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Upfront About Breast Cancer Podcast

Episode 33: Hair Loss

We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting.

Let’s be Upfront about hair loss and breast cancer. Perhaps the most noticeable side effect of some chemotherapy treatments is hair loss. A bald head, especially for women is sometimes the first physical sign that screams ‘cancer patient’. It’s a lot to deal with on top of a diagnosis and whilst it might pale in comparison to a life-threatening illness it has a big impact emotionally. For many women, their hair can be very much a part of their femininity and identity. In recent years Cooling Caps have become an option for some that want to try preserve some of their hair but it takes commitment and let’s be honest – it’s painful.

Joining us for this episode of Upfront are two women who are going to give us some insight into their experience – Juliet Wilson, who did not have the cooling cap and Caroline Sladen, who did.

RESOURCES:

Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Cancer Australia.

Want to get in touch? Visit our website at bcna.org.au, email us at contact@bcna.org.au, or call our Helpline on 1800 500 258

TRANSCRIPT

KELLIE CURTAIN:
Let's be upfront about hair loss and breast cancer. Perhaps the most noticeable side effect of some chemotherapy treatments is hair loss. A bald head, especially for women, is sometimes the first physical sign that screams a cancer patient. It's a lot to deal with on top of a diagnosis. And while it might pale in comparison to a life-threatening illness, it has a big impact emotionally. For many women, their hair can be very much a part of their femininity and identity. In recent years, cooling caps have become an option for some who want to try and preserve some of their hair. But it takes commitment. And let's be honest, it's painful. So, is it worth it? Today on Upfront, we're talking to two women who are going to give us some insight into their experience. Juliet Wilson didn't have the cooling cap and Caroline Sladen did. A reminder that these episodes of Upfront about breast cancer are unscripted conversations with our guests. The topics discussed are not intended to replace medical advice, nor necessarily represent the full spectrum of experience or clinical option. Please exercise self-care when listening as the content may be triggering or upsetting for some. Caroline and Juliet, welcome.

CAROLINE SLADEN:
Thank you. JULIET WILSON: Thank you.

KELLIE CURTAIN:
So, let's get into it. How important was your hair to you?

JULIET WILSON:
Well, for me, when I was diagnosed, I really thought that hair loss would not really affect me as much as it did. I thought well, my hair would grow back and I was completely unprepared for the way that it did affect me when my hair fell out.

KELLIE CURTAIN:
What about you, Caroline? How important was your hair to you?

CAROLINE SLADEN:
I think very important. I think the minute I found out I had to have six months chemo my sort of first question was, 'Oh, my God. I'm gonna lose my hair.' To which my oncologist said, well, there is this option of the cold cap now. And that's when we started talking about that. And I think the other thing for me was my daughter's first reaction as well was, 'Mummy, I'll be embarrassed if you come pick me up from school and you've lost all your hair.' And she was only seven or something at the time. So, I think it was for them, for Mum to look as normal as possible was one thing that played on my mind as well.

KELLIE CURTAIN:
Juliet, the cold cap was not an option for you, was it?

JULIET WILSON:
That's right, yeah, yeah, my oncologist said because of the types of drugs that I would be having, that the cold cap would not protect me from losing my hair. So, there was no point to put myself through the discomfort.

KELLIE CURTAIN:
So, even though you knew you were going to lose it prior to that, your hair was very much a part of your identity.

JULIET WILSON:
Absolutely. And I had worn a very short pixie cut for many, many years until I moved to Australia in 1992. And I came to this country with women with this gorgeous long hair.
(LAUGHS) And I started growing mine and had been growing it since 1992.
(LAUGHS) And it had finally gotten to the length that I liked it. And the last visit to the hairdresser, I said, 'Tina, look, it's finally as long as I've wanted it.' (LAUGHS)

KELLIE CURTAIN:
And then you were faced with the reality that it was all going to fall out.

