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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

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

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

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 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!

Setting the Scene - Where it began

MY ROAD TO ACUTE LEUKAEMIA AND WHERE I AM NOW...

I've just looked back over the first few posts I wrote on this blog and although they are still relevant I felt I should write a bit of a summary of my journey so far and how I ended up in this position.  It is rather a long story and to say a lot has happened would be an understatement!

Before I start though as I've used the word 'journey' it has reminded me of one of my favourite quotes;

I've loved this quote for a long time, long before my diagnosis.

So 20th April 2015, a date I will never forget, it's one of those dates like a major world event such as the Sept 11th terror attacks.  In fact I will probably remember it more easily than an important family birthday!  I had been feeling unwell for about 10 days with what I can only describe as flu like symptoms.  Except I had a rash all over my chest, my neck was really painful and I had heavy menstrual bleeding (which was unusual for me).  Of course at the time I had no idea it was blood cancer but looking back the warning signs I now know were there.  This scenario I have now heard numerous times from other AML survivors and sadly from families of those for whom diagnosis came too late.  Survival rates for this highly aggressive type of Leukaemia are still dismally low with the best chance of a cure involving highly toxic, intensive chemotherapy and sometimes a gruelling stem cell transplant.

As my symptoms weren't improving it did start to cross my mind that, considering my usual good health, perhaps I should seek medical advice.  On the Saturday and with my neck being stiff and painful, the fever, sweats and rash I decided to go to the out of hours GP service thinking there was a slim chance it could be meningitis. I'm not one for rushing to the doctors for every minor thing but on this occasion felt I should get checked out.  After questioning me and an examination the GP diagnosed a viral infection. 

Having already had one week off work I had to go to my local GP surgery for a sick note and as I wasn't any better I was examined by their nurse practitioner.  We discussed my symptoms and while nothing was conclusive she put it down to an infection and gave me antibiotics.  There was no explanation though what was causing my neck pain which was getting worse (turns out this was my bone marrow causing pain due to the significantly raised volume white blood cells of AML).  As I was about to leave the room the nurse suggested I have my bloods done as a precaution...this decision saved my life.  I left the surgery and nearly didn't go to the lab (which is at the local hospital) to have my blood test as I was convinced that once the antibiotics kicked in I would be fine.  But something made me go...I remember chatting to the phlebotomist without a care in the world, apart from feeling really poorly.  No idea that I was suffering from Leukaemia, sepsis and my kidneys were in trouble.

That evening my mobile rang and it was a private number, I was in bed so nearly ignored it.  It was my GP who calmly explained that I needed to go to hospital straight away and that if I was on my own he would call an ambulance.  He knew it was suspected Leukaemia as the laboratory had escalated my case to the on call Haematologist and they had then called him. Having seen my blood results whilst I was researching my case it makes for scary reading.  Because Leukaemia has to be confirmed via a bone marrow biopsy he told me there was something wrong with my blood and as my husband drove me to the hospital, 45 minutes away, those words were running through my mind as I tried to work out what he meant, never once did I think blood cancer.  Cancer did cross my husbands mind and I remember him asking the nurses that night what they were treating me for, he was told sepsis which was true but it was Leukaemia that was causing it.  The nurses and consultant who treated me through the night were pretty sure what it was too, I look back now at the concern on all their faces and now I understand why.

When we had arrived at the hospital the team on the ward were waiting and got to work on me immediately taking lots of bloods, putting me on antibiotics and fluids.  I was just grateful that finally they would make me better as I was fed up of feeling so rough...little did I know!  Throughout the night I had more bloods and antibiotics and was moved into a side room in the middle of the night. Yet still it never crossed my mind that I was dangerously ill!

The next morning I had the first of many bone marrow biopsies yet still I didn't think it was anything too serious and certainly not life threatening.  Not long after that a Consultant Haematologist came into my room, she had tears in her eyes as she told be I had very aggressive Leukaemia, I was gravely ill, would need chemotherapy straight away, wouldn't be going home for weeks, asked if my family was complete as my fertility would be affected, and the list went on.  I now know that I had 90% bone marrow failure and had been referred to Palliative care, no wonder that consultant looked so upset.

In hospital during my first cycle of chemotherapy when I was very ill

Over the next 6 months I had 4 cycles of high dose, intense chemotherapy with lots of complications, scans, tests, unbearable pain, frightening and sad moments, set backs, weight loss, blood and platelet transfusions and lots more.  But finally in September 2015 I came home to start to put my life and body back together but still with visits to the hospital every two weeks initially, now I go every 8 weeks.  This is to check my bloods for any signs that the Leukaemia has returned, being in remission does not mean you are cured or that the cancer has completely gone.

I'm an Ambassador for the blood cancer charity Bloodwise which I love because after I had been at home recovering for a little while it dawned on me that I needed to use my second chance at life in a positive way, I couldn't waste the gift I'd been given.  I spent hours researching about my disease and blood cancer in general so that I had a good understanding of it and although scary at times it was empowering.  I want to raise awareness of the signs and symptoms as well as blood cancer in general, inspire those going through tough times not to give up, use my experience to help with studies and trial information and much, much more.

I also started to write quotes to help me express how I feel, quite often there are lots of thoughts flying around in my head so I find this process very helpful.

I wrote this to express how I felt being in remission

There has been many changes including friendships, work, my goals and outlook on life and my most surprisingly perhaps, my personality.  There's been some highs and lows with the realisation that my life had changed so much that it all feels like it's not mine anymore.  Coming to terms with life with the Leukaemia is many things and I write about it in this blog.  It helps me to put my feelings down 'on paper' and I want others to read my blog and have that feeling of relief you get when you realise 'phew it's not just me'.  I have found that whenever I have found that the feelings I've been having are similar to someone else's that it has really helped me move on and feel more settled.


Many thanks for taking the time to visit my blog...please keep coming back to me...Butterfly x

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/