A year ago today I had absolutely no idea I’d be writing an article like this. I had a lovely, balanced life. I still have a lovely life, but a radically different one. It all changed in that one moment when I was told that I had cancer.
I was absolutely devastated, and stunned beyond belief. I asked myself, how could this be? Why me? What did I do wrong? I hadn’t been ill. I looked and felt well. I had a huge sense of disbelief. In that one moment it felt like my future had come to an emergency stop; my hopes and dreams were completely shattered. My life changed more in a split second than I could ever have imagined.
After a short while, my pragmatic self kicked in and I was overwhelmed with a sense of urgency to get on with treatment. I knew that my ‘plumbing’ would be different, but I thought I’d soon be back to normal and have my lovely life back. How wrong I was! Little did I know what was ahead and how completely different my life would be. Every aspect of it would be affected.
My treatment plan involved a course of chemotherapy, followed by major reconstructive surgery. I received a lot of information about the physical effects of my plan but I was totally unprepared for the emotional trauma of having cancer treatment in order to save my life.
After my treatment finished, I didn’t feel the same person as I had before the diagnosis: my self-confidence had withered. Gradually the support – professional, and from family and friends – reduced and I felt panic and apprehension that I was facing this next part alone.
I cried a lot, I became easily distressed and I was extremely frustrated at being in this lonely place. I contacted the local Macmillan team, who were and continue to be absolutely incredible. They referred me to a counsellor, who completely got me. The counsellor explained that being diagnosed with any serious illness is a massive shock to the body and mind, as we are reminded of our mortality. I felt so reassured to hear this as it validated all my feelings in one go.
She also explained that we can exhibit childlike behaviour at times like this, when our security is threatened. That was music to my ears – I was indeed behaving like a toddler. I wanted and needed regular praise, reassurance and attention. In my early years I would hide from difficult situations, but here there was nowhere to hide.
I realised through my counselling sessions that I was grieving and that I needed to allow myself the time to do this. I tried to tell myself to show self-compassion and that I was doing my best. As my counsellor described it, my train had been derailed. I have had to learn to stop assuming that my life would get back to normal, because my normal has changed and I have changed. My priorities have changed. I have had to learn to recognise and acknowledge my vulnerability. I have worked on my new identity so I know who I am now and not who I was.
I have realised I have experienced many losses and that I need to allow myself time to grieve. I’ve lost body parts, body functions, self-esteem, financial stability and security, to name but a few.
My physical needs have changed; they are almost unrecognisable to what they were. My personal care involves constant management of bodily functions with catheters, bladder washouts and needing always to know where the nearest toilet is. This is relentless.
I was and still am determined not to be a victim and not to be determined by the cancer. This might sound easy but it is far from that. I feel like I’m riding on a wave. Some days it was and still is all too much and I have to dig very deeply for the tools to stay afloat in the choppy waters. I often feel hurt, angry, bitter and resentful when I reflect on the events of the past few months, but these days are getting less.
I found it hard describing to myself my relationship with cancer. I’m not a survivor (yet!) and, equally, I’m not a sufferer now, so I describe myself as a cancer experient. I know there is no such word but it feels right to me.
The future is uncertain, as it is for all of us. I saw a post on Facebook describing cancer as like having a gun held to your head and that’s exactly how it feels. I am learning to live with the uncertainty yet not to live my life in fear.
The road to recovery, both mental and physical, is long but I am progressing slowly. I know I will find my new destination or I will meander along where the train takes me. I believe trying to understand myself and then others is hugely important. Looking after myself continues to be essential. Counselling has helped me remain grateful for everything I have in my life, and it’s given me the courage to face the rest of my life, whatever it holds, with integrity.