Butterfly Anna
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Remission - One year on...

Butterfly Anna
Posted by
24 Feb 2017

A blog about my life since I've been in remission from Acute Leukaemia, the past 18 months

I decided to write this as over a year has gone by since I've been in remission and I'm still trying to make some sense of it all. I feel like I have lived several lives, so many changes and lots of new experiences packed into just eighteen months.

When I left the hospital on the day when my neutrophils were finally high enough all I could think about was getting home and never having to leave it again.  Still caught in a whirlwind, in denial and waiting to wake up from the nightmare I didn't look too far ahead.  I didn't want to know anything about AML, read anyones blog or face up to the whole thing...oh how things have changed! 

I have been thrown into this cancer world which I've done my best to embrace, taking a step back to breathe sometimes and at other times running headlong into it.  Mostly it has been kind to me however, I find myself using the phrase 'double edged sword' more and more.  It's a world I was so naive about even though people close to me had been through different cancers I totally underestimated the ripple effect of it and how it changes you.  Before, I winged it, like we all do, telling myself 'it won't happen to me'. 

During the many hours I spent in hospital during my treatment I fantasized about when my life would get back to normal assuming this would be the case.  Well that never happened and I am coming to terms with the fact that I have to build a 'new normal'.   I know I have changed, it would be impossible to have been brought back from the brink of death without it having any affect on me.  I see things are lot clearer now, what I want to achieve and things I don't want in my life anymore. Emotionally, while I was away from my loved ones...not even being able to hug them at times due to my compromised immunity, I cut myself off.  I've struggled to open myself up to affection again and deep down I know I do it to protect them in case I relapse and have to leave them again...possibly forever.  Even a year on I don't know if I will ever be able to fully open up and I haven't really cried that much considering, always stopping myself from really letting the emotional me back in. I really don't know how my daughter would cope as I've only just managed to put her back together again.

Making new friends has been something unexpected but absolutely wonderful, I now have some exceptional, brave, caring and like minded people in my life.  I would not know them if it wasn't for this disease.  There are some amazing people out there and going through the worst time in my life has definitely restored my faith in humanity.  I have experienced some acts of kindness that have really touched me, from the young man who helped push my wheelchair into hospital on the fateful night it was admitted!  Some have been so generous with money, time and gifts, this means more to me then they will ever know. 

As a child I was always writing, loved stationery and was obsessed with butterflies...was it fate that this happened to me?  Now I am writing which means using lots of stationery and while I was in hospital my mum would call me 'Butterfly'.  Next the Butterfly logo was created for me and I started calling myself 'Butterfly In Remission'.  Not only am I writing this blog but, it has given me the confidence to write original quotes about my feelings and life after my experience.  In fact it has given me the confidence to take on a lot of things that I would never have considered before.

Some survivors see their disease as a blessing and I can relate to that, but then it hits...the Leukaemia is still lurking in the shadows!  I've always had this love of helping others and now I have something that I can really use.  If I can help another person going through cancer treatment and make them feel confident and reassured it means the world to me.  On several occasions I've been contacted by people from all over the UK and abroad, offering the help and advice.  They have had nothing but praise for my blog, it's meant they've felt less along...my job is done.

Researching about my disease and blood cancer in general has reminded me of my passion for learning new things.  Although, don't get me wrong, there has been heart stopping moments, finding out that AML is rapidly fatal meaning I had only days to live, what remission really means, survival statistics, etc. Overall though I have really enjoyed researching, talking to my consultant, Macmillan nurse, Bloodwise colleagues and other cancer patients about it.  For me understanding and knowing absolutely everything feels empowering and has helped me feel in control of it, I am fully aware of what might happen to me in the future.  

Even though lately the fatigue and physical weakness has been really getting me down I suppose really I've come a long way compared to where I was when I first came home from hospital.  My body was sore from spending so long in one place. I couldn't be left alone so had 'baby sitters' all of the time...lately I have missed this even though it was a tough time I look back with very fond memories that I will cherish.

It's certainly been months of ups and downs, surprises, mixed emotions and discoveries...long may it continue!

 

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