Hair despair

Right back when I first heard about this second line Folfiri chemo, I didn’t fancy the sound of it. Two week cycles instead of three, two days attached to the cock bottle, the sheer fact that it was “second line” chemo, as effective it may be, it does mean I have exhausted the effectiveness of the “first line”.

The thing, and I know this is stupid, that worried me the most was the potential for hair loss on Folfiri. Fifty percent lose it, and everyone else “thins” so I was told.

A couple of days later I started noticing that a few strands were coming out when I was brushing or styling it. I tried to ignore it, tried to tell myself that it was just going to thin a bit, tried not to have an epic fucking panic. Yesterday, I brushed it after a shower and the brush kinda filled up. OK, this is not good. Determined not to let this beat me, and we had an afternoon of celebrating my friend Huey’s birthday planned. So, I went out with a headscarf on, so I wouldn’t keep touching it. I look pretty happy, I can do this, right?

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THESE were the festivities this morning:

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The crazy thing is that it’s more than hair for me. Some time in the last couple of years this girl:

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Gave way to this girl:

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It speaks to me deeply of what the last couple of years have meant. It started to define the new person I was becoming the day I walked into that hairdresser and said I want to stop hiding and start living. That day was a line in the sand, I was never going back to what I was, only forward. It said I was brave enough to live bold, brash and courageous. It said I wasn’t scared to be me.

It’s “only” hair, but it’s kinda more to me. And so, in this time of extreme and constant loss, I have to lose another thing. I have to realise that I am not defined by my hair, my clothes, the fact that my existence has so far certainly not FELT, but LOOKED cancer free. I feel like the minute I wield the clippers, I will become the true face of cancer, it will confront me in a way it never has before. I know I will get through it, it is the person that I am that speaks most loudly to people. But lordy, it’s kicking my arse.

And on a final note, this is chemo for life. FOR LIFE. FOREVER. Once it’s gone, I might never have hair again…for the rest of my life.

Imagine?

I hope like hell you never have to KNOW.

14 Comments on “Hair despair

  1. I was diagnosed with bowel cancer with liver mets eight weeks ago, eleven weeks after the birth of my first baby. I’m on two weekly FOLFOX plus avastin. Ironically I look better than I have in years. And I totally understand how confronting it would be to start to look sick. Hoping the FOLFURI works well for you and is not too brutal in its side effects. Cxx

    • Oh Caitlin, I am so sorry you have joined us on this journey, especially just after your first child! I pray for strength and healing for you. You are on the same treatment as me and like you, still look and feel fabulous (aside from mild nausea and fatigue after treatments). You must be quite young so age is an added strength! Be strong, we can all do this alongside Julia! Live well and prayers to you x

    • I am so sorry about this, that is total BULLSHIT. I got to have my babies and have a few beautiful innocent years with them, you have had that ripped from you AS WELL as having stage 4 cancer, that is totally fucked, TOTALLY fucked. I can’t imagine how you are doing. Please contact me privately if you want to talk, you are welcome to add yourself to my personal facebook, or get me on five fairies, or jules363182@yahoo.com.au Heaps of love to you xxx

  2. Hi Julia
    I have quietly watched you, read your blogs and so admired your attitude.
    I know there must be many many more people like me who think but don’t say.
    I have laughed, wept, been angry, uplifted, encouraged and amazed – all by you.
    You are one amazing lady so much more than hair.
    Keep up with your red lipstick!
    By the way my family has known Gary for over 50 years and marrying you, without doubt, is absolutely the best move he has ever made!
    Blessings to all of you fairies and your fella.
    Marilyn

  3. I haven’t been through what you’re going through (and I hate that you are) but I get it. Hair is so defining, so feminine. My hair has always been short and at times, I’ve experienced bald patches and bloody scalp. I didn’t want people to see that. The hair breakage and loss is part of my condition – and it’s taken me bars to embrace that.

    You rock a bandanna btw. Much love x

  4. Losing your hair is a big deal. What Jen said too. Much love and I hope the Folfiri works forever.

  5. How we feel is reflected in how we look and how we look impacts how we feel. Fuck mirrors!
    I have absolutely no idea what cancer is like as the person who has it, but I totally get the hair thing.
    Fuck cancer too!
    Thank you for sharing this with its warts, haemorrhoids and pimples exposed. Much respect, much love. XX

  6. Jules you WILL rock this just as you have every other challenge you have had to face in this totally shitty journey. Its just another facet and I am sure it is heart wrenching, I really have no idea how I would handle such an event, as many of us cannot understand it really at all. But you WILL and and you will do it with your unwavering celebratory F*** you cancer glorious approach when that time is right, I know you will. Until then dye it, have fun with it and keep on rocking like you do everyday. We all have your back and love you x

  7. Losing your hair is such a signature cancer thing. It has some advantages – you don’t have to explain yourself to people when you feel like crap, you never have a bad hair day, washing yourself takes half the time, you can moisturise your head and your scalp will never be healthier, it’s cooler in summer but you need to keep it suncreamed or wear a hat. Most of the time once you lose your hair it starts to come back after a little while even if you are on the chemo that killed it. Worst case, you shine for a little longer. I have been bald 4 times. The last time it lasted for months and months and the photos from my daughter’s wedding have me bald or with a hat. It is tough the first time but you will surprise yourself rocking the bald look. xxxxx

  8. I also bought a t-shirt that said “Does this shirt make my head look bald?” There are lots of great “cancer” t-shirts you can get for summer. Yesterday I wore my “I’ve got chemo brain, what’s your excuse?” t-shirt. :)

  9. Jules, as great as your physical style is (and it is) there’s no appearance that could ever compensate for the wit, sass or verve that you serve up in spades. It crackles like electricity – never lose site of that. Xxxooo

  10. Thinking of you Julia! Prayers for continued strength, hope and joy even through the tough days. Losing hair would be confronting, empathise with you and didn’t know that was a side effect of Folfiri sigh… I’m on 5FU and Avastin first line and just some slight thinning of hair. Mental note to self… Be prepared down the track. Oh Lord, please allow healing for Julia. Amen.

  11. I lost my hair a few years back (breast cancer). It sucked big hairy balls. Scarves gave me headaches as did those little cap thingies and the worst thing about wearing them is that I would get the “you poor thing” look from anyone who looked sideways at me. I hated that more than anything. It made me feel like a victim and that wasn’t how I wanted to feel. I went to the Cancer Council and they had a great selection of wigs and scarves and beanies etc and they lent them out free of charge. I changed wigs about 4 times or 5 times so each month I had a different look. Plus I found a nice hat that I could tolerate wearing and that came in handy too.
    I hope your hair doesn’t all fall out because you look awesome with that edgy style.

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