When I was told on the 7th of July 2014 that I had breast cancer and would need chemotherapy, one of the first thoughts that came into my head after ‘Am I going to die?’ was ‘Does this mean I’m going to lose my hair?’ The answer to those questions were ‘No, you won’t die.’ and ‘Yes, you will lose your hair.’ Phew, I wasn’t going to die. Excellent news! I wasn’t focused on death so much after being reassured by my breast cancer team but then I began to centralise on how the chemo would make me feel and how I would look. I was told I would be on the FEC regimen:
- Fluorouracil (5FU)
FEC makes you lose your hair, no doubt about it. And I would be having six cycles of the stuff. I was devastated by the news that I’d lose my hair but didn’t want to let on it was bothering me so much as I felt so superficial. Here I was, being given the news that I had cancer and I was worried about my bloody hair.
I was deeply ashamed by my vanity and could imagine my Mother giving me her look, the infamous ‘Are you kidding me?’ look, also known as the ‘You better run up those stairs’ look that was often given to me when I was child.
I listened to the sounds coming out of the doctors mouth but they didn’t make sense, I couldn’t translate the words. They meant nothing to me, I just saw visions of myself; bald and shiny and I couldn’t think straight or focus on anything else.
I knew the answer all along, I knew I’d lose my hair but a tiny part of me thought there would be some miracle chemo drug invented by now that annihilates your cancer but also doesn’t give you all of the nasty side effects such as hair loss. I’d done my research beforehand, just in case I did have cancer and needed chemo.
I’d read about how nearly everyone loses their hair during chemo and that when it does come back, it can come back a different colour, or a different texture.
Oh, no. Firstly, I do not have the right shaped head to pull off bald. I can’t even pull of a pixie crop and I knew as I’d had that cut a few years ago and was so glad when it grew long enough that I could put clip in extensions in.
To think that I’d be bald and then to suffer the injustice of my hair finally growing back, only to resemble a poorly made Queen Elizabeth comedy wig! If only I had a tiny, Natalie Portman-esqe face, I’d gladly rock the bald look. I think some women look gorgeous. But not me. I need a lot of hair to cover my face.
The light at the end of the tunnel came from my lovely breast cancer nurse, Emma when she exclaimed ‘We do have Paxman Cooling Caps that are worn whilst you have your chemo. They work by freezing your head and by reducing blood flow to your follicles which can prevent hair loss’
Eureka! Okay, I loved this. This was great news! There was a chance that I would keep my hair and all I needed to do was wear a cap? I’m into this.
‘Here’s the deal,’ she continued ‘They are worn for half an hour before you are given your chemo, during chemo and for two and a half hours after chemo, so will prolong the time you’re here.’ Oh, not too bad, I thought. I can handle a couple of hours extra at hospital.
‘They don’t always work and they bloody well hurt, Di.’ Emma was great. She was young, and had been diagnosed with stage 3 breast cancer previously and was now four years NED. Emma was the closest person to me at that point in time and was my own breast cancer hero. She was my kindred. She knew every emotion and feeling, every fear that I was going through because she had experienced it herself. She told me that it was rare that the coldcap worked and that the freezing pain was excruciating.
‘It’s not worth it, Di.’ she said directly. ‘You’ll sit there in pain watching everyone else come and go and get on with their stuff.’ I was gutted.
We’d caught the cancer early, my surgery was a success and I had an excellent prognosis, now I had to go through treatment to make sure it would stay dead and kill anything lurking around. I really wanted to keep my hair throughout this. It was one of the most daunting and upsetting parts of going through chemotherapy. When you envision a cancer patient, you picture the bald head straight away.
The bald head is like carrying your identification to the cancer club everywhere with you and I didn’t want to be seen as a cancer patient. I wanted to take control of this diseasy bastard that had tried to kill me. I wanted to let it know who it was messing with. I also wanted to maintain my confidence and felt I couldn’t do that if I was feeling so outwardly discouraged.
I had the option of wearing a wig, of course. But that wig comes off at night when you’re at home. When you walk past the mirror and catch a glimpse of yourself and remember that you are actually quite sick and the drugs you are taking to make you feel better are actually poisoning you so much that your hair is falling out.
I wanted to remain as ‘Normal’ as possible. I had to carry on with my everyday life as much as I could and that included looking the same as I did pre cancer. The coldcap had to work for me. It just had to. I loved the expert advice I had been given from Emma but I wanted to see for myself if it could work for me. I’m also quite stubborn and never take no for an answer.
So I decided to give it a go, anyway.
Not all hospitals offer the cooling cap and I was very fortunate that my hospital had two of the Paxman Orbis 2 models which provide cooling for two patients at a time.
