I’m starting to feel like I’ve said it all before, of course I haven’t said everything but it’s been nearly three years of living with Dylan’s cancer, the side effects, the knock on effects, the life altering perspectives & the complete lack of control & helplessness.
The repetition on paper of how our life has been for so long is mind numbing; the stagnant options are claustrophobic.
Each month, the same thing happens (aside from all the “extras” on top of Dylan’s treatment plan) & I feel like I find myself recounting the same tale over & over again.
The repetition of our existence within this holding pen doesn’t make the acceptance of Dylan’s cancer diagnosis any easier, this has been our way of life for nearly three entire years & for me mentally it still feels as though we are living in perpetual confinement, but in the same breath its repetition is now familiar in a darkly comforting kind of way.
Many coin the phrase “don’t look back” but it’s so difficult not to, “keep moving forward” is the phrase so often alluded to in what can only be described as searing melancholic moments. There is little choice in how we move forward, we stand on guard in this strange atrium with all the doors shut until something crops up & ushers us through them without so much as a chance to look back.
However, I am occasionally rooted to the spot by pre-diagnosis memories; a photograph or glimpse of Dylan from a certain angle takes me straight back to when he was perhaps four years old, small, full of energy, innocent & unscathed; my heart stops. I fight back tears of grief for the six the years we had before this nightmare began & for all the years this nightmare has taken away from us, tears of grief for the six year old boy who has endured nothing closely representative of what he had expected from his childhood for the last thirty five months.
I am also occasionally rooted to the spot by post-diagnosis memories; a listless frail child, bald, in constant agony, pale grey in complexion & at times physically unrecognisable; my heart stops. I fight back tears of gratitude intermingled with these heartbreaking flashbacks, tears of gratitude that thus far we’ve been granted three more years, knowing full well that we have been so close to an utterly different story.
In looking back & I realise that I’ve been through several phases of intense liminal space since Dylan’s diagnosis, each transition being separated by a hard & heavy period of adjustment, but the ambiguity of the current part of this story feels peculiar. There is yet another shift on the horizon gradually making its way towards me & I am quietly starting to admit what I can see. I am aware of a different door emerging in this restrictive atrium. It’s way too soon to open it but it is slowly making itself unavoidably apparent & I am working out how to prepare myself & Dylan for the approach.
For almost three entire years I’ve stood in this atrium, occasionally having time to look at what’s going on around me, knowing that I’m unable to participate but also knowing that in years gone by I was on the outside barely taking time to properly look in, a notion that humbles me to this day (although I know without question that unless you’ve been inside trauma you will never fully understand). From the start I have had to look deep inside myself, I have created rituals by doing my very best to adapt mentally & physically to this confining space, accepting it as my home & in a way nurturing it, making as much of it as I have been allowed, respecting its limitations & trying to find ways to simply coincide with what’s going on outside.
Every door we’ve had to pass through has been flung open often without warning & we’ve been forcibly thrust through all of them, each time thankfully returning to the atrium, the ‘place’ I now consider a kind of sanctuary.
Through all of this time I have ignored the end of treatment door, I didn’t even know what it meant. It just looked odd, unfamiliar & out of place. Acknowledging its existence was absurd in my one-day-at-a-time mind, it was easy to ignore as the hope invested in something that seemed so out of reach would have been ill-spent energy.
As the years have passed I have looked back at myself & the transitions I’ve had to make as a person as each part of this unpredictable story has unfolded; from minute by minute, to hour by hour, to day by day. Knowing that it would be a waste of time to try to make sense of any of it simply because it is in itself completely nonsensical. Knowing that as a mother I have had to leave myself in the shadows in order to wholly embrace whatever was needed without a thought for myself as Siobhan. As the years have passed I have been given very clear demonstrations of the inescapably brutal life & death moments cancer unforgivingly thrusts upon you, it’s unpredictability requires unfathomable amounts of patience.
We’re not there yet, but what felt seemingly so out of reach can no longer be ignored.
So here I am once again, in liminal space which is simply defined as “the time between ‘what was’ and ‘what next.’ It is a place of transition, waiting, and not knowing. It is where all transformation takes place, if we learn to wait and let it form us”.
The end of treatment door leads somewhere I have never been.