This tightrope stretches across the deepest abyss, into a blinding & indeterminate blizzard.
The strength needed to walk it is phenomenal; it requires constant micro managing of reality versus my mind. I feel as though I am no longer myself, I have to focus hard in order to behave as rationally as possible for my own sanity & for my boys. I feel as though I have been cut exactly in half & it hurts all the time but I cannot let it.
It is complex; it is a tightrope strewn with obstacles which arise from childhood cancer. Over the last year I have had little time to focus on the obstacles that everyday life throws up & now it seems that the smallest things can upset my equilibrium & throw me off balance. When the “everyday” problems come along, I cannot ignore them but consequently I am thrown off kilter & the energy required to realign & steady myself is immense; I just have to dig a little deeper. I then need time to recover but that is not always possible as cancer does not ever let up.
My thoughts swirl & swell all day, everyday; I have to find my own way of living alongside my son’s illness. I so am humbled by my level of ignorance regarding the world of cancer before Dylan’s diagnosis, I now live in a confusing world that I would wish upon no one. My mind & thought processes have transferred to a plateau beyond my previous normal realm of comprehension. I have to find incredible patience towards what was once fairly mundane. I know that there is absolutely nothing that anyone can say to change this situation & I know that some find it harder to say things than others, that is human nature. Some would rather say nothing at all, such is the discomfort that this unknown entity brings. I feel so deeply for anyone who looks for ways & means to lighten this load & I appreciate their efforts. However, people that truly know me or have found a genuine affinity with what I am trying to convey will be all too aware that I am before anything a down to earth realist. I deal with fact & now I have to find balance to deal with the facts that are set out before me.
The fact is that Dylan is still alive but he may or may not relapse at any time. Even if that does not happen before the end of his treatment in 2020, we will still have to see out the five year cancer “all clear” period with bated breath once his treatment ends. The fact is that Dylan’s grandmother has been struck by cancer on & off for the last twenty years & has recently relapsed, again. The fact is that I have two beautiful & very dear friends, who have in the last year also been hit by this unforgiving disease. The fact is there are no guarantees one way or the other & this is precisely why I am walking a tightrope. I cannot fall. People tell me that I am strong but I really do not feel it. I am just doing what any mother in my situation would do; I am taking care of my child. I wish that he did not have cancer but he does. People have told me that “after the storm comes the rainbow”, which let’s face it is just not true; the fact is that rainbows appear if light & atmosphere are perfectly aligned. People have told me that I “have been assigned this mountain to show others that it can be moved”, which let’s face it again is also just not true; the fact is that it is just horrendously bad luck & this could happen to anyone. I know these clichés are well intended but these sayings leave me dumbfounded & having to bite my tongue. As far as I am concerned I have been dealt a really bad hand & that is it. It is not about imaginary rainbows or mountains, it’s about uncertainty & pain. It sounds harsh but that is the reality right there.
My “daily mantra” has developed significantly over the last year. Each element of Dylan’s treatment has brought different challenges & has forced me to open my mind & soul to a vulnerability I might never have experienced. It is becoming second nature but there are days & moments where it all falls down. I am only human.
These are just some of the things I tell myself whilst I walk this tightrope :
Breathe, though it feels like suffocation.
Do not lose hope or hope for too much.
Do not fall to the left or lean too far right.
Do not imagine too little or too much.
Be mindful of others; they cannot always understand.
Be kind despite brimming with anger & despair.
Be honest, though it feels easier to lie.
Open the blinds despite the darkness.
Ignore your senses & embrace them all at once.
Be strong in the face of overwhelming helplessness.
Do not run too fast or walk too slow.
Do not think too far ahead but do not dwell too much.
Control the memories that will not leave.
Hold on despite the sensation of letting go.
Take tiny steps forwards & tiny steps back.
Look after yourself so you can look after him.
Do everything & nothing with grace & dignity.
Switch off but be present.
Surrender whilst continuing to fight.
It goes on & on…& on.
It is a catalogue of opposites alongside mindfulness & it is the hardest thing I have ever done.
To be nothing & everything all at once.
My outward persona shows very little of this to people I am not close to. I do not wish to alienate myself from anyone. It is not in my nature to tell people where to go, it is not in my nature to be uncaring about how I make others feel but I also know that sometimes I just have to save myself; doing that without looking like I do not care is occasionally hard. Particularly on the days when I really just cannot find the strength to dig that little bit deeper; or the days where I just cannot bite my tongue anymore; or the days when Dylan is so unwell after treatment; or the weeks when he is wound up like a lunatic due to steroids; or the days when I have had no sleep; or the days when something forces me stare down into that deep abyss.
It is such a fine line.
I am afraid that if I let one of these things go then I will lose it; I am afraid that if I let this thought process go then I will lose myself.
It is hard work keeping your shit together when nothing else really matters at all; but actually other things really do matter, just not as much as your son staying alive. Notwithstanding the fact that if I were to actually live like nothing else mattered then I would probably look a tiny bit mad & no one would benefit. So I work hard to keep upright. In all honesty I have no choice but to find balance; it is just so infinitesimally detailed.
The one thing I do know is that I am not unsupported on this tightrope. I thankfully have the incredible strength of Nick, my sister & brother in law & some truly wonderful friends, old & new. They have all dug deep for me; they have shown unwavering patience, kindness & thoughtfulness. Without them, this hell sent journey would be so much worse. To know that I am not alone is what helps me breathe. I can honestly say that I do not know one single person who would not rush to my side if I were to ask them for help; to me this is completely incredible & as such I know how lucky I am.
Mental exhaustion is manifest beyond description every single day & on some days it feels even worse than that. The mental exhaustion also brings a deep physical exhaustion; at times I have actually been unable to move, seemingly stuck to a chair or unable to actually get out of the car. I often shake & my legs are frequently wobbly. I do not know when it will strike, there are no warnings but I do feel physically weighed down by the enormity of this way of life. It is a surreal sensation & one I find very difficult to articulate.
Every cancer journey is different but I believe that those going through it have a quiet level of appreciation that unfortunately sets them apart. These posts are all about trying to raise awareness as honestly & as best I can. I hope it will, given time bring down the divide a little & perhaps soften the sense of isolation that I feel on so many different levels & for so many different reasons.
The balance is not pretty; it is unsparing & stark…such is the nature of tightropes.
The enlightenment I have found has reset my being. I look at what is important to me & what is not. However bad I think my life is, I know that someone somewhere is going through worse. I balance my anger with appreciation; in fact I try to balance any negativity with appreciation & moreover gratitude.
Gratitude that my son did not die in 2017.
In reality, I can only hope that 2018 brings no worse.