Living life with lymphoedema – Mia’s story

Icon Writers / 16 May, 2023

The adage ‘this too shall pass’ is often used when we endure challenging times.

But what happens when the challenge doesn’t go away?

Lymphoedema is a common condition following cancer treatment, where failure of the lymphatic system results in swelling of one of more regions of the body.

Lymphoedema is a chronic and permanent condition.

It is more than just a physical condition as it can be debilitating and disfiguring, affecting people physically and emotionally.

Brisbane resident, Mia Stemm knows this firsthand.

Mia was diagnosed with lymphoedema in 2015 following surgery for stage 1 vaginal cancer.

The now 65-year-old had been closely monitored for many years after receiving abnormal pap smear results since her mid-twenties.

She underwent a hysterectomy in her mid-forties as a precautionary measure.

Mia says that despite years of vigilance, the cancer diagnosis in early 2015 “totally knocked my socks off.”

“No-one ever wants to hear the words: you have cancer,” says Mia.

“I did the one thing people tell you not to do when you’ve been diagnosed with cancer – I googled. But for me, it helped. It gave me some knowledge and power to help me to ask questions throughout the process.”

At the time, Mia was working as a sonographer, specialising in obstetrics and gynaecology.

“It was a weird feeling being on the other side,” says Mia.

“I caught up with former university friends who I never imagined I’d see in that capacity.”

“The support I received from my family, friends and colleagues was just amazing,” Mia recalls.

Mia says she retained fluid following her cancer treatment but didn’t think much of it as she was experiencing other health issues at the time.

“I may have been informed about lymphoedema, but I can’t recall. At the time, my focus was elsewhere,” says Mia.

“I’m normally someone who asks questions and advocates for myself, but I wasn’t in a very good head space at that time.”

In the months following Mia’s cancer treatment, her lymphoedema symptoms became worse.

In late 2015, a visit to her GP led to a lymphoedema diagnosis.

Mia now manages her lymphoedema on a daily basis but admits it sometimes gets the better of her.

“I get frustrated about having lymphoedema because it stops me from doing some of the things I like to do,” says Mia.

“Like sitting at my sewing machine for lengthy periods of time. I love sewing but I can’t spend long amounts of time doing it now.

“Or doing spontaneous things like walking on the beach. Life is more planned now.

“The compression garments I wear get really hot during summer and the discomfort that comes with that isn’t pleasant.

“But I’ve picked up tricks to help.

“I often carry a spray bottle with water. Spraying my garments, hands and feet with water really helps.

“I wear clothes that are loose fitting and are made from natural fibres.”

Mia is now determined to support others living with lymphoedema.

She joined the Lymphoedema Association Queensland in 2017 and went on to become a committee member.

Mia is now a Board member of the Lymphoedema Association Australia.

Alongside her fellow board members, she is committed to ensuring people living with lymphoedema get the information, treatment and support they need to live well, regardless of where they live.

The association is focussed on providing national awareness, information, support, education and advocacy.

“It’s important for people to know they are not alone in their lymphoedema journey,” says Mia.

“I want to see more people talking about lymphoedema.

“My advice to people living with lymphoedema is to be kind to yourself and don’t be afraid to ask for help.

“I’m very lucky. My husband, Kev is amazing. He has been a great support to me. My two sons have also been great.

“I’m retired now but when I was still working following my diagnosis, I was lucky to have a supportive workplace and colleagues who understood that I needed to rest at times to help manage my lymphoedema.

“With the right support, people can live well with lymphoedema.”

Through community speaking engagements, working with local Councils and helping with the association’s Lymphoedema Awareness Month activities in March, Mia hopes to bring more awareness to the condition.

“Living with lymphoedema can be an isolating experience,” says Mia.

“But it doesn’t have to be.

“By speaking up and sharing my story, hopefully I can help others.”

To find out more about lymphoedema, visit www.iconcancercentre.com.au/treatment/lymphoedema

For more information about the Lymphoedema Association Australia, visit www.lymphaustralia.org.au

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