Being a Junior ‘Spoonie’
By Jasmine Gailer

I recently read about The Spoon Theory and what it is to be a ‘spoonie’. It describes what it’s like to live with chronic illness and thus is the perfect tool for explaining chronic illness to people who are trying to understand it. The original spoonie, a sufferer of Lupus developed the concept over lunch with her friend. Her friend asked her to explain what it was like to have Lupus…really explain it. What’s it like to live with it? How does it feel?

Her answer involved spoons, believe it or not. As they sat across from each other at lunch, she reached for whatever was nearby. She handed her friend a bunch of spoons and told her she would lose one spoon for every imaginary daily activity she completed. She explained how carefully her friend would need to make choices, because the spoons were limited and once they were gone they were gone. She related it to having chronic illness and a life filled with constant choices: ‘Can I cook dinner for myself or will that use up too much of my limited energy? Do I have enough energy to go to work today, or to clean the house?’ Her friend played the game and before long seemed to be truly grasping what her friend’s life was like for the first time.

Since then it appears to be helping people all over the world. The hashtag #spoonie is spreading and it’s allowing people with chronic illness to express themselves accurately. It saves spoonies the burden of explaining their illness and experiences in depth. A simple “Sorry people I will be staying home this Halloween #spoonie” will suffice.

As a 5 year cancer survivor left with a minor disability in my right leg from surgery, I jumped on the #spoonie wagon immediately. After spending the last five years with a limp and a titanium hinge sitting where my knee joint once did, I feel like I’m entitled to class myself as a ‘junior level spoonie’. The choices I make are not based on energy and sickness anymore, but they sure do affect the way I live my life. My first tweet read, “when ppl invite me on a walk I ask, ‘are their any hills?’ #notlazy”.

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The ‘Cancer Card’ is a big deal among my cancer patient and survivor peer group; the permission to say “no” or “this is too hard” is a right that I believe is earned by anyone who has been dealt that dreaded diagnosis. But lately I find my friends and loved ones are starting to scoff at my comments about having a disability. Granted, most of the time I say it in jest, attempting to get out of climbing a ladder or any chores that require a lot of bending. I joke, but as with most jokes there is truth behind them. I genuinely don’t feel comfortable climbing, bending or doing any manual task that could risk me falling, stumbling or experiencing pain. The problem is people have gone from saying, “oh that’s right, no you shouldn’t do this, I’ll find another task for you” to “pfft you can’t keep playing the cancer card your whole life!”

You can buy these awesome 'cancer cards' from the stupidcancer.org. We love the Stupid Cancer org.

So I’m glad to have come across the spoon theory, because it’s about time my people had a refresher on what it’s like to live not only as a cancer survivor but also with a disability (no matter how minor). To start with, the endless possibilities that my life once held are not so endless anymore. I actually feel like they’ve been cut right in half. Skipping….can’t do. Hip Hop dancing…can’t. Becoming a professional rower…out of the question now (ok that last one may not have been a real possibility but I was told once that I had a natural talent for it).

But onto the serious stuff: I can no longer dream about hiking the trail of Machu Pichu. I can’t even run, let alone play netball, ever again (I was good at netball, and I loved it). When my colleague says, “hey I’ve organised paintball for our corporate fun day,” my heart sinks and I know that I’ll have a terrible time because I can’t run away from the dreaded paint gun or chase anyone. I'll lose by a long-shot, and that's not fun at all.

Oh and the decisions! I get nervous when it rains if I’m on a slippery surface and my knee and hip ache more so I have to decide whether getting out and about is worthwhile. More often than not, a drink at the pub with friends or three hours standing on a mate’s veranda just isn’t worth the pain.  If I choose to go to a music gig or concert I am choosing to be in agony approximately 30 minutes into the first set. So you guessed it, I no longer get out much. It’s just not worth the pain.

And what about for the future? This plays on my mind every day. How long will my titanium hinge last? The surgeons estimated 10 years. With each physical activity I’m wearing it down and reducing it’s lifespan. When I eventually have children (providing my ovaries do their job since chemo affected them) I know that walking around on my unstable and weak knee will be difficult with an added 10kg of baby weight. I’m nervous about how I will take care of a toddler when I can’t chase after him/her if they’re in danger. I can’t squat down and talk to them at their level so I think I will spend a lot of time on the floor.

