Thursday, 5 May 2016

Just run with it ~ Caroline

It’s OK to not be OK. It’s OK to ask for help and to accept help when it’s offered, without feeling like a failure. It’s OK to be angry. It’s OK to scream, cry and ask why me?

I did none of these things, at least not initially. Instead I laced up my trainers and did what I do best.  I ran. I ran on beaches, through the countryside, on the London pavements. I ran on my own, with only my thoughts for company.  Actually that should be thought……I have cancer, I have cancer, I have cancer, there wasn’t any room for anything else. 

How ironic. Me. Marathon running, non smoking, healthy eating, skinny me. People like me don’t get cancer. We live till we’re 100 and die in our sleep - at least my lifestyle choices were made with that goal in mind.

I wasn’t the first member of my family to be afflicted with the disease. 18 years previously my uncle had been diagnosed. Yes men can get breast cancer too.  He found great solace and support in the charity Breast Cancer Care, and went on to become one of their volunteers, fashion show models and committee members, a role which his wife also adopted enthusiastically when she too was diagnosed 10 years later. So when in 2007 I decided I wanted to run the London Marathon, raising money for them seemed an obvious choice. Little did I know that 7 years later I would be the one calling them for help and advice.

Fast forward to 2014. I was 36 years old, my children were 2 and 5. I had a job I enjoyed, was happily married and above all was extremely fit. Life was good. Until all of a sudden it wasn’t.
The weeks that followed my diagnosis were surreal. I didn’t look ill, I didn’t feel ill, so how was it possible I had a life threatening disease?

I am a medical professional but I didn’t know a great deal about breast cancer. A family friend had had it when I was growing up, and sadly died whilst her children were still young, so of course she immediately entered my mind, regardless of the fact that my aunt and uncle were both still alive and well many years after their treatment ended. I looked at my children and thought of not seeing them grow up, not seeing my grandchildren should my children decide to become parents one day.

I approached this chapter of my life with my usual pragmatism. I just got on with it. People use words like fight and battle but the reality is you just do as you’re told. Go here for a biopsy on this date, you’ve got a CT scan on this date, a pre op assessment on this date, surgery on this date (actually I delayed my surgery by a week so I could go to a friends wedding). You have to accept that your life is no longer your own, your life belongs to cancer, because cancer dictates your daily routine.

I continued to run every moment I got. I had been signed off work at my GPs insistence, who told me my full time job for the next year was being a patient. Sleep had become elusive due to anxiety, so I was on sleeping pills which left me feeling drugged. I spent many hours in hospital waiting rooms but couldn’t concentrate enough to read a book or a magazine. Instead I listened to Passenger on my iPod - 'Life is for living, so live it or you’re better off dead' over and over again.

As a species human beings have an awareness of death from an early age. We all know that death is inevitable, what we don’t know is when or how. Most of us don’t dwell on this fact and it wasn’t something that I really thought about until faced with my own mortality. The reality that I really might die came crashing down on my husband and me in a grotty consulting room in an east London hospital one June afternoon. We were there to get the results of my lumpectomy and sentinel lymph node biopsy. Instead of the usual 2 hour wait we were ushered straight into the room and told the bad news. Not only had the cancer spread to my lymph nodes, the margins for my lumpectomy were insufficient. This meant a number of things. I needed more surgery, I would almost certainly need chemotherapy, but there was also a risk that the cancer had spread beyond my lymph nodes and metastasised, which would deem it incurable.

I had 7 days to wait, not knowing my fate. In that time I had bone and CT scans to look for signs of spread. Despite being advised not to run for 3 months after surgery I ignored my doctors and ran anyway. I still didn’t look or feel ill, my surgery site had healed well and I needed to pound the pavements for my sanity. 

For that week I lived in a parallel universe. Life continued as normal around me, whilst I existed in my cancer bubble. Back in the hospital waiting room, my mind couldn’t comprehend the enormity of my situation. As my name was called the short walk to the consulting room felt like a marathon. Finally after what seemed like an eternity I was told the scans were negative, treatment would still aim for a cure. I was not going to die, not yet, anyway. I felt numb but quietly relieved.

5 days later I had a mastectomy and the remaining lymph nodes removed from under my left arm. Surgery was uneventful, although this time I knew my running shoes would be remaining firmly by the door for the foreseeable future.
Fortunately I had a backup plan in the form of my bicycle.

