(I'm updating this blog post as I find out more information, I'm hoping to hear back from Paxman about how many hospitals have this stystem and if there is a way to fund raise for that to happen.
Before I start please note that this blog post isn't about what I think of how you look, or a criticism of anyone who chooses not to go down this road, it's only about how I feel about myself and what to expect. I'm not commenting on anyone else here, this is purely my personal feelings about my own appearance and why this has been so key to my recovery. We all deal with things in our own ways and this is mine. I've seen on the Paxman site that many other women do feel this way, but as I continue to point out, you must deal with your recovery in your own way.
So anyway, I have managed to keep most the hair on my scalp after four rounds of chemotherapy and I'm absolutely over the moon that the cold cap has worked so well. So many friends are absolutely gobsmacked that I don't look any different and that's really what I've been aiming for. While I think it may be slightly thinner, not too noticeable, I am prepared for it to thin because maybe re-growth will be changed but I will keep updating about that as time goes on.
Sorry that I don't have photographs to illustrate me wearing the cold cap because, quite frankly, I took some and my big squidgy face poking out of the helmet thing just wasn't attractive, so I deleted them. And that's kinda the whole point; what I look like is very important, and for my whole life, I've wanted to do everything I can to try and look as best as I can for my age and circumstances. You can see lots of pictures of what it looks like over on their site and their instagram which is @scalpcooling.
Over the last ten years I've got to that age where life has thrown a few curve balls where my appearance was getting out of my control.
So I did have a bit of liposuction during the menopause to remove the midriff bulge that came with that really unpleasant life change. I've also had my teeth done because some of them were on the verge of falling out due to a bone disease which started in my twenties. I had implants so that I don't have to wear dentures, which as my dental magician says 'you are too young to be taking your teeth out at night'. So basically, I've done what I can to maintain my appearance, or at least combat some of the medical problems and ageing experiences I've had.
Sorry that I don't have photographs to illustrate me wearing the cold cap because, quite frankly, I took some and my big squidgy face poking out of the helmet thing just wasn't attractive, so I deleted them. And that's kinda the whole point; what I look like is very important, and for my whole life, I've wanted to do everything I can to try and look as best as I can for my age and circumstances. You can see lots of pictures of what it looks like over on their site and their instagram which is @scalpcooling.
Over the last ten years I've got to that age where life has thrown a few curve balls where my appearance was getting out of my control.
So I did have a bit of liposuction during the menopause to remove the midriff bulge that came with that really unpleasant life change. I've also had my teeth done because some of them were on the verge of falling out due to a bone disease which started in my twenties. I had implants so that I don't have to wear dentures, which as my dental magician says 'you are too young to be taking your teeth out at night'. So basically, I've done what I can to maintain my appearance, or at least combat some of the medical problems and ageing experiences I've had.
When I was told I had breast cancer one of the first things I asked when he said the word 'chemo' was "will I loose my hair", the answer was yes, shortly followed by 'oh but we do have the cold cap machine here'.
I straight away started to look into what this Paxman machine is and also prepare myself for chemotherapy and operations. How was I going to manage with the physical toll of this and how much would it affect how I look and feel about my appearance. Breast cancer can bring some fairly brutal physical changes to a woman so I began to prepare my head for the things that could happen.
I straight away started to look into what this Paxman machine is and also prepare myself for chemotherapy and operations. How was I going to manage with the physical toll of this and how much would it affect how I look and feel about my appearance. Breast cancer can bring some fairly brutal physical changes to a woman so I began to prepare my head for the things that could happen.
If you are reading this and about to start chemo, please please please don't be put off by anything anyone, including nurses, say about the scalp cooler/cold cap. I say this because I have met a few people who say their nurses talked them out of it and some of my nurses gave me the impression that it was a really painful experience. But ... You absolutely have to try this for yourself, because I can't praise it enough. Again, looking at the Paxman Scalp Cooling instagram page there are myths about the pain of it, about cutting your hair short and so on.
I don't really need to explain why it is important to me but without my Lion's mane to hide behind, I'm in trouble. Even when I go to the hairdressers I say "make sure there's enough hair to frame my face", which is code for "I need to hide behind it". So I hope that if you feel the same please know that you aren't alone.
I don't really need to explain why it is important to me but without my Lion's mane to hide behind, I'm in trouble. Even when I go to the hairdressers I say "make sure there's enough hair to frame my face", which is code for "I need to hide behind it". So I hope that if you feel the same please know that you aren't alone.
Is it a vanity thing? I don't know. There are so many small but annoying things happening after chemo, most aren't life threatening but when put together they add up, even itchy patches or a mouth ulcer can drive you mad, so like all the other medicines we take to cope with the side effects consider giving this a go.
I feel like the hair loss is presented as such an unimportant side effect, the assumption being that because hair can grow back and it's not painful then you shouldn't be making a fuss about it. I don't give a flying fart who thinks I'm vain, if the way I look effects my mental health, then it is an important thing, maybe not to you, but to me and during this time where everything is out of control, here's something I can try for myself. Also it's pretty obvious to everyone that you have cancer if you are bald and there might be times when you just want to escape that reality and try to be normal.
So my point is, if your hair is important to you then make a fuss and do what you can to try this scalp cooling system, because if you have the same result as me you will be really pleased. Here's some info about what it is and how it's used.
The Paxman Scalp Cooling machine is about two foot tall and sits on the floor next to you. Out of that runs a couple of tubes which plug into your helmet/hat/cap thing. There are a two layers of headgear to wear on your head and they are put on after your hair has been dampened with a water spray. Conditioner is also applied to the hair as well so that the cap doesn't pull when you remove it.
