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Living with cancer - my thoughts...part 1

I realise that writing about cancer on my website designed for children's books is most likely out of place, irrelevant and perhaps unnecessary. The urge to write however is strong and nagging…perhaps it is for my own therapeutic purpose or perhaps I feel the need to share. This is of course raw, and it is not written to impress or inspire or for pity…simply to know.

The stampede of thoughts that trample my mind need to be contained, collected, expressed and unloaded. This happens regularly, usually late at night when the quiet creeps in and waits for reality to be acknowledged.

The reality is I have breast cancer. Not the type that is grieved, treated, survived and hope restored. I have the type that wants to play a nefarious game. It has wandered off from its original source and re-emerged in my lungs, attempting to lure me into its power and fall into a chasm of fear.

It is incredibly difficult to describe the wave of emotion that comes when you are informed, that according to all medical knowledge and statistics, your cancer is no longer curable and you have only a few more years to live. I had always been told it was likely to return, but I still wasn’t prepared for the overwhelming and desperate magnitude of disbelief. The initial fear assaults your mind to the point where numbness is the only retreat.

This prognosis is not just about me, it extends to my family and friends but most of all to my son. He is in the prime of teenage hood. ‘Young adult’ is a term not too distant, but his personality and character leans more towards the young. In fact, whether it has something to do with him being on the Autism spectrum, or having anxiety issues, but he is most definitely an innocent. In these days where kids are bustling and positioning to be heard above all else, the idea of anyone being innocent is rare. But he is. My job, not just as a mum, but as his mum, is to protect and prepare him for his world – with or without me. The conversation with him, explaining that the cancer had returned was brief. I did not elaborate on explaining the worst. He did become somewhat emotional, but his reliance and trust in me being okay was strong. Life as he knows it can continue without too much disturbance…for now.

I am very aware that having a chronic illness can become quite one dimensional. Whilst I state quite clearly and fiercely that I am not cancer and it does not define me... , I still dread that I will eventually become monotonous and tedious to those around me. The cancer topic is never too far away, the elephant in the room and the source of great concern, sympathy, empathy and pity. The truth is, I am not the life of the party anymore and as much as I wish that it doesn’t occupy my life daily – it does. I wake up with pains in my arm and my one breasted chest from the weight of surgery and the ever present lymphedema. My fingers and toes constantly tingle and ache from neuropathy, I fumble with zero fine motor skills, my hair is full of bald patches, my fingernails are flimsy and painful, my eyes watery and nose bloody from constant treatment. This is not a complaint – simply reality. The pragmatist recognises that whilst these side effects are unfortunate, ‘you are still alive so it is better than the alternative’…Yes of course! I have heard that often and it no longer affects me. Cancer seriously teaches you a supreme perspective...appreciation and gratitude are prominent emotions, however there are times when I hear complaints of bad haircuts, sagging boobs, and wrinkles that I allow myself a sigh.

These are just physical ailments however, and I can cope with them, but they do contribute to a lack in confidence. They are a niggling reminder that my vitality and enthusiasm for life is being tested. What about my dreams for the future? To watch and nurture my son into adulthood, to travel, to renovate, to write, to smile, to love, to live.

Before I was categorised ‘incurable’, my view on this whole nightmare differed from now. I understood the various types of cancers, the colours we label them, the honour in surviving, comradery of those affected, the significance of milestones, and the attention that comes your way. My wig was replaced with scarves and hats, not only for comfort, but perhaps subconsciously as a statement. I had cancer and I didn’t care who knew – in fact, maybe I wanted people to know (and lets face it, by writing this, I still do). Maybe this was the time in my life when I needed a break. I needed people to take control, help me, and feel for me.

I used to feel annoyed by comments like ‘we all have to die of something’, or ‘no-one ever knows when they will die’, or, ‘you are so positive, if anyone is to survive this, it is you’. I would notice how often the word ‘positive’ was used and for some reason felt irritated about that. Having early detected cancer, whilst life altering and very significant, didn't mean I knew anything. Now is very different.

Now I understand there are really only two types of cancer. The type that is curable and the type that isn’t. Nobody dies of stage 1 cancer. I may have felt scared and fearful when first diagnosed, I experienced physical challenges and my strength tested, but I didn’t know the desperation and utter disbelief in the words that cancer is now terminal and I would never be cured. The thing is, those who survive, most likely do nothing different to those who don’t. For all those who are joyous in victory, are those who are facing their mortality.

I now chose to wear a wig. Perhaps not deemed to be a very significant choice to most, but to me it means I will not let cancer overpower the way I want to look, think and feel. It is a relief to be seen as ‘normal’ and healthy, to be incognito, part of a larger community that is not dominated by cancer. It is also my way of giving cancer the finger. It is not going to do what it has planned and it will not determine the outcome of my life. It is not worthy. I now embrace the word ‘positive’, in fact I encourage it. Of course I need to be positive! It is my lifeline, my strength and my hope.

I cannot let the fear of cancer dictate my now, my future and my hope.

I go about my day trying my hardest to put cancer in its place...some days I succeed and some days I don't.

...to be continued

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