Still Waiting

A year ago today I wrote my first blog post Waiting for Normal.

It is nearly two years since Dylan was diagnosed with b-cell progenitor lymphoblastic lymphoma & I can safely say that every single word of that first post still stands.

Life has continued. Although there really is now no way of telling what is happening inside his body, Dylan seems to be doing well, he’s just turned eight & whilst his physical appearance is completely altered from this time last year (he has long hair again, he has grown much taller, he is running about…although not so much on his broken foot at the moment & he has actually managed his first full week in school this term) there is & always will be a dark painful shadow cast across my heart.

Cancer has changed pretty much every single aspect of how we live our daily lives & the year itself has been filled with the constant toing & froing from hospital not just for chemotherapy but also for all the seemingly never ending side effects that come because of chemotherapy, steroids & consequently cancer.

Psychologically I am unchanged since cancer entered our world, I have all the same if not more fears as I did at the beginning of this torrid journey.

On occasion there are days when I simply sit & wonder who I am; I think about who I used to be & whether despite previously thinking I was connected to the world I wonder whether I really was.
Was I a fraud; does Dylan’s diagnosis somehow make me more valid in this world? Does being the parent of a child with cancer make me more or less of who I truly am?
There are days when I do feel that perhaps I was a fraud; even though I thought I had the ability to be highly empathetic pre-diagnosis, the depths that cancer has taken me to are not something I could have ever imagined. I know this doesn’t necessarily make me a fraud but it feels like the most fitting term to demonstrate how little of Life I was living.

In all honesty I can’t really remember what I was like before cancer & it almost doesn’t matter; I’m still adjusting to having the angel of sadness sitting on my shoulder everyday…we will never be friends but bit by bit we are muddling along together; I have learnt that dark thoughts pass but never really go away.

Just because my child was diagnosed with cancer Life hasn’t eased up; Life hasn’t thought “Ah now, that family are dealing with some real life shit right now so let’s leave them alone awhile & start to be a bit kinder”. I have of course learnt that what actually happens is that Life continues throwing all the punches it would have thrown if my child hadn’t been diagnosed with cancer, it’s just now those punches hurt more than they might have done; put simply just having to deal with a blown lightbulb is like being kicked whilst you’re down.

It feels like Life is an extra in a really disturbing film; it’s an add-on to what is now a completely harrowing existence.

Since I wrote my first blog post, Life has taken so much away but has also given me so much.

This is my 39th post & you’d have to read all the posts in between this & the first to understand just what life is like when you have a child with cancer as well as what Life has given & taken away.

The thing is, within this dark sphere, waiting is absolutely bloody soul destroying. I cannot dress it up & it is not going to go away. I just have to try to find a way to live with it; to live in a perpetual state of waiting…to live alongside cancer.

So whilst I’m waiting to see if my child will live I need to carry on with the rest of Life because there is no escape, and whilst cancer is unforgivingly beating me around the head with a massive stick Life is simultaneously doing its best poking, prodding & pushing. The problem is there isn’t much room left in my head to deal with much of the stuff that in all honesty actually means very little to me anymore.

I am still in shock, there is still an uncomfortable energy & I am still fighting against how I really feel.

I have learnt that cancer is so blindingly harsh that in order to withstand its brutality I have had to literally let go of anything that doesn’t help me. My world has become smaller & I have found that I cling onto what I call my safe places; that is the basis of my self-care. I have learnt to become unforgivingly selfish…the phrase “not my circus, not my monkeys” has almost become my daily mantra…it really helps.

Twenty three months ago I could not see any tomorrows, today I don’t look for them. Today I see the here & now & I try desperately not to let my mind give the future a single thought; I try not to dream because hope is now such a loaded word.

I have learnt that there is no such thing as normal & that every single day is a gift. Dylan’s smile is one of the very few things in this world that truly has any positive impact on my head & my heart.

I have learnt that even though I still have to carry on with Life I will also be waiting for as long as I live.

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