Knights in the darkness

I’ve never been a patient person. As a child I used to find out where ‘Santa’ had stored the Christmas presents before the big day, secretly go and unwrap them, drop hints to my parents over what I liked and didn’t (just incase any last minute changes were possible!), and then act surprised on Christmas Day as I unwrapped them for a second time! 


As anyone who has ever waited for tests results will understand, learning to keep a positive mindset in the ‘unknown window’, can become one of the hardest parts of the journey.
My husband and I found ourselves on the idle Friday before Christmas nervously waiting to see if my cancer had spread. You think when starting this process that the worst thing is being told you have cancer. But suddenly in this ‘suspended window’ of reality, you realise that you are possibly hours aways from what might seem like Armageddon. We emotionally sat in the Ivy, knocking back too many G&T’s and Champagne for some Dutch courage, emotionally sharing what life might no longer be, as we waited to hear the outcomes of my staging scans. 

When you are first told you have cancer, you can go into a dark place. A very dark place. People don’t often admit to those feeling – but you are not alone – I’ll just be honest. For me I started to plan my funeral, and write in my head, the letters I want to leave my beautiful children. You go numb, you wake up in the night in a blind panic, hoping it was just a bad dream, you wonder if you ignore it, if it will go away, you long to run away and not have to deal with the monster that awaits….and you cry. A lot. 

 

That Friday night, I met my wonderful surgeon, alongside my husband, one of my first ‘knights in the darkness’ that I will discuss more in later posts. He broke to us they he felt they could achieve a positive outcome with a bowel resection – it didn’t at that point look as though it had spread – and was even presenting in a possibly non-cancerous way. (I now know this was the first trick my cheeky intelligent cancer was playing on us!). We agreed to operate after Christmas to achieve the best outcome with the best team and left knowing we’d next see each other in hospital. I then had a few weeks to have Christmas with my family and pretend on the surface that ‘everything was fine!’ 

 

Most people will tell you not to look at statistics and that is because cancer statistics can be scary. All the things that you suddenly took for granted – like growing old, seeing your children to secondary school, seeing in another new year, or questioning how many christmases you have left – now become a question of which dot on a graph your luck may place you.  

 In a numb way, as though this game is about ‘someone else’ you start using the statistics, that are not bespoke to you, to torture your mind…… “so if I have stage 3, I have a 60% chance of seeing my son reach secondary school”. 


 Over the next 2 weeks between Christmas presents, New Year champagne in France, and stopping my children killing each other on Christmas holidays, I started to learn more and more about the beast I was about to tackle.  

“Bowel cancer is the second biggest killer in the uk. Bowel cancer incidence. … Bowel cancer accounts for 12% of all new cases in the UK (2014). In males in the UK, bowel cancer is the third most common cancer, with around 22,800 cases diagnosed in 2014. In females in the UK, bowel cancer is the third most common cancer, with around 18,400 cases diagnosed in 2014′.cancer research

 I then started to learn that most cancers when caught early have excellent outcomes:

 “Bowel cancer is a very treatable cancer – when caught early. When diagnosed at its earliest stage, more than 9 in 10 people with bowel cancer will survive their disease for five years or more, compared with less than 1 in 10 people when diagnosed at the latest stage” Cancer Research UK 

Still unsure of my staging until post operation you assume the worst, so you then start blaming yourself for not pushing this years ago when your bowel habits changed, or asking if too many cigarettes on your birthday caused this? Or maybe it’s the chocolate you eat? Maybe it’s stress? Did I not eat enough kale? Should I have washed my salad better? Is 5 hours sleep enough? Do I use a shampoo with a dangerous chemical? Was I too busy to sort this?! 

 The more you read the more you get upset, you get angry, you get scared and you get worried – and this can happen all in the same minute! 

Now for me, not knowing or understanding my illness was never going to work. I want to know everything I possibly can about this cancer, I want to know about every trial going, understand every statistic related to operations, complications, drugs, new drugs, risks and staying alive. I’m finding over time, that by becoming educated about my cancer it enables me to feel empowered to fight it head on. 

 However – I realise that in that suspended window of waiting, I’m looking at statistics to find reassurance – but no matter how hard I look I’m never going to find something that makes me happy. No one is going to tell me for sure that I’m going to see my kids to secondary school, that I’m going to grow old and I’m not going to die in the next 5 years. I suppose none of us know that for sure but we don’t normally have to face it in such a stark way. 

 It is these blindsiding moments in our lives that challenge us to show how strong we can be. Not only to have faith to get through it, but to cope with the darkness, to pull ourself out when you feel there is no hope. To function when you want to cry, to smile when inside you are scared, and to be grateful for the shining knights you have in your life, who, one by one, in their own ways, will walk with you, talk with you and pull you into the light. 

 

In this surreal moment of waiting, you look at life with fresh new eyes and become ever more grateful for what you have been blessed with. The friends, family and colleagues reaching out in a way that shows you the wonder, power and possible depth of human compassion and true friendship. You look at nature with an appreciation I’ve never experienced, you take your children to the opera house to see the ballet (a Christmas tradition for us), and wonder if you will do it again but are in awe of the beauty of the moment. You watch your children dress for the Christmas Eve nativity play as you do every year, open their presents, as they do every year and as they laugh you look at them, your life, and the knights around you, and realise that this is why you must, and can get out of the darkness and pray that all will be well. 

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8 comments

  1. Dear Bowelbabe, I admire you for your courage to expose and share your thoughts & feelings during this difficult time. I will be there with you on this journey. Stay strong!! Claudia x

    Liked by 1 person

  2. I had to stay away from Google during all ‘the waits.’ God literally became my rock during all of this. As I sat and listened to all the horrid side effects of everything they wanted to use to treat my Stage 3 Breast Cancer, I refused to receive any of it in my heart. I knew God was in control, and I wasn’t going to have anything happen that wasn’t good for me in some way. The verse that got me through it all was, “Be still and know I am God.” (Psalm 46:10) You will get through this lovely, and be better on the other side. xxx

    Liked by 1 person

  3. You have the same mindset that i had 8 years ago when diagnosed with breast cancer. Noone understood the need to be armed with as many statistics as you could find, scary or not. I too looked into a very dark door and shut it quickly. I wore a pirate bandana under my police hat…never took to my bed even on the worst days bed is for dying……found myself googling brain tumours, bone cancer, toe cancer and every other frigging cancer which all turned out to be nothing after many scans….its all in the mind…..take plenty of vitamins fight through the darkest thoughts and before you know it 8 years will pass. My husband left during my treatment, my dad was diagnosed with motor neurone disease and i had a 8yr old halloween birthday party for 30 boys the day after my first chemo…..you will get there be strong…..wishing you much love and luck but get through it and live that life to the full xx

    Liked by 1 person

  4. Dear Bowelbabe,
    Your blog is unbelievably the same (if I wrote one) as me.
    I was in hospital before Christmas told to go home to spend with family and operated on bowel tumour in sigmoid January 9 2017. Though I am in New Zealand.
    I started chemotherapy last week, and will receive for 6 mths.
    I two have 2 children (12 & 10). I completely understood your emotions and having to tell your children, it is something ‘no one ever is prepared for’. I still feel like I have not registered it but my thin, unappropriate bowel motions, tiredness is starting to settle in.
    I am giving you a virtual hug right now. High 5 in staying strong with me in this roller-coaster.

    Liked by 1 person

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