Hi Beautiful Peeps,

I was diagnosed with Grade 3 triple negative breast cancer in February (2019) aged 42. My tumour was large and needed to be shrunk before surgery as was too big to operate on at the time. I finished my 6 month chemo regime of 12 x weekly () T and 3 x 3 weekly EC nearly a month ago. Surgery is imminent as is radiotherapy!

I wanted to post my cold cap experience whilst still fresh enough to remember (and more importantly feel!) but reasonably long enough after to give you an after the event version also! I’m posting this in the spirit of helping others know what to expect (but yes it’s more than a little cathartic too!).

I used the Paxman cold cap system and my chemo unit helpfully did this in a separate side room to allow a bit more peace and dignity. I found this really helpful and better than sitting in a communal space.

I have very long hair and did not have it cut before starting with chemo and the cold cap. I’d read somewhere that it responded better to long hair and chose to go with that (might have been deluded but it worked for me lol ). I washed my hair so it was still damp before my chemo sessions and then the nurses sprayed it again and applied conditioner. I believe this helps with the freezing process. I know this isn’t practical for everyone but just feeding my journey back.

I chose to wear the cap really tightly in my sessions which I know some others don’t agree with. I had the cap very tight to my head and usually had chin marks (welts!) from the straps afterwards. It felt very uncomfortable but I wanted to be sure it was as close to my scalp as possible. A tip that I wished I had thought about before would be to take paracetamol before the session - I definitely should have done this! 

When the machine is first switched on your head feels (obviously) incredibly cold and to be honest it made me feel really sore and nauseous. It’s similar to migraine symptoms I’ve had before but obviously much more short lived. Maybe the paracetamol would have helped with that though in hindsight. I found the intensity lasted around 20 minutes and then you get used to it. Being honest, distractions such as conversation and food didn’t help me, I didn’t feel like eating and if anyone made protracted conversation with me I felt like punching them in the face (kidding - well sort of lol). However, I was extremely thirsty and I would highly recommend drinking plenty of water (as do the medics). The only issue might be toilet breaks - I’ve had to quickly disconnect from coldcap machine and go to loo with chemo on

more than one occasion! I would also advocate using a heated blanket - it was an absolute blessing as you do get hcoldafter a couple of hours of that on your head!

I have kept the majority of my hair and people who don’t know me say they would “never guess”. It’s made a big difference to my self esteem I think although I would have rocked the bald head too!!