I’m no stranger to a scar story. I search for them…live for them. But a Scar Stories photo shoot I attended on February 13 showed me that there is still room to be amazed. Sue and Jas have been through more than one family should ever have to in a lifetime. Their story sheds new light on survivorship, motherhood, and hardship. From sickness and disability however, has arisen an unbreakable bond that spans three generations.
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.”
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