Butterfly Anna
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Hair Loss during treatment and beyond

Butterfly Anna
Posted by
26 Nov 2017

It's over two years since I finished treatment so I've written this about my hair's journey with blood cancer

There are so many thoughts and feelings flying around your mind when you are going through treatment and beyond treatment so at times you feel like you are going a little crazy. And though friends and family can very supportive they are not able to really put themselves in your position. So I've put this together to share my hair loss and hair regrowth experience.

Its only just recently, after just over two and a half years that I've started to feel like I'm back, that I feel comfortable with how I look and this means I am on the way to being whole again. I still have a long way to go with other issues, especially psychologically but the way I look is one of the elements of adjusting to the new normal. My hair is shoulder length now so I've been using the hair accessories that I'd packed away. At one point I did consider throwing them away because I just couldn't imagine ever having hair again.

Before Leukaemia my hair was really long and was a massive part of my identity, I'd been obsessed with it since I was a child. People who know me really well will remember how I used to put a lot of effort into it, all the styles I used to do. Looking back it was obviously my 'comfort blanket' By this I do not mean that I was vain, far from it, but as I have found out there is a lot more to your hair then you realise.

For so long during and after treatment my lack of hair meant the the Leukaemia I was fighting was there, like a beacon, my bald head. Every time I passed a mirror or reflective surface it was there. Another unsettling thing was looking at myself in the mirror and seeing a stranger, no matter how long I stared at my reflection I just couldn't see myself. Every time I looked my heart would drop and I'd feel

People immediately knew that I was a cancer patient which was fine as they were only ever kind but I felt like I had a big sign on my head. When you are walking down the street and glance at passers by it's one of the things you notice about a person as well as what they are wearing and their demeanour. It's human nature to make a snap judgement on someone's appearance whether we want to or not. So when I was out in public there was a look strangers would give me.

I have spoken to others in the same position who've agreed. One lady told me that she had been mistaken as a man several times so try and tell her that it isn't important. Another lady has had some insensitive comments said to her and so have I. This is why when some have said that hair isn't important I don't agree because but I have lived without it and know how it really impacts on you

I've also realised that its a very personal and complex issue, its not just hair as in the physical thing. Before my diagnosis I had used my hair to express myself, my mood, it gave me confidence and was part of my identity. For me styling it was a bit like creating a 'picture' of myself, how I wanted others to see me depending on how I was feeling. So you see when in all fell out I lost my identity and part of my personality. I'd also lost control. How my hair was wasn't my choice, everyone has that choice, but I didn't. When I'd meet people I didn't know I had this urge to tell them that my hairstyle wasn't my choice because I didn't like it and didn't feel it was 'me'. I felt like a stranger in my own hair...if that makes sense.

Once I'd finished treatment and ventured back into the outside world people wouldn't recognise me which had a negative effect on my confidence. Having to stop them and say 'hello, its Anna...do you remember?' was awful and this was people I'd seen pretty much every day before my diagnosis. I would hold my breath half expecting them to still not know who I was, irrational I know but that was how it was. In the end I would avoid people and keep my head down, I became withdrawn.

At first I used to make much more of an effort with my make up to compensate for my lack of hair, wearing brighter lipsticks and darker eye liner. I also had more piercings in my ears.

I am lucky enough to have a hairdresser who I've known for many, many years and I felt totally comfortable with her seeing me when I was very self conscious. She'd come over to the hospital to cut my long hair off before it all fell out and then to my house once it had all fallen out to shave the few remaining wisps off. All the way through my hair regrowth journey she's given me honest advice on how to style it and how she should cut it so that it grew back well. When hair first comes back after chemo its very damaged so she advised me to keep it short yet stylish until the healthier hair came through. She gave me a stylish cut even when there wasn't much hair to work with! Then there was the colour...unable to colour it for a long time because of the chemotherapy when the time finally came I was really happy with the result. Because she has vast experience and knew me and my history so well it really helped make the right decision on what to try. I've had so many compliments on my hair colour and all the different cuts over the past 24 months.

There are many, many milestones when you are recovering, these are the ones I remember about my hair; the first time I could get a pretty little clip in it, after trying several times over several weeks, the first time it needed a trim, the first ponytail I managed even though lots of hair fell out, the first time I used my hairdryer again, the first time I felt the wind blow it, the first time I could wrap a towel around it, the first time I could play hairdressers again with the 8 year old, the first time I felt it tickle my cheeks when it got long enough, the first time I had it coloured, all little things but for me moments that marked my progress.

My hair is shoulder length now so I've been using the hair accessories that I'd packed away. At one point I did consider throwing them away because I just couldn't imagine ever having hair again.

So here I am just over two years since finishing my treatment with hair...something we take for granted until its gone, something we'd like to think we don't really care that much about, until its gone, something you don't think defines you, until its gone.

For those of you who are just starting on your journey remember you are not alone, everything you are feeling has been felt by someone, those irrational thoughts are normal. In time it will come back and you will start to look like yourself again. Also, it's your hair loss experience so however it makes you feel is ok, don't feel that you are ever wrong and if anyone judges then they're not the kind of people you need to be around, we are all individuals and think differently and that is ok. And don't forget humour, I have laughed about it along the way too...when I had less hair than my husband or the time when my daughter told me I looked like a boy! You've got to laugh sometimes!

Personally I found some comfort when I found others like me who were sharing their regrowth pictures and stories mainly on Instagram. I joined in the conversation and gained a lot of support from people I've never met face to face.

(I fully understand that this isn't the case for everyone, for some their hair isn't a big part of their identity or personality so I imagine they feel differently about the whole thing).