Devious Journal Entry
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(Disclaimer: This discusses views that work for ME, and is not meant to be proscriptive to how other people deal with their paths on this journey at all. If you do it differently, that's awesome. *thumbs up*)

I was talking to my therapist Thursday about how weird it is to watch people getting so angry at my cancer. Tell me to fight it. To battle it. Crying 'fuck cancer.' Scribbling their thoughts onto the whiteboard they think is me, when none of those things are my philosophy at all...

Here's my perspective: If you treat the body as a battlefield, you will lose, even when you win. It's not a coincidence that people get so many war-based mental illnesses from waging war on their own bodies. That's why - in part - we have cancer-based PTSD, anxiety, depression, etc. Our language is based in war and battle. 'Fight the flu!' 'Beat the cold!' 'Battle cancer!' 'Destroy toxins!' It is based fundamentally in destruction and death instead of in supporting the body. Not 'How to Support Your Body When You Have the Flu' but GO TO WAR, GO TO WAR NOW.

My body is not a battlefield, thanks. I'm not fighting a war. I'm not *angry* at my body for genetically doing what it knows how to do (grow tumours), I'm *grateful* that it's still stopping me from growing even more tumours. I want to support myself, not fight myself. I'm learning how to support my body, and your war and battle metaphors are not - intrinsically - supportive. I don't need a flamethrower to direct at myself. I don't need to shake my fist at my genetics. Do I wish it was different? Of course! But hey guess what, it's not.

My body, as with all nature, does what bodies and nature do - it gets sick, it gets diseased, it continues to try and live, it supports itself through illness, sometimes it gets weaker or stronger. Sometimes it lives or dies. That's not a war, my friends. That's life.

This Copper Forest illustration I've been working on, was intentionally a forest that's ill and sickened. The trees have galls. There's almost no leaves. Branches have fallen. Yet there is so much LIFE here, and dare I say it, BEAUTY. Do you want to go to war with that forest?

My body is like The Copper Forest. It is sickened. It has cancer/tumours (like galls). But there is so much life here. So much beauty. I'm not angry at myself. I'm not at war with myself. I'm not in a battle of 'life and death.' I'm just living as best I can, and supporting myself too.

I will treat my tumours and I will support my organs, my soul and I feel honestly very content about it all. I'm not happy I have cancer, but I don't feel like the process I'm going through is different to any other life process. Why go to war, when I can walk through the woods.

Instead of throwing your war/battlefield metaphors at me, throwing your vehement anger at my body (the tumours are grown by it after all). I invite you to come walk through the woods with me, and see what we find together.

That's what I think support looks like.

*

(Specific update: one of the tumours has grown 5 millimetres, which doesn't sound like much, but there's not all that much room in the neck for two tumours, and I see the radiation oncologist in two weeks. It looks like this will be the year I start radiation / Cyberknife radiosurgery! Exciting and somewhat terrifying times).

*

And my year from diagnosis anniversary:

A year ago today, I was diagnosed with multiple paragangliomas.

A glomus vagale paraganglioma (Thelma), a carotid body paraganglioma (Louise), and either a glomus jugulare or glomus tympanicum (Caramello). My koalas clinging to arteries, and feeding like vampires off my blood. (Or, as I like to call them at times, ‘those little fuckers’).

In the year that has followed, I’ve had many MRIs, one PET scan, multiple CT scans, a lot of bloodtests, and seen a lot of surgeons, specialists and been on a lot of websites. My team of specialists (Radiation Oncologist, Endocrinologist, Neurosurgeon, Vascular Surgeon, ENT Surgeon) are my boy band. They’re great. The nurses and radiologists that have helped me are incredible.

In the year that has followed we went from rushing headlong into surgery, before a brutal crashing to earth where I was told very frankly that the risks of death were too high for one surgeon to be comfortable doing it. Again and again, we were told that the risks were just brutal, and the permanent side effects (the ones that cannot be avoided) were frightening. Loss of voice. Loss of swallowing. Deafness.

They also didn’t guarantee the tumours wouldn’t return, and don’t include the removal of tiny Caramello.

So we learned about Cyberknife stereotactic radiosurgery and Gamma Knife. We learned about lutate and other chemotherapy options. We know about trials here in Western Australia and in the USA and elsewhere. I watched webinars and livestreams of the 2017 Para/Pheo International Symposium. A getting together of some of the best specialists in the world, on one of the rarest types of tumour in the world, that cannot be graded.

I’ve talked to patients in other states. I’ve talked to nurses and doctors in other states. I’ve become a Moderator of the Australia and New Zealand Pheochromocytoma and Paraganglioma Support Group. I spend a lot of time there, even when I seem inactive here.

