Nothing could have prepared me for the grief…
I ‘celebrated’ 10 years. This huge milestone making it to ten years after a traumatic terminal diagnosis.
Stubbornly figuring out this disease every single day since.
Every cancerversary has been a mixed bag, but I became an expert. Unfortunately, I learned how to navigate the big emotions, the rage, guilt, fear, joy, relief, and gratitude.
I was programmed to believe such a milestone couldn’t exist. It wouldn’t exist. Like so many other things, I proved them so very wrong.
But at what cost…
This specific measure of time came loaded with every challenge we’ve ever had to experience, hard fast and all at once. I honoured and celebrated those times that led us here…
But I am still grieving every version of us that had to
I am filled with a longing to feel understood. To give my grief a home. But the more years that pass, and the complexity of my story grows, I feel incapable of expressing it at all.
And my inability to heal out loud fractures the connection that’s driven me for the last 10 years.
But right now I see that amount of time and just go, woah. That really hurts.
Here’s a tough truth: When you’ve been through the trauma I have, there is no way around suppressing emotions. It’s for my literal survival. Facts.
I do not have the privilege of slowing down and feeling each time I encounter a big emotion or life event. My body reacts physiologically to stress, and whether I heal out loud or suppress it, I have to make calculated choices in the moment. So I do what I need to, and feel what I can, and heal when I’m able.
This isn’t a badge of honour. I’m not proud of it. I wish I didn’t have to. I get so used to doing it – I don’t recognize when I’ve disconnected.
I have had to become incredibly self aware. I know when I am overwhelmed. When I have too many hormones circulating. I know when I need trauma work. When I’m too triggered or medically burnt out. I know what I need to do, to plan, how to get ‘back’ to my self.
But I’ve gotten a little too good at it.
Masking, disconnecting, downplaying symptoms, minimizing pain, jumping ahead too quick. Having to be too self sufficient, (withdrawn) and closed off from vulnerability.
It’s no surprise – it’s difficult to stay so open when you’re already so exposed. Instinct is to keep safe, so I began tucking my feelings away, a little deeper each time. Doing what I needed to survive the next blow.
I got rocked by the ten year mark, this super loaded milestone. I don’t know any human who could have processed all that in one singular moment.
Especially while having a whole new cancer to deal with. Which I will say – took from the magic of my milestone. It robbed me of my long awaited and deserved stability. And it honestly broke my heart into a million pieces.
But that’s a whole other story.
I don’t ever write and publish a blog in one sitting. I carefully proofread, make edits and adjustments. Tonight I am sharing in real time because I know I might close off again. Which is fine, but I really want to share this.
To acknowledge all these parts of us that did what they needed to do. How they adapted and became so resilient and magical and beautiful and capable.
I want this milestone to exist for all of the incredulous miracles woven into it. All of the sacrifice, love, courage, pain, tears, grit, hope, advocacy, research, connection, prayers, ALL of it.
It deserves to be recognized and felt for all that it is. Not just the parts I choose to share and curate making it more palatable. I’ve learned that all of our parts are good parts.
It’s weird to never have an end to anything, a medication, a treatment, a symptom, I grieve the ongoingness of it. Ten years.
I stay stagnant with the same disease(s) – and I add the years of duress it causes to all of my eco systems.
This past year I have joined a local wellness centre for people who are actively in treatment with cancer. For me, I’ll never not have cancer. Every day I am ‘treated’.
So I get this little bonus of these incredible support groups, which I didn’t think I’d vibe with. But has become my favourite part of going. Each special person giving me space to get here.
When it came time to introduce myself, it’s at that moment that I go – what the actual F. How do I … where do I even begin? How much do I say? Fuck fuck fuck. I will take up all the time. Do I even bother?
I KNOW my story matters just as much as anyone’s, I know that. Even if it’s long. Even if it’s complicated. And in the same breath, how do I do this?
But no matter how quick I spoke, how nervous I was, whether I masked or not, whether I made sense, everyone listened. They held the perfect amount of space.
After 10 years when I’m invited to share my story in any capacity, I’m exhausted just thinking about how.
Just the first misdiagnosis alone, heart attacks, stroke, bleeding out and dying on the table during surgery, my tumor rupturing, lessons learned, medical gaslighting, mistakes that led to my terminal diagnosis, that’s just the BEGINNING. Where pheo vs fabulous was just a baby being born.
This past year I’ve feel like a fractured version of myself. I want to be me, Miranda, ‘fabulous’, but I’m always going to be pheo as well. It IS part of my identity. It’s not possible to do this for this long and not face that truth.
Born to just be a fabulous girl. Forced to be an adrenaline filled baddie that refuses to accept the CRUMBS we are given as rare disease patients. PERIOD.
This milestone symbolizes so much strength, so much good, and SO much groundbreaking progress we’ve made for the community. It’s my honour and I believe my purpose.
And in the same breath it taunts me. I can hear myself saying we are more than a diagnosis, more than any prognosis…
Yet it’s filled with the weight of it all wrapped into one. What we’ve had to do to get here, and stay here, and I feel that in my heart, heavy on my soul.
You become so desensitized. You feel like you’re complaining. The space to voice it feels smaller. You become alone with this grief, because it feels burdensome to ask others to carry with you.
After-all, it’s been 10 years.
I have and always will use my blog as a space to share what it is to live with metastatic pheochromocytoma and all the secondary things that have come up over the years. My blog exists to talk about the stuff that makes no sense. It was created to feel understood in a world that isn’t built for rare disease.
Ten years has me feeling rightfully tired. I deserve to feel tired for a sec.
I’m tired of celebrating surviving. You and I deserve to do so much more than that.
Without a plan, strategy, or preparedness. I’m just giving myself permission to feel it – for all that it is.
The good, the bad, and the fab.
Miranda, ‘pheo vs fabulous’ 
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