Tuesday 25 February 2014

A Cold Cap

I'm not scared of spiders, nor would I jump on a chair if I saw a mouse. In truth I have few phobias, save for birds trapped in kitchens but I blame that on the cat - RIP Gismo. Not that I ever witnessed the squalls and spitting feathers for more than a few seconds, you understand, before slamming the door behind me and yelling to my beleaguered mother to come and eradicate the irate bird from the scene.

But a demented bird is about it for phobias for me. Apart from the biggy. Apart from The Cold.

Cold fingers and toes have driven me to tears on several occasions. I'd like to say that I have Raynaud's Disease but can't actually claim it to be proven. Although I do know that however many pairs of gloves I wear when I walk, however many layers of Woollie Boolie socks and shoe covers I wear when I cycle, my extremities are always colder and whiter than everyone else's.

This fear of the cold invades my rational thought, sending messages to my brain when my ankles are lapped with cold water, that this is a dangerous situation, that I should evacuate immediately, when the rest of my family and friends are bathing merrily, seemingly oblivious to the potential for the hideous effects of Ice Cream Head which threaten us all.

So why am I talking about the cold?

It's no secret that most people who undergo chemotherapy for breast cancer lose at least some of their hair. I have long hair and confess that the thought of being bald distresses me slightly less than the prospect of finding large clumps of matted, curly hair all over the carpet, in my hands after combing, in the sink and, horror of horrors, on my pillow.

Even the most beautiful of wigs can't prevent the hair loss on the pillow.

When you're diagnosed with cancer, it's terrifying. However, several practices quickly kick into play which help to make it more bearable. One of these practices is the allocation of a key worker, a nurse specially trained in cancer care assigned to be your first point of contact throughout treatment. When I realised that the nurse who'd helped to break the news to me and my husband was going to be with us on every step of this bumpy cancer route, I could have jumped up and hugged her. She was so calm, so comforting, so knowledgeable that I started to feel that we'd be alright after all.

My key worker mentioned the Cold Cap. It's a tool which may - 'may' being the operative word - prevent hair loss as a result of chemotherapy. The process involves freezing the hair follicles while chemotherapy is administered. The patient often sits in warm blankets and gloves and is advised to take pain killers before the cap is applied but nonetheless, the process isn't for the faint-hearted

Did I mention I don’t like the cold, my pathological fear of Ice Cream Head? 

Cooling Cap, thanks to Macmillan Cancer Support for the picture
When I heard the invention described as a 'cap' I imagined it to be a peaked affair with 'New Yorkers' on the front and ice pads pushed discreetly under the rim. Oh no. The cap in our Cold Cap would appear to be more like the tight fitting lady's swimming cap, a la turn of the last century capable of administering temperatures of minus 30 degrees to the hair follicles all around the head. 

So, I ask my nurse, what does it actually feel like to wear a Cold Cap? 

Well, she says, I've heard that it's like the worst tooth ache but in your head.


But that only lasts for the first 15 to 20 minutes, after that the head just feels numb.

OK. That doesn't sound too pleasant either.

This is how hats should be - warm.
 The other down side to the Cold Cap is that it has to be worn either side of treatment so that the hair follicles are frozen for the entire time the drugs are travelling around the blood. A typical one hour course of chemotherapy can thus take three to four hours. Do I really want each session to last the morning when I could be in and out of hospital and getting on with my day? You also can't hear and thus talk to others while you're wearing the Cold Cap which is something which doesn't come very easily to me.

But perhaps a little time and a lot of discomfort is worth it for the chance to keep your hair, to keep your sanity, to stop yourself ageing twenty years over night and to prevent the ghastly clumps of hair on the pillow?

Perhaps. I change my mind daily.

I looked at the stats. Does it really work? I've scoured Mr Google and respected cancer charity forums and find success rates ranging from 20% to 75% with the odd site claiming even higher successes based on the type of chemotherapy. It's undisputed that the Cold Cap has some success in preventing hair loss entirely and, more commonly, in decreasing the amount of hair which goes. Unfortunately research doesn't tell us which hair the Cold Cap chooses to save. The advice is to have a wig in reserve and the National Health are kind enough to contribute to that.

