Hair Loss

"You’re going to lose your hair"

Illness is very often a hidden thing. We share what we want to, with whom we want to. When speaking to friends after my initial diagnosis I would say “I’ll be okay, as long as I don’t lose my hair”. I meant it, I felt I could handle pain, sadness, feeling ill, just as long as I kept my hair. When my results came back it was decided I would benefit from chemo, this was unexpected. Suddenly, my illness would not be hidden.

Preparing to be unwell is a very odd situation to be in. Ahead of chemo I spent hours and hours trying to get my head around it. I was given the option of the cold cap. I visited the chemo ward and was shown the equipment and it was explained how it would work. I was also told that this would add time to each of my chemo sessions and that it was around 30% successful at retaining some of the hair.

Illness can strip you of choice and for some, the option of using the cold cap may bring some light to an otherwise bleak outlook. For me, I quickly decided it wasn’t the right option. I’d read a lot about it and what stood out was how painful some people had found it but also how many people had had to give up on it during treatment, that it was just too much. My outlook had been very much focused on ‘nailing’ cancer, that I was going to ‘do it well’. The prospect of any part of my commitment to this failing was unacceptable to me so I added hair loss to the list of things I would need to face.

Preparing for Hair Loss

I began by reading everything I could. From leaflets and booklets to my dog-eared copy of The Complete Guide to Breast Cancer by Professor Trisha Greenhalgh and Dr Liz O’Riordan. I went online and spent hours looking for products, reading reviews and visiting forums. My focus became finding options. I had never experienced hair loss before, I didn’t know what I needed or what would work for me. What I did know was that I had a big head and was not a model! Many women and men look incredible without hair but I was very confident that I wouldn't be one of those people! What I wanted was to be prepared, I wanted everything to be in place so that when that bald bomb exploded, the bunker would be well equipped.

Before purchasing anything, I booked an appointment with a wig company. With a first class degree in honesty, I asked Jess if she would come with me! Simon and I had discussed my research into what I might need and he suggested waiting until I had attended my specialist appointment as I may well be able to get everything I need there and then. We also discussed our budget and he was keen for me to spend whatever I needed to in order to feel I was ready for what was to come.

The day for the appointment arrived and Jess and I travelled there with feelings of excitement and nervousness. I could liken it to visiting a bridal shop once engaged or a pet shop when you get your first dog…but it wasn’t quite like that. We were welcomed and taken to a room with shoe boxes filled with various wigs. I was installed in a chair facing a mirror and began to discuss what I might need. At this point, I still had my hair. I have reflected since, on the decision I had made to attend ahead of my hair loss and I’m so glad to have done it then, when I was strong and could confront what was to come but still go home with my hair. Not everyone has that option. If hair loss comes unexpectedly there is no preparing, I was lucky to have that choice.

I was given a wig cap and the time to begin trying on wigs had come. I’d worn wigs for fancy dress before but understandably this felt entirely different. From the research I’d done I understood that one cannot focus on trying to recreate their original look but rather find a look they are comfortable with.

I think I could write a whole book about what happened next! I have since discovered that our experience was not unique to this company, county or country. What I will say is that that was the day the seed was planted. What was on offer was definitely not what I needed. The prospect of looking worse added to my anxiety about what was to come. Jess was as honest as I’d hoped and became a caricature; with her eyes leaving her head as each new look was revealed! We laughed, we gasped, we tried to be polite. We weren’t put under any pressure to buy but I felt a niggling urgency to get it done. Having Jess there ensured I didn’t give in to this feeling. The wigs cost between £300 and £500, very much the average price for most synthetic wigs. What we have learnt since is that so many women buy that wig. They spend that money, and often much more, invest in something that ultimately makes them feel worse and ends up not being worn. Whilst I was outwardly saying “A wig is not for me”, somewhere inside I had this feeling that I shouldn’t give up.

Locally, there were several rural companies offering appointments in their garden offices or conservatories; an ‘intimate’ and ‘personal’ service. For me, ‘intimate’ and ‘personal’, were the opposite of what I could cope with. I couldn’t face discussing my needs in such a setting, I just wanted someone anonymous to tell me what I needed and solve the problem for me. I continued to look online and eventually fell upon a wig that looked too good to be true. It was significantly cheaper than others I’d seen, it looked natural and whilst not the same as my own hair, it was a look I thought I could live with. I ordered the wig! I’d done it and whilst I readied myself for further disappointment, I felt confident that at the price I’d paid, it was worth the risk. I also went on to order a night cap, scalp oils, a wide toothed comb, eyeliner, an eyebrow pencil, a bright red lipstick, a turban and a wig stand…from five different websites!!

And that was it! The wig arrived, I tried it on, I was happy. Suddenly I felt ready, I knew I could leave the house, see people and most importantly decide who did and didn’t know I was ill, I had some control.

Being Bald

My hair started to come out on day fourteen of chemo. The lovely Jo on the chemo ward had given me the best advice I could have been given. She told me to be gentle leading up to that day, to wash my hair very carefully and try not to brush it too much. She said that everyone is different but that some people like to shave the hair off once it starts to come out, that it might be less traumatic than living with the daily decline. For this, I will be forever grateful.

On my request, Simon put Sia on at full volume and agreed to shave off my hair. We asked our sons to come and see halfway through the process so that it wasn’t a shock and then it was gone. I put red lipstick on, did my mascara (the eyelashes and eyebrows left later!) and sent a picture to my sisters and mum. I wore the wig immediately; it gave my boys the chance to get used my new look and meant I could go out and function normally. Over the coming days, weeks and months I used every item I had ordered. I found that drawing on eyebrows and using an eyeliner, when my brows and lashes went, made a huge difference and the lipstick honestly made me feel fantastic!

I realised this was the kit and that if anyone else ever wanted someone to tell them what they needed, that these items were the key. There are over a hundred things I’ve done since losing my hair that just wouldn’t have happened if I hadn’t found the things I needed to function happily. Jess, Jo Jo and I were keen to make other people’s experience better than mine and that is where The Bald Box was born.