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…