Thus I went wig shopping with my children last week. I had hoped we'd spend a few hours trying out outrageous wigs on each other, my teenage fashion Aficionados stating categorically which wigs I could and couldn’t carry off. Unfortunately it was a little more sombre than that and they were only allowed to advise. That said, we were unanimous on the decision and I'm excited about the potential new me which emerged from the appointment. But no clues as to the style of wig - even my hubbie hasn't seen it yet.

So, after musing over it for weeks, researching the hard facts and attempting to brush phobias aside, will I be using the Cold Cap?

Absolutely not.

But you might want to ask me again tomorrow.


  1. I hope all goes well for you. A friend of mine has recently undergone chemo and she sports a wig - of a different style and colour to her natural hair and she looks absolutely fabulous! Another acquaintance - found that when her hair grew back it was a more gorgeous shade of her natural red, thicker and more lustrous - so there is hope. But most importantly, take care of yourself, allow yourself lots of TLC.

    1. Thanks Lindsay! That's exactly what I want to hear! I'm quite excited about wearing my wig actually - even if it will be a bit weird the first time. And you'll be pleased to know that it is noticeably different :)

  2. It's such a tough time, and you're handling it beautifully. You will get through this, and you will be even more amazing than you already are. God bless you!

    MJ, A to Z Challenge Co-Host
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  3. Jackie, I've heard it's a lot of pain for not much gain. Seems like you've done your research, and I'm sure you'll rock the wig should you end up down that path. x

    1. I think that's the conclusion I'm coming to, Lisa - too little gain for a lot of pain - I've also heard that you have to wash your hair as little as possible if you're trying to keep it and that you have to use a special shampoo and no products so I'd look like TinaTurner even if I kept all my hair! So yes, let's hope I do rock the wig!

  4. Oh Jackie, as you know I've been thinking about your hair, so this is such a timely post: perfectly pitched, as always, with your trademark mix of humour, integrity and compassion!
    I'm with you - I think! I know you will mourn your hair if it goes. All those years of curly angst - and now the prospect of losing your trademark locks. But hey, who knows what form of follicle adventure might lie ahead!
    Sending you lots of love! (And I'm going to love my own curls today, in honour of yours!) xxx

    1. Hi Lesley, I know you have a love/hate relationship with your curls so I'm touched you're having a bit of a moment with them today in my honour :). Thanks for your thoughts and lovely comment as ever. And yes, who knows, how funny it would be if my mane grew back straight...

  5. My best friend's sister tried the cap, but it didn't work for her and she took to wigdom with panache :o))

    (I loathe being cold too!)

    1. Karen, I'd so love someone to say of me that I took to wigdom with panache - time will tell! I hope your best friend's sister has turned her back on cancer now. And wrap up warm, there's a cold chill coming this weekend :)

  6. Jax, is it okay to share with everyone a little secret - that all through childhood you had pin straight hair and literally the moment puberty hit, those stunning curls appeared over night!! I know, if I hadn't seen it with my own eyes I wouldn've have believed it! Anyway, I've seen you both ways and know you rock both so VERY excited to what you can come up with this time xxx

    1. Ha ha! I have to say that you're not absolutely factually correct there - I wish it had been pin straight, it was more of a 'straight with embarrassing kink' and I really don't think you could say I 'rocked' straight hair but it's nice that you remember it that way!! No clues as to my choice of wig - only that if you wonder whether I'm wearing it, then I'm not ;)

  7. Jax that is absolutely lovely and so positively you! One of your most touching and thought and memory provoking yet!
    Just wanted to say- loved that cat Gizmo and i do remember clearing up Fidget's (another cat's) sick once when it was your turn .......hahahaha i'm laughing now!
    What ever you decide on the cold cap we're with you all the way! And you actually are making us excited to see your wig - but that's you all over! (shame the girls weren't allowed a little frivolity though)!
    You are so brave and letting us into your experiences is just lovely!Really hope the hair thing whatever happens is ok!
    lots of love xxx

    1. He he Antonia, what are little sisters for eh, if not for ordering to clear up cat sick? Ahem, sorry about that, anyway. Bless you for your lovely comments and you'll see the wig very soon...


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