Today is 6 months to the day since I went to visit the Dr to query a possible lump in my breast. I’m now onto week 2 out of 9 of the second chemotherapy drug – #Paclitaxel. I had hoped initially that I wouldn’t need the cold cap for this drug (especially as I have to have it every week), as I thought hair grew back … but the potential side effects still include hair loss (others who’ve had it, their eyebrows/eyelashes have fallen out 3-4 weeks after finishing treatment, so still got that to look forward to!). So… I’m sticking with cold capping!
I picked up a wig on the first day that I had chemo, although I wasn’t quite sure about it, and knew that if I was going to wear it, it would need cutting into shape! My hair has actually been holding on really well – back to that in a minute – but I contacted My New Hair, a charity run by Trevor Sorbie, and last week I managed to have an appointment with Vince.
I was invited to the Manchester salon, a friend came with me, we were given hot drinks (lovely hot choc), before being taken in front of a mirror. We were offered the option to be screened off, but it’s all part of the experience right… I had an hour with Vince, and in that time he was able to sort out two wigs. He was great at giving advice, cheerful and chatty, and at the end, here I am in my newly styled wig:
Cold Capping: What is it, and does it work?
Within the Facebook groups, there are always those debating whether to cold cap or not! Cold capping basically freezes the hair follicles to seek to stop hair loss, or as the American Cancer Society puts it:
Scalp hypothermia is cooling the scalp with ice packs or cooling caps (cold caps) for a period of time before, during, and after each chemotherapy (chemo) treatment to try to prevent or reduce hair loss…. The theory behind scalp hypothermia is that the cooling tightens up or constricts blood vessels in the scalp. This constriction is thought to reduce the amount of chemo that reaches the cells of the hair follicles. The cold also decreases the activity of the hair follicles and makes them less attractive to chemo, which targets rapidly dividing cells. This could reduce the effect of chemo on the follicle cells and, as a result, prevent or reduce hair loss from the scalp.
As you can see from here, the same day as I had the wig fitted, my hair is hanging on well (having cut it into a pixie cut the week that I was diagnosed):
It’s not got a lot of shape, because one is told to leave cold capping hair alone, but even the nurses are amazed at how little hair I’ve lost. People are always asking if cold capping works, and doctors apparently expect it to work for around 50% of those who try it, and regard 20-50% hair loss as a success!
Cold Capping Tips
There are a number of things that one can do to improve the change of success with cold capping, as mine has so far! It appears that one of the reasons my cold capping has worked so well is because my hair is quite thin/fine so the cold cap fits well, but here’s what I have done:
- Half-an-hour before the cold cap goes on (which is usually half-hour before the drugs commence), take a couple of paracetamol.
- Ensure that your hair is wetted and coated in conditioner so that it is slick against your scalp.
- Take a cloth headband to cover your forehead and over your ears, to protect them from the cold (it’s the roots and not the full length of your hair that needs coverage).
- One of the key things is to ensure that the nurses fit the cold cap tightly, especially on your scalp. There is an inner lining that the freezing liquid runs through (that looks a little like brain coils), and then a neoprene cap that fits on the outside. Ensure this doesn’t move, otherwise bald patches are more likely.
- When the cold cap starts, it quite quickly starts to freeze the head (that’s its job) – this I describe as rather like standing under an ultra-freezing cold shower whilst experiencing multiple ice-cream headaches! This lasts for the first 15-20 minutes, at which time I usually ask whoever has accompanied me if I can hold their hands whilst they take the burden of the conversation…
- After that first period of time (17 minutes we counted last time!), the head starts to feel like like it’s wrapped in a wet towel and the cold cap can be largely forgotten.
- Taking a blanket helps to keep the chills off – and if the hospital offers e.g. reflexology foot massages – take them up on that!
- Good conversation with others, or music/a book if you’re on your own, will help you get through it… especially as the cold cap needs to stay on for 30-90 minutes after the drugs have finished being infused, which was around an hour for each of my drugs (EC was 90 minutes, paclitaxel is 60 minutes after).