I’ve been told to eat more. Eat less. Alkalise my body. Go ‘keto.’ Juice. Fast. Spend thousands of dollars on snake oil treatments. I’ve been told to be angry, be furious, be sad, be happy, feel lucky that it’s not a ‘bad cancer,’ feel terrified, feel like the way I think about my cancer will kill me, feel enlightened. I’ve been told that ‘my friend who did this one thing amazingly went into remission so you should also do this one thing’ even though none of those friends have ever had neuroendocrine cancer. I mostly just continue to do my own thing.

I’m doing well. I have bad days, but I had bad days before I was diagnosed. In the space of a year, I have learned to love myself more (happy valentine’s day, me) and love others more (happy valentine’s day, loved ones). I’m happier about my body. It keeps me alive! (Well it tries anyway). I’ve become more social. I’ve written hundreds of thousands of words, and reached thousands of people, and my Patreon account is active again. I’ve done art I’m proud of. Talked to people who make me laugh and who I love and adore. I’ve finished the Bardic Grade in the Order of Bards, Ovates and Druids, and am about to commence the Ovate Grade.

I’ve gotten to enjoy epic sunsets and cloud formations in Ellenbrook. I get to see kangaroos on a weekly basis. I love the cats. I get to spend time with loved ones. I’ve spent the year enjoying old favourite cuisines and finding new ones. Hey Gusto Gelato exists and it’s in Perth! I’ve enjoyed Instagram and generally loathed Facebook. I’ve spent amazing moments with friends. I’ve re-established a habit of meditating. My basil’s growing really well. The words generally flow, the brush responds to my fingers, and I can still speak in my own voice and sing when I want to.

There’s a lot of things I still want to do and achieve, but hey, I’m here to hope about the future, think about the past, exist in the present. That’s a good thing.

And so, my life is going well. So while it’s a strange anniversary to mark, I prefer to think of it as the day where I’m still alive, goddamnit, and that’s a wonderful thing indeed.
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Comments (33)
GeaAusten's avatar
GeaAusten|Professional General Artist
Inspiring words xxxxx
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Ravenari's avatar
Ravenari|Professional Traditional Artist
Thank you very much <3
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toxic--sunrise's avatar
i haven't seen this before now, and i'm sorry that cancer of any sort is something you have to experience, but your outlook on it is amazing.

i personally have a similar genetic condition where my bones grow much like trees, shooting off in random directions and running into important squishy things, like muscle, tendon, etc, and they continue to grow with me until they're too big for me to mange mobility. i've had two surgeries so far, and i'm not kind enough to name the shoots, but they're there and they do what they do, and i do what i do. and somehow, most days, there's a middle ground between what they'll allow me to do and what i can manage-- and it's enough. 

i hope that, while yours won't up and disappear in a flume of smoke, i hope they grow terribly slowly if they must grow at all, and i hope you continue to enjoy what you can. :tighthug:
Reply  ·  
Incyray's avatar
Incyray|Hobbyist Digital Artist
i'm not sure what to say, i've got the social skills of a rock, but i'm very happy to hear that you're doing well and are getting better, and found what you wrote to be very powerful. you have real bravery- calmly walking past the lion instead of fighting it.

c:
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Ravenari's avatar
Ravenari|Professional Traditional Artist
*high fives for rock-like social skills* I start radiotherapy in the next weeks, so that should be exciting! I'm not getting better at all, but I am managing it the best I can. :)
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Incyray's avatar
Incyray|Hobbyist Digital Artist
hooraaayyy!

ooohh (im SUPER LATE, but) eyo, I wish you good luck! who knows, maybe you will get better c:
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Fractaldragon's avatar
Fractaldragon|Professional Artisan Crafter
I am very glad I read this. And what can I say? Brava!
Reply  ·  
Ravenari's avatar
Ravenari|Professional Traditional Artist
Thank you! <3
Reply  ·  
sandyx19's avatar
sandyx19|Hobbyist General Artist
I was very happy to read your update and to see your still alive and kicking!
What makes me even happier is to read how much fulfillment you seem to have found.
I wish you all the best!
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Ravenari's avatar
Ravenari|Professional Traditional Artist
Definitely still alive and kicking! Starting radiotherapy in a few weeks. :D
Reply  ·  
changewinds's avatar
changewinds|Professional General Artist
I'm glad you are finding your own way to deal with your cancer. And I'm glad that you find something of an outlet through your wonderful art. Always glad to see what amazing pieces come from your hand and your mind.
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Ravenari's avatar
Ravenari|Professional Traditional Artist
Definitely, I think that's one of the important things - to find a way that works for you and allows for treatment etc. And so great to be doing art in the meantime. :D
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FamiliarOddlings's avatar
FamiliarOddlings|Professional General Artist
This is very powerful and beautiful. You are amazing. I feel blessed to have our paths cross in this world. :heart:
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Ravenari's avatar
Ravenari|Professional Traditional Artist
Thank you so much <3 I really appreciate you reading!
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taeliac's avatar
taeliac|Professional Artisan Crafter
Thank you for sharing such a personal part of your life. It is a perspective I had never considered when dealing with my own health - I have always viewed it as a fight to the end. Maybe, instead, if I change the wording of how I am coping with it, it may just make it easier to handle. 

