The one piece of advice I wish I'd been given...

Everyone has an opinion on things and whether you are looking for one or not, people are often over-zealous in expressing them! From advice about getting through 'my chemotherapy', to the necessary adjustments to my diet and obvious malnutrition, I've heard it all, and more often than not, they have come from strangers. Strangers who don't know about or understand alopecia, let alone understand the emotional or physical implications of the condition.

For me, one of the best opportunities I have been given is to share my experiences with others and have them share theirs with me; Alopecia UK in particular has been instrumental in this, establishing support events that put me in touch with other alopecians, but so too have people who know about my hair loss and have pointed other alopecians and cancer patients in my direction for a chat. Alton Towers earlier this year was one such event and if you are looking for support, I suggest you head in their direction.

Anyway, I digress! Whilst I received oodles of advice, both useful and not, the single thing I was not told, nor ever really considered, was how to take back control - shave your head! I appreciate, the idea of shaving off the hair which is falling out anyway will not be everybody's first choice, but it is the one thing I wish someone had said to me, no matter how hard it would have been to hear. At the time, shaving my head never ever occurred to me; how could I possibly identify or consider an option which would forcibly remove the hair I was trying so hard to deny was falling out. What's more, if anyone else did, would they really consider telling me to shave it all off, when I was lovingly combing and untangling an ever-dwindling covering on my cranium? Probably not, yet to this day, it is the single piece of advice I wish I'd been given, and furthermore encouraged to consider. That's it - three little words:

..."shave your head"...

About six weeks before the hair on my head finished shedding, I remember this feeling of helplessness. There was a six inch patch of hair remaining on the crown of my head, a few wisps around my nape and two fringe pieces that ensured I looked remarkably like a monk who'd made the faux pas of opting for curtains! Not my best look, but one that I was nonetheless sticking to! I was sat on the floor with my legs crossed and my mum was tenderly teasing the matted mess on the top of my head, seeking to ease out the tangles and return it once again to a semblance of my shiny natural hair. She'd been doing this for weeks as the hair got less and less and the matting got worse and worse but I needed it (thanks mum)! That particular day, I was at rock bottom and an anxious feeling had settled at the bottom of my stomach like someone had grabbed it with an ice cold hand. I felt trapped. No other word for it, trapped. Trapped I think by my own emotional attachment to my hair, by the uncertainty of what I faced, by the ridiculousness of the situation I found myself in. I started to feel claustrophobic and with little warning, I pushed myself to my feet, choking back sobs as I sought a way to be free of this prison. I stumbled my way up the corridor and grabbed a pair of scissors, racing back to my mum as she ventured towards me looking helpless. "Get it off." I said "Get it off, now!"

Mum guided me to a chair and I remember the look of trepidation on her face. Was cutting it off the right thing to do, or would she be helping me take an action I'd ultimately regret? I continued to whisper "get it off" and mum gingerly picked up the offending locks of hair. A quick snip and she was through - gripping what was once my crowning glory and was now little more than my tormentor and betrayer.

Within moments I felt better! I was free! For months, I'd watched as my hair seeped from my head and now, I was back in the driving seat, back in control. After that point, I don't really remember very much; I remember heady waves of relief, anger at not doing something sooner, confidence as I felt a little of my old self eke back in and most of all gratitude. Gratitude to my mum for wielding the scissors, gratitude to my family who were there no matter what, and gratitude to my boyfriend for loving me in spite of it all!

I can't really narrate the following few days - they're a bit of a blur as the stubble continued to shed, but I slowly felt like I was finding my feet again. Those days and weeks were so much better than what had gone before! True, the hair was still shedding, but instead of clumps of visible hair remaining on my pillow or washing down the drain, they were replaced by tiny bits of stubble barely there to be seen or remind me.

I cannot and will not presume to tell someone else how they should or should not cope with their hair loss, but when someone asks me if I regret anything about my alopecia, it is always my lack of confidence to take control back sooner. Sure, it doesn't change the fact it's happening, or make it any different physically, but it made a whole heap of difference emotionally as I felt back in charge! One thing I should of course probably add is that there will be a tipping point in everyone's journey; there is no way I'd have had the courage or even need to shave my head early on in my journey, so if someone had said 'shave your head' I easily could have ignored it, however in hindsight, I simply wish I'd had the courage to do it a month or two before I did.

To anyone who is supporting someone going through the same, it isn't easy, but remember, sometimes the hardest suggestions to make are the ones most needed, and at the end of it all, be there as a hand to hold, no matter what!

Victoria x

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