I would be booked into the chemo suite on the day of treatment and would head to the little patient toilets to wet my hair and cover it in a layer of Dove conditioner which had been recommended by the chemo team (I had to switch to Simple conditioner after my second cycle as the smell of the Dove conditioner made me feel incredibly sick #chemoprobs)
The conditioner protects your hair and helps avoid damage when removing the cap at the end of the cycle. I would suggest maybe taking in a spray bottle and filling it with luke warm water as it’s easier to dampen your hair this way instead of struggling, as I did, to bend over the tiny sink.
I would then take two paracetamol in preparation and wait to have my cap fitted. Make sure the cap is fitted correctly and please don’t be shy in telling the nurses it needs adjusting if you think it’s loose anywhere on your head. If it’s not fitted correctly, you’ll find you have bald patches in those spots. It shouldn’t move on your head, if it does, it’s not fitted correctly. Be strong with this, you’re going through this discomfort because your hair means a lot to you. Don’t risk losing any because you’re too polite.
I wore a medium-sized silicone insert and a small helmet/cap. I wouldn’t let them switch the machine on until I was comfortable that the cap was fitted snug to my head.
As soon as it’s turned on you can feel the silicone fill up with coolant which is circulated at -4 degrees and it hits you straight away. I’m not going to sugarcoat it because I’m not Willy Wonka – it hurts…but it’s manageable and the worst part is over after about fifteen minutes as you acclimatize to the cold.
You keep the cap on your head for 30 minutes then you can have your chemotherapy drugs. Mine are administered between 45 minutes and an hour depending on which nurse gives them to me. Once you’ve had your chemo, you must continue to wear the cap for two and a half hours (this is specific to the FEC regimen, I think it reduces to one and a half hours if you’re having Tax) so all in all you can be wearing the cap for around four hours. Once completed and the cap is unplugged from the Orbis, you must keep the cap on your head for around fifteen minutes to let it ‘Defrost’
Once you are suitably defrosted, you put your hat or scarf on your head and back home you go – remember to pack something to cover your head in your chemo bag because if like me, your treatment occurs during the Winter, you won’t want to go out into that freezing cold air with your wet, coldcap hair.
What to do when you get home? I leave the conditioner on my head for 24 hours then wash my hair the next day in luke warm water using a mild shampoo such as Simple or a baby shampoo.
When washing your hair, don’t scrub vigorously, use gentle strokes and patting motions to get your hair clean. Let it dry naturally, don’t use a towel to rub it up and DO NOT use a hairdryer.
I have naturally curly hair that I straighten and had a blunt fringe cut in before chemo began. Big mistake. Your hair doesn’t grow during chemo and you can’t use heated appliances on your hair so I’ve had to leave it in its natural, curly state. A curly fringe? No, thanks. I look like a clown. Even Beyonce can’t rock the curly bangs, she should stop trying. My hair looks even worse without the use of oils or conditioning products to tame it. It’s just a frizzy mess.
Thankfully, I’ve purchased a few wigs to help with this problem. I comb my hair with a wide tooth comb and put on a wig on it. No need to stress about styling it and in the meantime, my poor, frozen, chemically attacked hair is getting some rest.
Still losing hair? On day sixteen after my first cycle I got the dreaded tingling feeling all over my scalp. I’d read that this occurs just before you start to lose your hair. I remember sitting at my desk at work panicking that my hair would be falling out and that I’d wake up the next morning with my hair on my pillow.
The cap hadn’t worked. I’d read about this, it works for some and not for others. All of this effort, all of the pain and discomfort, the worrying and checking my pillow each morning… I can see why some women shave their heads straight away – it’s too stressful checking to see if your hair is still there. But the tingling stopped after a day. And I woke up the next day, and the day after that with my hair intact.
I experienced the same tingling after my second cycle but still my hair remained. Each time I comb my hair I do lose some but that’s to be expected. I lose a lot of strands but not chunks of hair and I’ve had no bald patches so I see this as a success.
I completed my sixth cycle of FEC six days ago and I am pleased to say that I still have the majority of my hair. It’s not in the best of condition and I will have a good cut to get rid of any damage but guess what, I’m not bald! I’ve met my objective! I intend to continue to wear the wig for a few more weeks and then will start washing my hair with Nioxin products four weeks post my last chemo. Nioxin products thicken your hair and contain no damaging chemicals and I believe Kylie Minogue used them after she had chemo to speed up the growth of her hair. I will then wear it up in a top knot until it thickens enough for me to straighten and style it.
Other products that have been recommended to me are:
If you really want to keep your hair and your hospital offers the coldcap, I would definitely recommend you try it. What do you have to lose? If the discomfort is too much, at least you’ve tried it and if you do go ahead and use the cap, I really hope it works for you too.
If anyone reading this has any other recommendations of products to use post chemo to help with hair thickening and growth, I would love to hear about them and also your experience with the cold cap.