I think the "fight it" metaphor is out of their own fear, not anything to do really with supporting you, or they think it's what you want to hear. When my FIL developed throat cancer, and now, with his wife and breast cancer, everyone was throwing around "beat it" and "conquer it" phrases. They were ex military, so maybe it's what they felt they needed, but it's always more for the speaker than the recipient, I think. They have no other way to phrase their fears. I love what you've said, because words matter, and compassion to yourself matters.

Man, I don't know that any of that made sense, I'm sorry! I'm glad you are doing so well, and loving yourself hopefully even more as time goes on!

Also, kangaroos on a daily basis?! You are one lucky person, they're cute!
Reply  ·  
Ravenari's avatar
Ravenari|Professional Traditional Artist
It's really hard, I think, with illness because you *do* want it to end one day, so a war metaphor really helps in the sense that 'I will win this battle, I will win over this horrible thing happening to me.' I can see why so many people love it as a language, and it's very appealing. Especially because like, everyone hates being sick, you do want it to end, you do hate what's happening to you, how unpredictable it is. The illness is an enemy of sorts, just...for me, I'm not sure if I want my body to be an enemy in the process.

I think it's different for everyone. For me, I need to be able to be a fighter, without being 'at war.' I need to support my body, see specialists, take medicine, and feel like I'm supporting my body, and not trying to destroy it because it contains something that hurts me. I've got multiple mental illnesses, I've spent most of my life hating myself, it's very natural to hate myself because of other physical illnesses. But what I've learned after like, a long time living with PTSD and other things, is that self-acceptance gets you a lot further than self-hatred, in terms of...quality of life. So for me, while I still do everything I can to look after myself, I haven't given up or just let go of treatment or anything, it's like...I just need the language to be different than the 'conquer / fight' stuff I hear all the time.

I need this body to know I still love it for trying hard, even though it makes mistakes or sometimes doesn't do things very well. That's an ongoing journey. War metaphors definitely don't help me with that. If I turn my body into a battlefield, I probably will be too busy fighting a war to pay attention to it. A lot of land gets destroyed because of war, no one cares about battlefields. It's just a place to fight to the death. My body is so much more than that. So is yours. But however you think about your illnesses, it needs to be something that works for you - not just your body, but also your mind, y'know?

It's a hard road, juggling illnesses. Especially because everyone else has their own opinion on how we should think or act, but they're not the ones walking in our shoes, they don't actually *know*. But anyway, yes your thoughts made a lot of sense, and I hope you can find ways to cope over time that help you more and more.

(And yes! We have a lot of kangaroos here! Where I am in Western Australia, in particular, as I live in a semi-rural area. We even used to get a lot of wild emus! But they're less common now. :) )
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Furrama's avatar
Furrama| Digital Artist
Your body is doing its best! 

I will hope for the best for the both of you. 
Reply  ·  
Ravenari's avatar
Ravenari|Professional Traditional Artist
It really is doing its best! And thank you, I hope for the best too :)
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PantherStar613's avatar
PantherStar613|Hobbyist Photographer
Heart Sending you lots of love. I'm very glad you can still create your beautiful art, and enjoy .. well, being you!
Reply  ·  
Ravenari's avatar
Ravenari|Professional Traditional Artist
I'm glad I can create the art and write, I'm very fortunate. <3
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Doll-Ladi's avatar
This is very moving and I was so sad to read this I really feel bad that you are going through a serious illness. You are such a talented artist. My heart goes out to you but you appear to be very brave I admire that about you. I will pray for you. Ty for sharing

Get-well-soon--1 by vafiehya
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Ravenari's avatar
Ravenari|Professional Traditional Artist
<3 Thank you, I hope you're taking care!
Reply  ·  
Doll-Ladi's avatar
You are welcome I am okay I hope that you will be feeling better soon :hug:
Reply  ·  
nakedzen's avatar
nakedzen|Hobbyist Writer
This post is so meaningful. Thanks for giving us a glimpse of your experience. 
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