Moaning, Oligodendroglioma, Radiotherapy

Hairmageddon

First off I need to make it clear that many people lose all their hair due to chemotherapy (even nose hair! who knew?) or alopecia and that is so very much worse than what is happening to me. I am lucky really, and need a dry slap. But I’m still going to whine. At length. PS – The whine/rant posted this weekend has been updated.

At my first weekly radiotherapy clinician review, Claire, one of the Neuro Oncology nurse specialists said of radiotherapy induced hair loss:

It starts for most people in the third week, perhaps the end of the second, but when it goes, it’ll go fast.

What, like pop to Asda with a full head of hair, and come home bald fast? Fruitless, obsessive checking ensues.  One thing that writing this blog has taught me about myself is that I seem to love a short lived fixation. Most recently it was trying to figure out whether radiotherapy would spark more seizures. That’s old news. I don’t give a toss about that now. It has been replaced with finding out about pate covering options. Will I end up looking like a medieval monk, Max Wall or Tripitaka? Preferably none of them, but let’s prepare for all eventualities.

It starts with online wig shopping. A basic principle of ecommerce is that customers need clear, good quality pictures. At an absolute minimum you need a ‘pack shot’ – a picture of the product by itself, a ‘lifestyle’ image – the product being worn or used by a person to give a sense of scale, fit etc, and a close up shot of any details. Wig retailers laugh in the face of your ridiculous desire to see a picture of what you’re about to shell money out on. God forbid they show it on an actual person’s head. Wig photos come in two varieties: a picture of a celebrity very clearly wearing their own hair not a wig, or something fit to give you nightmares.  Would the jury please consider the evidence:

It becomes abundantly clear that any wig buying will need to be done in person. To this end, a lady visits the hospital each Friday for cancerous patrons to try her wares. I have a story about my first meeting with the wig lady so embarrassing and horrific, I can’t repeat it here. Somehow* we move past that, and I try on a couple of wigs. They’re awful. The main problem is that because my hair is so big, any wig just sort of balances on top like a double scoop ice cream cone and looks ridiculous. (*mainly by me hiding for two weeks, and hoping she has a really bad memory.)

Wig Pros Wig Cons
You get one free on the NHS It’s a fucking wig
Total coverage I don’t want to look like I’ve got cancer, and all the pitying looks that will bring
? For a wig to sit properly, what’s left of my hair will need to be cut off

What else? Someone recommends a Buff, a kind of stretchy snood, which the makers claim can be worn 12 different ways. Ways in which a Buff can be worn.

Lots of these ways are suspiciously similar, but hopefully it’ll work as a headband, which can be widened to fit the expanding bald spot, and a pirate style or beanie might be OK for around the house. I buy a proper one (the rainbow tie dye) and 6 knock offs.

selection of snoods

Snood Pros Snood Cons
Colourful Slip around on my remaining hair, leaving risk of baldy exposure.
Fairly versatile All the good coverage styles sit very close to the scalp, which doesn’t look like me, being used to volume around my face.
The knock off ones are all synthetic fabric which will be uncomfortable on the scalp.

Next up are hats.  Having always had big hair, a hat on me looks like the snowy peak of a a mountain, and threatens to ping off at any second. Very few even fit on my massive heed. The original grey cashmere beanie is fine for cold days, but too hot and itchy indoors. Instead, I look for fine jersey or bamboo ones and find a russet coloured one but it makes me look like Mr Gnome off Ben & Holly. It goes back. So I decide to knit one with bamboo wool and make another from jersey. Sewing with jersey and using a pattern for the first time, when you can’t be arsed to read any pattern or sewing machine instructions went about as well as expected. Luckily, the magnificent Amanda of Kitschy Coo is going to make me one, which will look a lot less like a floppy bucket than mine.

Hat options

Hat Pros Hat Cons
Good coverage Can be hot and itchy
Easy to slip on Very hard to find one that works both indoors and outdoors

The other option is scarves. I’m not a scarf lady. I may have a wooly one for when it snows, but none of the floaty accessory style one lots of ladies are good at wearing. So I go and buy a few, receive a beautiful Biba one from Cary, and cut down some old maxi sundresses with nice prints.

Different scarves

Scarf Pros Scarf Cons
Light, so not too hot Slip around on my remaining hair, making me paranoid a bald spot will show, so I spend the whole time grimacing weirdly in the hope that will keep them on.
Loads of different colours and ways of tying them They need to be secured with hair bands bobby pins, special grips, and hajib pins to give good coverage and help stop them slipping off, which is a faff, especially when having to take them off and on for appointments.
 Wrapping a couple of times around my head and tying at the top give the volume that my hair usually provides, so I look like me. There is less and less hair to secure all the grips and clips and pins to.

OK, so there are now options. We’re good to go, but what stands out is that I’m unlikely to be able to have my cake and eat it. The options that give good coverage work best if all my hair is cut off. Keeping the rest of my hair means risking exposing my slap headed shame. If only there was a way to know how much will go, where and when. I ask a radiographer, and she pulls up my radiotherapy plan, which looks like a heat map. Virtually my whole scalp is coloured red, orange or yellow. She makes a circling motion to indicate the top of my head, and most of the sides and back. “Sorry” she says.

On the evening of my 13th treatment, it starts. Running my fingers through my hair, some stays with the fingers instead of the head.

A small amount of hair that has come out

That first hank looks so small now.  24 hours later, pretty much all of the hair down to an inch wide strip on the right side of my head is gone.  The hair starts coming out in amounts like this:

IMG_0475

Blimey. Claire was right. That was fast! But at least I know what I’m dealing with now. At a push, with no wind and a very still head, I can still get away with a combover.

