When Meryl Jackson-Kew had breast cancer treatment, she knew she had to be on the lookout for nasty side effects.
She'd been warned about the risks of developing the life-long, debilitating swelling disorder known as lymphoedema.
Ms Jackson-Kew did all the right things, even wore a special sleeve, to ward off the condition that usually develops on the affected side after surgery or radiotherapy. And she thought she was "home free".
"Famous last words," the Figtree High School teacher said.
"Nine years later, it happened overnight, my arm became swollen. But it was in the wrong arm, the opposite side to the cancer. Yep, Meryl gets it in the wrong arm.
"Now it's across both arms, unlike everybody else, I managed to get it in two. Just lucky I guess."
The music teacher cops it on the chin - even when she has days that her arms are so big she can't wear the shirts she wants.
"But I do like it when I can say to a specialist, 'Look what's happened to me', and they say, 'It's not supposed to happen like that'. I certainly keep them guessing."
Ms Jackson-Kew said being a "late bloomer" with lymphoedema took her by surprise but was all part of her journey.
She feels lucky to share her experiences with people who understand - school administration officer Dinese Jenkins and fellow teacher Cathy Smith.
"We are all breast cancer survivors of different stages and we are all watching lymphoedema," Ms Jackson-Kew said.
"It's really important to the kids at our school to know we are going through this journey together. That's what we call it, our journey.
"The kids ask is it a happy or a sad journey. We say, 'Happy of course, we are survivors'. We get a lot of support from each other which is really, really good."
Ms Jackson-Kew's passion for conducting the Illawarra Choral Society keeps her healthy.
"Apart from the swelling you get a real heaviness of the arm. You know when it's going to swell because of the heaviness and the ache across the back of the neck.
"But I'm still conducting, it hasn't stopped me - maybe it's helped," she said.
"Research shows people with lymphoedema should exercise, not to prevent it, but control it and that's our goal, to control it together."
LYMPHOEDEMA: FACTS & STATS
There are two types of lymphoedema, primary and secondary.
Lymphoedema affects people of all ages – there is no cure.
Lymphoedema occurs when the lymphatic circulation fails to function correctly, causing persistent swelling of the limbs and other areas of the body.
An estimated 400,000 Australians have lymphoedema.
WHO IS MOST AT RISK?
• Cancer patients or survivors are at greater risk of developing secondary lymphoedema.
• About 300,000 Australians have cancer-related lymphoedema.
• Twenty per cent of Australian cancer survivors will experience secondary lymphoedema equating to more than 8000 new cases annually.
EARLY SIGNS AND SYMPTOMS:
• Transient swelling of a limb or other region of the body.
• Infection (due to lymph stasis) is often the first sign of a problem.
• Feelings of aching, heaviness, stiffness in the affected body part.
• Limitation of movement.
• Tightness or temperature changes to areas of the body.
• Clothing, jewellery or shoes may feel tighter.
For more information visit lymphoedema.org.au