The person getting you set up will try on a few caps to see which size you are. The first cap looks like a plastic brain thing and is filled with that stuff which freezes. (It's a good idea to get yourself a hair band, Alice band we used to call them, it's a stretchy thing about 1.5 inches wide and goes round the whole of your head). The first cap might dig in a bit on the edges, so if you wear your head-band you can cushion it across your forehead, along the hairline.
Once your first cap is in place then a thick stretchy cap is put over the top of that to keep it in place. It has elastic on it to pull it really tight. This ensures the first 'freezing' cap is touching every part of your scalp which is very important because if it's not super tight then it might not work so well in some patches. Push it down as much as you can, if it feels really really tight you can loosen it off a bit but you do get used to it quickly.
Once all your hats/caps are in place they switch the machine on and the cap begins to freeze your scalp. Try and keep talking during the first ten minutes, get someone to distract you. The first time I thought it was painful for the first ten minutes, and this wore off during the day but every time I tried it after that I felt less pain and it became easier every time I used it.
Like an ice-cream headache it's a bit of a shock but you do adjust. So within no time it just feels like a tight hat. Please try and hang on for the first ten minutes or so, it's such a small amount of discomfort for such a big reward.
You need to wear the cold cap for a certain amount of time before and after the treatment, usually about half an hour or so. If you want all the information and photos of what it looks like then head over to https://paxmanscalpcooling.com/scalp-cooling
You need to wear the cold cap for a certain amount of time before and after the treatment, usually about half an hour or so. If you want all the information and photos of what it looks like then head over to https://paxmanscalpcooling.com/scalp-cooling
Having chemotherapy is a huge expense to the NHS, (as are the other immunotherapy drugs which are often part of the combination your oncologist may prescribe). I have no idea how many hospitals have scalp cooling systems but mine, the James Paget near Lowestoft, is really small and they have it, so I think if they do then most others will also. I think it's good for you to know that this invention is out there and being widely used to retain hair.
I've put a couple of photos here of some plantsI'm growing because I don't have many current photos of my hair. On Instagram stories you can find odd phone selfies but as I'm just not a fan of these I tend not to do them. I will try and get some more photos of how my hair is looking fairly soon, but trust me, it doesn't look any different.
As for the rest of my body hair, well, I still have some eyelashes and eyebrows but its gone from everywhere else. I'm totally loving not having to shave my legs and let's just say, everywhere is totally smooth and hairless! Weirdly I didn't notice it going, ok I'm very fair and not particularly hairy to start with, but I've no idea when and where it went!
To look after my hair during chemo and using the Paxman I do a couple of things. Firstly while it may be a right sight and a bit gunky with the conditioner, don't wash your hair for a few days after using the cold cap and having your Chemo. When you do wash it do it very very gently, I bought baby shampoos and just slightly lathered it up, no rubbing. I use plenty of different conditioners; an after washing de-tangle spray and hair mask so that there is minimum hair pulling when I brush. I found the Coco And Eve hair mask got my hair lovely and silky before I started treatment to prevent it breaking or tangling. Next tip, don't brush it or wash it very often. Try and put up with dirty hair, it might even look thicker as a result. I stopped dyeing it too (to protect the roots from damage) and after a few months there was a fair bit of roots showing so I hunted down a wash in wash out colour. There's a Superdrug own brand one that is amazing, and cheap too! Several ladies at the hospital use this semi-permanent hair colour by Superdrug and I can't believe how good it is, it hasn't even faded or washed out much.
To look after my hair during chemo and using the Paxman I do a couple of things. Firstly while it may be a right sight and a bit gunky with the conditioner, don't wash your hair for a few days after using the cold cap and having your Chemo. When you do wash it do it very very gently, I bought baby shampoos and just slightly lathered it up, no rubbing. I use plenty of different conditioners; an after washing de-tangle spray and hair mask so that there is minimum hair pulling when I brush. I found the Coco And Eve hair mask got my hair lovely and silky before I started treatment to prevent it breaking or tangling. Next tip, don't brush it or wash it very often. Try and put up with dirty hair, it might even look thicker as a result. I stopped dyeing it too (to protect the roots from damage) and after a few months there was a fair bit of roots showing so I hunted down a wash in wash out colour. There's a Superdrug own brand one that is amazing, and cheap too! Several ladies at the hospital use this semi-permanent hair colour by Superdrug and I can't believe how good it is, it hasn't even faded or washed out much.
If I hear any news from Paxman scalp cooling systems, I will add to this blog post and put information onto instagram too. If you or a friend are about to start chemo them maybe do some investigating and see if this is an option for you. If it is then consider yourself very fortunate that here's one element of this shitfest that you can try and control, because pretty much, all your other bodily functions will be doing some freak out reaction to the chemo.
I have found that the effects of the chemo treatment have got gradually worse at time goes on, I believe it is cumulative and so after the fourth treatment I also got bad fatigue and nausea that I hadn't had before. You forget what normal feels like, the weirdness is constantly changing and it's hard to not want to push yourself into having a normal day. However, for me the drugs have totally worked as they should. My tumour has shrunk to less than one third it's original size, so much so that my operation will now be much less invasive. News of the operation will be in a few weeks time and if I find any pearls of wisdom to share about that be sure I will be ranting on about it somewhere.
Sending love to anyone going through this, you are not alone.
