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