Every day, as a junior spoonie is filled with more decisions and considerations than before. I guess it’s a bit like when you become a parent; there’s suddenly way more to think about. On the plus side I am certainly more organised (where it counts); there’s no last minute dash to the airport gates these days. On the other hand I am also far more relaxed in general because on the days when unforeseen circumstances (peak hour traffic that I forget exists) gets in the way, I know there’s not much I can do but go with it. I can’t run to where I need to be so I just chill, park the car and have a nice stroll.

I guess I just wanted to remind people that being a spoonie or playing the Cancer Card aren’t cop-outs. People don’t choose to have an illness or disability and we don’t want to miss out on anything, even the tedious manual tasks. I’ll always joke with my friends about my disability and ‘gumby’ leg, but it will continue to be coupled with just a small pang of sadness. I’d give anything for a fully functional, flexible, agile body that can climb ladders to clean gutters and push a pram up a big hill and take an untrained Doberman for a walk.

So when you go read more about The Spoon Theory, which I know you will, have a think about how many of the decisions you make in life are dependent on your physical health. Would you head out to the Valley on Saturday in that super cute dress if you found it difficult to walk or if the weather easily made you sick or uncomfortable? Would you squeeze onto a crowded dance floor with a dodgy ankle or lowered immune system? Maybe you’re a spoonie like me, whether you consider yourself a full-blown spoonie or not, and tonight you just can’t wait to get home to your safe, warm home.

#spoonie #spooniehopefullynotforlife #cancercard

"Every Scar Has a Story" - originally featured on Derailing My Diagnosis
By Stephanie Madsen

There once was a time when the biggest surgery I had was the removal of my wisdom teeth. Though I grew up wrestling around with my younger brothers and playing competitive sports, I had never broken any bones, suffered any major sprains, or even had a scar to show for my rambunctious childhood. I never needed glasses or braces. In fact, I’ll never forget the day my mom took my two younger brothers and me into the dentist to decide who would need braces. I cried upon receiving the news that I would be the only one who didn’t need corrective devices screwed into my mouth. My brothers looked at me with confusion and envy. I remember feeling left out of the cool club as not only my brothers would have braces, but so would the majority of my friends at school. I remember my anguish as I realized I would be one of the few without. There was something cool about braces, and casts, and scars. They were a rite of passage.

We’ve all heard that scars are cool. The majority of us were soothed by our mothers and fathers after receiving cuts and bruises in childhood by hearing that though we were in pain then, we’d soon receive an awesome scar to tell the story. Many boys were told, “chicks dig scars.” Scars were a sign of maturity and experience as a kid. Remember going to school and showing off every bump, cut, bruise, and scab to your friends?

SCARS GAVE US CREDIBILITY. SCARS TOLD OUR STORIES. WHEN DID THAT CHANGE?

It was until I received my cancer diagnosis that I remained scar-free. Shortly after hearing the news, I was scheduled for my very first major surgery. One of the first questions I asked was, “How big will my scar be?” The transition from adolescence to adulthood transforms perspective on physical beauty. The world explains to us that flaws are to be covered up. We go from believing that scars give us a certain cool factor and should be shown off, to believing that they should be hidden. There are hundreds of creams being sold to reduce fine lines, wrinkles, and blemishes. We live in a society that tells us that beauty is flawless. Therefore, the presence of flaws translates to a loss of beauty. Scars become unwanted because we stop viewing them as stories and begin viewing them as shame.

A couple of years ago, I was in the midst of a conversation with a young woman who had recently had heart surgery when she shared her distaste for the scar that graced the majority of her chest. She expressed feelings of ugliness because of the mark on her body. She shared how often people stared and how self-conscious it made her feel. She said that though she is happy to be alive, she really hates the way she now looks as a result of surgery. She was covered in shame because of her scar. The young woman was stuck looking at the scar instead of reflecting on the story behind it. And she’s not alone. Many of us look at ourselves and are overwhelmed by what we see. We become trapped in the mindset that we are less than and not enough because of the scars that cover our skin. We believe what the world says and view ourselves as flawed.

