Sorry, got a bit excited there. Stable PET-CT scan (MRI not back yet), yet again. Honestly, I thought that would be the case, but you absolutely never know and as I was voicenoting my bestie Katie in Sydney to tell her, it hit me how much of a relief it was to have it confirmed through the scans. I’m still stable. In fact, the scans show that further ossification (that’s what Osteosarcoma does – it doesn’t shrink, it turns back into bone, a process called ossification) has happened since my scans in December. Really, there couldn’t have been a better result.
The reason I say I was certain it’d be stable, is because of my pain. Or should I say, its absence. It’s been a long 3 month period, but I’ve finally managed to wean off all my oxycodone – from 100mg twice/day back in mid November, to 0 now. How do I feel? How’s the pain? I go to say ‘completely gone, no pain’. Which is true in terms of the kind of pain I had when I went on it, when the cancer was running rampant. But it’s not entirely true. My ear often hurts, my head aches at times, I get pain across my forehead sometimes, my body feels thick and heavy and so easily exhausted. But considering it’s been less than a week since I’ve been off them, it’s hard to know what is related to my body getting off the incredibly strong opioids, and what is my normal state. In the past I’d wake up feeling like I’d had no sleep, with everything hurting, unsure how I’ll get through even half the day, and taking the oxy has helped. I no longer have that now. So we’re just taking it as it comes and seeing how it all goes. I thought that I’d reach a point where I couldn’t reduce any more. There’s obviously still a huge tumour in my skull, pushing on my brain, my ear, onto the hardware the surgeons put in my face, on the back of my head… But it seems to be just kind of hanging there at the moment… And anyway, I figure if I can just take something like paracetamol when it’s particularly sore and I’ve got to go somewhere (unsure yet whether paracetamol helps), that’s much better than damn oxycodone. So grateful for it when I needed it for pain, I couldn’t have survived without it, but I was pretty keen to cut back on the the memory loss, brain fog and constipation. My brain and bowels are grateful.
When they doctors said they didn’t think I’d make it through my trip to Australia without things going downhill, I realised I needed to do more. That I needed more people, more things on the case. So I took a step back. The ‘watch and wait (but-probably-not-very-long) approach of my team at UCLH didn’t feel like enough. Not when they’d been so obsessed with telling me it would kill me in an instant, any day now. The thought of doing nothing and waiting for the pain to tell me that it was progressing again and just kind of hoping that things happened quickly enough to get a scan before I died and then hoping there was a treatment available (you may have remembered me mentioning TKIs as being ‘in my back pocket’ – they’ve been taken off the table now, a blog post for another time) just didn’t feel like enough. This is my life, I don’t want to spend it just sitting and waiting for my demise.
So, as mentioned, I read the brilliant Radical Remission book. In fact, even before that, my delving into this world of ‘the other options that are out there’ came to me through a strangely timed message on Twitter: Have you looked into ferroptosis?
This felt too close to a ‘have you tried’ for me. The amount of people who are quick to tell you what hack/treatment/cure they read about in an article once that you should be doing to absolutely cure yourself. Alkaline diet/celery juice/just take vit C/weird unnamed dodgy looking plant/mindfulness/getting rid of wifi/moving to a hut in the middle of a forest/flying to a clinic in Mexico/turmeric/fasting for a month/juicing/only eating broccoli hand picked by the light of a full moon/sitting naked on a mountaintop... The list goes on. It’s rarely helpful and almost always patronising and alienating (I know people do it thinking they’re being helpful, but you heard it here first, it probably usually isn’t). But… the word stuck in my head. It sounded scientific. And when my regular team didn’t seem to be holding out much hope for me, my desperation led me to read this person’s quite convoluted and hard to follow book. The title (‘how to starve cancer‘) almost put me off. But I persevered.
It led me to the Care Oncology Clinic, which specialises in Integrative Oncology, looking at cancer as a metabolic disease. Before I went to Australia, I managed to get myself an appointment with them. They have been my lifeline. My Oncologist there is an absolute delight and I so look forward to catching up with him. He prescribed me 4 off-label drugs:
- Metformin – traditionally used to treat diabetes, but manages glucose, which flattens out blood sugar spikes therefore helping diabetics to have better blood sugar, and stops cancer getting so much fuel
- Mebendazole – a friend said ‘I had that once to treat an intestinal worm! The idea is that it starves it of glucose and it dies’, aha, I get it.
