The Double Edged Sword Analogy - By A Cancer Survivor

MY VERY OWN DOUBLE EDGED SWORD - HOW LUCKY I AM?

I wrote this quote a while ago to sum up my feelings as a blood cancer survivor.

Writing has been a great therapy for me relieving bottled up stress by putting my thoughts down on to 'paper' and out of my over active mind.  Both rewarding and cathartic and the realisation of a childhood dream.  This post explains what is behind it.

When I planned this I'd found myself using the phrase 'Double Edged Sword' a lot when describing my life since being diagnosed with Acute Leukaemia.  Much as it was and still is a devastating diagnosis there are many positive things that have come into my life now. 

I've been asked many times how my life has changed since and I've always tried to put together an answer that would sum it up but actually for me its hard to define.  The following may help you understand my thoughts;

Here are the negatives;

• Long terms effects of chemotherapy 
• Fear of secondary cancer due to intense chemo
• Loss of my job
• Loss of confidence in my body and health
• Issues with my balance leading to embarrassing moments
• Extreme fatigue & muscle waste
• Sleep disturbance
• Cognitive brain problems
• Relationship changes
• My changed image, hair loss
• PTSD and GAD
• Financial impact
• My daughter's emotions
• Friendship changes

But then all of the wonderful positives;

• New friendships
• Renewing old, lost friendships
• Inner strength and pride that I never had before
• Clarity on my life and what it really means to me
• Perspective, its a relief to understand what is truly important
• Guilt free happiness
• Volunteering as a Charity Ambassador and fundraising 
• Finding out how rewarding helping others is when I hear the impact my support has had on their life
• The confidence to write...a childhood dream of mine
• Touching gestures of kindness and generosity that I will cherish forever
• Educating myself and achieving new goals
• Inspiring others and being inspired

I was chatting to a fellow AML survivor recently and as we were sharing our experiences she proceeded to tell me that overall she is happier with her life now, since her diagnosis.  Even though she is constantly living with the fear of relapse overall her life is better.  Hearing this was great because finally there was someone else with similar thoughts to me. It's not something I've really admitted to many people because it's a strange conclusion to come to after something so life changing. But it seems that after being given a second chance at life everything has become much clearer to me which is a wonderful feeling, something I'd struggled to see before. At times I would have this fear that my life would pass by before I'd figured it all out, what my legacy should be.  Now I know what I want to do, need to do and I've achieved so much in the past 18 months. 

I looked up the definition of this Idiom;

• Collins English Dictionary - Something has negative effects as well as positive effects.
• Oxford Dictionary - A situation or course of action having both positive and negative effects.

This is why I often say 'Double Edged Sword'

Behind a Writer's Eyes

Written to express how it feels for me most of the time as I am constantly composing quotes, blog posts, the book I dream of publishing and much more!  I seem to be bombarded by inspiration every waking moment which leads to a very confused mind as I don't know where to start. So I make notes all of the time trying to keep hold of my thoughts wondering if everyone has this problem or if it's just me.

This is what's behind my writer's eyes...so much more than you'd imagine! 

Social Media - My Gateway to Positivity

So I've written this about my experience of Social Media and of course I can only speak for myself but I wanted to put my thought and feelings out there for others to read.  I've titled this post 'MY GATEWAY TO POSITIVITY' because it has been exactly that for me.  Also I am fully aware of all of the down sides and that some use it in a negative way and for that I feel very sorry.  Sadly not everyone wants to spread positive vibes or help each other and this is not just a Social Media phenomena.

My Social Media Experience - Support & Friendship

Over the past couple of years social media has become a big part of my life, a great source of support, enabling me to link up with like minded people which has been invaluable.  I cannot express how much of a positive this has been for me and it's like anything, you get out of it what you put into it. Plus as a blogger it's a crucial tool to both reach out to your audience and interact with fellow writers.

'Life is a funny old thing', 'You never know what's around the corner' and 'Never say never' are phrases that really resonate as my life is now.  And they can also be related to my experience of Social Media, I admit that when I first signed up to Twitter and Instagram I was sceptical, suspicious, didn't understand how to use them nor did I see the point to them!  In fact I signed up, tried them briefly, then gave up for about two years.  So if I can change my perspective then anyone can.

Before my Leukaemia diagnosis I never would have guessed that Social Media would actually become my virtual support group...the gateway to much needed friendships and information making a big contribution to my mental well being.  As the Leukaemia I have is rare for someone my age I found it an invaluable way of finding others like me, who I can really relate to.    Others have reached out to me this way after seeing my story in the press and magazines, we have been able to share our experiences, offer each other support through the tough times.  We also laugh about situations only we can see the funny side in.

Facebook and Twitter really helped at the time of my shock, overnight, Leukaemia diagnosis.  I received an overwhelming number of messages of support from friends, colleagues, associates, family and other surprising sources.  My heart melted at the sentiments, offers of help and outpouring of love as I read them all from my hospital bed.  Before this I had no idea that so many people cared, it was so uplifting and spurred me on to fight harder.  Old friends, whom I'd lost touch with reached out to me and people who had seen my story via a mutual friend's timeline felt compelled to wish me well.  Even now, if I am feeling a little low, I look back over them to remind myself of what's important.

The updates me and my family were able to post were really comforting to everyone who was worried about my condition which was touch and go.  Rather than spending hours on the phone returning calls this was done quickly and efficiently relieving a lot of pressure from my family.

Personally for me it was really important to be able to thank each person for their support, it had meant the world to me and I wanted them to know.  When I was well enough I had conversations via Messenger and DM boosting my morale as I was hospitalised for 6 months, in isolation, unable to have visitors, it was incredibly lonely at times.

Some of the support I've had is from 'social media' friends that to start of with were fellow supporters of Britain's Got Talent winners Collabro and they have stayed with me throughout. Sending me some wonderful messages and making donations to the charity I'm an Ambassador for, so heartwarming. Also the band members of Collabro have tweeted messages of support and recorded a video clip wishing me well, in my darkest hours these were very much appreciated.  Even though I was battling through the worst time in my life these small things gave me something to smile about.

There are private Facebook groups where I can express me feelings amongst those who are like minded and have shared my life experiences.  This is a brilliant facility on Facebook that is used by clubs, support groups, businesses, to plan surprise parties and much more.

Blogging and Social Media

When I decided I wanted to write a blog about my experience I wanted to reach out to others, help myself come to terms with my new life and realise my dream of being a writer.  Social Media has been a very effective way of meeting other bloggers, networking, gaining help, information and chatting about a subject we are mutually interested in.  There are Facebook groups for bloggers which are a fantastic way of finding other blogs and gaining followers for yours.  In these groups you can ask for help, advice and chat all things blogging with those who are also passionate about it.  I find this really invaluable.

An old work colleague contacted me after reading my blog sending me this message through Facebook; 

I may not have met a lot of these friends face to face but we chat regularly, this is often the way of making friends now in the modern world. I often see conversations held amongst those who have 'met' over a common interest, whether its a TV show like The Walking Dead,  Poldark or Sherlock, blogging, sport, writing, etc.   Sometimes they have been able to meet up and have talked about how it felt so natural, like seeing an old friend.  For those who are fans of popular TV shows they often 'live tweet' which is basically like sitting in a room together watching it, sharing theories and opinions. Sometimes actors from the shows get involved too, is lots of fun and brings people together.

In a way it is just a more effective way of finding people who you have something more in common with.

Help and Advice on Social Media

Social Media is a great source of help, advice and information quickly and efficiently too.  Obviously you have to be guarded and sensible about it but you can tap into other people's knowledge on pretty much any subject.   For customer service with businesses it is an efficient way to resolve any issues and I've received excellent assistance from major brands.  I have also given positive feedback whenever I have been really happy with a product or service.

A couple of years ago I used Twitter to help me sort out an out of stock issue that I'd been unable to resolve (I'm a Pharmacy Technician). Very quickly I received lots of suggestions from other technicians and was able to track down an alternative.  I know of others who have managed to track down an elusive and highly sought after item of clothing this way.

In the aftermath terrorist attacks or natural disasters Facebook now has a way you can mark yourself as safe or out of the area.  So if you would normally be in that area or it is near where you live you can very quickly let everyone know you are safe and also check on people you are worried about.

To Sum Up

As I've mentioned I am aware that social media has its negatives with cyber bullying by keyboard warriors but, there is always going to be those people in the world and I for one am not going to let it outweigh the many positives. As long as we are careful, listen and take on board the safety measures for using social media that can all be kept to a minimum. Don't read or get involved in negative feeds and always think twice before positing anything.  

The Truth... To Tell or Not To Tell?

Am I really doing the right thing by lying to my child about the reality of life?


This question often comes into my mind, are we really doing the right thing by protecting our children from the realities of life?  Probably because of what my family has been through due to my Leukaemia battle it's more relevant for us.

We were forced into this dilemma with my daughter when I was very suddenly diagnosed with aggressive Leukaemia.  Suddenly we were faced with one of life's realities, mortality.  I found I couldn't tell her 'everything will be ok and not to worry' because actually that wasn't true and I couldn't hide it. I was to spend months in hospital and was gravely ill.  That safety curtain (which we all know is just a facade) protecting her from experiencing loss, hurt and fear was gone...forever. It wasn't easy and took real courage to ruin my child's rose tinted view of the world.  It was one of the hardest things I've ever had to do and to watch her little face as it all sunk in was heartbreaking but I had no choice, I had to prepare her.  And now I can't tell her that my cancer won't come back because there is a good chance that it might. Then if it does where will that leave her trust and belief in me?

I do wonder though if protecting our children from some things is the right thing, is it really preparing them for life? Are we doing them any favours in the long run?  Isn't part of being a parent giving your child life skills and preparing them for what might lie ahead?  I'm not talking about totally destroying their innocence and happiness but, maybe just being more honest.

My daughter has a very inquisitive mind and has asked some very unnerving questions.  'Is there going to be a World War 3?' is her latest one.  Even though I choose my words carefully  I find myself being more honest with her because I don't want her to spend years, like I did, searching for the perfect life that just doesn't exist. I feel that rather than protecting her from the reality I should be telling her that life is full of challenges and heartbreak as well as breathtaking experiences and good times? I feel that as long as I make it clear that there are many amazing things in life as well as times when you question the meaning of it she will believe that when something bad happens she will get through it and perhaps see it as a positive life lesson.