Chemo started in August and it completely floored me. In my usual blasé way I totally underestimated the effect it would have.  However I knew the effects were cumulative, so I was determined to make sure I was feeling as normal as possible before the start of the next cycle, otherwise the next 4 months were going to be a one way road to hell. And for me, the best way to feel normal is to run. 

Chemo day was a Tuesday. The amazing help from family and friends meant I could completely write off the next 5 days. No cooking, childcare or school runs meant I didn’t have to leave my bed if I didn’t feel like it. Then on day 6, Monday morning, life returned to normal.  I got up, got dressed and re entered the world, and most importantly, went running.

Initially cycling was a reasonable substitute, but I was itching to regain my running form. The first post chemo run was always incredibly hard - 4 miles of wading through treacle wearing lead lined boots. But as the days went by it got progressively easier. I still did parkrun from time to time, and I even did a 10k race between my 3rd and 4th cycles. The icing on the cake was winning a 5k race only 5 weeks after my last chemo cycle, and a 10k race a month later. I joked that tamoxifen was my performance enhancing drug but the reality was I was more determined than ever before.

2015 was my year to put the pieces of my life back together. Cancer may have left my body but it certainly hadn’t left my mind. I needed to figure out a way to incorporate it into my life experience in a meaningful way. Drawing a line under it, moving on, putting it behind me – these were not things I could relate to. I needed to find the new me and the new me included cancer.  Thankfully I have had brilliant psychological support every step of the way, which has taught me so many things about myself I never knew, and helped me to discover the way forward.

Towards the end of 2014 I was introduced to the concepts of mindfulness and self-compassion. I read many books on the subjects and began a regular meditation practice. Initially this involved using various apps and You Tube, but gradually I felt confident enough just to sit quietly and notice whatever was going on.  I completed two 8 week long mindfulness courses at the London Buddhist Centre, and now, over a year later, can definitely say that regular meditation has brought many benefits to my life.

I was accepted as a model for the annual Breast Cancer Care fashion show in London and also asked to give a speech to the audience telling my story. The old me would never have agreed to speak in public to more than 800 people, but not only did I do it, I loved every minute of it.

I competed in my first triathlon less than 8 months after finishing chemo, and have 2 more lined up this year. My body has continued to try and throw a spanner in the works at every opportunity, firstly in the form of an ovarian cancer scare (thankfully just a scare) and then an osteopenia diagnosis, not quite as bad as osteoporosis but on the way. 

I have become a vegetarian as there is a lot of, in my opinion, fairly conclusive evidence that our consumption of animal products is a huge part of the reason certain types of cancer are reaching almost epidemic levels in the western world.  I am also trying not to eat dairy products, but for a girl who used to joke that her 5 a day were butter, cheese, ice cream, cream and yoghurt this has not been easy.

A couple of weeks ago it was 2 years since I found my tumour. According to my oncologist the fact that I have made it this far without a recurrence means it is less likely to come back. However statistics are just numbers and have no bearing on a particular individuals chance of survival, so I will never be complacent. I know too many people who have fallen foul of statistics and are no longer with us to rest on my laurels.

Cancer no longer keeps me awake at night, although it does feature in my dreams. There is no doubt in my mind that my life is on a different trajectory than it was pre cancer. The changes may not be immediately obvious to an outsider but my perception of life has changed.  Cancer has given me opportunities I would otherwise not have had, introduced me to some amazing people, and allowed me to be the recipient of some wonderful acts of human kindness. That is not to say I am glad it has happened, but I am grateful that something good has come out of it.

My body continues to astound me by being able to comply with all I demand of it, despite everything it has been through. Our ability to recover from even the worst of trauma is a testament to human resilience, whether I am more resilient than the average person I cannot say. I was called inspirational more times than I can count whilst going through treatment, but as my friends know I don’t feel deserving of such an accolade because I really was just being myself, and trying to keep things as normal as possible for me and my family.

I live with the knowledge that it could come back at any time but I have accepted that. It doesn’t cause me anxiety, except occasionally around appointments and scan results. I don’t consciously think about it but it is always there in the back of my mind, an unwanted intruder.  And if I’m having a bad day and feel like shouting and screaming and asking why me?  I put on my running shoes and head out the door into my world. 

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