‘Dear dear! How queer everything is today! And yesterday things went on just as usual. I wonder if I’ve been changed in the night? ‘ (Alice In Wonderland by Lewis Carroll)
I have fallen down the rabbit hole twice. I call it ‘The Alice In Wonderland Effect’.
I have a somewhat overly active imagination (why would anyone ever dangle their feet out of the bed at night?) and as a child, stories like this classic imbedded themselves in my mind and I would imagine being so small I could fit in a bottle and day dream about joining the chaos of the mad hatters tea party. The initial irony of feeling like a child again after a cancer diagnosis, no matter what your age, only echoes how important it was to me, to compare the whole thing to a simple bedtime story. You feel so vulnerable. The need to simplify, to make it basic, familiar, easier to understand becomes vital to your entire sense of self but I also began to draw many parallels between real life and this particular story.
There I was, minding my own business, innocently (or not!) getting on with the wild and exciting twenty something life, where my biggest concern was what to wear on a Saturday night, and all too suddenly that ticking (biological) clock starts resounding in my ears. I think, if we are honest, it’s subconsciously ticking away in the deep recesses of most twenty something women but gradually just gets louder and louder, as we get older and older, and just as the white rabbit rushes past and pulls out his pocket watch anxiously exclaiming ‘I’m late, I’m late, I’m late.’ No sooner had I started to realise I wasn’t getting any younger, then came the diagnosis and down I fell.
And just like that rabbit hole, nothing is concrete. Nothing is stable. You are transported to a parallel universe and while life continues for others, yours is flipped upside down, inside out and back to front. You can’t grab onto anything solid. It’s like a giant pause button while everything just floats around you; career, relationships, fertility, financial independence, identity and image, all abruptly stunted and suspended in time when really, life should be exciting, crazy and fast paced.
The drugs, like the bottles and cakes Alice keeps drinking and eating, with inviting labels saying ‘Drink Me’ or ‘Eat Me’ and offering hope of an improved condition, in reality just make you feel worse than you did before; small and helpless one minute and then sumo sized and down right angry the next.
‘Come, my head is free at last’ said Alice in a tone of delight, which changed into alarm in another moment, when she found that her shoulders were nowhere to be found: all she could see when she looked down, was an immense length of neck..’ (Alice In Wonderland by Lewis Carroll)
One minute you are up, the next you are down. Predictability is non-existent. There are simply no straight answers and though you are guided and supported by your Cheshire Cats and amused and enlightened by your Mad Hatters, you live in a state of confusion and anxiety. The effects cancer has are limitless. You get to the top of one hill to be faced with another, be it physical, mental or emotional. Like Alice, the shower of arrows from the Queen of Hearts deck of cards, keeps coming and you find yourself more exhausted from trying to dodge them than from fighting them.
Having experienced it twice, I can honestly say, the outcome is the same. Each time I have fallen, I have eventually landed back in real life, after treatment, with a huge bump. The crazy thing is that I actually got used to living in Wonderland. I became used to the madness, the obsessive chasing of the white rabbit, the amusing advice from the Cheshire Cat. I surrendered to the Queen of Hearts; ‘Off with her head’ simply translated as ‘Off you go’ for another session of chemo/radiation. Then, it’s finished and in real life, the insane safety of that blanket of madness is snatched away and people start to assume you are back to ‘normal’ but what the hell is ‘normal’ anyway? Wonderland can have a lasting effect on you and continuing on with my life, after visiting twice, has proven to be yet another challenge.
Its only now that I can relate some of my experiences and talk openly about living with the imprint of ‘Wonderland’ and the effects it is having on my life, and my families, as I travel further and further away from diagnosis. It pays to be honest and from my current standpoint I feel I can write from a more objective point of view; about fertility, going through treatment with a toddler, trying to maintain a twenty something lifestyle while bald and bloated, having radiotherapy in what felt like gods waiting room and the hideous side effects of a drug that I know I simply can not live without. Sometimes reflection makes me sad and sometimes I can relate to events with humour and satire.
I am so excited to have set up my own blog and contribute to this worldwide forum, writing alongside other inspiring, amazing and brave people. It isn’t another planet, we aren’t another race but we are a unique group who, like Alice, are given an unexpected view of things that can shift and alter our outlook on life and all it continues to throw at us. In my mind the idea of acceptance is too much of a pressure for a patient to bear but maybe we can help each other find some level of adjustment as we tread cautiously along this new path. However we all feel, as we continue our journeys, and with whatever ‘tools’ we choose to help, the subject of cancer and all its tentacles of having it at any age, are just ‘curiouser and curiouser’.