Take a second to look in the mirror. Look at your body. Carefully examine each scar. What do you see? Are your marks simply rough, jagged, thick, discolored skin? Are they contorted, gross, and ugly? Do you find yourself wearing clothing that hides your blemishes? While viewing each scar, reflect on why that scar graces your body. What happened? What’s the scar’s story? Were you attempting to pop a wheelie on your bike as a kid? Were you in a car accident? Did you have surgery? Scars not only reflect trauma to the skin, but often trauma to our lives. Scars reflect heartache, loss, and pain and that’s why we are trained to hide them. We become transfixed on the trauma instead of the testimony and we attempt to cover them up in order to avoid the painful memories because of our skewed perspectives.

It’s been nearly four years since my initial cancer diagnosis. Since then, I’ve accrued 14 scars from several surgeries and treatments. It’s taken me time to see myself as beautiful again amidst the markings on my body. I’ve learned that the way we view ourselves affects the way we view others. When I noticed the scar on the young woman’s chest, I didn’t see what she saw. I saw strength and survival. I saw her story behind her scar. If we can see strength in others’ scars, we must see it within our own as well. We must choose to see the story instead of the shame.

Each of my 14 scars tell a story. And all of them proclaim healing and survival. Each one represents strength and overcoming. My story shouldn’t be hidden, and neither should yours. Wear your scars proudly. You earned them. You fought for them. They are your testimony.

Don’t let anyone tell you differently… Scars are still cool.

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Our day started with Kylie and me jumping in a limousine to pick up Jaymee, and really give her the rock star treatment. Limoso Limousine Services kindly donated the limo for the day and our driver Pat came in especially on his day off to ensure that Jaymee was made to feel as special as she is!

It was Kylie's and my first ride in a limo so we may have been even more excited than Jaymee, but that just added to the great vibe of the day. We took some silly photos of us acting like 'rock stars,' i.e. looking drunk at 11am. We were quickly put straight by Dead Letter Circus' bassist Stewart who assured us that not only does he avoid drinking at 11am, but he has also never been picked up in a limo.

We arrived at the photography studio in Pinkenba and were greeted by a film crew (well, it was one videographer but still totally rock n roll!). Jaymee was introduced to Ben from Surge Media who is making a documentary about the project, our photographer Steve from Black Bee Studio, and makeup artist Maria Rivera; all of whom donated their time, tools, and expertise to make the day a success.

She was also introduced to the boys from Dead Letter Circus, who happen to be one of Jaymee's favourite bands. The guys were extremely gracious and so enthusiastic about Scar Stories, Rock Scars, and having fun with Jaymee. We all grabbed a drink and snacks and chatted about everything from stardom to healthy eating.

'Hair' and makeup took a couple of hours. I say, 'hair' in quotations because Maria was actually completely covering Jaymee's vibrant blue hair in a bald cap. Jaymee being bald for the photo was less a reflection of 'cancer' and more a symbol of new life, like the butterflies she was posing with in the shoot. Jaymee did not act like a rock star diva at all during this process; completely chilled and happy to have a laugh with all of us while she told her cancer story to the camera.

Dead Letter Circus' hair and makeup took all of about 10 minutes.

The photoshoot itself was intricate, but we made it fun. Everyone had to be involved; holding butterflies in place, pointing lights in different directions, and trying hard not to make Jaymee laugh in the serious shots. 

The day finished up with me driving Jaymee to work. Such a loyal employee after a big day. We were still hyper from the excitement of meeting one of Australia's best (& nicest) Alt-Rock bands. We're so excited to see the finished Photograph and see it displayed at the launch exhibition of the Rock Scars collection.

Check out the video below:

By, Mallory Casperson

The old days of paper fliers and telephone trees are dwindling.  We live in a society becoming more and more connected every day.  Today’s generation of young adults, ages 18-39 in the cancer world, are on their phones, tablets, and computers all the time.  Watches notify us to calendar appointments and incoming texts.  Digital alarms remind us of birthdays, meetings, classes, and deadlines.  Text messages, online chats, blogs, and emails continually update our friends and family with our daily happenings.  More and more data about our whereabouts and behavior is being collected and tracked, from our purchases to our web histories, and really cool ways of visualizing this data are changing the technological and consumer landscape.

