The realities of cold capping – or how I haven’t lost my hair during chemo

(My previous chemo hair cut!)

Recently we had a door to door charity collector come round for a cancer charity. I eventually managed to cut through her chatter and tell her I already give to a cancer charity (and have since my Grandad died) and that as I currently have cancer I wasn’t looking to add to that list at the moment. Her first response was “But you still have your hair”. Which is something I hear a lot. I imagine it’s the first people think when they hear cancer. Hair loss. And I’ll be honest it was one of my biggest concerns too. Which I know is a really vain thing to worry about but it was a real concern, and so there’s no point lying about it. I’ve written about it before when I thought it was all going wrong.

There were many reasons that I worried about my hair, but most of them weren’t because I didn’t think I could rock the bald look (I could totally have done that!) but because my face is way too fat to rock a pixie cut when the shaved head was growing out. Which is why when I was offered the opportunity to use the cold cap I decided to take it. For those of you not in this world, The cold cap is a gel filled hat that is cooled to -25 degrees with the thought that cooling your hair follicles can reduce the chemo drugs from reaching them and reduce the chance of it making your hair fall out.

Now, I know that I am having my treatment privately, and not all NHS trusts offer the cold cap, but most of them do and it does baffle me that there are a lot of people who don’t take the option if it is offered to them. I see women who find out they have to have chemo and just shave their heads, thinking hair loss is inevitable. Which might be the right choice for them and I respect that, but for those of you not wanting to take that route I wanted to write about my experience.

Because whilst I’ll be the first to admit I had the thickest hair in the world to start with and I have lost a LOT of hair – maybe 60% of it – I still have a full coverage and I don’t look like a cancer patient. Which for me is a big thing.

So, first things first – The cold cap I had is basically glorified riding hat that has been frozen to -25degrees, so, yes, it’s cold. It goes on half an hour before chemo, and comes off when the drugs have been administered and gets changed every every 45 minutes. Yes, it’s very cold. But I honestly didn’t find it too cold to cope with. Which I know is the fear of a lot of people.

So, in case you have found your way here at the start of your chemo journey and you’re considering the cold cap – here is a mixture of some advice I have been given, some things I have done that are totally against all the advice, and some of my observations on the realities of using the cold cap during chemo;

• On my first time I took painkillers 20mins before the cold cap went on. Just after my anti-sickness. I haven’t taken them since though and I’ve been fine. 
• I make sure my forehead and ears are padded with gauze to stop the cold touching skin.  This is the most important thing as I can tell when it’s changed if there isn’t enough. I go with 3 gauze pads all the way round. I’ve heard a headband might work but i’d worry about where the back of it would go. Would it cover hair that should be being kept cold?
• Wear something warm. It makes you cold having it on your head so wrap up! 
• Make sure that it’s really snug. You should be able to feel the cold all across your head – if it’s not touching your head, it might not be working. 

I know there is another style of cap that requires a hair conditioner seal to be made, and leaves ice on your head – I did get some tips for this one, but as I’ve not used it I can’t say, but if you do have any tips for that one please pop them in the comments, because I haven’t used that one!

Once the actual chemo session is over, and the cold capping is done, this is where being careful about my hair had to start. And this was the bit that I was dreading really, because I’ll be honest, it has been a bit of a pain in the ass – but it’s been worth it to keep some hair on my head!

• I currently only wash my hair once a week. That means there’s only one hair wash for it to come out during. I wash it on a weekend which not only means it’s looking decent if I have weekend plans, but as my chemo day is a Monday, it’s washed quite a while after the treatment is given. Oddly a once a week wash hasn’t really been a problem -maybe because of how dry my hair is after the cold capping! 
• I was told to just use Simple shampoo and conditioner. And I did. for a while. But I have such frizzy hair I found it was easier for me to carry on using the Treseme that I had been using before. It’s more moisturising and leaves my hair in a better condition I think! Plus, it seemed to fall out at the same rate no matter what I used! 
• The advice is to only use a wide tooth comb on your hair to avoid pressure. I even bought a pink one! Personally, I found this was worse for my hair as I found the comb dragged at any knots and it came out in clumps. Using the large paddle brush I already had has, for me, been easier and I’ve felt my hair comes out less this way! I’m still getting a lot of hair in the brush, but it doesn’t seem to come out in clumps the way the comb made it. I also brush my hair once a day because brushing it less (as I was advised) made it more knotted and therefore, it came out more. 
• I was told not to straighten my hair or hair dry it. But I’ll be honest I straighten my hair once a week. Not straightened, the frizz bomb that is my hair was knotting more, and therefore coming out more when brushed it. So for me, straightening, gently, is a far better option! 
• I cut my hair from being long to a bob as I figured there was less weight on the hair, so less of a pull on the roots. I have no clue if this works, but I did it. 
• It was suggested to me that I buy horse riding nets and a silk pillowcase to reduce hair loss at night. I bout the nets but found my hair got stuck in it and tangled up, so stopped that quite quickly. And I didn’t buy the silk pillowcase as I thought that mu pillows were silky enough!  

My hair came out worst the week of the 2nd round of chemo (enough to fill a Tesco carrier bag in one go) and I honestly thought about shaving it then, but luckily Jim told me not to and I am so glad that I didn’t do anything drastic after the shock of that loss. But be warned, there will be that moment when your hair starts coming out in clumps. But you’ll be amazed at how much hair you actually have. I promise you. And full disclosure – it’s still coming out now more than it used to, pre chemo. And I’m 3 weeks post my 6th one. But what you forget is that you shed hair normally, you’re just more aware of it now, so some of the hair loss is normal!

See – hair – recently – in February!

The only thing I would say about keeping your hair is that it makes some people think I’ve not faired badly with my treatment, or that I’ve not been sick, that I’m cheating at having cancer, but in truth I’ve worked bloody hard to keep my hair and I’m pretty proud of the fact it’s all there! 

And for those of you not facing chemo, or the hair loss – good on you for making it this far! That’s one hell of a commitment to blogging. You’ve done better than I do with baby posts 😉