JULIET WILSON:
That's right. Yeah.

KELLIE CURTAIN:
So, Caroline, when you make the decision to have the cold cap, it's an all in commitment too, isn't it? Describe for us what level of commitment it is to go through the cold cap.

CAROLINE SLADEN:
Yeah. So, it is in terms of I guess the time and the pain of the actual chemotherapy sessions. So, I had to go in an hour and a half earlier to get the cap fitted. And even that was quite a sort of stressful process 'cause if they don't fit it perfectly and they leave one little gap for one chemo session where it's not hard enough on your head, then you'll get a bald patch there. So, it was all about that would probably take half an hour fitting it perfectly. Then they have to cool your head for an hour before they actually even start the chemo. And then you have to wear it again for an hour after. So, it really adds on so your actual chemo sessions would normally be say two hours, add some another two and a half hours. And as for how painful it was, it just is really painful. And it was that just your whole head is frozen, your whole body's freezing. So, I used to go in there in thermals and everything to keep myself warm as I possibly could, even if it was the middle of summer. So, the pain is excruciating. But I managed to I think the thing that helped me get through the pain was at the hospital before they put it on, they gave me a Panadol and also this tab called an Ativan, which is similar to Valium, which helped with the pain and made it more relaxed and made me able to sleep a little bit through the sessions, which just meant it wasn't as excruciating and the time went quicker.

KELLIE CURTAIN:
It sounds like it should be called a frozen cap, not a cold cap because it sounds freezing.

CAROLINE SLADEN:
Yeah, freezing. So, you definitely need to take warm clothes and blankets and everything cause it just goes sort of through your whole body, the coldness. It's not just your head. And I guess the other thing, it's quite tight around your jaw as well. So, it's really hard to talk. So, unlike most people who had company during their chemo sessions, I actually preferred to ride it out on my own and just put my ear pods in and listen to music over and hopefully fall asleep. Like obviously the first session my husband came and my mum came to the second one, but I was like I just prefer no one here. I just prefer to shut my eyes and just relax.


So, that was something that was personal, let the time pass rather than try to pretend that I'm feeling OK and have someone there trying to talk to me. But that was most people prefer to have someone there. That was just me.

KELLIE CURTAIN:
Yes. Although I don't think you're alone in that thought because it's so cold and uncomfortable and really sounds quite miserable that people just want to be alone. Juliet, with you. You didn't obviously have the cold caps and you were also receiving chemo during COVID conditions. But how is your experience of chemo then?

JULIET WILSON:
Well, similarly, because of the pandemic, I haven't had anyone accompanying me. And yeah, but I find that pretty much for the few hours that I'm there, there's so much interaction with the staff that are there and they're so lovely that it hasn't felt like I've been alone, but it's been very supportive as well.

KELLIE CURTAIN:
So, given that you knew you were going to lose your hair, there seems to be the magic, is it day 17 that they warn you that it's going to start falling out?

JULIET WILSON:
Yeah. So, you don't know what you don't know. And I didn't even know the questions to ask my oncologist. So, he just basically said, 'Look, I'm gonna be brutally honest with you. You will lose your hair. There's no getting around that. Don't even bother with the cold cap 'cause it won't help you in this situation.' And the only question I knew to ask was, Do you have any sense of when it might happen?' And he said, 'Look, pretty much certain it will be around day 19.' So, that was the only kind of guidance that I had. Now, in the first week after my first round of AC, my scalp was very, very sore and I didn't realise that was going to be part of it as well. So, I actually, first off, had my elbow length hair cut into a pixie cut because the weight of it was just pulling on my scalp and really hurting. And then really it was about I think it was day 15, 14/15 where my scalp got really sore again. And because it had been sore before, I didn't really know what that meant. And I didn't know until after what happened that it was actually a sign that my hair was about to fall out.

KELLIE CURTAIN:
So, did it magically start to come out on day 17?

