Madi Blissett de Weger with Andrew Gillanders
On December 6th 2021 Madi Blissett de Weger is cutting her hair and donating it to both make a human hair wig for a child going through cancer treatment, as well as raising awareness and money for sarcoma research. Andrew and Madi chat about Madi’s experience with sarcoma, and why human hair wigs matter.
Andrew: I know that you’re writing a memoir about your experiences with sarcoma and your fundraiser shares parts of yourself there as well. What does telling your story mean to you?
Madi: I’d like to get my story published so that young girls, or anyone who’s facing cancer as a young adolescent, or in their twenties, know that it’s not all like the cancer movies say – not everyone dies of cancer. I feel like that was such a typical thing in sick-lit cancer films and books. It wasn’t a very good representation, instead it’s quite glamorised. You don’t really know what treatment is like or understand the emotional depth of it until you go through it yourself.
It’s really scary but I want to write about my experiences so others can find the relatability I was searching for at a children’s hospital. A lot of my time there was spent with toddlers that’d spend their time screaming or playing Dora the Explorer until 3am, unable to turn it off because it supposedly soothed them. I didn’t really meet any teenagers until right towards the end.
So I just wanted people to feel comfortable and understand more about how treatment works and the effects of it, and not just physically but emotionally and psychologically. I guess a bit better especially with treatment and the effects of it. That’s my main goal.
Andrew: Listening to you, and also having read some of your work – you’ve said that you weren’t scared of death?
Madi: I think I was more in denial about it.
Andrew: In denial about it?
Madi: It was never an option.
Andrew: I think a lot of the stories that I hear you tell are scary, not necessarily because of the valley of death. But scary because of the kind of experiences you went through during treatment and the kind of alienating experiences you go through, how is that related to your hair? Was losing your hair scary in the same way?
Madi: Oh yeah. I think losing my hair was the worst part out of it all like I used to literally beg. Well, not beg, but I’d say, “Mum, If I could only go through the physical side or the emotional side, let me just choose one.” It’d be easy to just do the physical side, but losing your hair was such a big part. I grew up dying my hair blonde from the age of seven. I used to want to look more like my mum, and I definitely was very persuasive, perhaps manipulative, in getting that. Eventually, she gave in.
As a seven-year-old, I was allowed one three-centimetre-thick blonde strip of hair. And I would refused to tie it up, so my grade two teacher used to call it my ‘snot-wiper’ because it was just hanging there – my little blonde part. Growing up, my mum would get her hair done with her friend and I’d come in with her and the friend’s daughter, and well, it became a social event growing up.
And with my hair, it was a part of my identity. I felt like it really shaped my face. And at the time, I was going through like a modelling recruitment as well. And obviously that’s quite needed in the industry, I guess. When I was in public, I felt so self-conscious without my hair, so I’d have to have a wig on at all times. That fear of not fitting in is so prominent as a young teenager as well, when you’re going through all the high school drama – plus an illness on top.
I guess with the whole death thing, I refused it and I probably still am in denial five, six years later. It was just a year I had to get through, and then it will get better. But there definitely was times when I used to beg my mum and oncologist to stop treatment.
Andrew: When your hair started to come out, was it all in one foul swoop? Or was it a slow process?
Madi: It was gradual. My first treatment happened in mid-September 2015, and at first, you kind of realise, hair fallen out on your pillow as you wake up the morning, and then it gradually is pulled out as you brush your hair. It got to the stage where it would fall out at the slightest touch. I had thin hair as it was and it became even more thinner. You want to avoid brushing it, so it begins to matt. So, my hairdresser cut out the mattered parts and made it into a bob.
And even then, my hairdresser was like, “Oh, let’s dye it a cool colour!” and I’m like, “No, I just need my hair. I need my hair.”
Andrew: For that element of normalcy.
Madi: Normalcy. For sure. I remember before it started falling out I said, “Mum, I forgot to take a photo of my hair – I’ve got to take a photo.”
She would say, “Madi we’ve got heaps of photos.”
“But it’s my hair,” I’d say. I was trying to hold on to it so much that it got to the point where I was in hospital and the hairline was pulled back into a little turban thing. I had a temperature, and when you have a temperature you’re stuck in hospital until it goes away from antibiotics. And still, I refused to shave it off.