- You can be disconnected from the hoses on the cold cap if you need to e.g. go to the toilet – so the cap stays on, and you can wheel the chemo drugs with you: might be worth waiting til an hour or so into the treatment before drinking water (though lots of water is encouraged by the nurses – take a bottle with a straw).
- A hot drink (hot chocolate for me please) can help keep you warm!!
- Once the cold-capping has finished, allow another 15-20 minutes for the cold-cap to defrost, otherwise you’ll pull your hair out with the ice! A bit of a wiggle will tell you if it’s defrosted … or water trickling down your neck!
- The nurses should make a note of the exact caps that you wear, so if they work, you can use the same one next time! You can read more about the Paxman Cold Cap, which is the device I use.
- Ensure that you’ve a good hat to keep your head warm when you go home (with damp hair!)
To be honest, the first time I used the cold cap, it was because I wanted to be able to say I’d tried, then I kind of hoped my hair would fall out, and then I’d just get on with the chemo! Should I ever get a recurrence, I probably won’t bother – mostly because of the extra time involved, but I’m so deeply invested now …
Looking after Cold Capped Hair
Part of the reason my hair looks pretty flat and lifeless, is that we’re recommended to do as little as possible with hair. The recommendation to wash only a couple of times a week, but I’ve:
- Washed it every other day (with chemo on a third day), using Watermans shampoo/conditioner, leaving it for 2 days after chemo.
- When washing, I would gently pat the shampoo in, not rub the scalp, and then just let the water wash over me.
- Pat the hair dry with a towel, rather than rubbing it, and then letting it dry naturally.
- Brushing through only once a day with a wide-toothed brush.
- No styling products added to the hair (as they pull at the hair)
- Covered it with a bamboo cap overnight, and often a cap during the day, to stop me playing with the hair and inadvertently pulling it out.
- Bought a silk pillow case, so that there’s less to pull the hair out.
I still see strands of hair falling out, but nothing much!
So Friday 9th February was Chemotherapy number 5 (number 2 of 3 in this round of paclitaxel). I get an hour of infusion each time, with a range of pre-meds… Apparently 1: 8mg of steroids, 2: 4mg of steroids, 3: 0mg of steroids – so maybe next week I won’t have a sleepless night the day after chemo (on top of not good sleep the night before), otherwise it’s a range of anti-indigestion (nothing’s quite hitting that) and antihistamines (why I can’t drive home as = drowsy).
Suzanne has been alongside from the start, and was great to have her company again, as well as a surprise visit from Emma, who had a meeting on site! There’s only supposed to be one visitor per patient on the chemo ward, but thankfully this seemed OK for a while!
I was told that the effects of chemo would be cumulative, and I’m certainly feeling increasingly fatigued (not just tired), indigestion meds not really working (we have one more drug to try apparently), an overactive digestive system (though very grateful for no dizziness/nausea), random aches and pains stabbing at the body (but not enough to need pain killers), peripheral neuropathy, a mix of sleeplessness and long-sleeps is my survival tactic, although I’m debating doing short chunks of thinking on my research over the next few weeks, but meantime – enjoying the kitchen planning!
Unlike EC, where I was dizzy for the first week afterwards, I made it out to Aldi the day after to do some shopping (lovely steroid flush there):
Dr Bex Lewis is passionate about helping people engage with the digital world in a positive way, where she has more than 20 years’ experience. She is Senior Lecturer in Digital Marketing at Manchester Metropolitan University and Visiting Research Fellow at St John’s College, Durham University, with a particular interest in digital culture, persuasion and attitudinal change, especially how this affects the third sector, including faith organisations, and, after her breast cancer diagnosis in 2017, has started to research social media and cancer. Trained as a mass communications historian, she has written the original history of the poster Keep Calm and Carry On: The Truth Behind the Poster (Imperial War Museum, 2017), drawing upon her PhD research. She is Director of social media consultancy Digital Fingerprint, and author of Raising Children in a Digital Age: Enjoying the Best, Avoiding the Worst (Lion Hudson, 2014) as well as a number of book chapters, and regularly judges digital awards. She has a strong media presence, with her expertise featured in a wide range of publications and programmes, including national, international and specialist TV, radio and press, and can be found all over social media, typically as @drbexl.