JULIET WILSON:
No, in fact, it all happened a few days earlier. And because I was very focused on, OK, I've got a few more days that I've got my hair, I was completely unprepared. And it actually happened on a morning where I dashed down to the beach for a quick swim, a quick dip before starting my day of work. Got home, thought, great, I've got ten minutes before my first video meeting. I'll jump in the shower and be ready for my video meeting. Ran upstairs, jumped in the shower. And looked down, and my pubic hair was running down my legs. And I kind of went into shock and then I ran my hand through my hair because my scalp was very sore and that's when it all started, just a handful after handful coming out. And I looked down and the whole base of the shower was covered in hair. And I was so unprepared. I went into shock.

KELLIE CURTAIN:
So, even though you knew it was going to happen, to actually see it happening...

JULIET WILSON:
Was a whole different experience. And even though I was thinking, 'Gosh, this isn't gonna be so bad, you know, yes, I've spent these years growing it out, but it'll grow back.' When it actually happened, it... And my oncologist had actually said for many women, it's the most traumatic part of their cancer treatment. And I didn't really take that to heart because I thought, gosh, you know, chemo, surgery, radiation, surely losing my hair won't affect me that badly. It comes back. But when it actually happened, the impact was enormous. The shock, yeah, it felt like I was in a horror movie.
(LAUGHS) And then trying to pull myself together for a video meeting with colleagues, I simply wasn't able to do that.

KELLIE CURTAIN:
So, it didn't all come out. Did you then go and have the rest shaved off? What did you do after that?

JULIET WILSON:
Yeah, well, my oncologist had said that his advice was when it starts coming out to save myself the trauma of it continuing to fall out over a period of time, he said when it starts to come out, just get it shaved. So, what I had done is spoken with the barber shop up the street and said, Look, sometime in the next couple of weeks, I'm gonna come and see you,' and just worded them up because I knew that it would be quite emotional when it happened and that way they would be prepared and I wouldn't cry as much when I arrived on their doorstep. So, yeah. So that morning, I called a colleague and I said, Look, I'm...' She's a friend. And I explained what happened. I said I'm in shock. I'm standing here with hair all around me, patches on my head, and there's no way I can chair this meeting. Can you please take over? And I'm going to just say that my video is not working. I'll join the meeting, but I can't let anyone see me in the situation. So, I managed to somehow get through the meeting in this state of shock. And then I walked up the street to the barber and the barber who shaved it for me was absolutely beautiful. His cousin had lost his hair to chemotherapy and he had shaved it for him. And so he said all the right beautiful supportive things as he removed the rest of my hair

KELLIE CURTAIN:
So, Caroline. Having the cold cap, which you have to have in every single chemotherapy treatment through the whole course.

CAROLINE SLADEN:
Yeah. So, 18 or whatever it was of them. Yeah.

KELLIE CURTAIN:
It doesn't stop you losing your hair, does it?

CAROLINE SLADEN:
No. So, before you do it, they tell you there's no guarantee it works better for some people than it does for others. And they said you will definitely still lose some hair, whether that's 20%, 30%, 50% or 80% or all of it. So, it's a bit of an unknown and they're not really sure why it works better for some people than others. I was a real Nazi about making sure the cap fitted and that it was (AUDIO DISTORTS) (UNKNOWN), which I think is important in terms of how well it works. But I was very conscious of that day 17 or 19 that they tell you about, that when you sort of start to lose your hair if I hadn't been wearing the cold cap. And I was sort of nervous leading up to that. And look, I did after every chemo, I lost some hair and you'd wash your hair really gently and you just feel more hair than what you'd normally feel come out. And after I think the second or the third one, I felt like I was losing a lot of hair. And I sort of remember sitting there like in tears going on, I don't think it's working, is it worth it?' It was my mum that said, 'Come on, just keep it keep it up one more time, see if you can get through it. Because it's not just for the six months of the chemo. It means you don't have to worry about the hair growing back over the years that follow and do it for the kids.' And she was really encouraging. I think once I got through that third one and I still hadn't lost so much hair, I kind of thought, 'yep, I'm gonna keep going with it.'

