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'

Words & Life Quotes to Inspire ... #amwriting

I have always loved reading quotes and often go to them when I am feeling a little low and in need of inspiration.  Here are some written by me...I find it extremely therapeutic and my go to stress buster.

Mine are written from my life experiences and being a Leukaemia survivor, Mum, wife, friend and obsessive with a varied career background there is quite a lot for me to draw from...enjoy

Hope you have enjoyed these and at least felt a little inspired or less alone...please leave a comment as I would love to hear from you...Butterfly

Productive Escapism - A different Perspective on Spring Cleaning

While having yet another clear out I started to think about why I get such a buzz out of it and how beneficial it is in the long run.  

Mainly a bit of escapism from whatever stresses I have going on while being incredibly productive really boosting my mood.

Bear with me on this...at first you may think 'yeah in an ideal world' or 'if I ever had the time' but believe me I too am one of those busy working Mums who is out every night taking my daughter to dancing, tuition or doing my voluntary charity work, blogging as well as running my home. And I know there are always many more pressing things that are a priority however, there is a method to my madness!

Previously, I've only ever had a major sort out a couple of times a year because it has become so out of control that I keep putting it off.  My intentions this time is to get to a point where it is not a colossal undertaking because everything is organised well enough that I can put things in the right place from the start!  One of the key things is to have a place for everything then you don't stuff it in a drawer or cupboard with lots of other random things. 

The first thing I do is get myself a cuppa!

WHY IT IS WORTH IT

Most of us live extremely busy lives whether we have children or not, regardless of how many hours we work or our hobbies so during busy times I find myself shoving things in drawers, baskets, random places etc to sort out later, but that later never seems to come.  Then I find myself losing important things, I know they are in the house somewhere but they could be in one of several places. After wasting too much of my valuable time searching for something I promise myself I will once and for all get everything in order.  To date this is something I have never achieved and probably never will 100% but I'm going to have a very good try!  This whole process has taken me about three weeks

Some points to keep you motivated;

• It helps me to feel more in control and more optimistic about being less stressed going forward because I will have everything to hand pretty quickly.
• Finding things I've forgotten about (in the past when I've brought something and shoved it away in a rush I lose or forget about it) - a lovely feeling, like getting new stuff again!
• Finding items that have been lost; losing them has been driving me mad so I feel elated when I come across them
• Not feeling that everything is a mess, every corner, every cupboard, drawer, it may not be in view but I know it is there...taunting me, telling me it needs my attention.
• Feeling inspired as I come across articles I've pulled out, ideas I've jotted down, coming across things that trigger old memories, like a photo, card from my daughter when she was little, old notes, project ideas I've forgotten about, make up I haven't used for ages, etc.  
• It takes me away from my everyday stresses for a little while, a really good way of mentally detoxing or escaping temporarily.  This form of distraction is both productive and rewarding. Giving you a mental break from worrying which I find really helpful and calming.  Often this break then gives me a new perspective on problems I've been struggling to solve.
• Stress buster; if I am dealing with some of life's frustrations I find it helps me to clear those emotions out.

Here are some tips I'd like to pass on;

Be prepared for the mess!  There will be lots of mess as you need to make lots of different piles and spread things around before you start to make progress.  View this as a positive mess, a productive mess and remember why you are doing it.

The start of my mess!

• Be prepared; get some tubs, empty files, a plastic carrier bag (for putting recycling paper in to throw away) and some large A4/A3 envelopes (to put documents to shred in). 

MY TIP; Label boxes, folders, tins, etc so that you don't have 
to open every one to find out what is in them or find the one

you are looking for.

• Get the family on board; by this I mean let them know what you are planning and not to move anything or place anything on top of your piles...also to bear with the mess!
• The piles I usually make; general filing, to shred (goes into envelope), paper to throw (straight into carrier bag which I hang on chair nearby), scrapbook stuff, booklets/magazines to go through, receipts to file, for my household file (where I file bills, warranties, school info, insurance info, registrations, appliance serial no's and registrations, medical info, etc), not sure pile (to go through when I've finished), to check with my husband if he still wants/needs and whatever else is relevant for you.
• I can recommend the Ikea furniture range, Kallax - in a small house like ours I have found this range so versatile and you can fit a lot of different things in.  From papers, craft supplies and household filing to spare cables, beauty electronics and food.  We have these in my daughter's bedroom, on our landing and in our Kitchen Diner.

