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.
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(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).
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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.
