James Barker* has lymphoedema in both legs and visits Barnsley Hospice to manage his symptoms. As Lymphoedema Awareness Week continues, he shares his experiences.
James, 66, lives just down the road from the Hospice but knew nothing about its services before he was referred for help with the lymphoedema that affects both legs. The condition is a result of having the lymph nodes removed from his groin, due to cancers of the bladder and urethra, and he now attends the lymphoedema clinic twice a week.
He said: “I had no idea what lymphoedema was before I had it. I didn’t even know we had a lymph system. I’ve learned a lot about my own body – you have to learn pretty fast! Other people don’t seem to know what lymphoedema is either so I spend a lot of time explaining it. If I had 10p for everyone who asked me why I can’t just take water tablets for it I’d be rich!
“The condition affects my mobility. The left leg weighs 5-6kg more than it should and it causes me to stumble occasionally because the leg is slow to react. It causes me discomfort, especially when I’ve been sitting for a while.
“I also started having difficulties with the skin on my lower leg breaking because of the pressure, causing open sores. The ‘lymph assist’ treatment I’ve been having twice a week has reduced the symptoms and, crucially, stopped it getting worse.
“Coming here has been a very positive thing. Knowing that my leg isn’t going to get any bigger, and that I’ll be able to keep mobile because of the treatment, is important to me.
“The staff here explain everything to me really well and being able to understand my condition makes me feel more confident in the treatment.
“It’s all been very positive, ever since I first walked through the door two-and-a-half years ago. It’s really relaxed, and that makes it less frightening when you first come in. The Hospice has really looked after me.”
*James’s name has been changed at his request to protect his privacy