My Ikea unit, with baskets, deep storage bins, box files, etc

(still a work in progress)

Another of my Ikea units

• Quite often when I get in from shopping, tired and hungry I put (or if I am honest 'shove') what I've purchased somewhere, anywhere and then forget where.  So now I have a place, which is easy to get to where I will put them from now on.  Then I can go straight back to this place later. This idea stemmed from a recent experience with a Mother's Day gift, I'd put it somewhere out of the way then had to spend a stressful hour looking for it...well no more.

MY TIP; Think about the things you need to get to on a daily basis and put them in places close to hand then items you rarely use in harder to get to places.  I find that if something is hard to get to it is too temping not to bother and it will also be the same when putting things away when you are busy.  So make sure your place where you plan to put things that you regularly need to put away like your child's school homework in an 'easy to get to place'

• A 'Christmas Drawer'; I now have one of these (actually I borrowed this idea from my Mum) I put anything relating to Christmas in it.  For example, random things that I come across after I've packed my decorations away in the loft (there is always those odd decorations that have dropped behind something), presents I've purchased early, left over cards, labels and stickers so nearer the time I can check if I need to buy any more, craft bits so I can start them before I need to get all the decorations out of the loft.

MY TIP; Take photos of the decorations you have before you 
put them in your loft and then put the pics in your Christmas drawer so you don't forget what you have! This is something
 I do after several years of forgetting what I had, purchasing
 more new bits only to find I already have lots of lovely decorations!  I also photograph and the decorations when
 they are in situ at Christmas so I don't forget how I've used 
them and add these pics to my drawer too.  

• My 'Where to find it' list; 

• After spending hours in the past hunting for something that I don't use very often I have devised a 'where to find things sheet'.  Because I don't use a particular item very often I can't always remember where I've stored it.   I kept making the same mistake...wasting my valuable time searching for things.  It would be something like my camera tripod or seasonal items. Then I had a light bulb moment, (probably in the middle of the night) and the next day I created it.  The sheet goes in my 'Household file' which is easy to get to,  I even add things that seem insignificant because you never know.  I am pleased to report that my sheet has saved me time, no end of times now!!  

IN CONCLUSION

Doing this has given me real boost, I feel like it has been a cleansing and enriching experience.
I hope I have inspired you to give it a go and if I can do it...anyone can!!

Please leave your thoughts below!! Many thanks... ButterflyinRemission

Toe Tapping, Tears, Laughter & Nudity...a night at The Girls Musical

My family and I know first hand how unbelievably tough fighting Leukaemia is and as a Bloodwise Ambassador my husband, sister, brother in law and I were invited to a special showing of Tim Firth's and Gary Barlow's The Girls Musical at the Phoenix Theatre in London's West End.  Having heard lots of great things about the show I was more than pleased to go along.  It certainly didn't disappoint...it was hilarious, uplifting and an emotional roller coaster.

On arrival it was lovely to see the outside of the theatre adorned with Sunflowers which have now become the emblem for the Calendar Girls.  The original ladies are never seen without wearing one and it has been adopted by many including the army of Gary Barlow fans who were waiting outside the theatre.  For me and I'm sure others it now represents hope and light in what is often a dark time for people affected by blood cancer.   

The Phoenix Theatre all dressed up!

John Baker's words...

"The flowers of Yorkshire are like the women of Yorkshire. Every stage of their growth has its own beauty, but the last phase is the most glorious.  Wherever light is, no matter how weak, these flowers will find it and that's an admirable thing.  And such a life lesson." 

Which is why the Sunflower is now as much part of the Calendar Girls as the Calendar itself.

The Phoenix has quite a small auditorium and I wander if this added to the down to earth vibe of the show.  Being so seemingly close all the 'action' certainly made me feel like I was part of something special. Or was it purely that I felt an affinity to the story as a Leukaemia survivor who has met the Calendar Girls a couple of times?  Either way there's no denying the reaction of other audience members and the standing ovation at the end so I'm not alone in loving it!