But it keeps falling out.

By the end of the weekend, I look like one of those variety acts who dress as a woman on one side of their body and a man on the other, then pretend to be two people by turning from side to side. On one side I’m normal, on the other, Gollum.

But it keeps falling out.

A shower becomes a fascinatingly masochistic act. Watching the hairs come out, plucking them out of the drain, and having to have a second shower to get all the hairs off your body. After another couple of days, the hair on the top of my head is gone. Thankfully, I still have some left at the front, but otherwise it looks like male pattern baldness that has slipped down to the right slightly.

But it keeps falling out.

By now our house looks like we’re trying to re-enact the Somme, but using hair instead of mud. Every bin is full. Every static object is covered. All of our clothes look like dog blankets, despite my best efforts to gather and dispose of it all. I always thought hair would come out in neat chunks, like the plugs in a doll’s head. Fuck no. The radiographers tell me it should stop falling out after a week.

But it KEEPS falling out.

Every time I brush what’s left of my hair, I fill the sink with the stuff. Braiding E’s hair for gymnastics is weird. How is possible to comb and move hair without it all tumbling out? The left side of my hair is going too now, and further and further down the back of my head. Scarves aren’t really a viable option any more.  9 days after the first hank fell out, I’m so fed up with the whole thing, I snap, and bang out my last blog post in devastated fury. It hurts too, which I never expected. If you’ve ever worn your hair in a high ponytail or tight braids, you know the feeling you get when you take it out at the end of the day – all tingly at the roots? It feels like a strong version of that all the time, and has done for two weeks now. Flipping the front of my hair from one side to the other makes me gasp in pain. So that’ll be gone soon too. Apparently that’s because the hair is long and heavy. If I shaved it all off, it wouldn’t hurt, but I’m still desperate to have that cake and eat it.

But it KEEPS falling out.

It’s been 12 days of constant hair loss now, with no sign of slowing down, but it will have to stop at some point, there is only a finite amount on my head. Yesterday I caved and cashed in the NHS wig voucher for a purple ombre number. If it’s going to look like fake hair, it may as well be properly fake. With my scalp burned and sore from the radiotherapy beams, wigs aren’t a full time solution, so for now I have a complicated, Quentin Crispesque solution of fanning out the hank at the front to peek out at the front of the scarf which covers the top and is pulled down the back, with what’s left of my hair hanging down my back. Loose scarf ends are secured with hajib pins to hide the back baldness. I carry an emergency beanie at all times in case this precarious edifice crumbles in public.

In retrospect, I should have cut it all off before starting treatment, but I hoped to be lucky and get away without losing much hair. Plus I’d look like a boiled egg.  Pre-treatment shearing always seemed like a defeatist attitude to me before, but it makes sense now. The amount that has come out could have made a good couple of wigs for someone else, and would have been less uncomfortable for me and made less mess.  You live and learn, eh? And all this with no depilatory benefit – armpit and leg hair still thrive and need tending to, which is a right swizz. But the very worst thing? Radiotherapy induced hair loss doesn’t always grow back. If it does, it won’t start for around 6 months. It’s going to be a long winter.

So here’s a handy list of things not to say to someone losing their hair:

  • It’s better than dying! Shit the bed. I literally haven’t thought of that, or tried daily to remind myself of it as a wretched bald creature stares back at me from the mirror.
  • It’s only hair! Wait what? I thought it was a kidney bean casserole. Fucks sake.
  • It’ll grow back!  Well it might not, so screw you.
  • It’s just your vanity/self image. I really hate this one. It implies that the baldy is just not woke enough to get over it already. Hair for me is not vanity. It’s protection. It’s so hard to explain. It’s not like I use my hair like a curtain, but even having short hair feels over exposed, people can *see* you and I do not like it. I have had short hair a few times, but only at the back. I need some round my face, but that’s one option I don’t have any more.

I’ll get over it. You’re just going to have to give me a lot of time. Until it grows back, hopefully.

5 thoughts on “Hairmageddon”

  1. Sorry its so shit, Ruth.

    Un-requested idea, with love:
    When my mum had chemo, I made her a beanie in long ‘eyelash’ yarn, and in a grey (to match her previous hair). something like this: http://static.knittingparadise.com/upload/2014/1/4/thumb-1388876620267-cap_1.jpg
    Advantage: the actual knitting/crocheting can be quite loose, so not so hot; bulk around the face (if you can find a long enough yarn); quick and easy to make; rainbow opportunities
    Disadvantages: Daft (this could also be construed as an advantage)
    See – this could be you: https://usercontent1.hubstatic.com/11822122_f520.jpg
    or this: http://thezenlady.com/Rainbowsideview.jpg
    or this: https://www.pinterest.co.uk/pin/407505466266812020/
    Possibilities are endless: https://images4-e.ravelrycache.com/uploads/madmonkeyknitter/156293552/Instant_beard2_small2.jpg

    I was inspired by this: http://www.headhuggers.org/patterns/kpatt10.htm but probably used another beanie pattern, and much longer yarn.

    Like

  2. Hi Ruth, hope everything is alright. I find your post inspirational, and downright amazing! You should check out my blog, I posted something you might like. It’s called Beauty.

    All the best of wishes

    Liked by 1 person

  3. Oh Ruth! I have only just heard of what is happening to you. I can only imagine the horrors of loosing your gorgeous hair on top of it all too. As if you don’t have enough to worry about. Big hugs. Hope the radiotherapy does it’s medical wonders and that you are not too exhausted.

    Like

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