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'

A Fusion of a Fighter and Survivor

Am I survivor or a fighter... or am I both?

So this is something I have given a lot of thought to and since writing this post I've realised that, after everything I've been through, I am a 'Fusion of a Fighter and Survivor'.

In the cancer community some class themselves as survivors and some as fighters so this is something I have been contemplating lately.  When I started to break down my thoughts and feelings after writing a bio for a social media platform I found myself relating to both.  This may seem trivial but an interesting subject to explore.  Once I started to develop this post I actually found that it is not as black and white as I'd thought.  Especially before I was diagnosed, I just assumed you were one or the other...I believe this subject is applicable to anyone who has had a cancer diagnosis or suffered any other traumatic life changing event.

Firstly I looked up the dictionary definition both words;

Survivor - a person who continues to function or prosper in spite of opposition, hardship or setbacks. 

Fighter -  a person who has determination, and courage, a person who fights for example cancer or is a boxer.

I can certainly relate to both...

My Experience

So yes I'm in remission and I have survived the brutal chemotherapy which in itself can be life threatening so I am a survivor, right?

While my body was fighting the Leukaemia my mind wasn't contemplating the enormity of it all. Mentally I was purely focused on getting through each seemingly unending and grim day. I've since come to the conclusion that my mind was protecting me from the devastating reality of my disease, not something I did intentionally but it meant that I tolerated all of the setbacks and alarming moments along the way.  It's only since finishing treatment that everything has taken its toll.  The mind is a very complex thing and survival instinct is something you don't even know you have until you are thrown into a life or death situation. At this point I was a fighter, fighting to live, a very basic thing.  I hadn't yet reached the point where I could class myself as a survivor, not until my treatment had finished at least.

Once my treatment had finished I very much felt like a survivor and with that came a feeling of euphoria, strength and pride, part of a 'club' I was more than happy to be a member of. I very much felt that my fight was over and that my life would be like it used to be however, as more time has passed it's dawned on me that I am still fighting...emotionally, physically and psychologically.  Even if I was cured I'd still be fighting the after effects of the whole devastating experience.  I really had no idea I would feel like this back when I was first home from the hospital.

There are periods of time when I am fairly at peace with my new life, feeling empowered because of what I have achieved then suddenly something will spark off a flash back and from that a downward spiral of negative thoughts flood in so I have to fight back to acceptance again.  That acceptance being that I even had cancer in the first place, that cancer belongs to me now, that it did happen to me and that cancer will forever be part of me.

It is certainly a battle trying to get across that you are still very much recovering when on the outside you look ok.  Often I feel like I don't belong anymore, when conversations leave me feeling totally alone, misunderstood or when friends chat about the future and all I can think is 'I don't even know if I will be here in 5 years time'.  These are friends I still have so much in common with apart from this great big black cloud that follows me around so I am regularly fighting to keep my emotions under control.

Yet the survivor part of me means I am driven to do what I can, help in any way I can which has lead to becoming an Ambassador for the blood cancer charity Bloodwise.  My husband and I have done lots of fundraising and supported others going through the cancer journey.  I no longer doubt my worth or what my life should be about and that is a wonderful feeling.

Am I  a Survivor of Fighter?

So it seems that I am in a cycle of surviving and fighting...perhaps all survivors are fighters in one way or another?  And even though you have survived something you still have to fight to move on from it.

I would love to hear your thoughts on this...please leave a comment below...ButterflyinRemission

The Reality of Chemo Hair loss - 'It Just Isn't Me'

I've been prompted to write this post after being asked to talk on BBC Radio Lincolnshire's Melvyn Prior show about cancer and hair loss.  I also tuned into the Jeremy Vine show on BBC Radio Two as they too were discussing it.

When Victoria Derbyshire took her wig off in her video diary my mind flashed back to my experience.  As I was in hospital for 6 months during my Leukaemia treatment I never felt the need for a wig so opted for the chemo hats.  They became my shield to hide behind so when I first went out without one showing the world my new extremely short hair I felt naked and exposed.  Even though I am not on the TV like Victoria Derbyshire, going out in my local community and doing the school run was very daunting. Victoria is very brave sharing this moment online in front of thousands of viewers.  When she said 'this just isn't me' immediately I felt empathy with her and her words pretty much summed it up for me. 

