Life after diagnosis, living with leukaemia, treatment, hair loss, survival, support networks, motherhood and anything else that might be useful!
One of the cruelest side effects of chemotherapy is hair loss. Your hair is a truly personal thing, part of your identity, so whilst it doesn’t physically hurt to lose it, mentally it can.
I was warned straight away that I would probably lose my hair, not a shock, it’s something that most people associate with cancer, and initially it seemed the least of my problems.
The Marsden funds a free wig for inpatients, they aren’t the best, but better than nothing. Cancer patients wear wigs for different reasons. Some simply can’t face the outside world without hair. Others want to protect friends and family from being embarrassed by their baldness - from experience there are people who simply can’t make eye contact with you when you’re bald. Then of course there’s the sheer fun of it, transforming yourself with long hair, blue hair, straight hair, curly hair, anything you can think of. It can give you a whole new image or recreate your original one. A wig can give you confidence and at the very least keep your head warm. I’ve seen patients transformed by their wig, and knowing I could get one without leaving the hospital gave me a contingency plan.
The Cheering Squad had much fun What’s Apping me images of all sorts of multi-coloured and sequinned hairstyles, bright pink was a favourite. The Marsden has an in-house wig team. I spent a humorous half hour with my husband trying on an array of styles. All the wigs have ladies’ names, for example ‘Beverley’, which turned out to be a very apt name when the Squad pointed out Beverley was a character in the Golden Girls, the style was very similar! We quickly determined that the long flowing ‘Kate Middleton’ locks I’d often dreamed of were not for me. We ordered three wigs to try, even matching them to my highlighted hair colour, and I finally chose one, not dissimilar to my own, but with a fringe that everyone said made me look younger, bless them.
Trying my final choice on in the ward it became apparent that keeping a wig on is quite tricky. On the advice of roomies I ordered a wig cap to wear underneath, it’s a bit like wearing a pop sock on your head, a special wig hairbrush, and special wig hairspray, who knew that even existed? All of them have stayed in the box and have never been used. Not because I didn’t like the wig, I just couldn’t be bothered with it.
At the same time I also ordered some hats. Too many hats aimed at chemotherapy patients are turbans in rather insipid pastel shades and swirly ‘old lady’ designs. They weren’t for me, but I managed to find a couple of black hats that looked OK. They have also stayed in the box unworn. A basic beanie sent to me by friends served me much better than any of them.
My hair started to thin, and what remained was long overdue a haircut, my roots were in a shocking state. A friend very kindly found a mobile hairdresser to visit me at home to tidy it up. Despite using a wide toothed comb and mild shampoo it continued to fall out. I won’t forget the morning I was in the hospital bathroom and it literally started coming out in my hand, clumps of it. I felt sickened. I wasn’t sure I could face being bald. Eventually the fear of the ‘straggly semi-bald witch’ outweighed the fear of being bald, so I allowed my husband to successfully shave my head to a subtle number 2. Afterwards I felt quite liberated, a worry had been taken away.
It was spring, not that warm, so my head felt quite chilly. I could wear normal wooly hats outside but they felt weird sat at home. My Mum sent a link to a Macmillan to me from which I discovered ‘Buffs’ http://www.buffwear.co.uk/buff-adult-headwear/original-buff. These are tubes of fabric that are very easy to put on and can be worn on top of each other to create more interest. They are designed as ‘active wear’ for those intent on climbing and hill walking, so they come in quite funky colours and patterns. Buffs served me well, easily fitting in my handbag ‘just in case’, especially useful when my neighbour arrived to give me a lift to hospital in her open topped car.
Parents Evening was a surprising turning point for me. I went wearing a Buff. I bumped in to a friend who was keen to see my husband’s handiwork. She told me to keep the Buff off, that my ‘hair’ looked great. Boosted by her comments I followed her recommendation. Parents who didn’t know me, either guessed the real reason or thought I was ‘well hard’, I did look like one of the Mitchell brothers. When my children found out they were mortified!
