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Week 3: Steroids, Hair Loss, Fear

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Photo: Courtesy of Ariane Mason.
I’m Ariane, I’m 28 years old and on Monday 20th June 2016 I was diagnosed with Hodgkin's Lymphoma.

Read the first part of my story here

And the second part here

'Roid Rage

Ahhhh, steroids, such a love hate relationship I have with you.
I have a week of taking them, then a week off them, and fuck me they make me feel GREAT! I’m on a really high dose – 120mg (26 pills) and they turn me into a Duracell bunny, bouncing off the walls, bounding through life, feeling positive about everything, like nothing can touch me, like cancer has nothing on me, like I’m not even ill. ‘Hey guys, look at me, not ill at all, cancer? What’s that? Do I look like I have cancer to you? Would someone with cancer be acting like this?” I go on a manic cleaning spree, I stay up until 1am with friends at a bar, I go on long country walks, I bake cakes, I cook, I go for dinner and plough down a large steak, I go shopping, I bash out a blog and get it published – all in a week. The steroids give me a false sense of wellness, they coat me in a protective bubble. I walk around in a dream-like state. There is a disconnect between my physical and mental self. I do not feel ill; I definitely do not feel like I have cancer, although I’m not quite sure how that’s supposed to ‘feel’. I can’t quite get my head around the fact that inside my body a million tiny cells have changed so much and so rapidly that I now have stage four cancer, I have a tumour in my chest, and my blood counts are so all over the place that I also now have anaemia, because mentally I feel well and actually physically, I feel pretty good too.

And then the dip comes. My consultant warned me of it, and boy does it hit. The first day of not taking them and I’m in the car on my way to pick up some friends. Out of nowhere, mid sentence my head literally drops to my chin, my speech slurs, I cannot talk, a pounding headache suddenly rages over my right eye. For the next few days everything feels like it has slowed down; there’s a soft blurring of the edges of my world, like my eyes have gone into slo-mo mode. I am coming down, I am coming down hard. I’m an anxiety-riddled, emotional wreck and I am suddenly very, very aware that I have cancer. The confidence I had for my new shaved head has gone, I hate my new wig, I don’t want to wear a head scarf. I cry a lot, for about two days. It’s the instability of everything at the moment that’s tough to deal with, the peaks and troughs, the ups and downs. Mainly though it’s the complete and utter lack of control over both my mind and body. I have gone from being a 28-year-old, independent, fun-loving, career-driven female making her own choices and steering her own destiny, to someone whose everyday life is dictated by disease and chemicals.

The steroids also have some really sexy side effects. Firstly, they’ve given me acne – great! I didn’t get acne when I was a teenager but now that I’m nearly 30, I have broken out in an acne-like rash which has decided to rest its little blackhead creatures all over my face. Up next: extreme eating. My appetite has gone into complete overdrive. I want to eat everything in sight, mainly things containing lots of sugar. My mind has no stop-eating switch, so I can and do just eat and eat and eat. I am having two breakfasts a day, lunch, dinner, dessert and normally a late night snack consisting of something really healthy and light, like a bowl of ice cream or some crumpets with lashings of butter. And then to complement the extreme eating, steroids make your body store fat in funny places, mainly your stomach and face. So yes, my flat, toned stomach that I’ve basically worked out on since I can remember – gone. Replaced with a permanent rounded little belly that has a nice orange peel texture, mmm yeah. My slim face, with good bone structure, that’s gone too. I now have what is known as ‘moon face’. So with my shaved head, acne-riddled, rounded, puppy fat face and boobs that have shrunken to nothing from losing so much weight, I now look like a 16-year-old boy. Cheers, cheers for that life, cheers.

Hair Today, Gone Tomorrow

My consultant told me that my hair would start to fall out a few days before the start of my second cycle of chemo and of course he was spot on. As if by some strange magic I woke up on Monday morning, had a shower and lots of my hair started to fall out. I got out the shower, brushed it through and even more came out. I tugged at the ends and could start to pull out small handfuls. My mum suggested I have it cut into a short bob but I just wasn’t ready to let go of it yet. I’d told myself over and over again, from the very start of my journey, that I wasn’t bothered about losing my hair, that I’d much rather have no hair and no cancer but of course when it started to happen I suddenly felt very attached to it.
I don’t want to sound arrogant but I do (or I should say did) have great hair. People always comment on it and it has, to some extent, formed part of my identity. I spent the week looking over all my facebook pictures, at the various hair styles and colours I’ve had over the years. It felt like the hair loss was an assault on my identity and dignity. There is something very dehumanising about having no hair. It symbolised to me that I was ‘becoming’ a cancer patient.

As the week went on, more and more hair started to come out in my hands. I would spend mornings just tugging at it, filling the sink with hair and by the end of the week it was obvious that my hair had died. After not having washed it for a good 10 days, in a bid to desperately save it and with half of it already fallen out, it had become very limp, dry and matted. Basically, it looked like a dead animal had died and somehow managed to attach itself to my head. It was itchy, my scalp was tender and my hair no longer resembled my hair. It suddenly started to annoy me, I no longer wanted it, I’d fallen out of love with it and it was time to get rid.