- Atorvastatin – usually used to treat cholesterol but also known to reduce tumour cell proliferation (rapid reproduction)
- Doxycycline – I couldn’t remember why I was taking this one, but Google tells me: it exhibits cytotoxic, anti-inflammatory, anti-invasive, anti-proliferative, anti-angiogenic, and pro-apoptotic properties. Basically, keeps cancer in its bloody place, and promotes apoptosis (programmed cell death).
Big words. I’ve learned a lot of big words lately, as I’ve read loads of scientific studies about different things and their effect on cancer and osteosarcoma in general. If a paper said something even might help, and the side effects/cost/impacts were minimal or tolerable, it got added in to my regimen. For example, lots of dietary supplements that I lugged, zipped into the top of my incredibly heavy case, to Australia. They included things I’d never heard of like: Berberine to inhibit metabolic pathways and manage glucose (it’s also helped lower my dad’s high blood pressure), Genistein which is shown to inhibit osteosarcoma growth in early studies, Ursolic acid to halt progression and trigger apoptosis, mushrooms for immunity, the list goes on.
The thing is… Conventional treatment and survival rates for Osteosarcoma haven’t really changed since the mid 1960s. There is still no targeted treatment for it. Although my Oncologists and surgeons seemed to have all the answers, the further it’s progressed and the more I’ve read, the more I realise that they’re really just guessing. Educated guesses of course, backed by lots of research and years of practice. But still guesses. The result of it being so rare is that even though there are a handful of really exciting and really promising small and early stage studies done and being done, I don’t know how there will ever be enough participants to run a proper large scale randomised trial that conventional medicine requires before a change to treatment is made. And even if it somehow does happen, it would likely be decades until anything filters through from it. And I don’t have that kind of time to wait around for something to change.
So it was time to take matters into my own hands a bit more, and follow the steps that the people who had achieved radical remission all did. I know I talked about this in the last post, but just to remind you of them, because I think it’s a great reminder for us all no matter who you are or what’s going on in your life – and I’ve added a tenth one because the same author’s second book Radical Hope (also recommend to anyone if you’ve read the first. It also branches out to some other health issues but as always is a brilliant and thought provoking read):
- 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
- Exercising (when possible around treatment etc.)
So I went to Australia armed with the knowledge that I wasn’t just sitting around and waiting for it all to go horribly wrong; I was doing, and going to keep doing, everything I possibly could to try and keep this damn cancer in its place. I look at it as my theory of marginal gains: if some of these things even slows progression a tiny amount, for a tiny bit of time, and that’s added together with another thing and another tiny amount… well you can see how it all adds up. And keeping stable for even a few more days is better than not. But I’ve made it much further past a few more days, so I’m going to keep doing everything I’m doing and keep hoping and believing there’s more for me yet. More days to feel the sun on my skin (though it’s been a while), to see more snow (in March! Wow!), to create more things (the novel is coming along, though I also keep writing more songs…) and to have adventures (more on that in a sec).
It gets tiring, though, keeping up with ensuring I’m continually doing these 10 things, on top of everything else. My trip to Australia was fairly exhausting. Don’t get me wrong, it was so lovely, and so many more beautiful memories were made, but it felt like I hardly had time to catch my breath. Then when I got back it was straight back into managing the day-to-day, which seems to take, well, the whole day. Every day. Appointment. Scan. 2 hrs on the phone to the GP asking why they rejected my medication that runs out in two days. Another appointment. Another scan. 3 hrs on hold to to the GP to ask if they have finally prescribed the medication that ran out yesterday. ‘We’re so sorry it won’t happen again’ (it’s the third time it’s happened so far). Weaning myself off all my oxycodone. Talking to my wonderful pain team about weaning myself off my oxycodone (yes, I’ve done it under their guidance, not just going rogue). Psychologist appointment. Getting my boiler and my oven fixed falls lower down my list as another hospital appointment is scheduled. No time at all to text or voicenote my friends, no capacity to go running around London being social. Certainly no time, energy, or wherewithal to write long, wordy, beautiful blog posts (at least that’s what I aspire to, not sure they fall into the ‘beautiful’ category, but here we are).
For a long time, the mere thought of having to do anything myself (with regards to my cancer) was too much. And I really see now why. I was angry at the idea that it might be somehow MY responsibility to go reading hundreds of scientific papers and combing through the internet for anything that might help. That was the doctor’s job. It was their job to fix me. They’d literally dedicated their lives to this one thing. The times they asked me to make a decision and I had to do my own research, it absolutely gutted me. I felt burned out and depressed from the whole thing and the depressing survival rates just kept jumping out at me. But they no longer know how to treat it, really. So it’s on me to become an expert in my own cancer. And I’m primed for it. A science degree and a background in science research coming in handy in ways I never envisioned when I chose my Arts/Science (Ancient History and Zoology) degrees at 17.
