A number of months ago I posted a picture on the Paxman facebook page of my hair on the last day of chemo. They contacted me and asked if I would put my story on their story website as one of their "Paxman Pioneers".They give you a list of questions they like answered in there with the aim to raise awareness and stop the negative vibes put out their by some of the medical profession.It's a bit of a monologue (and they left out some punctuation) but if anyone would like to have a look, here is the link.https://paxmanscalpcooling.com/experiences/testimonials/kerry-muscatI'll be signing autographs later hahahhaha.

It can be very distressing to have your hair come away in huge handfuls, to find it all over the house, matted on your pillow when you get up in the morning. Plus, your scalp can really hurt in the run up to it falling out. Mine did. I tried the cold cap but it didn't work well enough for me to persist, so I shaved it off. At that stage I could have worn a hat or cap all the time as there was enough hair clinging to the sides, but the texture was horrible, all brittle and manky. It was just all to much so off it came.We are all very different from each other. The reason I tried the cold cap was because I wanted to try to minimise the trauma to my niece and nephew by not presenting them with the same visual as their deceased mother's.I think the need for control at a time when you have virtually none is completely understandable. When I took my hair off it was scary but I felt empowered.There's no right or wrong. We all do what we need to in order to get through the Big C. What surprises one is often completely logical to another. With respect, vive la difference. K xox

I have to be honest and say that I find some of the above recent comments to be somewhat disparaging to myself. When I was diagnosed three years ago at age 57, I was, and still am a public patient. I was diagnosed at a major Sydney teaching hospital, where nothing was mentioned to me about cold caps. I had never heard of them until joining this group, and by then my AC chemo had been completed, and the point would have been moot. I was told that I would definitely loose my hair, that on my head and my entire body. I was told that it would start by me having an itchy or even painful scalp, after which my head hair would start to fall out in bits and pieces, but that ultimately about 90 - 100% would go. I had very long hair then...I used to sit on it. It had been longer than waist length since my teens. When I got married 39 years ago, I sat on it. My babies played with it, and it was sort of my trademark. I was known as either so and so's wife, so and so's mother or the lady with the long hair. The knowledge of me losing it, in dribs and drabs, in the shower, on my pillow and just generally everywhere was very distressing to me. I had no control over the cancer, other medical conditions, or, as far as I knew then, over the loss of my hair. My very identity. I did, however have control over how it would go. My daughter and daughter in law brushed and then plaited it one last time, my beloved husband then cut the plait off with tears streaming down his face, and my son finished off with clippers. My 14 month old grandson cheered from the sidelines in his highchair. I felt loved and supported and empowered. This had nothing...nothing...to do with some exhibitionistic tendency to want to shout out in public "Look at me...Look at me...I have cancer...look at poor little me." It was not some kind of one up showcard to flash at others implying that they were not as committed as I, and that they with hair had somehow let down the sisterhood. Had I known about, and had I had the finances for cold capping, I would have given it a go. As it happened, the remaining stubble on my head all came out and each shower session left me with hairy hands, much like a werewolf, but that was just the last 2mm. The cancer could have that, I still had my plaited ponytail as a reminder of what was. If some others have really expressed the above sentiments, well then they are accountable for that. I however do not want to be painted with the same brush as them.

@stargirl I'm disappointed that anyone would cause you to feel less for going for the cold caps. Like @kmakm, I tried it and chose to give it up after the second treatment as I lost a strip of hair that couldn't be covered up. But I had everyone - family, friends and medicos - cheering me on and supporting me in my choice to try to keep my hair. Everyone thought that it was important to try to keep one more aspect of cancer treatment at bay if I could and wanted to. They also supported my decision to stop when it wasn't working well enough (although it was hard to get my husband to clip it short).

It's all confusing but like almost everything to do with bc these are personal choices and are respected as such. I was treated too early for a cold cap choice too. I doubt if I would have done it, intense prolonged cold on my head would probably have caused me more grief than losing my hair. I believed my oncologist that I would lose my hair and while I waited until the first hairs fell, I had my course of action (no 3 clippers) lined up. I accept that, for many women, losing their hair is the worst part of treatment, just as I expect their acceptance that it wasn't such a big issue for me.

Love it! That was one of the comments from my surgeon today was a bit thinner but still there!

I am Famous...well kind of. Officially a Paxman Pioneer for scalp cooling

15 Replies

Ellie_Goli
Member
7 years ago
@kezmusc I just wanted to thank you for the article and positive vibes towards scalp cooling. I have the same chemotherapy regime as you. I have done 4 dose dense AC and 4 Paclitaxel so far and I still have my hair ... I had very thin hair to start with but still no one can tell that I have lost my hair...

At the beginning everyone said that scalp cooling won't work with AC but when I read your posts; decided to go in with positive attitude :smile: I am not sure how much hair would be left after 8 more Paclitaxel but I feel good keeping my hair so far ... So again Thank You and hope you are well.
kmakm
Member
8 years ago
Kerry that's fantastic! Well done. Your voice comes through really well. Paxman must be thrilled! Awesome sauce! K xox
arpie
Member
8 years ago
AWESOME article, @kezmusc - well done & well written!

If everyone who goes thru chemo had access to the cooling caps - how great would that be?
Kiwi_Angel
Member
8 years ago
@kezmusc I do think of u as one of the benchmarks for the cold cap - go you xoxo
Sarnicad
Member
8 years ago
Love it! That was one of the comments from my surgeon today was a bit thinner but still there!

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I am Famous...well kind of. Officially a Paxman Pioneer for scalp cooling

15 Replies

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