Butterfly Anna
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The Reality of Chemo Hair Loss

Butterfly Anna
Posted by
06 Apr 2017

My experience on losing my hair and how it's felt over the past 18 months since it's been growing back.

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. 

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).

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 defiantly 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!