My team at UCLH glossed over my latest scans, saying ‘yep stable, see you for a scan in three months, let us know if it all goes wrong, you’re the only way we’ll know’ (hyper-vigilance, go have a field day, won’t you?). And I was so grateful to ask for the scan report, read it myself, google some things, get more confused, then have it explained by my BRILLIANT Oncologist at the Care Oncology Clinic : The appearances are stable with further ossification of the right middle cranial fossa mass. This is not avid.
I get that my Regular Onc is pushed for time, but I was surprised that he didn’t think to mention there had been further ossification (‘this is not avid’ I believe refers to the fact that it’s still not uptaking the glucose they give you for the scan, that lights up areas of activity – i.e. it’s still ‘switched off’, as they described it). So it was brilliant to know I could talk it through with my Integrative Onc, who described it all to me in detail, so I could actually understand what was going on in my own body. The blood test I also have to get for my treatment with them (I don’t get any otherwise) telling us that in fact, my body is getting stronger again.
Sooooo stable scan in hand, I booked my Eurostar because guess what? I’m moving to Paris for a month. Talk about adventure. I’d always dreamed of living in Paris. But I figured it was just one of those dreams that probably wouldn’t happen; what with Brexit, cancer, and the fact that I don’t think I could ever leave London anyway. But then there it was, in the opportunity of house sitting for a friend with the most gorgeous apartment there. Spring time in Paris, baby!
I also booked flights to go to my friend’s wedding in Mallorca. It feels mad that we’re talking about it actually happening, both of us armed with our stable scans that at one point didn’t seem possible. But there’s life here still to be lived. And let me tell you, I’m living it. Around a lot of rest and downtime, of course. I’ve been Spring Cleaning and found an old diary from 2019 and even just looking at my social calendar from back then was enough to make me feel weak. I don’t know how I did it. But I probably haven’t really changed that much, I’m probably always on the verge of doing too much, but always striving for the ever elusive balance. Anyone remember the old radiotherapy-in-the-morning-recording-an-album-in-the-evenings thing? Yep.
It’s also come to my awareness that people don’t readily realise you can put your email address in at the bottom of this page (and any page) and get any new posts sent straight to your email address. No pressure to, I love you to consume this content however is best for you! I’ve just noticed some people mentioning they often manually check to see if I’ve posted something and then realise they can actually just get new posts sent to them and much prefer it. So I thought I’d mention it in case anyone is interested! Posts are sporadic when I’m busy or exhausted, more frequent when there are a lot of new things to tell you about, posting or not posting doesn’t mean anything more than whether I’ve had the capacity and time to get it all down. But I’m still here, still keeping you updated, still incredibly grateful for the love and support and that you take the time to read my words.
Bring on Springtime in Paris! But for now, here are some memories of Aus.
11 Comments Add yours
Great to hear you are still trying to cram as much into each day as you can.
Enjoy your trip. You really are an inspiration.
Great to hear you are still trying to cram as much into each day as you can.
Enjoy your trip.
FUCK YEAH! This is the best post! ❤️
Glad you had a great time in Australia
Keep cramming as much into each day as you can.
Glad you had a great time in Australia .
Ah this made my day…scratch that…my week! Sounds awfully odd to hear from someone you’ve never met but I’ve been thinking about you and hoping all is well. Keep being amazing. 💖
Awesome news that’s warmed my hard this cold snowy day! 🙌🏽👌🏽👏🏽🥰 Super excited for you, Jen! Wishing you all the best fun and joy in Paris and hope all continues to go smoothly 🙏🏼❤️🩹
I’d been worrying about the “radio silence” your end, thinking the worse . . . and was soooooooo relieved to read this post! Great news that you’re still making so many plans to cram in new adventures. As one who lives in France , . . . bear in mind we’re having loads of general strikes at the moment which is creating hassle with things like travel, including trains & underground (re your up-coming Paris adventure).
I love this news! X
I find myself smiling while reading this one Jen – I feel so much hope bubbling up from those extra avenues you are taking.
Thanks for sharing the info and the 10 steps. That’s incredibly useful for us all.
OMG Paris….enjoy Lovely. EnJOY, xx
Thank you Jen for your updates and intuition. If it helps i have just said goodbye to Julian my son, back to UK for how ever long he doesn’t know, i hope i get to see him before the next 11mths. Its to painful without but to expensive with. Anyway think of you and son just out here and seen for a couple of days. He and girlfriend in st johns wood do you want me to connect or you have enough buddies in London. xo love Annie Payne