All of this information changes how we deal with our schedules, our loved ones, and most of our surroundings.  We are increasingly reliant on the convenience and ease that this technology affords us.  The extra gadgets in our lives also mean more noise.  When it is easier and easier for other people to get in touch with us, more and more information is passed our way on a daily basis.  Sifting through the noise becomes a bit of an art form.  We quickly learn to wade through the advertisements and the spam to get to the actual communications at hand.  Personable and authentic information is what makes the cut…it is what actually gets our attention and time.  Why then, should cancer advocacy be any different?  How can we use all of this information to be better advocates?

If our Young Adult generation is used to fancy graphics, interesting taglines, and an edgy yet kind, personable voice, then that’s what we give them in advocacy.  Blanket calls for support without a creative and authentic voice will not be able to stand out against the multitude of information that is forced our way from minute to minute.  The Young Adult cancer movement requires young adults supporting young adults, while teaching the rest of the oncology community the importance of age-appropriate resources.  This cannot happen with old-school rallies, flyers, and bake-offs.  We have to go straight to the source of what young adults are already interested in and create a hook from there to cancer advocacy.  We have to use the data, use our creativity, our art, and our bodies to affect change in a world drowning in calls for support.

Many organizations around the world are starting to do this.  From rock concerts where we’re encouraged to register as bone marrow donors, to events with rock stars hanging with cancer survivors and mini music festivals (yea, Scar Stories!), from 5k runs to 26.2 mile marathons, these happenings take cancer advocacy directly to where the young adults already are.  Inspiring young adults to do the things they love while supporting their cancer-having peers puts the authenticity and the personal face back into advocacy, despite the noise of the rest of the world.

This is the new face of advocacy, both inside and out of the young adult cancer world.  With real voices, real faces, and real creativity, we can pull together to affect change.

Is there is something about your body that you don’t like?

As a teenager or in your 20s were there a few more things about your body that you didn’t like? 

Think about how many times you may have looked in the mirror or at a part of your body and just thought ‘ugh’.

It’s an awful feeling. But as we grow older we generally find these feelings subside and we gain confidence and understanding about our bodies that help us get over these little ‘ugh’ moments.

We all know that negative body image is a growing concern in our community and an extremely common trait among young people. The 2014 Annual Youth Survey by Mission Australia found that almost 1 in 3 15-19year olds were extremely concerned or very concerned about body image. It’s a problem. We know this much.

But what happens when a young person, already in a stage of life when issues of self-esteem, body image and stressful physical changes typically arise, is thrown a curve ball – a cancer diagnosis and along with that, physical changes that a) they can’t avoid b) are sometimes permanent and c) set them apart from their peers?

In our experience with AYA cancer survivors, we have identified three feelings surrounding scars and physical reminders of cancer that might come as a surprise to some:

1. A scar doesn’t represent a win, at least not straight away. It would be easy to assume that thoughts like our own Lucy’s are the norm.

We read survivor’s stories and assume that these are the instant response to life after cancer: “seize the day” “I won” “I’m a survivor”. But this attitude is developed with time and healing.

2. A scar from cancer isn’t just a scar. It can be everything in your life that you hate. It can represents fear, unattractiveness, loss, sickness, difference. Most scars are formed quickly, but the process of cancer treatment is usually slow and gruelling. A scar can hold the memories of every day in hospital, every sick bag being filled, and every vein that decided to hide. Just when you start to feel a sense of normality forming, somebody takes a sideways glance at your scar and you are reminded of everything.

3. It is powerfully uncomfortable to answer this question:

It is surprising how many people are perfectly comfortable asking a complete stranger why they are walking funny or exclaiming how much of a ‘beauty’ someone’s scar is and asking how these things have happened. And what’s perhaps more surprising is how deeply and utterly offensive it feels when they do. But people never assume illness in a young adult. Ski accident? yes. cancer? no. And the uncomfortable feeling that many young people get when others enquire about their body, often prevents them from having the confidence to go out and meet new people in the first place.

