Why I’m Not Jumping For Joy

This end of treatment antechamber is suffocating.

There’s a vast array of permutations to navigate & it’s all just so overwhelming. I’ve tried & tried to write them all down but the plethora of emotions that each one brings to the surface is blocking my ability to communicate. So I’m going to tackle the emotions that are currently punching me in the gut daily & hopefully I can make some room for everything else.

I’m rooted to a very similar sensation of fear as I experienced when Dylan was diagnosed over three years ago; my thoughts are in a similar state of paralysis to how they were at the start. At the beginning we had no idea what would happen, how Dylan would respond; we almost lost him. Somehow though, we didn’t lose him despite the fact that nobody could believe he was still alive at diagnosis…prior to that, everyone thought he was absolutely fine even with that swollen cheek.

I feel sick writing this & just as in my first ever blog post Waiting For Normal my hands are shaking & my heart is beating so hard I can hear it; pretty much everything I wrote in that first post still applies today. I just never appreciated just how malleable the word “normal” would have to become. Life was once “normal”, then 3.5 years of living with cancer became “normal”; a very uncomfortable “normal” but as humans we seem so adaptable.

Now, as the end of treatment approaches I’m standing on the precipice of yet another “normal” & I have absolutely no idea what’s to come.

I remember at the start, so many people (medical & non medical) said “oh, he’ll be fine” or “he’s got a good cancer”; I can’t even begin to fathom that thought process. It mostly came from people who have been fortunate enough to have had no personal experience of cancer but on occasion it came from those that have & it has most certainly created fleeting moments of guilt because Dylan has made it this far & so many other children we’ve met along the way haven’t made it at all or are dealing with relapse upon relapse.

This “good cancer” terminology adds an uncomfortable indescribable pressure, I occasionally feel as though I have no right to feel the way I do because I’ve inadvertently been made to feel as though it could be worse; I know it could be worse, he’d be dead had he not had that appointment at the dental hospital in December 2016.

Yet here we are, 3 years & 3 months later.

However, to this day it seems nobody can tell me a single thing about a stage 4 progenitor b-cell lymphoblastic lymphoma diagnosis that presents with tumours all over the body & in the central nervous system, nobody.

Sadly what those “good-cancer” torchbearers didn’t know or understand is that there is a strong chance of relapse for Dylan because the ‘stage 4’ part makes a hefty difference. I’m not going all out to explain this now, I’ll go there another time. Safe to say, the “good” cancers aren’t always good; stage 4 means that Dylan is high risk & therefore in the not-so-good “good” cancer category.

On the few occasions that end of treatment has come up in conversation (be it a year ago or a week ago) a lot of people have started to jump for joy at the prospect, the “I bet you can’t wait for it all to be over” mindsets rear their heads & I always feel like a bit of a doom-monger when I don’t reciprocate their naive excitement. I’ve not really discussed Dylan’s prognosis with many people because all I wanted was for him to get to the end of treatment, which was never guaranteed & yet he just about has. So when I react with mild agreement about the supposed euphoria many expect me to feel I now find that I’m trying to explain bits I’ve not really needed to explain out loud before & it sticks in my throat.

My problem is that I need facts to keep my head in the reality lane…Google Scholar is giving me papers written in the 90’s & early 00’s…it’s not a comfortable ride; facts are scarce. I’m also all too aware that facts & statistics are just that & don’t necessarily give any individual a strong sense of what is to come.

Once I’d interpreted the horror story that was his first MRI scan the gravity of Dylan’s diagnosis got much heavier but I’m always mindful that when armed with knowledge preparation is easier. Thankfully I’m already firmly ensconced on my tightrope & I can tell you without a shadow of a doubt that I will not be jumping off one way or the other once he takes his last dose of 6mp. One side of the rope is genuine gratitude & relief, the other is abject fear. It’ll continue to be a straight down the middle balancing act; losing sight of one whilst focusing too much in the other leads to the imbalance I’ve spent the last few years trying to avoid.

For me personally, as things stand right now, I can barely remember anything, I’m not sleeping, I feel numb & apathetic towards pretty much everything except my family. It’s so complex, he hasn’t finished treatment yet but the emotions I thought I might experience as the end draws nearer have arrived thick & fast with a few curveballs thrown in for good measure.

The flashbacks are pretty unrelenting & my thought process is fairly erratic. I fall asleep in a crunched-up ball of tension only to be woken by the same dream I repeatedly had at the start (the one where I’m choosing his funeral music) & then I lie awake for hours just as I did at the start, knowing how irrational it is because I need to keep pulling myself back to the here & now. I’m tired, my body physically aches, the balance pole feels heavy & the moments of inertia are getting harder to control.

I know these feelings are “normal”, although much of these sentiments are not openly expressed outside of the closed oncology parent support forums on social media. Within those forums, we pretty much all speak the same language & I’m grateful for those outlets.

I don’t think there is one cancer survivor or a single oncology parent who doesn’t quietly fear the worst, the depths we have to take ourselves to in order to just put one foot in front of the other is almost impossible to explain; we just walk around looking outwardly like a regular person but cut us open & it’s a bloody mess of ugly turmoil.

I started out wandering into the complete unknown & that is exactly where I’ve ended up again. The only difference being that there is no written schedule or piece of paper for the next bit.

So hopefully this goes some way to explaining why I won’t be jumping for joy whilst walking this tightrope; my feet are firmly planted.