Waiting for Normal

There’s a loneliness that comes with cancer.
Something that is difficult to convey to those who have not seen its sheer unforgiving devastation first hand.

The angel of sadness sits on my shoulder everyday.

Sometimes I walk around the supermarkets & shops wondering if I should just tell people that my son has cancer & that is why I look so sad but of course I don’t do that, because that would not be normal & right there is the problem.
We had “normal” & I often used to think “what is normal anyway?”
Now fate has pushed the emergency stop button & I am floating around in an unpredictable, unfamiliar world where any type of normal is yet to be established.

I had no idea that my life was the precursor to such deep shock.
The kind of shock that stays with you all day everyday, constantly prodding & poking.
The kind of shock that you have to learn to live with otherwise it will crush you.
The kind of shock where your normal is being grateful for being able to leave the house to go somewhere other than the hospital. A shock where you delight in the pure magic of watching your small child after months of rigorous treatment finally be able to eat an ice cream in the park; where the tiniest things are amplified to a level previously unknown in the world of what was once normal.
But mainly the kind of shock where you can’t believe your child is still alive & that there was a point where you actually might have lost him forever.

As I sit & write this my hands are shaking & my heart is beating so hard I can hear it…this is my normal. This is my physical state pretty much everyday.
I am outwardly functioning but inwardly I am in the most indescribable turmoil I have ever experienced & it hurts; it burns; it grabs at you; it taunts you.
Cancer is a weight so heavy to carry that there are days when I wonder how much longer I can bear it. I have been given the biggest boulder to carry & I’m not sure if I’ll ever get the chance to put it down for the tiniest moment.

When you’re the type of person who thrives on routine, familiarity & a comprehensible amount of certainty, cancer comes along & forces you to live in the polar opposite zone. It makes you face everything upside down. You don’t know what each hour will bring.
I normally process really difficult things on my own, but cancer doesn’t give you time to process; its ugly aggression makes you wait out every hour of every day…relentlessly.
The uncertainty is tinged with tiny moments of hope surrounded by huge chasms of fear.

As time goes on, I learn more & more about this dreadful disease. All of its various guises & mutations, all of its seriousness & near misses. The reality is that we very nearly ran out of time but fate thus far has not let that happen. There will never be the words to explain my relief on that one aspect alone.

Thus far, whilst this experience has been & remains to be completely & utterly horrific, it has also brought an undeniable amount of positives. I am humbled by the constant efforts of family & friends. I have been humbled by the unwavering efforts of the incredible medical staff on Dylan’s hospital ward. I am humbled by the charities that help us cope with the mundane day to day stuff that we don’t have time to do ourselves who are quietly milling about in the background. Incredible support has come from all over the place.

There is an uncomfortable energy which you cannot escape; everyday you fight against how you really feel just to get to the next stage…whatever that may be.

I have been writing about this world I now find myself in for a few months & today I feel ready to share.

This is my story of my little boy’s cancer, B-Cell Lymphoblastic Lymphoma & its impact…

3 thoughts on “Waiting for Normal

  1. This is intimately powerful reading. You write superbly – it’s clearly straight from you, no filters and nothing ducked, and utterly clear-eyed. Thank you for sharing it. I’ve never experienced cancer in this way, apart from my grandfather when I was 12-ish, so I can’t begin to imagine what this must be like…actually, now I’ve typed that, I think I CAN imagine it. You’ve brought it into focus in all its horrible intensity.
    No-one told me what was ailing my grandfather or how ill he really was – not him, not my Nan, not my parents. It was just “Pa’s ill again”. I think it was partly a generational thing, something that just wasn’t discussed openly (depressingly British, I know). But possibly also, even if subconsciously, it was a desire to preserve my own ‘normal’ for me, as you’ve described your ‘normal’ here. They couldn’t have that normal, but maybe they realised that I could and wanted to preserve it for me. Maybe that was also part of their own ‘normal’ that they could protect. I’d never thought of it this way until I read your blog post, and possibly I never would have done. So you’ve opened my eyes to what they were experiencing, and what they maybe wanted to protect me from while the cancer ate him up piece by piece with its relentlessly unforgiving voraciousness (you nail it when you call it “ugly aggression”). You’ve given me insight into my own family by sharing something about yours, so thank you again for that. I know it’s an awful cliché to talk about someone in your position being brave, and I imagine you hear it a lot (which is evidence that it’s true). But I do want to say that it’s no small act of courage to confront this experience and its effect on you so openly, and to articulate it like this, and then to share it on a blog. I do think you’re brave, which means your son is stronger for having you there. Thanks again. MFH

    Liked by 1 person

    1. Thank you so much for your words & for demonstrating the power of sharing. In writing these posts I hope only to enlighten & educate, not just about cancer but also about the depth that life brings. By being open & honest I believe that I give both of my sons the strength to see what really is. This is horrific for all of us but even in these dark shadows there is so much good from sources we never knew existed. Your thoughtful & eloquent reply being one of those good things.
      Thank you again
      Siobhan

      Like

  2. Apologies – I hadn’t realized you’d replied. Thank you for the reply, your words are lovely as always. And thank you for saying my reply was a good thing. I see what you mean about openness and honesty giving your boys the strength to confront what truly *is*, though I hadn’t thought of it that way till now. I’d had a (possibly simplistic) idea that strength gives strength, if you see what I mean. I still think that’s the case, and it sounds as though your unflinching, but also flinching, way of facing this transfers something of that essence to your son…that’s to say, I think children look to their parents for cues on how to handle things, and your staunch confrontation of what all this horror entails, but also your willingness to be open about its effects, is what they draw on, I imagine. Like I said, they’re stronger for having you. Thanks again for sharing. MFH

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