When I decided to use the cold cap I scoured the internet for the best tips on how to make it work and how I should look after my hair. There are loads of forum threads with advice and a few good websites which I’ve included links to at the bottom. It would have made my life a lot easier though if all the information was in one place so that’s what I’ve tried to do here! Hope it helps.
HOW DOES IT WORK?
The cold-cap has been around since the 1970’s. I’m always surprised that more people don’t know about it and the fact it can save your hair during chemotherapy. It's a massive morale boost for those of us who are lucky it's worked for. The main type you’ll find in UK hospitals is the Paxman scalp-cooling machine. You wear a rubber cap that has coolant running through and a neoprene cover over that which tightens it all up and holds it all in place. It plugs into a machine that chills the coolant and lowers the temperature of your scalp to around 22 degrees Celsius. By doing so it stops the chemotherapy drug from attacking your hair follicles as much. Chemo attacks all cells that are rapidly dividing and multiplying and the cells in hair follicles are some of the fastest renewing cells in our bodies. That's why your hair falls out with certain chemo drugs. So, by cooling the scalp and reducing the effect of the chemo you can preserve your hair. Genius! It doesn’t work for everyone though, Paxman say it’s successful for about half of those who try it. But the technology is improving. And most of the women I’ve met who tried it have had great success. So in my opinion it’s worth a try - you’ve nothing to lose but a few hours of feeling a bit chilly! You’ll generally know by the second treatment if it’s worked and whether it’s worth carrying on.
- Be Fussy
Before you start using the cold cap - the fit is crucial. There needs to be good contact between the cap and your scalp for it to work. It’s never going to be perfect as they are not custom fitted but there are ways of improving the fit. The most important place for the cap to sit flat is on the top of your head and across the crown. If your hair thins here it will be noticeable. If it’s at the sides or underneath at the back (which is where mine has thinned) you can easily hide it with the rest of your hair. So, BE FUSSY. Only you know if it’s fitting your head properly, don’t be shy to tell the nurse if it feels loose anywhere. You can use a smaller sized overcap to pull it all flatter. The nurses can also use gauze as padding between the two layers to plug any gappy areas. Make sure the chin strap is tight enough.
- Pain management
I don’t find the cold cap that uncomfortable and I thought I had a low pain thresehold and was sensitive to cold! There are a lot of forum threads out there saying it’s terribly uncomfortable for the first 15 minutes and I think this puts people off. I’d hate for anyone not to try it because they’re worried about it being painful. I, of course, can only speak from experience, and I know others find it really hard to start with, but I don’t want you to think that it always has to be painful. I take some over the counter paracetamol/codeine tablets around half an hour before cooling starts to take the edge off and this seems to have done the trick for me.
- To cut or not to cut
One of the decisions I struggled with before my 1st session was whether to cut my long hair or not. There seemed to be a lot of conflicting advice on this so I had my hair that was almost down to my elbows cut up above my shoulders. With hindsight I wouldn’t have gone so short. Paxman say you don’t need to cut your hair shorter. And mine decided to spring up and go wavy and bushy once I had it cut! However, if it’s too long it may make it harder to care for and more difficult to brush through. It’s also good not to have too much weight on the roots. But you know your own hair. If you’re lucky and it doesn’t tangle as easily as mine and it’s not thick and heavy you can probably get away without cutting it. Just over the shoulders seems to be a good length. It’s useful to have a bit of length as you can cover any thin patches more easily. Too short and they’ll be exposed.
If you colour your hair it’s also a personal and financial decision as to whether to colour it before you start. I was told by the nurses I was ok to get this done before beginning chemo. My hair is highlighted to cover the ever increasing number of greys in my naturally brown hair. I felt a bit silly going to get it coloured right before starting chemo when it could have potentially all fallen out a few weeks later. But I decided the expense was worth it, if only to have a nice afternoon out chatting with my hairdresser and forgetting the nasty diagnosis I’d just had. I only went for a half head of highlights thinking it would have been frivolous to spend a couple of hundred pounds getting a full head done when the cold cap may not work. Again hindsight is a wonderful thing and had I known how successful it would be I would have got it coloured all through the back as well!
As I’ve said before, this is only MY experience but I don’t find it all that cold. When the nurse first put it on I asked her when it was going to get down to temperature and she said “it’s already there!”. I’d been preparing myself for it to be awful but for me it’s fine. I’ve been known to go off to sleep during a chemo session. Just do what you can to relax. Having someone to talk to and distract yourself is helpful. I bought a new heated blanket which really helps take the edge off the cold and I wear an enormous scarf and drink lots of hot tea.