As a child I grew up believing in fairy tales, often writing my own stories, assuming that when you became an adult you had the career you wanted, found love, got married, had a family and boom...life sorted!  And yes of course all the tough times (once I came out of the other side) made me more resilient but could some of these situations have been avoided?

When in my mid 20's, finding the sudden realities of life really tough, I remember thinking 'Why didn't anyone tell me what life was really like?'  At times I wished my parents had been more honest or perhaps more open at least.  Some of the realities of life came as a real shock to me and what hit me mostly was feeling desperately let down by life.

My parents were very good at hiding their struggles and I have since learnt that there were many; the burden of having to make ends meet along with the everyday challenges of life in general.  Obviously as a child you see things from a very childish point of view and part of being a grown up is understanding and appreciating what your parents did.  I don't think it was a conscious decision on their part but just a natural instinct.  When I look back I was totally unaware of any difficulties.

For my child I want to be her sanctuary, where she can seek refuge and have the confidence to talk openly about her fears.  If she has this shelter to retreat to she will always find a way to get through.  I want to her to grow up with as happy a life as possible but with her eyes wide open and well equipped to cope with the challenges she will face.   I always make sure she knows she is loved even when I am cross with her, this is so important to me above everything.

As far as I'm concerned this blog is about my thoughts and is in no way meant as me taking the high ground or claiming to be some sort of parenting guru.  I am just a mother who is doing the best she can and like the rest of us winging it a lot of the time.  Being a parent is one of the toughest things you will ever do so all you can do is your best.

Actually I have been 'Hit by a Bus' #Leukaemia

As many cancer fighters, survivors and people fighting other life threatening illnesses will know some comments, phrases or misguided efforts at making you feel better actually have the opposite effect.  Some now aren't really applicable anymore, this is yet another 'after effect' of cancer...finding phrases and sayings either really resonate, make you want to scream or laugh at the irony.

One of these comments is the popular 'any of us could get hit by a bus tomorrow' ... While I really appreciate that this is meant in the most supportive and compassionate way it actually doesn't help and often leaves me feeling more alone. Before I wrote this I did speak to my fellow cancer friends about it to get a feel for whether or not I was being oversensitive.  You see its actually not applicable to us now as we have been hit by that proverbial bus!  There are other comments that are also unhelpful but I will write about them in a different post.

Someone used this phrase the other day and as I watched her walk away all I can think was...'don't you see I have been hit by that bus...don't you get it...it's alright for you because you are walking around thinking it will never happen to you...like I used to too.  You have no idea that what you just said makes me want to scream 'It's not applicable to me anymore...can't you see I have been hit!'

Whenever you cross a road do you not look and make your own decision on whether or not it is safe to cross?  Did I make the choice to develop cancer?  When you are going about your daily lives you a certain amount of control over your own safety...when crossing a road, standing at a bus stop or driving your car.  You can take extra care, look twice or avoid trouble spots.  I was in London the other day with friends and when it came to crossing a road funnily enough a bus came speeding along so we stepped back and I actually put my hand on my friends arm to make sure she was out of harms way...it's a natural instinct.

But when it comes to the 'cancer bus' no amount of being careful or a friends hand on my arm would have changed a thing.  I had no control over what my own body did to me, how it turned against me, my own bone marrow.  BONE MARROW FAILURE, yes 90% of it was not functioning and without healthy blood cells your body fails, yours organs fail...life fails.  Not only that but these dangerous cancer cells were dispersed around my body via my bloodstream, normally a vital but, potentially spreading the cancer all over my body, using each and every vein to infect you.

Also this 'bus' is likely to come and hit me again...how many times have you heard of someone being hit by a bus twice?  I live in fear of being hit again and am constantly looking over my shoulder waiting for its impact.

When offering words of comfort to someone whose been diagnosed by cancer perhaps think carefully before saying 'Of course any of us could be hit by a bus at any time.'  Don't try to generalise it, to make it sound like it doesn't matter, it was inevitable anyway and that being so makes it ok that you've been hit by a life threatening, life changing disease.

So where did this phrase come from anyway?? Here's what I found out;

A generic rather than literal example of misfortune, verbal shorthand to indicate that none of us know our future, that a catastrophe is merely an involuntary act of fate.  Casually used to refer to an unexpected death, illness, debilitating injury yet without making it seem grim.

According to Wikipedia it was first used in the novel 'The Secret Agent' by Joseph Conrad; "But just try to understand that it was a pure accident; as much as if he had been run over by a bus while crossing the street."

This term is also used a lot in business management meaning that there must always be a contingency plan in case someone in the team is taken ill, leaves, etc unexpectedly.  And the definition from the newly popular Urban Dictionary is 'Used instead of the word Stupid' For example; 'OMG this mobile is so getting hit by a bus.' when said mobile isn't working properly.

Thanks for taking time out of your day to read this...love Butterfly