Lymphoedema is a chronic and debilitating condition caused by a collection of lymph fluids in the body after poor development or damage to the body's lymphatics, which leads to persistent swelling in the affected area, most often (but not always) in the arms or legs.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
It affects about 22,000 people in NSW, and 56 per cent of women with breast cancer-related lymphoedema were affected financially, the average cost was $980 per year and it cannot be claimed on Medicare.
It is painful, progressive, incurable and 20 per cent of cancer survivors are afflicted by it as a complication of cancer treatment. It is also a surprisingly little known condition.
Don't ask what sort of spider it was
- Fran Newling
Maria Kelsall said she was extremely distressed when she first contracted it and it remains a painful condition.
"I can go up a dress size in an hour-and-a-half, and the pain that comes with that is terrible," she said.
"I was on a chemotherapy program, so was really, really sick. You don't know what to do. I was so sick from cellulitis. I couldn't keep taking the antibiotics and didn't have the money to buy stuff. My family didn't know what to do."
ALSO READ:
Penny Long had both breasts removed about 15 years ago and suffers badly with lymphoedema in her left arm.
"When it swells up it is very uncomfortable, and now it's going to the other side," she said.
Fran Newling was bitten by a spider when she was 19 and only penicillin saved her life.
"It caused a poisoned leg and after that I started to get a swollen leg," Fran said.
"In those days nobody knew anything. It wasn't until the 1980's before Flinder's University started doing some research. People don't know much about lymphoedema and how it can affect your lifestyle."
Nine-and-a-half-years ago, Heather Marchant underwent a mastectomy and the surgeon removed the lymph nodes from under her right arm.
"I was very lucky to get onto Lisa, who gives me lymphatic drainage massages. She has managed my arm very, very well," Heather said.
She makes you feel so much better when you're with her and I feel very akin to her.
- Penny Long
All these women gain relief from their pain with oncology massage and an holistic approach to their affliction from Lisa Rowe at the Armidale Holistic Massage and Lymphoedema Clinic (AHM&LC).
An evidence based therapy embraced elsewhere, in Armidale Lisa is the sole practitioner and services were subsidised to the tune of $20,000 by Tour de Rocks, which recently withdrew its support and sent Lisa in search of other options.
"We've got a Chronic Management Plan that is put in place by the GP's, and entitles people to five sessions, if you've got depression, heart disease, diabetes; and it's got it's own Medicare numbers," Lisa said.
"But even though it's chronic, Lymphoedema does not have a Medicare number.
"The Lymphoedema Action Alliance is pushing for it to have a number."
Lisa said with a Medicare number, a plan could be put in place. GP's would then be able to refer patients to practitioners listed on the National Lymphoedema Practitioners Register.
"Last year alone I saw 197 patients and there were quite a few people I provided pressure garments for, which are specialised garments for lymphoedema," Lisa said.
"For the past six years I have been so grateful for that funding."
As part of its Saving Life 2019 campaign, Cancer Council has called on the next NSW Government to provide funding for public lympoedema services across NSW, to ensure that people have timely access to evidence based care, regardless of where they live.