My oncologist called it a “rat-nest”
When I got home, I was on the couch, laying down. I could barely hold up my head and a hairdresser friend came and had to shave it off. But yeah, quite emotional.
Andrew: Was it, did it get easier after the moment you’ve shaved it and you’ve crossed the threshold? Did that get it easier or was that difficult every day?
Madi: Definitely difficult every day. I didn’t look in the mirror very often, plus I was getting quite thin. So, I kind of just ignored it.
I wore hats everywhere – even at home. I had quite an extensive collection there, but then I would wear a wig whenever I went out. Anytime I went to school or saw friends. In the beginning, I’d wear it to the hospital, but after I got more comfortable, I wore a cap.
It definitely went up and down in emotions as you do, depending, where you are.
Andrew: So how did you get a wig?
Madi: The children’s hospital gave us a contact to a wholesaler, because the wigs are normally thousands of dollars as it is. We ended up getting in contact with one and we went to their outlet and it was about $600 to buy a wig from them.
I think it’s because his wife passed away from cancer and that was her final wish. That’s why he sells them at wholesale cost. Basically, it was a really really thick wig. Long human-hair and had the ability to dye it and cut it to your liking. I went to the wholesaler’s connected hair salons and it was quite expensive to style it. They had to use so much dye.
I ended up getting two, human head wigs. The first one, the colour kind of went Auburn after a while. The second one, I absolutely loved.
Andrew: So where will your hair be going?
Madi: I’m donating my hair on Monday morning, 6th December. I will be donating to Variety Children’s Charity, and apparently it takes around 10-15 hair donations to make just one wig.
Madi: Yeah, so I implore anyone who has the means – haven’t dyed their hair and it’s at least 36cm long – please donate. It honestly means so much to a young girl to have hair –similar to the what they used to have. There’s also the Ponytail Project that a lot of schools participate in. The requirement is a minimum of 20cm.
Andrew: You’ve made a distinction about human-hair wigs. Why does it matter that it’s human hair?
Madi: Well, I had a Barbie wig – that’s what I like to call it – and let’s just say it got super matted and ratty very quickly. The one I wore was a good one for summer as it had nothing on the skull and it just flows out from a hat. It was cooler to wear, but it wasn’t thick, you couldn’t dye it or cut it. It’s Barbie hair, not a very effective or long-term.
Andrew: Has sarcoma cancer caused any permanent disabilities for you?
Madi: I had nerve damage in my left leg. The original surgery was quite risky as the tumour was pressing into my nerve that connected my knee to my foot. The chemotherapy also made my feet and fingers numb, and with radiation on top of that, I couldn’t feel my feet very much.
I struggled to put my heel down when I walked. So obviously through a lot of rehabilitation, I had to learn how to walk again and made sure I had to put my heel down first and then the toes. You don’t really think about the process of walking until your body has forgotten.
I’m pretty good now though, ability wise. I still have shocking balance. My calves especially took a while to build up the muscle and I think there’s still like a centimetre or two difference between my left and right thigh.
Andrew: You said you’re getting your hair cut on the 6th, how can people support you?
Madi: I really hope that this fundraiser that I’m doing can raise a much-needed awareness for sarcoma research. It’s a cancer that not many people know about it, and it has such a high rate of diagnosis in children and teenagers.
I hope to raise money and awareness for the Australian and New Zealand Sarcoma Association. I’ve got thousands of dollars in donations and I keep increasing the goal and it keeps getting met. I’m so impressed with everyone’s generosity.
So, if everyone could donate, I’d greatly appreciate the support. Every little bit counts. If you don’t have the means to, please share my link of the fundraiser. Put it on your social media and if you have long hair and you want a change in style, definitely consider donating your hair.
Andrew: I assume this is the longest, your hair has been since it grew out, post treatment. How do you feel about returning back to having shorter hair?
Madi: I am so excited. I really love short hair and I will be cutting it to the length of my jaw. I wasn’t a massive fan of the pixie cut stage, or the mullet stage I went through for a little bit in grade 12, but I’m so excited for this. It’s going to be perfect for summer.
Maybe next year, I’ll do something crazy and dye my hair pink for a little bit. You know, I never really did anything crazy before.
Andrew: That sounds really exciting.
Andrew and Madi are both Alumni of the school of young and confused emerging Brisbane writers. They share a desire to write about social issues and make a difference in the world with the written world.