Working with cancer survivors of all ages on Scar Stories projects, but specifically with young adults, has taught us a few things:

1. Above all else, most young adult cancer patients and survivors want to feel less alone.

It is through Scar Stories that many young survivors realise that there are many other people the same age who are going through very similar experiences and having similar feelings about their post-cancer bodies. In our advocacy work for AYA cancer a consistent response to ‘what helped, or would have helped you during treatment or survivorship?’ is ‘meeting other people like me’. And when it comes to body image specifically, meeting other young people who have been physically affected by their treatment and aren’t afraid to share these feelings with another, has proven invaluable.

2. Second to feeling less alone, is feeling more normal.

It is extremely important for our AYA community to be aware that these feelings, in fact all feelings after cancer, are normal. If they are thinking it, chances are someone else has thought it too. This is why Scar Stories publishes not just photographs, but patient and survivor stories that share all the different shades of emotion relating to scars and post-cancer body image.

3. Exposure can be therapeutic. Revealing the parts of your body that you may think are unattractive, gives others the opportunity to prove you wrong. This isn’t for everybody of course. But those who have been photographed in a Scar Stories project have expressed feeling special, interesting, and starting to feel more proud of their scars and their experiences. Having professional photographers take their photos means that position, styling, composition and lighting will be flattering and show our brave survivors in their best light. The photographer not only empowers the subject, but helps them tell a powerful story for future viewers.

4. A body is a sacred thing. Cancer treatment can ruin the respect and love we have for our bodies - due to the scarring, the feeling like our body has let us down, or that we have let our bodies down, the feeling like you’re no longer a person, but a patient. A feeling of being a lab rat, poked and prodded with an apparent disregard for dignity. It is so important for medical professionals to be aware of the lasting damages that can be done during treatment when a person is receiving treatment at such a critical, image focused time in their life.

Given just the chance to support one young cancer survivor to start to repair mentally after treatment is an honour. But Scar Stories plans to help countless individuals, through creative projects like photography, to start feeling beautiful again, worthy and interesting, and empowered to tell their story.

Our support is growing and the team is excited for all that lies ahead.

In summary, the way we see ourselves is important. It is difficult to keep positive after stressful events, and negative body image and self image affects young lives every day. Awareness is key - being aware as medical and allied health professionals, being aware as individuals, and being aware as a community. With the knowledge, we can start working to repair the damage during survivorship and support our community of beautiful, inspiring, and brave cancer patients to be proud of their scars and their stories.

References:

https://www.missionaustralia.com.au/what-we-do/research-evaluation/youth-survey

On Monday July 28, The Foxy Bean was a boiling pot of art and inspiration for the launch of Scar Stories' very first book, with an exhibition of portraits from the book, live street art by Barek, music by Adil Memon and Deena, and I'm sure you'll agree, an inspirational speech by Scar Stories cancer survivor and Paralympic gold medallist, Chris Bond.

We have been lucky to have a number of talented and creative people join us in 2014. We didn’t think we could top our benefit gig with Hunters & Collectors earlier this year, however seeing our book in print and taking in the amazing vibe of the book launch has been spectacular. Adil, Deena, Barek and Chris are truly talented and generous individuals and it was a thrill seeing them all in action!

The live art by Barek was really something special. Foxy Bean now features a permanent Barek piece. Go check it out!

Congratulations and thanks to the generous folks who donated and took part in the live and silent auctions, run by Ray White auctioneer Sam Devlin and MC, Lucas Wilson: 

1. Terry Murphy snapped up the first ever Scar Stories book hot off the press, signed by models and photographers, along with a gift certificate from Scar Stories photographer Suzanne McCorkell of Soul Photographic Design!
2. Craig Hurley scored two VIP passes to the2014 Mitchell Creek Rock n Blues Fest, undoubtedly one of the best festivals on the calendar!
3. Two awesome art pieces donated by Barekwent to Dean Phillips and Dena Dennes
4. Ben Trowse was the lucky winner of the stunning framed portrait of 'Lucy' by photographer, April Kendall

Kylie Lowe and Suzanne McCorkell are proud new owners of a signed Hunters & Collectors poster and Chris Bond Olympic jersey, also raffled off during the night.

A HUGE THANK YOU to each and every one of our more than 100 special guests who ventured out on a Monday night to support us, adding to the wonderful, warm atmosphere. Together we raised over $2,350 on the night and saw the start of many new possibilities!

As I sped down the Bruce highway toward Caboolture, QLD fumbling with my car radio and trying to find a channel that wasn’t drowned by static, I wasn’t thinking much about the preciousness of life. Even after a cancer experience of my own, I still forget sometimes that this comfortable life I lead is not fail-safe. I pondered the task ahead: find Jas and Sue’s place, listen to some stories, and attempt to be helpful to Charmaine Lyons, Scar Stories photographer and film maker David Shipton, who is making a documentary about our organisation. I’ve met countless cancer survivors over the last few years, heard many stories, and been to a dozen photo shoots. Even though no person, and no experience is exactly like any other, I don’t think I was quite prepared for the story I was about to hear….

Jas and Sue had woken up feeling nervous about the day ahead. Their story is one of struggle, but they have never sought people’s pity. This feeling, they told me, was alleviated once they got to know Charmaine, who is a gentle soul, and an unassuming photographer. The room was filled with people devoted to illuminating strength and beauty, one of Scar Stories’ missions. The others began photographing and filming, and I started my expedition into their past, through the eyes of one of the most resilient mothers I have met to date.

It was never as simple as just beating cancer…

Sue is 62, living with her 23 year old daughter Jas, and incredibly they are both cancer survivors. Sue and I spoke in great detail for a long time about their lives, with Jas chiming in when Charmaine gave her a break from posing. As it turns out, it was never as simple as just beating cancer. There was so much more.

Their story starts when Sue was 39 years old, and her daughter just 5 ½ months. After seeing a doctor about headaches, Sue was sent to hospital and then sent home with some medication. When she returned to the hospital the next morning, her face had dropped on the left side and she had numbness down her left leg. She’d had a severe stroke.

Learning to walk, talk, and feed oneself is no mean feat for anyone, but especially for a woman who has just had a baby and is still breastfeeding. Sue told me about the anguish she felt at not being physically capable of breast feeding her daughter Jas. Sue said she wouldn’t take to bottle-feeding and went without feeding for four days!  I was getting a feel for the strong-willed nature of Jas even from such an early age, and was also getting a strong feeling for the powerful bond that existed between this mother and daughter. “Even though we have had a tough life, and a lot of misfortune we have always had each other,” Sue told us.

“…we have always had each other…”

Sue went on to tell me how she and her daughter learnt to crawl and walk at the same time. She spoke of so many struggles and has so many vivid memories. To be honest I could barely get a word in, which is lucky because I didn’t have anything worthy to say. I didn’t know how to respond to such turmoil; like having to re-learn to speak, walk, and do normal daily tasks, whilst in many ways missing the chance to raise your own baby. “I was scared of the washing machine…I didn’t know what it was…I had to learn how to make a cup of tea like it was the first time.”  Sue recovered the use of her legs and face, but not her left arm.

It wasn’t long before another bombshell hit the family. When Jas reached the age of 2 ½, she was diagnosed with a Rhabdomyosarcoma in her right shoulder; a rare cancer of the muscle, with a poor prognosis. The doctors told Sue and Jas’s father that she probably would not live past three years old.

…she probably would not live past three years old

Jas’s father wrote everything down. I too know full well how hard it is to keep track between one doctor and the next, from hospital to hospital, of countless medications, and of symptoms, diagnoses and instructions. But Sue spoke of the added strain of travelling from Mackay to Brisbane, and still having memory trouble due to the stroke. I could feel the struggle just radiating from Sue’s memories. She showed Charmaine, David and I the notebooks and records. It was just words and numbers, but it was astonishing.

