Screwed Up

The other day I reread my very first blog post “Waiting for Normal”. I read it because I have had a trying few weeks & a lot of the emotions I wrote about then are still very much at play. I have spent the last week sneaking off to the bathroom to cry or going out in the car to sob as the month of May has been anything but merry.

It dawned on me that time was no longer my own & that planning was utterly futile after I left hospital for a break not long after Dylan was first admitted. I sat on the sofa at home & the realisation that life would never be the same again felt like a punch to the head; I was left reeling at the thought that any sense of freedom & spontaneity would all but disappear. Life was now on reams of paper, forms, treatment plans, hospital stays, consultant appointments & as it still seems now, even when there was nothing planned on paper the bits in between were filled with the exact same things.

In the middle of the May bank holiday Ruari broke his foot whilst playing rugby; an unscheduled hospital visit with someone other than Dylan was a bit of a novelty. He was of course pretty limited in his mobility, he was unable to put any pressure on his foot & was therefore on crutches; I had to drive him to & from school everyday for weeks & was basically waiting on him hand & foot at home (it did make me realise just how much he does for himself though).

In the meantime, May kept bringing all the fun: not even two weeks in & Dylan became neutropenic so we were housebound; homeschooling is not my speciality & after a fortnight which then ran into half term, cabin fever became a real life issue (more for me than for him). In the middle of May Dylan had his monthly chemo & steroids & just because there had not been enough May drama he then developed croup. He slowly recovered over half term & I dared to make some plans for the day he was going to go back to school only to wake up that morning to find he was covered in a rash. We had a four hour hospital wait in isolation & were thankfully told that it was nothing “serious” & it was “probably viral”, which is obviously good news but by the end of that day I felt broken, frustrated, miserable & frankly disappointed. I was disappointed because I had finally dared to make plans; plans which included me, myself & I.
Plans which basically did not come off.

The merry month of May felt like a screwed up piece of paper & every time it started to look like I might be able to smooth it out fate came along & screwed it back up into a ball.

In my last post I wrote about how I am more than a mother of a child with cancer & I still believe that…it just does not really feel like that much of the time. You think you have a bit of space to breathe & then something slams on the emergency stop button & you are back to square one. It messes with your head because you never really know what is coming or when.

The phrase “live in the moment” becomes piercingly poignant. I have to remind myself that I do not necessarily need to plan, but I can take whatever moment I might stumble across & seize it…albeit tentatively given the daily uncertainty that cancer brings. I have also realised that even if I do manage to seize a moment I can just drop it if need be. I know all of these things but the problem is I have always thrived on a plan & a bit of routine; trying to change my mindscape is just draining.

The other thing that comes into play is that I know that I need to have time alone, to be able to recharge my batteries & refuel. In my post “Running on Empty” I said that childhood cancer “is a ceaseless unforgiving cycle” & it is. Swimming upstream for the rest of my days is such a merciless prospect but it is what I have to do for Dylan so I have to find a way to balance it all out.

The 13th of next month marks a year since Dylan started maintenance (he’s got 21 months left). I thought it would get easier & it has in a way; not as many hospital visits, not as much toxic chemo, not as many fevers…not as much of all that stuff, but there is still a lot of other stuff.

What does not get easier is the psychological impact; every single emotion I have written about is still right here & every single blog post is my daily existence.

Life is conducted through an hourglass; an hour glass with no top & no bottom.

It is somewhat nomadic, occasionally stumbling across an opportunity & trying so desperately hard to not be scared to take it.

“Normal” is a word that has become obsolete.

I am still learning to live with the shock & I am still being forced to live in the polar opposite zone of routine, familiarity & a comprehensible amount of certainty.

That is cancer for you; it keeps on moving the goalposts. It is an inconvenient bastard that messes with your child’s life & in turn messes with your head.

So whilst on occasion the paper ball will unfurl, I am always on standby for when it gets screwed up again; there is just no way of telling whether my days will unfurl or be completely screwed up.

Guess what my brain feels like?

4 thoughts on “Screwed Up

  1. Amazingly relatable again. Was Mercury in retrograde in May? There was definitely some kind of higher force out to fuck with all of us Oncology Mums I think. I’m having the same battle/resistance over the fact I cannot plan. As an utter control freak this part of ‘the journey’ is the worst. Jack’s oncologist in Manchester called it ‘a bit of an inconvenience’ when he told us he’d relapsed, nail on head mate!!

    Liked by 1 person

  2. oh gosh Siobhan, you’ve give us such a clear insight into how hard it must be and compounded by not being able to do the things that would usually help you to feel less screwed up in an emergency. It must be rough for all of you and the treatment plan time frame sounds agonising. Keep writing, it gives you something you can control while the rest is uncontrollable.

    Liked by 1 person

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