Today while walking back from the small shopping centre I thought two things:
How grateful I am for having my “sarcoma” buddy to talk to (I also let her know this as it matters when we express our appreciation and not just assume someone knows you are happy to have them in your life)
How I have not journaled in along time. I just poured myself into columns, but essays and notes mostly (even though I am virtually invisible there).
I guess when I was still in the Valley I felt life was full. Full of early rises, serenaded by birds on my way to the outhouse. Yes, I used to have my first cup of coffee and read, or write, on the phone on the loo. With the door wide open, because frankly who on earth gets to pee with an unobstructed few of Transylvanian forests? The puppies would be waiting for me by the garden fence, that separated their playpen from what was meant to become an edible garden. Something of a small food forest. I felt alive and felt eager to share the events of my days.
I don’t any longer. I journal for myself, 4 or 5 sentences daily for a little self reflection. But that’s it.
I intend to head back there, to the house in Valea, in May. I still have no idea how. I will need a car and travel money. I need a small miracle to pull it off, but I keep it in my mind’s eye constantly. It is not that I am in a rush to get back. Not at all. I actually dread it. Thinking about ties my stomach into a knot so tight it starts pushing breakfast back up.
All I can think about now, are not the forests and the bird song, or the bizarre coziness of my tiny shack outhouse, but the graves of all the pets buried there. And how I must get the mower out to free the graves from the weeds. Carry more rocks from the river. Pick some wild flowers for them.
Muki’s grave the last day I spent in Valea (the last of 8 I buried)
I cry on and off, but the tears are shallow and the moments I allow them to flow are brief. I am still compartmentalising, delaying my mourning, as I don’t feel I am in any way on steady ground. If I let grief wash over me now, I will drown.
I am hoping the road trip there, accompanied by my cousin, will be enough preparation before we arrive. But what am I supposed to do once we are there? If I can’t bear living in it, I have to sell the house. But if I can’t bear to part with the pet graves, then how can I sell it? What the fuck am I going to do?
Sadness fights rage over space here. Or call it despair.
There is still time. First things first I can hear Zsolti say (a friend who I left behind in Transylvania) and I imagine the foolish grin on his face while saying it in his best Bugs Bunny imitation.
So, first thing tomorrow is pack up stuff and pets and head for Valthermond, where my friend and former death doula and her husband await us.
I am seeing it as a two week workshop, an advanced and condensed course in how to handle life and death, and come out with something constructive to offer to others. Something like that anyway.
I am also bringing all my notes on a fiction project I have been working on for over a year now. The writing peaks and crashes, according to the way my life unfolded in that period. I wish I could say that I have come a long way since then, but I won’t. Firstly, because I would be lying. What was supposed to be a reset and a period of rest and recuperation became another cancer circus. Fuck me. Secondly I am done with the space time continuum. No more journeys from now on. Quantum leaping only.
Ironically I have been studying the hero’s journey in stories intensively. I will reserve it for fiction only.
A change of scenery can be refreshing and I understand why people feel they have to venture out in search of themselves. But if you pay close attention to many stories, the healing journeys like Paolo Coelho’s The Alchemist or the documentary The Last Shaman on Gaia TV, you will notice that apart from “journeying” they have something else in common. On arrival they draw the same conclusion: what I was looking for was there all along, either right in front of me, or inside me.
You don’t have to go anywhere. You could discover that in your own backyard, or the comfort of your living room. Or not?
If what we need to be healthy, whole, happy, and fulfilled lives inside us all along, then why are we so obsessed with journeys? I have cancer and the next time someone says cancer journey I will scream. My mother calls everything a “process”. Even though I am constantly processing everything, or shelving it for processing at a future date, I am not liking that either.
The word “journey” gets thrown around so much that it starts to feel meaningless—or worse, exhausting. It implies some grand adventure with a destination, but when you’re dealing with something like cancer, it’s not a trip you signed up for. Maybe we’re obsessed with journeys because they make struggle feel purposeful, and organised. Like there’s a neat beginning, middle, and end. The way a tour operator would plan a trip, or the way a screenwriter writes a script.
But real life isn’t a tidy narrative. Sometimes things just are, and you have to deal with them however you can. Sometimes I don’t want to deal with anything, and just cuddle the cat.
Next time I see or hear “cancer journey” I may scream. Or roll my eyes. Or tell people, “This isn’t a journey, it’s my life.” I am still on the fence though, when it comes to purpose and meaning. “A trip I didn’t sign up for…” What if our souls do sign up for these “trips”?
Then maybe the challenge isn’t just something random or unfair—it’s part of something bigger, even if we don’t understand it yet. But that idea can land differently depending on how I am feeling. Some days, it is comforting to think, Maybe my soul chose this for a reason—maybe there’s something here for me to learn or transform through. Other days, it just feels like, Screw this, I want a refund. Both are valid. What if everything, literally everything comes down to choice. What do I choose then, right here right now?