But I probably, over the course of it, lost probably 50% of my hair, but never all at the same time. And I never had bald patches. So, it just was sort of probably other people who have seen her normally wouldn't have noticed. So, it was really only me that was conscious of it, not just wear my hair back in a ponytail. I mean, you're not allowed to get blow waves or anything like that when you're doing it. You have to be really gentle with your hair throughout. So, I just wear it sort of back and no one would notice. And then by the time I'd finished the first three months of treatment, which were the ACs, and then moved into the weekly ones, hair actually started growing back when I was on the second lot of... So, I'd get little sparks and that would mean that anything had sort of gone because you were having all these new hair and it has really been just a ponytail that was thinner. So, I don't think there's ever a time where anyone would have even my good friend would have said, Gosh, Caroline has lost a lot of hair.' It looked pretty good the whole time. But I have heard of other people that they've just lost so much hair after the first and I've stopped it or they've stopped it because it's more painful. So, I think I've got about four friends since May that have tried the cold cap. Two have done it and done it to the end and two have sort of given up after a couple of sessions. So, it's a fine balance.

KELLIE CURTAIN:
So, with the cold cap, it only preserves the hair on your head. With a cold cap, when you have a cold cap, does it only preserve the hair on your head? Do you lose the hair everywhere else.

CAROLINE SLADEN:
Yeah, you lose the hair everywhere else and including the eyebrows and eyelashes. But I didn't lose them right until the end. I don't know why, but they seem to be tougher than the hair on your head. So, I probably lost them sort of only for the last two months of my six months treatment. And then they grow back really quickly. So, that thing I sort of only felt I was without them for probably eight weeks or two months. And the hair on the rest of the body all gone. Your skin feels so smooth. It's like a baby's skin.

KELLIE CURTAIN:
So, there is an upside. OK, how did keeping, well, the majority of your hair make you feel? So, was it worth it?

CAROLINE SLADEN:
For me, 100%, it was worth it because. No one probably for my kids, I think they just felt that if Mum looked normal, they sort of felt that I was less, you know, that I wasn't sick. And it was also sort of, I guess, for them at school things. And so I'm just not having to look like I was going through treatment, even though everyone knew. And the other thing was I didn't care about my friends at all. Like, I don't mind what I look like to them, but it was also sort of walking into a supermarket and not having people, strangers look at you going, 'Look at that poor lady. She's obviously going through chemotherapy.' And I didn't want eyes on me at all. And I think that was one thing that the cap in my hair did. I never actually looked sick. So, I kind of felt like I could go about my daily things without thinking too much about it. And then same, just going out or whatever, it just gave me, I guess, more confidence that living a normal life, but I think if you don't choose to do it, it doesn't matter as well, 'cause my friends that didn't do it and they rocked head scarfs and stuff looked absolutely amazing too. So, I think it's just a very sort of personal thing.

KELLIE CURTAIN:
Juliet, just listening to Caroline say that it gave her a little bit of privacy if you like firsthand what a bald head attracts out in public, don't you?

JULIET WILSON:
Yeah, yeah, yeah. I prepared before my hair loss. I knew that


Cancer Australia provided free wigs and I got a free wig and I bought my head covering and my scarfs so that I would be prepared when my hair fell out. And I found it interesting that when it fell out, I actually decided to just go bald coconut. For me, I didn't wanna shy away from what was happening to me, and I wanted people around me to... It was almost like standing up to cancer to say this is what's happening to me. It was kind of empowering. It was absolutely nerve-wracking at times. When I was out with friends, I felt very safe. And if I was walking and moving through places, it was much easier. I found that if I was sitting down where people were also sitting down, like on a tram, and they would start staring, that's when I felt uncomfortable. And when you're bald and you're a woman, people don't just give you a glance, they stare. And I would make eye contact and they would continue staring, which I found really disconcerting and kind of rude.
(LAUGHS) And I thought just ask me, you know. Yeah. So, I was...

