I know I said I would post a non cancer related post soon – but to be honest it’s a bit tricky to think about anything else at the moment. I could talk about how hopefully this friday will be my last chemotherapy after five long months. Or that I successfully convinced the psychologist that I am of sound mind so bilateral mastectomy here I come… in 35 days time. Not sure I want to dwell on that though – and I realised I’ve never really talked about the cold cap and hair loss so that’s going to be todays subject.
I think everyone probably knows that having chemotherapy for breast cancer causes hair loss (incidentally, it also causes weight gain which is a real bonus – fat AND bald is every womans idea of a good look obviously) but the idea of the cold cap or ‘scalp cooling’ is to prevent or at least minimise this. The below explanation of how it works is lifted directly from the website of the model of cold cap my ward uses – the Paxman: http://www.paxman-coolers.co.uk
“Cancer chemotherapy affects rapidly dividing cells and at any given time, 90% of human hair follicles are in the actively dividing phase. Hair loss frequently occurs due to partial or total atrophy of the hair root bulb, causing constriction of the hair shaft, which then breaks off easily. Scalp cooling works by lowering the temperature of the head and scalp immediately before, after and during the administration of chemotherapy. This in turn reduces the blood flow to the hair follicles, thus preventing or minimising the damage, meaning that hair loss is not inevitable.”
Depending on the type of chemotherapy drugs you are having (and they do vary quite a lot depending on your personal diagnosis – something I had not really appreciated fully before this whole cancer experience) you have to wear the cap for a certain amount of time before / after the actual drugs are administered. For instance for my FEC treatment I had it on for half an hour before, the hour or so to administer the drugs, and two hours afterwards. It therefore significantly increases the time you are in ‘the chair’. For taxotere it is not so bad – only 45 minutes after the treatment. I have on one occasion been sent away from the ward because all the cold caps were in use and they would not be able to fit me in due to the time it takes. That was quite annoying but I was only delayed over the weekend from friday to monday. It was due to my Onc being an hour late in clinic and the fact I had a late appt to start with. On all other occasions I (and the other cold cappers) have jumped the queue on the ward. There are only three cold cap seats so if one is available we tend to take it even if other people have arrived before us.
It cools your scalp to -4 degrees C – which I can confirm is brain freeze territory. I’m not going to lie and say it’s fine. It was to begin with when I had lots of hair – but it has got progressively more difficult to deal with as more and more of my hair has fallen out. I always take a paracetamol half an hour before putting it on to try to ward off headaches which has been pretty successful. I would now class it as painful for the first 15 minutes but after that it is just uncomfortable. Part of that is the fact it is strapped on so tight under your chin. I have two blankets while wearing it – and the last couple of times my lips have still gone blue with the cold. I try to have hot drinks too – but not too many as I prefer not to disconnect the cap to run to the loo. I find the pictures on the Paxman site quite funny – no one on my ward has ever looked that cheerful while wearing the cold cap!!
I have the small purple inner bit and have had to go down a size in neoprene cover as my hair has departed. Before they put it on the nurses wet my hair and put some conditioner on it. This is mainly to help with taking it off again as you do end up with ice sticking the hat to your hair. The main problem I had with the conditioner though was that I was so sick on FEC that I associated the smell of it (and the plasticy smell of the cap itself) with vomiting. So just putting the damn thing on made me heave. Bleugh!! When I moved to the non-vomity drug Tax I had to waft Vicks vaporub under my nose while wearing the cap to break the association. Thankfully it worked!
The cap varies in success from person to person – I think it is to do with how well it fits your head. I have done well with the hair on the back of my head but not on top. I suppose before I show you pictures of my hair now, I should show you what it looked like before. This is me in 2011 at the airport before our awesome trip to Florida:
I had really thick hair before chemo – in fact I used to curse it and say that the final laugh my hair would have would be to all fall out. Turns out that wasn’t far from the truth. Ha fucking ha.
Anyway – these are not the best or most regular pictures but do give you an idea of how the cold cap has fared for me. I have focused on the top as that’s where my worse baldness was – the back has done well, thinned but no massive bald areas! I started chemotherapy on 30th November 2012 and had my hair cut into a chin length bob style before starting. To try to minimise the hair loss I have used only a very wide tooth comb, washed it only about once a week with Simple brand shampoo and used a silk pillowcase from about halfway through. I think the pillowcase made a difference – wish I’d used it from the start.
08/01/2013 – you can’t see on account of the hairband, but I am wearing the hairband because the baldness had started:
So as you can see – cold cap not exactly a win for me! It started shedding on about day 16 after my first FEC and an absolute ton fell out for the next month or so. That was horrible – bloody hair everywhere and great clumps came out everytime I touched it. You should have seen my pillow in the mornings, literally covered in hair. I can’t tell you how stressful it is dealing with this. It is also painful – as in your scalp hurts – which is something no one really warned me about. It has continued to shed to a lesser extent throughout and has really slowed down on tax – although at that point my eyelashes buggered off and brows seem determined to follow.
I have been able to cover the baldness to some extent by wearing wide headbands. This is me 19.03.2013 sporting the wide headband look:
… but I have also spent plenty of time crying about how awful it looks and how difficult it is to try to cover it. It’s not just the top that went bald, all around the edges of my face, ears and nape of my neck did too – basically anywhere the cap obviously didn’t cover or fit. I have been pretty happy that the weather has been so cold as I have been able to wear hats without looking too odd. Everyday I have worn a hat to work and then spent ages in the disabled loo trying to fashion a headband to cover the baldness as best I can – it is not a very cheerful way to start the day!! The headband also give me a headache – I really don’t like wearing them at all and can’t wait till I can burn the lot!
I am having 8 chemotherapy sessions in total and my hair started to grow back between sessions 6 and 7. Unfortunately it has chosen to grow back white so it is now looking worse than ever! My mum (bless her) has got me some special shampoo and conditioner called “Fast” which is supposed to make your hair grow faster – I am going to start using it after my last session. You’re not supposed to dye your hair for 6 months after chemo but I think I will be flouting that rule. I can’t walk around with a big white patch on top of my head… I’m going to look like enough of a freak after surgery as it is.
I am glad I have used the cold cap. I know other people have had much better results than I have but I have seen how quickly the hair seems to fill in once chemo is over for other people too – I’m hoping that will be true for me too. It has been stressful and I know some ladies find shaving their head quite liberating and makes them feel like they are in control – but I really didn’t want to lose all my hair. I have tried to keep my diagnosis private at work (although I’m sure everyone knows now) and going completely bald and having to wear scarves etc would have been a bit of a giveaway. I never wanted to wear a wig – I did try some on before chemo but they looked awful and were very uncomfortable so I never really considered it an option.
I think it is a very personal decision as to whether you want to try the cold cap, shave it all off, wear a wig or opt for scarves and hats. None of them are things any woman ‘wants’ to do but for me I think losing all my hair would have been worse than the stress of using the cold cap. I could be wrong but as I’ve used the thing this long I’m damn sure I’m using it for the last session!!