Everyone has a place where they do their best brainstorming and for me it is the shower. This can be somewhat inconvenient given you can't simply write down your ideas as they pop into your mind. Often, my husband Serge will see me rushing to my computer or notebook (towel around me and dripping water) to ensure I don't lose any of these lightbulb ideas.
The other day I was in shower humming along to the old song 'You're so vain' and there it was! My lightbulb! Yes, I am vain and very comfortable with admitting it.
Like many women, I have always been insecure about certain things with my appearance. Not the whole package, just a few things. For example, I am surrounded by friends with itty-bitty waists despite our greatest shared hobby being feasting and, although I exercise five days a week and eat very well 90 per cent of the time, I still have my size 12/14 figure stuck on two very short tree-trunk legs.
However, my insecurities have changed over the last 18 months and I have learnt how my confidence is impacted by far more than just my physical self, but also what makes me 'me' – my career, my goals, my future.
Eighteen months ago, I was diagnosed with terminal melanoma – yes, that's right. Terminal melanoma. Skin cancer kills. I was 22 and given three months to live. (Obviously, I am sitting here and writing this, so the treatment I am on is working at giving me time. If you would like to read more about my story you can visit my blog Dear Melanoma here.)
Terminal cancer has done a great job at knocking down my confidence in many ways.
At 22, I had huge career plans and felt like I was pretty on track - I'd just finished a year working in East Timor where I was one of the youngest (if not the youngest) aid and development workers, and planned to return home to undertake postgraduate study in Occupational Therapy, a course that only 40 people are accepted in to each year. Yep, life was good and I was pretty chuffed with myself. Instead, I returned home from East Timor to the melanoma that managed to spread despite being removed a year earlier, told to put my life on hold, and then told to plan for my last few months. For many people, their career boosts their confidence. You have the opportunity to perform and be rewarded for your work. I no longer had this.
If you take one thing from my writing, let it be how 'living in the moment' or 'living each day as if it is your last' is not as grand as it sounds!
On top of this, I had lost confidence in my role as a partner. My now-husband and I met when I was home from East Timor for a brief holiday; only 'officially' becoming an item when I returned permanently. Serge has not known me without cancer. Our relationship knows no difference as it is our normal, and it is largely a relationship of dependence. My dependence. On a surface level, I depend on him financially (as he is the only one working) and beyond this, I require a different level of love and support than most couples experience – he has married someone who will not be able to give him everything.
He has married someone that he will watch die.
This is where the deepest insecurity falls; the fact he married someone who is dying. There is a huge sense of guilt on my part. He has married someone who struggles with day-to-day life. Someone who struggles to find reason to be happy. Someone that struggles to find reason to wake up each day and live. (I am a catch, aren't I?!)
While I can't control these changes in my life and my emotions, I can control how I feel about myself on a physical level. Hence singing 'You're so vain' in the shower!
Cancer has the power to make you feel straight-out shitty about how you look – you may lose your hair, you may lose your colour and look sick all the time, you may not have the energy to wake up in the morning and put your face on or you may no longer feel that you have a reason (work, going out) to put a face on, you may gain weight due to medication or your inability to stay active (or, lets be honest, all that 'living in the moment' that makes you enjoy food WAY too much), you may lose weight (I wish)... the list is endless!
For me, I have been pretty lucky in this department as my treatment has limited side effects. Treatment doesn't make my physically ill, just a little tired. I am well enough to continue exercising, including two sessions with my personal trainer and two pilates classes each week. I haven't lost my hair from treatment. The only real side effect that I have experienced is loss of pigment. My hair and eyebrows have gone completely white and my skin is slowly losing all of its pigment. This sounds like I have got a pretty good deal, which I tend to agree, but this one side effect has impacted my life more than what I initially expected.
On a very superficial level, I look like a ghost and indeed sick. My arms look like I am the queen of cellulite because of how blotchy they are in colour – I have a new appreciation of the fact that fake tans really do make you look thinner! I have had to change pretty much all of my makeup because it no longer matches my skin colour. I find myself at the hairdresser every six weeks trying to match my natural red hair (my hairdresser is an artist), and in between these very important appointments I find myself explaining that I am not prematurely grey, but instead a beautiful shade of pigment-less white.
But, on a serious note, the lack of pigment has impacted how I live my life. The amount of pigment (melanin) in your skin determines your body's ability to handle sun exposure. As a red head, I was already pretty limited in that department, but with no pigment in certain areas, my skin has zero protection – i.e. I will literally burn walking from the front door to the car. Sunscreen no longer does anything for me. (Fun fact: If your sunscreen is 50+, it will protect your skin 50 times more than your own skin can protect itself. Therefore, for me, 50 times 0 is nothing – zilch protection for Emma.)
As you can imagine, last summer was horrendous for me. The last thing you want to do in a Brisbane summer is be covered head to toe in clothing, so the better alternative was not to see the light of day. Social events were planned around the sun – I became a vampire. I declined friend's invitations to the races or I made my friends choose inside tables when we would go to lunch. I depended on other people to help me hang out the washing because I couldn't do it myself (that is a positive, I guess). The only difference with winter would be that I would want to be covered up. (Fun fact #2: The UV rating in Australia never reaches a point to warrant not wearing sunscreen and being sunsmart, so winter does not mean that we can get sloppy with our sun protection.)
However, this changed. I met some amazing Australian women who showed me I could enjoy summer, be sun smart, AND still be stylish. Kate from SunSoaked brought out my inner water baby with her beautifully designed UPF 50 swim shirts. The ladies at Sunbella solved my dilemma of having a head to big for most hats and gifted me two beautiful UPF 50 parasols. Than I met Sarah J Curtis that solved my big head dilemma and gave me hats that actually fit! And, more recently, I met Anita from Sequins and Sand who introduced me to the brilliance of the label Sha-de who designs the most amazing UPF-rated clothing.
It is a really exciting time in the world of sun protection. People are starting to realise the real dangers of sun exposure and there is nothing healthy about a tan. Melanoma isn't 'just skin cancer' – melanoma kills. The businesses taking the dangers seriously and encouraging sun smart behaviours deserve kudos, especially those making sun safety fashionable and something you can actually enjoy.
I thank those people and brands for this, so very much.
I may not be able to change the fact I am dying of cancer or ignore all the feelings and heartbreak that comes with this knowledge. I may not be able to gain the confidence I once felt from achieving career goals. But I can control how I feel about my physical self. These clothing options give me the opportunity to continue to live life outside and enjoy time with my family and friends without limitations. This is time that should not be allowed to be taken away from me.
So what am I going to do? I am going to rock my new outfits and look mighty fashionable (and sun smart)...while continuing to sing 'You're so vain', of course!
Emma is author of Dear Melanoma, a blog that documents her life with terminal melanoma. Eighteen months ago Emma had been given three months to live, but was lucky to gain access to a clinical trial. Dear Melanoma is an authentic, sometimes heartbreaking, yet still hilarious, account of day-to-day life.