Comfort and wellbeing during scalp cooling
Questions and worries such as: I'm worried I won't cope with the coldness of scalp cooling, How can I make scalp cooling as comfortable as possible? and Will scalp cooling hurt? are very common. It's fair to assume that scalp cooling will feel very cold. However, with a good cap fit, a two way feed back process with your nurse or health care assistant and some helpful tips, scalp cooling can be made much more tolerable. Many people tell us that the following ‘tips’ can make a big difference towards improving comfort during scalp cooling:
Breathe - If you feel panicked by the coldness/ tightness of the cold cap, try closing your eyes and taking a few deep breaths.
Breathe app - Many people have recommended using Apps on their phone. Breathing apps use simple on screen visualisations to help you breathe in and out in cycles. Mindful breathing is proved to help reduce anxiety.
20 minutes - Many people say that after around 20 minutes they start to get used to the feeling of the cold cap and so any intensity reduces making the cold cap much more tolerable.
Getting the balance right of the cap fitting - Whilst the cold cap needs to fit firmly it does not help to have it too tight. For example, you will need to be able to breathe well and open your mouth to drink and talk comfortably. You can use comfort aids during scalp cooling. Take a look at our section Getting a good cap fit.
Gauze as padding - For added comfort ask to have gauze placed under your chin strap, by your ears, cheeks and forehead to act as a soft cushion.
Forehead comfort - Many people share that using a thin headband (or long strip of gauze) under the cold cap for comfort on the forehead helps reduce discomfort
Be proactive - ask for help and talk to your nurse or health care assistant. Scalp cooling may be a first for you but it’s really worth remembering that nurses and health care assistants facilitate scalp cooling on a regular basis. If something doesn’t feel right or you are uncomfortable ask for help.
Patient guides - Look at the manufacturers patient guide for ideas. Also call the manufacturer directly if there is something specific you want to know.
Soft blanket - Have a blanket handy to feel warmer and cosy socks and slippers
Hot drink through a straw - Drink a hot drink using a straw. As a chin strap will reduce the amount you can open your mouth use a straw to sip warm drinks and soups.
Pain relief – Ask your nurse for some pain relief if needed.
Heavy cap – A refrigerated system usually has a metal stand behind it where some of the connecting tubes are situated. You can ask your nurse if these tubes can be draped in a way to help reduce any unnecessary ‘drag’ or pulling.
Good cap fitting – It is essential to give feed back to your nurse or health care assistant about how your cap is feeling. For guidance and to know what to expect take a look at Getting a good cap fit.
Distraction - Read a magazine or book, knit or make cards – any craft or relaxing item that you can do will help distract you from any discomfort. Depending on your manufacturer and the fit of your cold cap, you may be able to wear ear phones to listen to music or watch a screen. For example, the Digni cap has a design that is shaped to allow the ear to be free.
Glasses tape – It can be difficult and uncomfortable to try and position glasses. Use surgical tape to tape your glasses to the outside of the cold cap so you can read.
Toilet/comfort breaks - If you are connected to a refrigerated cooling system
the cold cap can be unclipped for a short time to go to the toilet or stretch your legs.
You will still keep your cold cap on and when you return you will be re-connected to the cooling system. For example, one scalp cooling manufacturer ‘Paxman’ say that going to the toilet for 8 minutes will not effect cooling times. However, they suggest that if a comfort break takes longer than 8 minutes simply ask your nurse to extend you cooling period.
A manual system gel cap is not connected to anything and so you can take comfort breaks whenever you like.
Do ask your nurse as if you are drinking lots of warm drinks you may need the toilet more often.
Expect changes in the noise of the refrigeration system - Refrigerated scalp cooling systems do make different noises as the refrigeration system pauses and re-starts. This is a little like the hum of a fridge or freezer at home. The scalp cooling machine does sometimes flash and bleep – don’t panic or remove your cold cap, simply alert your nurse.
Remember your nursing team are here to support you - You are not bothering them by asking for their help so do call upon them – they care about you but won’t know if you need support unless you ask. Contact Cancer Hair Care, we are here to help you with ideas.
Next planned review: February 2020