Jas told me what she could remember from her cancer experience. She has a lasting fear of clown doctors that she credits to her time at the Royal Children’s Hospital. She remembers wheelchair races and picnics in the ward, but her most vivid memory is of the wooden cubby house they had in the courtyard of the hospital. She would hide in it when it was time for an appointment. It was an escape. On Jas’ 3rd birthday the Make-a-Wish foundation threw her a big party and surprised her with her very own cubby house. It was an exact replica of the one in the hospital, and was delivered to her door on November 10, 1993 on a big truck.

Mere months later, Jas was given the ‘all clear’. However it was a short reprieve. After only a couple of weeks the cancer was back, and was more aggressive. This round of treatment involved stem cell transplants and more extreme doses of chemotherapy and radiation. Jas wouldn’t eat. “…my body thought that a grain of rice was enough,” she told me, and eventually she had to be fed through a tube.

“…my body thought that a grain of rice was enough”

After she was cleared for the second time, Sue and Jas decided that it was necessary to move to Brisbane and be close to the Royal Children’s Hospital. Jas’ father stayed in Mackay. So with that, Jas and Sue started their new life, with a five year old Jas taking on the responsibility of caring for her mother. Jas did what she said were simple things such as helping around the unit and learning how to cook and clean.  Most of us wouldn’t call these tasks simple for a five year old. But that’s the thing about Jas and Sue, they are resilient.

Which is just as well, for what happened next…

When Sue was 50 and Jas was 11 the doctors discovered a skin cancer on Sue’s face. She had numerous operations on her face along with radiotherapy. As Sue told me this part of the story I thought, “as if they hadn’t been through enough.” After a few months she was finally in the clear…or, once again so they thought. Like Jas, Sue relapsed. This time it was a tumour behind her left ear that ran down her shoulder and to her neck. She received a skin graft, and the scar was so obvious that Jas wouldn’t even let her mother look in a mirror. Jas wanted to protect her for as long as possible, and when she finally saw the scar that was left behind, Sue wouldn’t leave the house. “It took me many months to get mum out of the house and even then people would just stare, and for mum, that hurt.”

“…people would just stare, and for mum, that hurt”

“It is easy for me to cover my scars, but for my mum not so much, and because of this she doesn’t like to go out a lot because people just stare. For her, she doesn’t see her scars as beautiful but as a hardship. For me, doing this shoot was to show people that scars can be beautiful.”

Jas, Rhabdomyosarcoma by Charmaine Lyons

And life can be beautiful too, in spite of everything…

Last year on the 27th of November Jas and her partner found out that she was pregnant with her first child. Jas being pregnant goes against all the doctors’ predictions. As a childhood cancer survivor, it was predicted that Jas would go through an early menopause. “I was over the moon. It was the one thing I had always wished for and for it to be coming true was a miracle.” The glow coming from this expectant mother was dazzling. The vibe of the room when mother and daughter spoke of the pregnancy was obviously one of hope and optimism. As Sue stated so poignantly, “There are three people in this room who aren’t supposed to be here.” Such boldness after so many trials.

“It was the one thing I had always wished for…”

A morning photographing Jas and Sue felt like an exclusive access into a story that by all rights should be told as a lesson to the many carefree, unaffected individuals who may forget at times that life is not impervious to tragedy and misfortune. They have humble hearts though, and didn’t compare, or seem envious of anyone else’s lives. At the end of our meeting Sue so plainly said, “We’ve had a sad life…but we have survived and have had lots of happy times.” There isn’t often glamour in a Scar Story. But there is strength and truth. Perhaps the truth to take from their story is just to keep going.

Sue and Jas are both cancer free today, and on July 20 there will be three generations living in their family home, defying the odds and living on.

Contributors: Jasmine Gailer, Jasmine Fry, and Charmaine Lyons

If these thoughts were similar to your own, then I’m sorry but you are dreadfully mistaken. Five women with three hours and two bottles of red wine do write a killer business plan. After all, women are known for their multi-tasking abilities. Branding, marketing, events, products…we did it all – on my veranda, with a $30 Dominos delivery deal.

This post is not about women in business. Nor is it about wine (and two bottles is nothing between five anyway, just saying). It is about being passionate enough to work for a cause; inspired enough to spend hours of free time working pro-bono; and ambitious enough to start an organisation from scratch.

