bought a copy of the book Jen and agree totally the 9 key findings are totally relevant for most of us. Look forward to making changes for 2023.
Yes!! You are not and never have been a statistic. I love your attitude of focusing on living – you have so much life to live and days to live it. I love that the medical world has embraced the word ‘miracle’, they do happen and they are incredible. Can’t wait to see you in a few days!
Jen, you are not only an ‘unexplained miracle’ but someone who gives far more to others than you appreciate. As I have previously told you, I walk around with a screenshot of a piece of your writing , so I can refer to it as a reminder of how to approach life – it has served me well. Now, in this latest blog you not only offer 9 new thoughts, but more importantly optimism! “What’s the harm in hoping for and working towards NOT dying right now”
I am thrilled that you are leading the Radio Onc a dance – dance to your own time and beat Jen!
PS am waiting for the announcement of 2nd album.
Never underestimate a woman with a wild Spirit and a pure hearted willingness to say yes to life! Thanks for keeping us in loop Jen x
I’ve said it before and I’ll say it again, you are an astonishing human being. My god, the comments above absolutely nail it. Your wild spirit continues to inspire xxx
Your great. So positive so keep on doing what your doing!!
Wow Jen, walking talking miracle lady! That’s a great list for anyone. You’re making the most out of every day, something we could all do but forget about. Like John Lennon said – life is what happens while you’re busy doing other things (or something like that). Here’s to many many many more days xxx
Yay to dumbfounding the doctors and good news! Love the photos xxx
they do say that medicine isn’t an exact science ^^ here’s to hoping you can confound and dumbfound the doctors some more!
Hi Young Jen
Thanks for the update and I do hope your Cancer has a remission as com plicately explained by all your up to date investigations. Loved the photos in your pool you lucky ducks.! You must be loving the sun, I hope and of course parents
around, no matter how independent you are! Tee Hee.!
I had a lovely swim at MV Basin today, finally the ocean temp Is 23degrees!!!!!
Jen can you put your head under water? Would love to take you for a swim on Thursday 11.30am or Sunday same time if its suits,?
Happy home times