- Be gentle
The biggest tip I can give you on looking after your hair during the chemotherapy period is to treat it gently. Hold the roots when you brush it; be careful when tying it back and don’t do anything that is going to pull on the roots because that will pull it out. Heat is also bad so avoid the hairdryer, straighteners etc. The heat can open up the hair follicles and encourage the hair to fall out. As I mentioned in part 1 my hair REALLY needs heat to look good and this has been the hardest part for me. I do dry it on the cool setting on the hairdryer sometimes which Paxman recommend you do. I have been naughty and used hair straighteners (very gently and carefully) on the ends but only a couple of times on special occasions and this is not to be recommended!
- There will be shedding
Even if the cold cap works you will still lose some hairs so try not to be disheartened or scared by this (see part 1 for the ‘Who’s hair is it anyway game’!) Paxman say anything between 50%-30% loss is considered a success. I’d say I’ve only lost about 20% so far and I have a lot of hair so you can’t tell by looking at it and it’s only me that notices.
Don’t be scared to wash your hair. Twice a week is ok. I don’t wash my hair everyday normally so sometimes I can get away with once a week. You need to use a shampoo and conditioner for sensitive skin. Paxman do their own cleanser and conditioner which is what I’ve been using. Brands like Simple are also commonly used by the hospitals as well. Wash under tepid water to avoid heating the follicles and as ever, be very gentle when you wash. Don’t pile your hair up on your head and scrub like they do in the shampoo ads as this will tangle it and pull on it unnecessarily. I tend to just smooth the shampoo and conditioner over and very gingerly give it a rub over the roots with my fingertips. I was advised to give it a comb through with a wide tooth comb while the conditioner is on to make brushing it after washing easier.
- Wide tooth comb
It’s recommended you use a wide tooth comb on your hair to avoid pulling it too much. I use this sometimes but because I have a lot of hair it doesn’t brush it through fully so I’ve continued using my paddle brush very gently as well. Brushing is important as if you don’t brush it and get rid of the loose hairs then it can tangle and mat and you’ll end up pulling out a lot more.
- Dry Shampoo
If like me you don’t want to wash it too often then dry shampoo is fine to use and really helps to stop it looking greasy!
- Root cover spray
You’re advised not to colour your hair during chemotherapy (apart from natural henna type dyes) and this is mostly because your skin can be sensitive and could react with the dyes. So, if you’re used to having a touch up every 10 weeks or so then the thought of a good 5-6 months of no colour can be pretty daunting. My hair has continued to grow on chemo and I have over an inch of dark roots with silver highlights! So, a life saver has been the discovery of root touch up spray. If you need to cover the greys, it comes in very handy and stays in until you wash it out. Just beware of spraying it all over your white top like I did!
- Tangle teaser
You need to be especially gentle with your hair when it’s wet. But you do want to get rid of any knots, so I use a tangle teaser type brush to comb it through after washing.
- Crocodile clip
You’re advised not to use elastic hair bands as these can pull on the hair too much. You can use scrunchy type hair bands but these were never my thing. I’ve found putting my hair back in a crocodile clip to be an excellent compromise. It stops it looking so bushy and messy, clips it back without putting any weight on it and has the additional bonus of stopping me from fiddling with my hair and pulling it out without meaning to.
- Silk Pillow Case
If your budget allows then invest in a silk pillow case. It’s much smoother than cotton and so doesn’t snag on the hairs as much while you are sleeping meaning fewer are pulled out overnight.
Just a final word on brows and lashes. Sadly, the cold cap doesn’t cover your eyes so eyebrows and lashes can still fall out especially if you’re on chemo from the taxane family. My eye lashes have thinned a fair bit. I plan on using false lashes though I think if your skin has been sensitive with chemo these are best avoided. I’ve bought some Revitalash eyelash and eyebrow conditioner to use when they start to regrow.
I also had my eyebrows micro-bladed before I started. This is semi-permanent make up, a bit like tattooing but the pigment isn’t put as deep in the skin. My eyebrows have really thinned but you’d never know to look at them. I had to get a letter from my consultant to say it was ok to have it done before treatment started and she said I was ok to have my top-up a few weeks later. Obviously with anything that breaks the skin though there is an infection risk so other oncologists/nurses maybe fussier about you having this done.
So that’s everything I’ve learnt so far. I’m over two thirds of the way through and keeping my hair has really helped me maintain a sense of normality and let me feel like myself and not someone who’s sick. If you’re about to start cold capping then good luck! Don’t be scared, it is bearable and it can work. I hope it works for you too!
My latest Vlog chatting to Claire Paxman from Paxman Scalp Cooling about the cold cap: