“I am in a much better place than I was a year ago”
A patient living with lymphoedema in her leg has praised the care and support she receives at our specialist clinic as the nation marks Lymphoedema Awareness Week.
Janine Gibson said the swelling causes pain and discomfort and makes buying trousers and shoes to fit ‘a nightmare’.
But she said the help she gets from The Woodside Clinic at St Catherine’s helps her to live as best she can with the condition. She is sharing her experiences as part of a national campaign designed to raise awareness of lymphoedema and how it affects people.
Janine said: “I do find that most people don’t know what it is when I tell them.
“It can be a very debilitating thing which impacts on lots of different areas of your life. I’m happy to support anything which raises awareness of it and the fantastic service The Woodside provides.”
Lymphoedema is a condition which affects the lymphatic system, the process by which we filter and drain waste fluid from our bodies. If this system stops working, the accumulation of fluid in the body’s tissues causes swelling known as lymphoedema.
There are two types – primary, which is often hereditary – and secondary – which can be brought about by cancer treatment, surgery, trauma or infection.
Janine’s condition is hereditary – although she knows of no history of it in her family – with the first symptoms appearing around 12 years ago.
“It started off as swelling in my ankle which just came on in the summer,” she explained.
“Water tablets would take the swelling away and it would disappear completely in the winter. But gradually it crept up my leg and into my thigh – the tablets stopped working and eventually I was diagnosed with lymphoedema around three years ago.”
It was around the same time that in a cruel twist Janine was also diagnosed with breast cancer – undergoing a mastectomy to remove the tumour. Fortunately, doctors confirmed it had not spread to her lymph nodes, although some had to be removed for testing which has had further implications for her lymphoedema treatment.
Janine said: “Obviously the breast cancer diagnosis was a shock and it wasn’t pleasant having to undergo an operation – but I have had reconstructive surgery and I am doing okay. To be honest, it’s the lymphoedema which I find more stressful, the fact that it’s never going to get better and it’s something I have to live with.
“Along with the physical discomfort it causes, there are also practical issues. I am only 4ft5ins and wear a 1.5 sized shoe – I already struggled to find things that fit me, without the added pressure of a swollen leg and foot. It’s almost impossible to find things I can wear. It’s very frustrating and has impacted on my confidence and self-esteem.”
Faced with such challenges, Janine said the treatment and advice she gets from the team at The Woodside Clinic is invaluable.
They have helped source the correct pressure stockings and tights and a pump machine that she has bought to use at home, as well as advising on massage techniques that she can keep up away from the clinic. She has also undergone various treatments with one of our lymphoedema nurse specialists, Julie Norris, including bandaging, laser and oscillation therapy.
“I am in a much better place than I was a year ago,” Janine said.
“I know we cannot cure it, but knowing I have the help and expertise of Julie and the team is comforting. They are always looking for different things we can try that might be able to help.”
This year’s Lymphoedema Awareness Week runs from March 4th to 10th with the theme ‘Sock it to lymphoedema’. Staff at St Catherine’s will be wearing colourful socks and tights on Wednesday March 7th to raise awareness of the condition and to support the campaign. To find out more click here.
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