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!

6 thoughts on “The Reality of Chemo Hair loss – ‘It Just Isn’t Me’”

  1. Hi Anna, I came across your blog as I follow Victoria Derbyshire on Twitter. I am due to start chemotherapy after a precautionary operation following my first ever mammogram found I had breast cancer. I was lucky in that it was small and found early but unfortunately due to the type it was I am now facing chemo. I will freely admit to being scared stiff; obviously I don't know how the treatment will affect me and the thought of losing the long hair I've had for over 25 years really upsets me. On Tuesday afternoon I'm seeing a specialist nurse who will go through everything with me and tell me when my first cycle will be and after that I have an appointment with my hairdresser. She's cut my hair for 32 years and is almost as upset as me at the thought of cutting it short in preparation. I feel the same way you do about having long hair and I know I won't feel like me without it. I've always played with it (which used to really wind up my father!) and it's almost like a safety blanket. I even chew it when stressed! I know I'm having chemo for a very good reason and in the grand scheme of things losing my hair won't be the end of the world and that it will grow back (though of course as you say it would take a few years to get back to the length it is now) but it's so much a part of who I am and I dread how I’ll feel when I look in the mirror and don't see the me I'm used to looking back.


  2. Hello Sarah and thank you for taking the time to read my blog, it's always lovely to hear from others in a similar situation although we'd rather not have cancer at all. My hair too was always my security and I definitely hid behind it and it is tough but it really helps to have a long term hairdresser (I've known mine 20 years). Yes the chemo is life saving but how you are feeling is totally normal and I know this because I have spoken about it with a lot of women so don't feel bad. Don't let anyone tell you how you should be feeling, it's your body, your cancer and your emotions. As you know from my blog I am very open and honest and I am equally so about the positives I've gained. Such as renewing old friendships, making lovely new friends, knowing myself better, working with charities and lots more so I'm sure you too will find this. You are not alone and please keep in touch as I'd be happy to reassure and help you through your journey. Feel free to ask my anything…Warmest wishes Butterfly x


  3. Hi Butterfly, I had my appointment on Tuesday. The nurse was lovely (as everyone has been that I've dealt with over the past few months) and was very thorough. I managed ok until she showed me the chemo suite. At that point my knees buckled! A friend was with me and she managed to hold me up, though I could see that even she was affected by it all even though she had just come along as support. Afterwards we had a coffee and she calmed me down enough to drive home. I didn't see my hairdresser as I just wanted to go home so at the moment I still have my lovely long hair.

    I'm having my first cycle on 28th April. The PICC line will be inserted on the 26th and I'm seeing a wig maker the same morning to discuss things and see what I want. It's all very real now and I did have a bit of a breakdown at work yesterday but needs must and I just need to keep telling myself that come July it will all be over and I'll be able to enjoy the summer and celebrate the fact I came through it. Have a lovely Easter x


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