Lymphoedema Awareness Week and hospice care

Lymphoedema is a long-term (chronic) condition that causes swelling in the body's tissues. It can affect any part of the body, but usually develops in the arms or legs.

It develops when the lymphatic system doesn’t work properly. The lymphatic system is a network of channels and glands throughout the body that helps fight infection and remove excess fluid.

According to the British Lymphology Society, lymphoedema is poorly understood, and few people are aware that the condition is actually quite common, affecting around 430,000 people in the UK, of all ages. 

Whilst it can be hereditary, it may be caused by many conditions and factors that increase the risk of developing lymphoedema and chronic oedema. 

It’s really important to recognise and treat lymphoedema early to prevent complications, such as cellulitis, and minimise its severity and impact.

Lewis-Manning Hospice Care’s Lymphoedema Service helped look after Richard, a keen sailor, aiming to keep him as independent as possible after he’d experienced devastating surgery and radiotherapy for cancer.

They treated him with light therapy and manual lymphatic drainage and taught Richard techniques to help his swelling. They say, “he’s been instrumental in keeping his swelling stable as much as possible…he is really conscientious with his drainage at home, even on his down days.”

Richard’s determination was such that he continued working through this treatment – despite experiencing severe swelling in his face. This made it difficult for him to breathe: he couldn’t sleep properly, and was also fainting regularly due to lack of oxygen to his brain.

In his own words, Richard ‘accepted the fact the medication had stopped working’, and he decided to stop his immunotherapy. The quality of his life was the most important thing for him and his family.

During a therapy session Richard told staff at the hospice about a particular disappointment: a friend wanted to take him out on his boat, but his condition was making it challenging. The hospice team decided to arrange a boat trip, accompanied by nurses to look after his unpredictable condition.

With just a short window of opportunity while Richard was still well enough, the team pulled off the boat trip with the help of a local charity supporter. On a sunny day in early October, Richard and two hospice nurses set off across the water from Christchurch to the Isle of Wight and back. 

The trip meant a great deal to Richard: it helped give him his sense of independence.

The hospice adds that their service goes beyond physical treatment, and treats every patient holistically, with respect and dignity: “we give patients and their families the luxury of time.”

Lisa, a married mother of two, with a lifelong passion for swimming, was diagnosed with breast cancer at the age of 42.

Despite undergoing a gruelling year of treatment, the cancer returned after just one year, forcing Lisa to have a double mastectomy. But the treatment caused Lisa to experience lymphoedema.

She says, “Within the first few months after my lumpectomy, my wrist had swollen to the same size as my forearm…the swelling and pain I was in became unbearable. It started slowly developing up my arm and into my breast.

“Then my hand began to swell, a little at first. Bacteria got in, and I ended up with a very bad case of cellulitis. My arm and breast were at least three times their normal size.”

Lisa was referred to Lewis-Manning Hospice Care’s Lymphoedema Clinic. Linda, Senior Lymphoedema Nurse said, “We delivered some intensive therapies including light therapy, physiotouch therapy, manual lymphatic drainage and SLD.

The clinic supports people who experience lymphoedema because of cancer treatments, helping them to manage their symptoms with specialist treatments, drainage massage techniques and compression garments.

Lisa says that she counts herself lucky because of the early intervention with Lewis-Manning:

“I needed to learn to live with lymphoedema, and to my amazement my swelling reduced significantly in a very short period of time.”

“Knowledge empowers us to take charge of our own situations and early intervention provides the best chance for living a full life.”

Lisa now uses her knowledge to live her life to the full, continuing to be supported by the hospice.

Find out more about how Lewis-Manning Hospice Care supports people experiencing lymphoedema.

Thank you to Richard, Lisa and Lewis-Manning Hospice Care for sharing their stories for Lymphoedema Awareness Week.