Cancer survivor Jenni Elbourne explains how she grew to embrace her hair loss as an emblem of strength after being diagnosed with acute myeloid leukaemia aged 33. She documented her journey in words (and selfies).
I have never liked my hair. I barely had any until I was three or four years old; just a kind of pathetic wispy covering on top of a head that looks far too big for my body in most of my baby pictures.
When it eventually grew, it was fine and flyaway, couldn’t achieve much length and got greasy really quickly. To top it off, my hair was poker straight at the front but curly at the back – a combination which never seemed to come into fashion. The one redeeming feature was that it kept its pale blonde colour well into adulthood – hairdressers would often comment that this was unusual – though perhaps they were just trying to find something nice to say about my otherwise underwhelming tresses.
My hair was the least of my worries when, at the age of 33, I was diagnosed with acute myeloid leukaemia, and told I would need to undergo chemotherapy. I wasn’t someone who dwelt much on my physical appearance, or that of others – it’s what’s on the inside that counts, after all. And while I wasn’t exactly looking forward to being bald, I didn’t feel I was losing my finest feature either. At least that’s what I told myself.
Hair loss doesn’t actually happen until a few weeks into chemotherapy, which feels weird because you start wondering if it actually will come out. For some types of chemo, you can wear a “cold cap” which reduces the effects and protects your hair, but this wasn’t possible for me because acute leukaemia requires an extremely intensive form of toxic drugs. So I knew all along that my hair would be coming out; I just didn’t know when.
The strangest thing about hair loss is that the hair detaches itself when it’s ready, but it doesn’t actually fall anywhere. Instead it will rub off on clothes and pillows, or come away in your hands during a shower.
When this started happening to me, towards the end of my first hospital stay, I quickly realised I’d have to choose between leaving my hair unbrushed, or gradually brushing it out of my head. Within a couple of days, I was brushing huge clumps into the bin, and it didn’t take long before there was barely anything left.
In keeping with my history of hard-to-style hairdos, a few long, stubborn stragglers somehow survived my first treatment, and I left hospital looking a bit like Riff Raff from the Rocky Horror Show. Having initially allowed things to take their course unaided, at this point I decided to have the last few strands shaved off, in the hope that the new growth would be a little more consistent when it eventually arrived.
I’ve always thought my face is too pointy for a pixie cut, let alone a bald head, so I was pleasantly surprised that there were certain angles from which I didn’t look too bad without hair. Smiling certainly seemed to help.
This being said, it was winter by the time I lost my hair and I needed to wear a hat for warmth, so my bare head didn’t come out all that much. I quite enjoyed experimenting with headscarves and beanies, and although I was entitled to a wig on the NHS, I never felt the need to hide my hair loss.
With three more rounds of chemotherapy on the horizon and my life turned upside down by my illness, my hair was really the least of my concerns. I’d happily have agreed to being bald forever if it meant I could be cured and get on with my life. I gave away spare hair products that I knew I wouldn’t have reason to use for some time, and never felt emotional about it. It’s only hair, I told myself.
But I soon realised – every time I caught sight of myself in a mirror – that such a dramatic change in appearance, one that was inseparable from my cancer, had altered my perception of my whole identity. For months I could barely go five minutes without thinking about my illness, and just when I managed to occupy my brain with another distraction, I would glimpse myself on a FaceTime call, or reflected in a window, and everything would come back.
I wondered whether other people – who spent longer looking at me than I spent looking at myself – got used to my appearance more quickly, or whether for them too it was a constant and painful reminder that my world had completely changed. For me, this was by far the worst aspect of losing my hair.
My hair had been growing back for a couple of months when I received the news that I’d been dreading – the chemo had not succeeded in curing my leukaemia on its own, and I would need to undergo a stem cell transplant. To prepare for this I would have total body irradiation and a further round of chemotherapy, with a different drug this time. And I should expect to lose all my hair again.
The month I spent in hospital for my transplant was the hardest time of my life – physically gruelling, and with the added complication of a visiting ban due to the emergence of of Coronavirus in the UK.
Losing my hair was insignificant compared to the life-threatening and painful side effects of my intense conditioning. But my hair remained a symbol of my progress, and to know that I would lose it for a second time really hammered home the fact that I was not on a linear journey towards recovery. Things would have to be worse before they could be better.
And things did get much worse – for about a week I felt so unwell I could barely move, and it was during this time that I could physically feel the hair detaching from my brittle scalp. It rubbed off onto my pillow and sometimes made it into my mouth during my fitful sleeps. There really is nothing like spitting out your own hair to remind you that life isn’t going to plan. But much of it just stayed on my head while I waited in bed for the worst days to pass.
After at least seven days of barely sitting up, I asked a nurse to help me shower, not feeling confident that I could safely navigate undressing with my drip still connected, and stay standing for long enough to wash myself. As soon as the water touched my head, all the hair I had grown in the months since my first treatment was washed down into the plughole, and this time there was no need for a razor – in a matter of seconds, I was properly, 100% percent bald.
I looked in the mirror and saw a cancer patient all over again; a backward step, a mountain of recovery still to climb. Before getting back into bed, I got a beanie hat out of my suitcase and thought at least I didn’t have to brush it out this time.
It’s now over six months since my stem cell transplant, and my hair has been growing back for some time. It is undoubtedly thicker, darker and curlier than it used to be – “chemo curls” are a common occurrence after cancer, and tend to last for around a year, after which my hair might revert to its old self again. I still double-take whenever I catch sight of myself in a mirror, and the fact that I look so different continues to remind me that I’ve been through something which changes you forever.
When I’m feeling down, the added hassle of this awkward short hairstyle that I didn’t choose can seem cruel and unfair, but on the whole I am learning to embrace my new look and be proud of it. I never wanted to have cancer, but I did, and that is a part of me now. My hair is my badge of honour.
Images: selfies courtesy of Jenni Elbourne, headshot by Susanne Hakuba