KELLIE CURTAIN:
So you really owned it?

JULIET WILSON: Yeah, I did. Yeah. I decided this is what's happening to me and I'm going to own it. And I felt bad when I would read stories from women who felt like they couldn't even be seen by their husbands without a wig on, that made me feel really sad. It made me realise that so much of society judges us on how we look. And the beautiful thing that happened for me when I had to go around, well, I didn't have to go around being bald, when I went around being bald and as my looks changed, it made me realise that I am not my looks. I am my soul. And people treated me the same way, and that was a really beautiful thing.

KELLIE CURTAIN:
You did, however, put on a scarf or a cap when you went to your oncologist's office though, didn't you? WHY WAS THAT?

JULIET WILSON:
Yeah, yeah. I said, look, you know, I know that when I was first diagnosed when I would see anyone who was bald from cancer, it really frightened me. It was an indication of how sick I was. And so out of respect for people that were newly diagnosed, I covered myself. And that may sound strange to some, but I know what it's like in that first stage when you're very, very frightened. And for me, of course, and for anyone who loses their hair, whether you cover yourself in your home or outside the home every day, you have to look at yourself in the mirror. And it is extremely confronting and it is a constant reminder of what's going on and how unwell you are. And, yeah, so I felt more comfortable knowing that I wasn't going to cause anyone else to stress.

KELLIE CURTAIN:
Were there any services or support that helped you either preparing for the hair to come out or being bored or as it starts to come back?

JULIET WILSON:
I went to one of the look-good feel-good workshops, and that was really, really lovely. That was a little bit less about the hair and more about the eyelashes and eyebrows. But when I went into the workshop, there were three women who hadn't lost hair and three of us who had and one who still was bald, one whose hair had come back since losing it. And partway into the workshop and this was the first time I was in a room with other people who had breast cancer. I just kind of shyly kind of just slipped my little turban off. And everyone in the room just said, 'Oh, gosh, you look so beautiful.' And for me, that was just a wonderful feeling, a really supportive feeling... Yeah.

KELLIE CURTAIN:
Caroline, you've somewhat been spared that feeling, do you think keeping your hair possibly gave you a little bit of a diversion from being sick?

CAROLINE SLADEN:
I think probably, yes. I didn't have to look in the mirror and I looked sort of the same. But I love what you're saying in terms of that it makes you take on the cancer and be proud of it. So, I guess I missed out on that aspect of it because I got away with looking quite normal the whole time. I went to one of those look-good feel-good things as well and found it really, really helpful. And that was kind of when I was right at the start sort of deciding whether to keep during the cold cap or to not. And also the three-week service that the Cabrini gave and also they gave us some headscarves and stuff. So, I think what the three-week did made me realise that if the cold cap wasn't gonna work, I probably wouldn't have gone with the wig option and I would have owned it. So, yeah, I probably did miss out on a bit of that. Yeah, I've got this and look at me, I'm proud of it.

KELLIE CURTAIN:
But it also allowed you to get on with it without having to catch your reflection and a bald head.

CAROLINE SLADEN:
Yeah, correct.

JULIET WILSON:
Yeah, it took me months of looking in the mirror each morning to get used to that. I would look in the mirror and just not recognise the person I saw. And that was disconcerting. And yeah. And part of getting used to how I looked was also presenting myself in the same way, I guess, in the outside world as well.

KELLIE CURTAIN:
Yeah. So, perhaps advice and words of encouragement to others who are either not choosing to do the cold cap or can't is the message, it's not gonna happen overnight, that acceptance of your new look.