Over time what was left of my hair fell out, the sight of it on my pillow was horrible, my head was positively shiny, but it wasn’t a conscious decision to face the world bald. I had a 5-week spell in the Marsden where it’s normal to have no hair, so no Buff was required. I got used to not covering my head. I even sat on a bench outside the Marsden in Fulham Road with my bald head, PJs, surgical stockings and fluffy slippers watching everyone with their big shopping bags and flashy cars. Whilst I was aware I looked different, my chosen bench made it clear I was a patient. It didn’t seem to matter. Surrounded by such materialism and wealth I increasingly felt defiant, ultimately a it was meaningless when compared to life.
By the time I left hospital I no longer cared about my baldness. Wearing a scarf made me feel more like a patient, and less like me. I walked around town, travelled on public transport, went to medical appointments, people stared but that was their issue, not mine. I happily posed for end of school photos with my eldest who was dressed up to the nines, with her long hair curled. I even went to the end of school party like it, although I was banned from wearing the fake ear piercing and tattoos I’d bought to go with the new image! By then it was summer so when necessary I wore a hat to protect my head from sunburn, but I chose a stylish trilby and a big floppy number from Monsoon. Just normal hats that everyone wore.
Of course it’s not just the hair on your head you lose. I lost everything except my eyebrows. I missed my eyelashes, the only make up I usually wore was mascara, but I was grateful to lose my leg and armpit hair, no more shaving, a silver lining if ever there was one. The random chin and upper lip whiskers disappeared so the tweezers were put away, and I even had a Brazilian for the first time, that was interesting, but not something I intend to pay for in the future!
Soon after I finished my intensive chemo my head hair started to grow back quite quickly. No longer dyed it’s very dark, no one realised this was my natural colour, even the children. Strangely, but not unusually for a chemotherapy patient, my once dead straight fine hair was now thick and curly. It’s really soft, my youngest loves to stroke it, she calls me ‘Mummy Fluffy Hair’.
I’m tempted to keep it short, it saves so much time in the mornings, but I’m intrigued to see what happens if I grow it. A gentle bouncing wave would be wonderful, a frizzy mess would be too much like the disastrous poodle perm I once paid for. I’m still taking chemotherapy tablets so it’s possible my hair will thin again so no point rushing in to any decisions, we’ll just have to see.
For more advice on coping with hair loss:
I would just like to thank you for your very interesting and timely article as I am due to start chemo in a couple of months once I have removed enough from surgery. Unsurprisingly this is something that is already bothering me me so it came at just the right time.
I’m glad my blog was useful to you. I wish you every success with the chemotherapy.
iineresting read ..im very scared about my hair loss as I wear a hearing aid & cochlear implant & covering them up has been part of my life.....nobody wants to stand out from the crowd do they? especially on the school run....
I can understand why you're so scared about losing your hair, especially when you are used to covering your haring aid and implant.
If you are concerned about standing out then you could try a wig or normal hats, rather than 'chemo' turbans etc. A hat might make you still stand out but you'll just look very stylish, a wig more likely to make you blend in. Hopefully your friends at the school gate will support you through it too. I am blessed to have friends who treated me normally, and were just pleased to still have me there, chatting about the same normal things. The Dads were a bit more nervous about it so we just compared bald patches!
I suggest just experimenting to see what feels most comfortable for you and gives you the most confidence to face the world.
What a great read. You reminded me of losing my own hair in 2014. I had three stages of regrowth. First was the Sinead O’Corridor, which it turned out I could totally rock. Then came the Coco the Clown - tight curls al, over. Just awful. Those curls eventually were replaced by nice gentle curls and latterly even those have fallen out to be replaced by gentle waves. It’s all change.
Hope your hair grows as beautifully as you write
Oh wow what a beautiful thing to say, thank you! I fear the Coco the Clown look is coming my way, bring on the gentle waves!!
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