I started Scar Stories in 2011. The first event was an exhibition held in January 2012. I pulled it off, thought, “how good am I,” and kept going. November 2012 saw the second Scar Stories exhibition land in Melbourne, Victoria with the help of design goddess Kylie Cobb. It was a success (a triumph!), but it became harder to progress with such a small team. We picked up pace in 2013, with some new inspiration stemming from the Sunshine Coast art expo Life Art Worldwide. By Christmas we had spread our wings and made contact with not only Dallas Frasca, Victorian rock n’ roller, but also Doug Falconer, drummer of iconic Aussie band Hunters & Collectors. January 2014 showed us that the force of well-known ambassadors is one to be reckoned with. 460 people showed up for a secret Hunters & Collectors benefit concert in Castlemaine, Victoria. The theatre donated all profits to Scar Stories and the consequent patron support was priceless. We were in the door…

This month we are officially incorporated, and there are at least three major events ahead of us for 2014. It’s business time. So we had a planning workshop on Monday night. President, Secretary, Treasurer, Marketing & Graphic Design Director, and Public Relations Consultant. Five creative individuals dedicated to making these events a success. It’s amazing what surfaces when you put that many heads together.

We all work full time, so it is amazing that we were able to function at all in a meeting commencing at 7pm on a Monday night. I guess that’s the power of a good cause. Two women at that table were there in the hospital, three and a half years ago, watching me lose my hair after being diagnosed with an osteosarcoma. I imagine it would be hard for them not to be ardent about assisting young adults going through cancer treatment. That said, we all have lives; all encompassing, distracting, important lives. Our head of Marketing & Graphic Design has two children and a husband and a business and a brother and a mortgage. Kudos to her as she wasn’t the first to fall asleep….

What makes Scar Stories special, in my eyes, is that despite the abundance of existing obligations in our lives, we are dedicated to this cause. Because it’s special. But we had to put that in writing. I’d had two glasses of Cab Merlot at this stage.

First on the agenda was Values: what core organisational values must be imbedded in our organisation to establish a culture capable of achieving our Mission? That’s easy. Isn’t it? Let’s head back to my Year 10 resume – hard-working, team player, punctual, attention to detail….hmmm wrong! The conversation surrounding this question could last hours in another organisation, but for us, it was absolute. Our organisation isunique and it truly does take, in our experience, certain passionate individuals to exemplify the embedded values. Energetic, Passionate, Creative, Daring, Innovative…we’re sounding a bit like ‘Apple Inc.’ aren’t we?!

Second on the agenda: Goals – make money, raise awareness, support young adults with cancer. Easy. “How do you differ from other organisations; what makes you competitive?”…oh, tough one. It seems ridiculous at first to be ‘competing’ against other charities. We’re all striving for a better world; for more support for the disadvantaged. The ugly truth is that, in fact there are thousands of charities and not-for-profits around the world vying for the attention and wallet-occupants of the developed world. Australians are, according to the Australian Bureau of Statistics, quite a generous population, and so a positive outlook on the whole thing is that we’re giving the people every opportunity possible to donate to their favourite cause. Australia is not going to lose a cent of charitable giving due to complacency, that’s for sure.

Scar Stories provides something new. We target a population that is flailing in the cancer world. With adolescent and young adult (AYA) diagnosis and cancer fatality rates either increasing or remaining stagnant, while others improve, it is imperative that we focus our attention here. Added issues surrounding cancer in young adults are self-esteem, fertility, education and career disruption to name a few. Why wouldn’t you support this?! Well that’s how we feel. We at Scar Stories Inc. are intensely aware of the deficiencies in cancer care for AYA patients. We are passionate, energetic, and daring…we are the Steve Jobs’ of the charity world, with sexier reading glasses.

It’s a team of real people, with real connections to cancer, that take their sentiments and turn them into an exhibition (May 2014), a book (July 2014), a music festival (October 2014) and a movement – to bring to light issues surrounding young adult cancer and to empower young people to see their scars in a new light. The team, the hours, the wine, the business – it sure helps me see my scar as empowering and beautiful.

This is Scar Stories 2014. I’m ready. Are you?!

#myscarstory