Hair today, gone tomorrow (or not?)
Updated: Dec 19, 2018
5 things you should know about the cold-cap before starting chemotherapy.
If you're living with metastatic cancer, it is almost inevitable that you will be facing the prospect of hair loss at some point during your treatment. Here's what I discovered about the 'cold-cap' the second time around and why I urge you to give it a go.
I’ve never been terribly image conscious. I wear very little makeup and am more concerned about feeling and looking healthy rather than being beautiful or glamorous. But even for me, losing my hair (including my eyebrows and eyelashes) during treatment for primary breast cancer was hard. The reflection I was confronted with in the mirror was of someone who was sick and to be pitied, rather than someone who was strong, healthy and capable. This was not the person that I wanted to be or to present to others. For that reason, I decided that I would wear a wig rather than choose head coverings. Many people are comfortable wearing bandanas and scarfs, but I couldn’t bear the thought of anyone feeling sorry for me or my children as they passed me in the street.
I'd heard of the 'cold-cap', or 'scalp-cooling' as the medical profession prefer to call it, but was told that it was very unlikely to work and was incredibly painful. I therefore chose a wig that was very similar to my natural hair style and colour and got used to wearing it very quickly. If it came up in conversation with friends I’d tell them it was a wig, but as time went on nobody seemed to notice. It wasn’t really a big deal in the end as I knew that this was a means to an end. I’d be wearing it for a few months until my treatment ended and I was cured and then I would get back to normal.
Second Time Around
When it became clear that I would need chemotherapy as part of my Stage IV treatment, the thought of losing my hair again crushed me. I decided at this point to revisit scalp-cooling as a possible option. Again, I was told by my healthcare team that it would be very unlikely to work. Even if I was able to keep some of my hair, the rest would fall out in patches so there would be no chance of achieving the effect I was looking for. In a conversation with one of the nurses I was left with the impression that the scalp cooler had to be worn for hours before and hours after the actual infusion and there was a 99.9% chance that my hair would fall out anyway. I’d also heard of women who had suffered the most incredible headaches whilst wrapped in blankets in a futile attempt to keep the rest of their body warm.
Of course, there were conflicting reports on the website of the company offering the equipment. Their literature was very encouraging citing that results that indicated that the chance of keeping my hair was almost 90%.
Just 11% of breast cancer patients in the UK who used their system suffered severe hair loss that required a wig - www.paxmanscalpcooling.com
At this point though, I decided that I had nothing to lose. I’d give it a go and if I couldn’t cope, then nothing lost. Even if it meant that I could keep my hair for a little longer, it was worth a go.
5 Things I learned
The first 15 minutes are the worst - I’ve never suffered from migraines, but the first 5-10 minutes of wearing the scalp-cooler gave me the most intense headache I’ve ever had. A headache that rendered me incapable of speaking or even opening my eyes. Just as I was on the brink of giving up on even the faintest possibility of keeping my hair, the pain started to lift and my brain and body started to become accustomed to the feeling. By the time I'd been wearing the equipment for 15 minutes, it was a breeze.
It's not that cold! - The stories I'd heard about people on the verge of hypothermia, wrapped up in blankets and clinging on to hot-water bottles are nonsense. The cap itself is very cold (that's the point), but I never felt the need to wrap the rest of my body up. Wearing a nice cosy jumper and thick socks was all I needed to keep me perfectly comfortable.
A tight fit is essential - It took two nurses and a lot of pulling and shoving to carefully position the scalp-cooler on my head each time so that it was in contact with every part of my scalp. Any gaps or air bubbles would have led to patches of hair loss. Make sure you speak up (as I did) if you feel the fit isn't right.
Don't try eating or talking - The scalp-cooler is held in position with an incredibly tight neoprene chin strap. It is very uncomfortable and virtually prevents you from holding a conversation or eating. You will need to wear the device for a short time before and after the infusion so make sure you plan your meals around these timings.
Be kind to your hair - If the scalp-cooling process is successful and you keep your hair, be sure to look after it far more than normal. Don't dye it, blow-dry it or straighten it. Use cooler water than normal when washing it and use a very mild shampoo and conditioner. Even if you religiously follow these guidelines, be prepared for the condition of your hair to deteriorate. Mine has become very brittle and it will take some months to return to normal, but this is far better than losing it all together.
In total I had 13 rounds of Taxotere, at the end of which I still had a very respectable head of hair. This did wonders for my self-confidence and has encouraged me to question everything I'm told as you just never know how things are going to work out.
If you would like more information about scalp-cooling and hair care, I recommend that you visit http://cancerhaircare.com/. The site is jam-packed full of useful advice on all aspects of hair loss.