Holding Onto Hope

It’s been one whole year since I last wrote a blog post & eighteen months since Dylan finished his treatment, twelve of which were spent shielding during a pandemic that has affected us all. I’m only just starting to come to terms with the past five years.

Trauma loans the mind hyper vigilance which in turn hands the mind over to PTSD.
Sometimes I wonder if how I feel is real, I question whether I’m overreacting, whether it was & still is really “that” bad & then I realise…

I’m now used to living in an infinite state of unpredictability. Whilst for me the pandemic feels like a frightening short-term crisis, I know that a cancer diagnosis is a long-term one.
Having spent so many years literally living in fight//flight//freeze response, I’m now at the bottom of yet another well of complete mental exhaustion.
Dylan was so happy to go back to school properly this September. I miss him, we’ve been by each other’s side for such a long, long time. It’s the first academic year he’s been to school whilst unaffected by cancer & its effects since he was just six. That sentence alone blows my mind, let alone everything else that I’ve witnessed since he was diagnosed with stage 4 B-cell lymphoblastic lymphoma in December 2016.

I think I do a decent job of being “ok”, it’s a trick I’ve refined over the years. I remember telling a friend that if I behaved how I truly felt then I’d probably be sedated & locked up.
I remember how I used to feel pre-diagnosis. I miss it, my past existence, I miss it in my bones & I ache from every emotion that boils away just beneath the surface.
I ache from an anxiety that makes me question almost everything I do. I ache from a head pounding depression which is quelled slightly by two tiny pills I take every morning, without which I’ve realised, I turn into a complete drivelling wreck.
I ache from the worry I get every time I look at Dylan; have I missed something? Are they just bruises or are they “bruises”? Is he just tired or is he “tired”? Does his back just ache or does his back “ache”? Was he just sweating last night or was he “sweating”?
Not one thought goes unquestioned, it never will.
How much vigilance is enough?
How much vigilance is too much?
I don’t want to get caught off guard again, but I know that I might.

There’s a huge amount of complex guilt I wade through.
Guilt for not knowing that Dylan had cancer in September ‘16 (the difference in prognosis between a stage 1 diagnosis & his stage 4 diagnosis is eye watering…but I don’t live there); guilt for no longer being who I was, for how I see & feel even about those closest to me; guilt about Dylan’s survival through treatment, having met so many children who are no longer here, the pain & guilt I feel for their parents is heavy.

I fear triggers but as yet can only deal with the ones I’m aware of; when I’m struck by those I’ve yet to experience my head echoes, a numbness sweeps in, my vision feels blurred, my limbs no longer feel like they’re mine & my heart feels as if it’s trying to pry its way out through my rib cage.
It passes, sometimes in a matter of hours, sometimes it takes days; it has on occasion taken weeks.

I feel myself enter periods of disassociation & spend significant amounts of time watching myself & others from another place.
I wake up & can’t wait to go back to bed, I can sleep without feeling as if I’ve slept & I can spend nights hardly sleeping at all.

I mask the heavy pity I feel for Dylan, he can’t thrive on my true feelings which are also peppered with a perpetual and overwhelming sense of awe & gratitude.
It’s a delicate balance, to show him a version of reality whilst holding his hand as he moves forward. I’ve learnt that I have to hold my own hand to step forward and that’s a lonely place; advocating for your child is hard, advocating for yourself is harder.

I want to be carried but the reality is that I’m the only person who can do that long-term and so I cautiously move in various directions, never knowing if I’m going forwards, sideways or backwards.
I seek distraction through friends, alcohol & most recently art, I know this will ebb & flow as I find myself; there’s no manual to show me who//what//how I’m supposed to be. I wait for each day to end & then assess. Fear plagues my hopes for tomorrow.

I remember a parent in the kitchen on the ward telling me to “prepare to lose friends…because some just won’t be able to cope with what a child’s cancer diagnosis can do to the soul”. I’m lucky, as far as I’m aware I haven’t lost a single friend, I have however gained some in the most unobtrusive places. These people are my safe spaces and I am so grateful.

I feel inwardly incapable of comfortably finding my place in social situations, it requires so much energy. When someone asks me how I am I have to work out how to answer. The persistent itch in my brain tying me to cancer, what it’s done & still could do is there in every thought I have, in every sentence I speak. I hope eventually my mind calms for longer periods at a time.

I’ve learnt where people align their sympathy & moreover how they in turn align their empathy. Compassion fatigue is real, particularly after so many years of treatment & then through a pandemic.

Creating awareness of childhood cancer is exhausting but I’ll never stop talking about it.
This year I wanted to open up a bit more about how it has affected me personally. A lot of oncology parents don’t talk openly about the impact it has on their mental health, a lot of us join closed forums on social media where we feel “freer” within an environment that fully understands & will never wane.

But here’s the thing, we walk among you.

Nobody owes me anything because my son had cancer, I choose to talk about the experiences I’ve had to try to help others who sadly find themselves in my situation, to try to help them understand that they’re not alone & to openly normalise what they might believe are frightening, confusing, helpless thoughts. I also do it to help those around us, to maybe create a bit more understanding & perhaps a little less fear.
When Dylan was diagnosed it almost felt like the reality of childhood cancer was a taboo subject & yet it is the leading cause of death for children & adolescents; it is responsible for more deaths per year than all other diseases combined.

It has irrevocably changed me, I’m pretty much always in a state of shock.
Yet here I am, with all the others, smiling & waving, laughing & joking whilst
crying & wailing in fractured, broken chasms of darkness, just trying to find out where the light is & where I fit as I now am.

Stuck. Scared. Isolated.

Never not grateful.

Holding onto hope.

2 thoughts on “Holding Onto Hope

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