I struggle with faith, and with confidence. It makes it hard to decide on next steps, let alone plan an entire life “journey”.
I do sometimes feel that with having a cancer so rare that the odds are smaller than winning the lottery, the universe now owes me a lottery win too (a little like the refund). That seems fair, no? If I got hit with those crazy odds, the universe should balance it out with a jackpot. Even the nurse at my last PET-scan ordered me to get a lottery ticket.
Every month I buy a ticket, because honestly, if anyone deserves a cosmic refund, it’s me. Yet, I also know life and whatever shitty trips the soul signs up for, it has little or nothing to do with what I, or anyone, deserves.
“Does the thought of it being rare make it feel more isolating, or do you ever feel like there’s something unique about your experience that gives it meaning?”
I think when it comes to things like cancer all cancers suck. This one just sucks a bit more because there is no known cure yet (if it is what they suspect it is). That “yet” at the end of your sentence is doing a lot of heavy lifting. I want to be around long enough in case solutions are found. But how much am I holding out hope for new treatments, and how much of it just feels like an exhausting waiting game? Maybe I want to be around long enough, so my body heals, and I won’t need any treatment.
Someone recently asked me: “How has your perspective changed over the years? Do you feel like you’ve found ways to live with it, or does it still feel like you’re constantly in fight mode?”. Circling back to the journey, I think I have been in flight mode… I keep running away.
It has been a wild ride—going from an expected outcome of not surviving to a spontaneous remission, and now this uncertainty again. It has been frustrating as hell to have a mass show up but no clear answers. When even the oncologist doesn’t know what to do, I am just stuck in limbo. I have spent time there before, and it is not the place for permanent residency. It really isn’t.
Home is the place where you feel you can finally stop running. When my first attempt to create a home for myself in Oarba, another village in Transylvania, were railroaded by burglaries and bad building, my therapist and friend said; It is almost as if you are repeating the process of cancer, the way it unfolded in your body, on the outside. It is all about feeling, or being, safe. Either in your home, or in your own body.
I never managed to create that safe and nurturing environment for myself. Valea was the extreme escalation of that. Getting out felt like a new start. Hospital, tests, cancer, and uncertainty don’t exactly offer me that clean slate, that fresh break I was praying for. Some days I think I can love my body back into remission. Some days I am terrified. Some days I want to give up and sleep. Some days I want to die right now so I can be free. Some days I want to live forever. I have to start by coming home in my body. Being my own home.
I am holding too many truths at once, and none of them cancel the others out. Some days, hope feels possible. Some days, the weight of it all is unbearable. And some days, it’s just exhaustion—physically, emotionally, spiritually. I don’t think there’s a right way to feel about something of this magnitude. I have already defied expectations once. My body has baffled doctors before.
So I bought a fluffy pillow case, that matches the yellow bedspread I got from a second hand shop in Timisoara on our last road trip, from Romania to the Netherlands. For now it is on my bed at my parents’ house. I day dream about making the bed at the back of a van, fluffing up the dog beds, filling up a tiny pantry, filling up the tank, getting things ready to hit the road.
But no, no more journeys. Leaps only. Let’s start with a leap of faith.
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Lee, I hear you…I feel you. I’m a cancer survivor for 38 years now, doctors told me I only have 2 yrs to live the most. I’m still here and enjoying my extended life helping, encouraging, supporting people as much as I could in every way I can & now trying to give myself the proper and more love and care which I totally forget because I made myself busy for others and their needs. I did a lot of sacrifices for others, which I don’t regret and I love helping people. I am healing myself too in a lot of traumas (generational, childhood, sexual). As I read your writing I can relate and reminisced my past with gratitude. I appreciate your courage and vulnerability in sharing your life… it’s healing not only for you but for others too. I just want to share some insights here that I read before and something to ponder…Popular Holistic Cancer-Theory Insights by..
• Louise Hay, a prominent figure in mind-body healing, suggested that certain emotional patterns might be linked to specific diseases. For instance, she proposed that sarcoma could be associated with “repressed emotions or suppressed grief” or “holding onto anger and resentment.”
• Dr. Bernie Siegel, a surgeon and proponent of mind-body medicine, emphasized the importance of emotional well-being in cancer recovery. He encouraged patients to engage in personal growth, emotional expression, and holistic healing practices to improve outcomes.
I know that already doing… writing as expression of your emotions. That’s great! You are there… keep doing what serves you all the happiness in this life. Sending you healing energy, love and prayers. May the healing hand of the God of the universe touch your body and that you live more years to help and support people all over the world as you already started. 🙏💐