Cast members with Gary Barlow and Tim Firth (source @thegirlsmusical)

Me with the Calendar Girls

Me chatting to The Calendar Girls at a Bloodwise event

We all know what sparked off this amazing story, a family man, happily going about his day to day business was given the devastating news that he had blood cancer.  John Baker was diagnosed with Non-Hodgkin Lymphoma in 1998 and sadly passed away after just a few months treatment.

This story is not just about a group of women who sold lots of nude calendars.  What really comes across in the musical is a community coming together and women overcoming various personal challenges with the aim to help others in their darkest hour. I feel nothing but admiration not only for the original ladies but also the actresses who were naked on stage.  Lets face it none of us like to go to the local swimming pool in our swim costume, all our imperfections on display let alone on a very public Calendar or on a West End stage! I may have bravely endured the brutal treatment for Leukaemia but I think these ladies are very courageous.  

Accompanied by shrieks of laughter the clever choreography and positioning of props made the photo shoot scene simply hilarious.  It really felt like they were doing it for the first and only time as the original Calendar Girls did, not that they do this for every show! From the emotions conveyed by the cast I believed they were thoroughly enjoying every moment and they have a real empathy to the story. Perhaps this was due to their brilliant acting abilities and the language used by Tim Firth but still. The young actors were very impressive too and I'm sure I will be seeing a lot more of them in the future.

One of the nude photo shoots on stage (source @thegirlsmusical)

There were moments when I could really feel the pain of John's battle yet also his passion for life and wonderful sense of humour.  As I looked at those around me the tears were flowing but accompanied by smiles.  From what I have read about John it would have been exactly how he would have liked it, he wouldn't want anyone to be sad but you can't ignore the fact that tragically he lost his battle too young with so much life to live.

The writing of Tim Firth and music of Gary Barlow illustrate this story perfectly, summing up the emotional roller coaster that was the birth of the Calendar Girls.  As always Gary Barlow's lyrics really moved me, in fact his 'Rule The World' track was played over and over by my husband on his way home from visiting me in hospital where I spent 6 months. The lyrics, especially 'don't leave me now', 'don't fade away' and 'if you stay by my side we can rule the world' particularly resonating.

The show stayed with me for days and I cannot stress how much you would take away from this show if you went to see it.  A reminder of what is really important in life, friendship, support and in the darkest of times managing to find the light, no matter how dim and turning towards it.  I too have had so much overwhelming support from my community in many ways, but no naked calendar...yet!

The show, I am sure, will appeal to anyone affected by any type of cancer, or who has experienced something positive after a tough time.  John's family have always been involved and during the whole process the producers and writers have respected their story.  Another reason why this musical is so special, everyone has put their hearts into it and it really comes across when you watch it unfold.

When asked about The Girls Musical...
"The musical is absolutely fantastic and John would have been so proud.  As a family it helps us believe that he didn't die in vain, that he's been part of it and with us every step of the way.  John would have wanted to help other people who get this terrible disease." Angela Baker

I haven't watched the film since I was very suddenly diagnosed with an aggressive Leukaemia with only hours to live I had 90% bone marrow failure. Not wanting to unleash all the emotions I keep under tight control.  Often I think back to when it all originally started, the Calendar hitting the news, getting worldwide attention, the film. etc and I shiver at the thought that these incredible women, their families and friends would have a part in my future, yet at the time I had no idea what I would face.  Thanks to their fundraising for Bloodwise,  who've invested millions in life saving research there have been some major advances in blood cancer treatment and outcomes.  Words are not enough to express how much this means to me and my family.  

To read more about the original story please click here Bloodwise and The Calendar Girls  To find out more about Non-Hodgkin Lymphoma click here Bloodwise - Understanding Lymphoma

For tickets and information click here; http://www.thegirlsmusical.com/

I am currently writing a post about how it all began...A little Calendar Girls History!

The Calendar Girls with Dr Dawn Harper at a Bloodwise event I attended

For more information on Bloodwise formally known as Leukaemia & Lymphoma Research Society Click here ; https://bloodwise.org.uk/

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.