I've decided to be brave and share this photo of me, it's one I don't even look at myself as it's pretty awful.

This was what was left of my hair, not a good moment,
just before my lovely hairdresser shaved it off.

Hair loss from chemotherapy may to some seem like a necessary part of survival and of course it is but equally feeling bad about it is not about vanity either.  At first I hid my bald head from my daughter because I didn't want to scare her and I will never forget that moment when she first saw it (which was by accident). It was one of many tough moments but she was very brave and kind saying 'it's ok Mummy...I'm ok Mummy.' When it first started to grow back she wouldn't touch it for a long while.   

My head would get so sweaty that I needed a towel on my pillow, I'm not sure if this was due to having no hair or my treatment but it was quite embarrassing, especially while I was in hospital!  When I was at home I would often have to wipe my head with tissue...I remember thinking 'this is what men who are bald must have to do'.  I realise this may sound a little bad to admit but it's what crossed my mind and as a woman you don't expect to experience this (sorry bald men, no offence meant).

Before my diagnosis

My hairdresser cut my hair off
before it started to fall out

With my best hat on!

In hospital with my first head scarf

One of the most upsetting things which has really affected my confidence in the beginning was that people didn't recognise me.  I'm not talking about people you haven't seen in years but those who saw me pretty much everyday before my diagnosis.  I would have to stop them and re-introduce myself however, after a while I wouldn't bother because I was afraid that they still wouldn't remember me.  Irrational I know but we've all had that moment when someone looks at you blankly, even once you have explained how you know them so when this happens on a daily basis you get paranoid.  I still have this fear now when I see people in the street even though most are used to my new look.

Then there was the period where it was very short, like a crew cut and I felt really unfeminine.  I realised that my hair had been what had made me feel like a woman and that I had enjoyed using it to express myself.  Having long hair had meant I could change my 'style' depending on how I was feeling, giving me power and confidence.  If I was feeling low I could spend time styling my hair in a way that would lift my mood and put a smile on my face. A lot of women know how special you feel when you have your hair put up at the hair salon ready for a special occasion, like a mask, changing your persona for a night.  Of course if you like to have your hair really short, or have decided to have a drastic make over that is a different thing altogether. You've made that decision and  I am not saying that short hair equals unfeminine, in fact I've always admired short styles on women like Halle Berry and Charlize Theron, they are two of the most beautiful women in my opinion.  

When I look back at pictures of myself before my diagnosis I can't relate to that person anymore, she's lost, seemingly forever.  Although I feel close to that person I just can't quite find her, I find this very unsettling and I'm still grieving for her.   One of the many emotions I've felt from my hair loss is feeling lost because I don't even recognise myself.  

One time I saw myself in the mirror and thought to myself 'yeah, you definitely look like you have cancer.'

Thinking back to the two hours my husband and mum spent combing out my matted hair in hospital is upsetting.  I had been gravely ill for a few weeks so as my hair had been falling out I'd been bed bound therefore not showering or combing my hair. I can still remember how much it hurt and see the massive pile of hair on the bed next to me.  They were both silent, trying to be as gentle as they could, trying not to break down while I just wanted it to be over. You could have heard a pin drop in that hospital room.  I didn't want to look in the mirror after because I was scared of what I would see, but I did and I gritted my teeth.

I've experienced lots of milestones with my hair regrowth which to many may seem minor but as they happened represented part of my recovery; like the first time I washed my hair with shampoo (I'd just been using baby wipes to clean my head for months!), the first time I felt the wind blow my hair, the first time I could get a clip in it, the first time I could wrap a towel around it, used my hairdryer again, and had it trimmed, felt it touching my face again.  Things I took for granted before.

Over the past 18 months since finishing my treatment I have spoken to many fellow cancer fighters and survivors and one of the most common phrases I hear is 'it's about control'.  For the first time in your life you have no control over your hair.  Often it grows back differently, curly, thinner, thicker or a different colour.  I thought I would grow mine back to the length it was before but it suddenly dawned on me one day that it would take 3 or 4 years and this never crossed my mind when I first lost my hair, all I could think of was getting back to the old me. That is something I now know will never happen either will my identity or personality.  The 'new normal' is something I am still trying to understand and some to terms with.

I could write so much more but am conscious of this post being too long!  I would love to hear your thoughts or if you've felt the same as me so please leave your comments below...many thanks!

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/

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