So on the hottest day of the year so far (it was a good 30 degrees outside) myself and my beautiful friend Hannah, along with my boyfriend Barry, headed to the local barbers. I decided that I wanted to make it into a bit of an event. We all went for lunch beforehand and I asked Hannah to document everything with photos. Making it into an event somehow made it easier for me to deal with, like it was all a bit of fun. I went straight into the shop and asked the barber how much it would cost for me to have my hair shaved all over. He looked at me like I was mad, “Why do you want to get your hair shaved?!” I explained that I had just been diagnosed with cancer and credit to him, he just nodded like that was a normal, everyday thing that happened in his barbers and responded “£8.50” – the cheapest haircut ever. Normally my salon bill is at least £150.

I had a female barber do it, which was pretty cool and she totally took it her stride. As it came off, it actually felt quite exciting, almost like the shedding of something, maybe all the negative energy I’d been dragging around with me for the last few months. I left the barbers feeling totally liberated and I LOVED my new shaved head. Suddenly I had a new identity, a new style to play with and it wasn’t the ‘cancer patient’ identity that I thought it would be. It was a “Yeah, look at me being all edgy” kind of identity. Like all the great creatives out there, I had managed to reinvent myself. It helps that females with shaved heads are pretty on trend right now; think Stranger Things, Dazed's insta feed and buzz cut beauty Ruth Bell. And of course, it was a massive fucking relief to know that I don’t have a strange shaped head.
Unfortunately, the beautiful shaved head didn’t last more than a few days. The hair continued to fall out and so I now have a patchy shaved head that is bald in places. I occasionally wear a head scarf or hat but for now I’m just rocking the shaved head for as long as I can, until it has literally all fallen out and I am bald. And I’m sure you're all gagging to know: Yes, I’ve lost my pubes.

Feminist rant time… It’s a pretty sad mark of society that even when struggling with cancer I am still obsessed with a) my weight and b) my looks. In my consultation after my first round of chemo, what was top of my list of things to discuss? My worry that I am getting fat from steroids. Keeping in mind that I have lost over a stone and a half in weight, I am hardly getting fat. I am hungry and at times, I find myself trying to stop eating because I’m worried I will get fat. I’m not exercising nearly as much as I used to, the steroids are making me eat everything in sight, yet I’ve only put on 1kg in about three months. So why, why, why am I so concerned about my weight? I have cancer for fuck's sake, hardly the time to be reading Vogue and thinking “Fuck, when am I getting my Karlie Kloss body in shape?” Yet issues surrounding how I should look as a female seem to be so ingrained in me that I cannot let them go, even when having chemo for stage four cancer. I feel down about having bad skin on my face, no hair on my head and feeling generally less feminine, somehow less of a woman. All these things play on my mind, and then I just have to have a serious moment of wising the fuck up, a serious moment of clarity, of realisation that I have to put my health first. As if a bit of podge, some spots and no hair is really what I should be worrying about. Right, time for another piece of cake then.

Fear And Loathing In Great Elm

People rarely talk about how terrifying it is being brave, but take it from me, it is, it really fucking is. Fear and anxiety lurk in strange places, like a lion stalking its prey in the long grass, they can pounce on you when you least expect it. Unfortunately for me, it’s not somewhere quite as exotic as an African plain, but instead Sainsbury’s or somewhere equally dull. Suddenly, I catch someone staring at me, clocking, 'oh, she must have cancer' and that’s enough for the anxiety devil to start yapping away in my ear.
And then there’s the darkness; a big, black, gaping hole that teases and beckons me in. 'Let yourself fall Ariane', it taunts, 'Fall into me, let your mind go, come on, go to those dark places, just for a moment, it might be easier for you, just to let go, just to give up, just to succumb. Take off the mask of courage, lay down your tired mind, breathe in the darkness, let it fill your lungs and mind with morbid, melancholic thoughts, wallow in negativity. Accept your ill fate. Give up the fight.'

I had my second PET scan this week – to see how and if I’m responding to treatment. I am praying for good news and I am trying to remain positive and brave. But they keep creeping in, those nasty, ugly, frightening thoughts. They go something like this:

I am too young to die. There is so much I want to do, so many places I want to visit, cultures I want to see, so many friends' weddings to go to and their babies to meet, so many amazing people I want to work and collaborate with, so many more roast dinners around my family’s kitchen table I want to eat, so many more tables at parties I want to dance on, so many hangovers I actually want to have. I am too young to die. Please let my scan results be positive. Please let the cancer in my lungs (the hardest bits to fight) be clearing. Please be killing these horrible, bastard cancer cells that have decided to attack my body and who are trying to eat me alive. Please be killing those fuckers and not me. I have so many amazing people to live for, so many people who NEED me to live. I am too young to die. Please, please, please let me LIVE.

And then comes the next thought, the game face prep: 'Dry your eyes mate. Splash lots of cold water on your face. Man the fuck up. And go and eat some (lots) of chocolate and pretend you’re fine. Because you are fine, you’re fucking great and you’re going to kick cancer's fucking ass.'

www.futurefertilitytrustuk.org
www.bloodwise.org.u
www.nhs.uk/conditions/Hodgkins-lymphoma
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