JULIET WILSON:
Absolutely. And it's completely normal to feel distressed and overwhelmed and sad. And look, every time you catch a glimpse of yourself, you think, 'Oh, my gosh, that's the sick me. That's not the me that I know. That's the sick me.' And for the first while, it's very hard and it's funny that right now when my hair has just started to grow back, it's kind of like, Oh, but I was kind of used to that bald me.' (LAUGHS) So, now I'm almost having to adjust again 'cause I look different again.

KELLIE CURTAIN:
What's it like to start having the hair grow?

JULIET WILSON:
It's very exciting.

KELLIE CURTAIN:
Is it the same? Is it different?

JULIET WILSON:
It's so soft and it's got quite a lot more sparkle in the sides than it had before the grades are coming in. But yeah, it's lovely and, yeah, talking about when you mentioned the hair loss and the entire body, that was the other thing that I was completely unprepared for when I lost the hair on my head. No one had mentioned to me or I hadn't thought to ask, what about the hair on the rest of my body?
(LAUGHS) So, that was a pleasant surprise. And being hair free for those months, not having to shave was really lovely and having this gorgeous, smooth skin.

KELLIE CURTAIN:
But as it's grown back, there's a few other hairy issues. Pardon the pun.

JULIET WILSON:
Yes. So, what I've been experiencing this week is, yes, the hair on my head that's growing back is lovely and soft, but my pubic hair isn't. And I've been experiencing what I would call razor burn for about the past week, which is extremely uncomfortable.

KELLIE CURTAIN:
Is there any way around that?

JULIET WILSON:
Not that I've discovered, (LAUGHS) except that I don't. I've been wearing loose fitting clothing most days because it's excruciating otherwise. And even in the night, it's very uncomfortable.

KELLIE CURTAIN:
Yeah. So, I think that there's no right or wrong answer whether to do the cold cap, whether or not to do the cold cap, whether to keep doing the cold cap. What words of advice or tips would you give to other women, Caroline?

CAROLINE SLADEN:
Look, I think if you would like to try and keep up the perception that life is kind of normal and if you've got sort of young kids and stuff, I have no regrets in giving the cold cap, doing the cold cap. The pain for me was all worth it. Definitely take the medication that they offer you to make that pain a little bit more bearable and then just sort of try and relax and sleep. I think a lot of people give it up because they get discouraged 'cause they're losing lots of hair. But again, to that, I'd say, don't give up just because of that, because it's amazing how much hair you can lose without other people noticing, especially if you've got dark hair like I do, you just noticed it on the floor. But honestly, I've felt like I'd lost so much but really couldn't notice. So, don't give up just because of that. Keep going if you can. I mean, it's different if you sort of start getting bald patches and stuff. So that's where I think it's really important about the fit of the cap because you don't wanna go through the pain and agony to have them fit it properly. Just only it takes just one time if it's not all touching your head that all the hard work goes to waste if you get a messy bald patch. But then again, I admire people that haven't done it and how beautiful they look and how it's quite empowering,

So I think it's a very personal choice.

KELLIE CURTAIN:
Juliet.

JULIET WILSON:
Yeah. And I guess what I would say is it may sound like a cliche, but we as women, we are so much more than what we look like. And it's really important that no matter what's going on, that you realise that we are all beautiful human beings. And it doesn't matter whether you lose your hair or not. And everyone's choice in the way that they approach this whole crazy journey of breast cancer is valid. And to do what works for you and it's no one else's journey but yours.

KELLIE CURTAIN:
Thank you both for your insight and your honesty today on Upfront. And this podcast was brought to you with thanks to Cancer Australia. BCNA's My Journey has a range of resources about hair loss related to breast cancer treatment. So sign up, visit myjourney.org.au. BCNA's online network is also an online peer-to-peer support community where you can connect with others going through a similar experience. To join, visit the BCNA website. Thank you for joining us. I'm Kellie Curtain. It's good to be upfront with you.