I felt really drained on Thursday. With the death of Rachael Bland on Wednesday, many within (and it seems without) the cancer community felt the loss. For those affected by cancer, Rachael had been a voice for us, especially for those who are officially ‘younger women with cancer’. It was great to be able to direct people to the podcast ‘You, Me and the Big C’, and say this is the reality of what it’s like. Cancer is rubbish (you really don’t want it!), but also, you can get on with life – you just have to find new ways of adjusting and living (and I’m finding, bumping into my own limits, and other people’s expectations quite frequently). In fact, it seems that most people with cancer gain a dark sense of humour to live with the constant fears, appointments, and niggles.
I’m in quite a few Facebook groups related to cancer (are you surprised by that?), and she had definitely struck a chord with many of us – with some appreciating the way she’d lived with cancer, and others wishing they didn’t have to think about it as it’s too close to their own situation/fears. Outside of those groups, it struck me that Rachael had joked with Kate Bottley that her hair extensions, which would last 12 weeks, were likely to last longer than she would (radio episode):
You can catch up on my chat with the wonderful @revkatebottley and @jasonmohammad on @BBCRadio2 Good Morning Sunday here from 0820 https://t.co/Lv2LvI6RL5 I got to choose @thekillers to play and Freddie didn’t break anything! Top morning! ??? #youmebigc #cancer #BigCLittleMe pic.twitter.com/Wg6vKsJyKM
— Rachael Bland (@Rachael_Hodges) July 22, 2018
Is it just hair?
It brought me back to a half-written blog-post about ‘hair’. It is amazing how different people can look without hair, or with a wig on – and this is something that many cancer patients have to deal with. Many people say ‘oh, it’s just hair, it’ll grow back’, and for some patients that is fine, but many struggle with the hair as it disappears – they realise just how integral it is to ‘who they are’. And for many, the bald look ‘gives away’ their status as a cancer patient (yes, we may be, but it’s not the only thing we are!). I stressed for much longer over whether to go for the cold cap, than over whether to have fertility treatment, a mastectomy or a lumpectomy, and whether to move to my parents for the duration (which were the decisions I had to make in the first 48 hours after diagnosis). I didn’t think I was that bothered over losing my hair, but felt I should give cold capping a go:
The nurses were very clear that this was a week by week decision, based partly upon whether you wanted to continue, and also whether there was enough hair left to continue. A friend looking at the top of my head said they could see it had thinned, and the hairdresser afterwards said that she could see the irritation where hair was growing back, but otherwise – the nurses said they really hadn’t seen such a good result! This was just before my final chemo:
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Like the idea of these Henna Tattoos for bald heads, and there are plenty of head covering options (easier in winter, I have to say!). Maggies often gives away a free hat on diagnosis, I won £50 worth of hats from Annabandana via Ellie’s Friends, and Amazon (easy for those middle of the night awake-shops!) has a pretty decent selection of choices. There’s also the question of wigs – but although I tried mine – found it bit heavy, insecure – and some just can’t be bothered with them!
It’s not just head hair!
When you think about hair loss, the obvious is to think about the loss of head hair, but it’s all hair, not just your head hair. Yes, you may save some money on hair-removal products (though not everyone is even this lucky!), but I got an ear infection from lack of hair in my ears, eye infections from lack of eyelashes (and that makes you look quite different too, though because of Look Good Feel Better, I learnt (vaguely) how to shadow around the eyelids so they don’t look so bare!) – which also causes very watery eyes.
Was very happy once my eyelashes started growing back – although they were short, dark, thick, wiry, and quite painful to begin with, but those fell out swiftly, and more regular lashes grew through. Around 4 months later, I’ve got a lot of lash fallout – because they all grew at the same time. Apparently this should settle down with time (otherwise we’d all have a cycle of bald eyelids, right!)
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One of the things that lasted for a long time was a very bloody, snotty nose, until nasal hair grew back, as this particularly attractive image demonstrates:
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Why does hair come back curly?
One of the fun things to observe in Facebook groups is the hair growth pics – people quite often share a timeline, demonstrating how ‘soon’ (not always as fast as people hope) hair grows back. For many people their hair grows back in the famous ‘chemocurl’ (really good advice on how to care for it – practically and psychologically): in a leaflet I read before chemotherapy, I remember it saying that the hair root is collapsed by the stress of the treatment, so the hair is kinked when it comes out. The expectation is that most people’s hair returns ‘to normal’ with time… .but in the meantime it seems to be a little wild!
Braving the Shave?
For those who have decided not to cold cap, there’s a lot of talk about ‘taking back control’ over the hair loss by shaving the hair. It saves dreading waking up to piles of hair on the pillow, wondering when that might happen, and the patchy look (for most people it doesn’t seem to fall out leaving a smooth head!) – and you learn to live with it.
There’s a huge amount of debates amongst cancer patients about the sponsored Brave the Shave (by Macmillan), with some taking offence that as it’s a choice, and it’s “just head hair” it’s nothing like the experience of cancer patients. Others feel that anything that raises money for cancer, and is done in the right spirit, is worth it. If you’re thinking about doing it for a friend, maybe find out where they are on this before doing it!
Dr Bex Lewis is passionate about helping people engage with the digital world in a positive way, where she has more than 20 years’ experience. She is Senior Lecturer in Digital Marketing at Manchester Metropolitan University and Visiting Research Fellow at St John’s College, Durham University, with a particular interest in digital culture, persuasion and attitudinal change, especially how this affects the third sector, including faith organisations, and, after her breast cancer diagnosis in 2017, has started to research social media and cancer. Trained as a mass communications historian, she has written the original history of the poster Keep Calm and Carry On: The Truth Behind the Poster (Imperial War Museum, 2017), drawing upon her PhD research. She is Director of social media consultancy Digital Fingerprint, and author of Raising Children in a Digital Age: Enjoying the Best, Avoiding the Worst (Lion Hudson, 2014) as well as a number of book chapters, and regularly judges digital awards. She has a strong media presence, with her expertise featured in a wide range of publications and programmes, including national, international and specialist TV, radio and press, and can be found all over social media, typically as @drbexl.