I’ve had about 8 eye operations, 2 bowel surgeries and 2 chemo treatments, but the most traumatic experience so far has been losing my hair as a result of chemo to treat my desmoid tumour.

It’s such a personal thing that impacts on your identity, how you dress and most importantly how you feel about yourself. Because it is so personal, I didn’t realise or fully comprehend how much it would impact me until it happened and the complete loss of control it created.

I have very thick hair, so it was a long process for it to fall out. Thankfully a month before I knew I needed chemo, I had decided to cut my hair to bob length, so there was less hair to deal with. At first it was just a few strands at a time when I woke up or dried my hair from a shower. That was enough to send me into a panic, but I was also still in denial that maybe it wouldn’t all fall out… so I didn’t want to rush into shaving it off and then regret it.

Little did I know it was only going to get worse. The next week it started being huge clumps that would fall out and form a huge pile on the floor. As I said though, I had thick hair so this was still only the beginning. I managed to hold out a few more days before I realised that I couldn’t go through this any longer. It was now starting to hurt as well because when your hair falls out the hair follicles die, so every time I moved my hair I had a sharp pain. So I took the plunge and got my hair shaved off.

I guess it is true what I’ve heard others say, by shaving it off it gives you back a brief moment of control and I instantly felt relieved once I did it. I had already arranged a wig that matched my hair colour and length so the next phase of the hair loss was wearing the wig with confidence every day for about 6 months.

My wig did look pretty real and once I got used to having something on my head all day it didn’t irritate me at all. It was when I didn’t have my wig on or a beanie on that I was very confronted by what I saw in the mirror. A pale, bald head with a few short hairs really didn’t make me feel like myself and so I tried to limit seeing myself like that as much as I could. During that time I found it hard to believe that it would ever grow back. It also really challenged my identity. Physically I felt ok, apart from the large tumour, I was incredibly lucky not to be sick in any other way and had no pain from my tumour. But my baldness, wearing head caps/beanies/a wig made me feel like I was sick and that everyone would know I was on chemo.

So when it did start growing back I was pretty happy and by December last year I had full coverage on my head.

A few weeks ago I decided I couldn’t wear my wig anymore, I had the same look every day and it was time for a change, time to reveal the pixie cut. I’m getting more confident with it and until it grows back long again, I’m trying the best I can to embrace the new look and not feel confronted by it.

The treatment I am on now doesn’t cause hair loss which is a relief for me, but I do wonder if in the future I needed chemo again that causes hair loss, how I will cope now that I know what it is like.

There are also a few things I do like about short hair and have learnt from this experience:

  • If I had the choice, I know that I never would have gone for a pixie cut. I may or may not have it short like this again, but at least now I can say that I’ve tried it out
  • The pixie has been on trend last year/this year, so I’m of course following fashion
  • On hot days it feels really free and light and my hair has grown back really soft
  • Now that it is growing back and I’m past the bald stage, I now believe and know that it won’t be long until it is long again

Here’s the progression of my hair so far:
Before chemo, wearing my wig, hair growing back in January, and now!