“What have you done to your arm?”
My heart sinks. I don’t want to answer this kindly-meant question about my swollen hand and arm. Wearing a compression sleeve (think Spanx for arms) hardly ever goes unnoticed by anyone looking for the chance to strike up a casual conversation. But I don’t want to have to explain a condition that even my GP struggles to understand. I don’t want to have to explain that I’ve had breast cancer.
You see, I have lymphoedema.
Lymphoedema, pronounced lim-fo-dee-ma, is a chronic (long-term) condition that causes limb swelling and leads to pain and loss of mobility. About 1 in 5 people (20%) develop lymphoedema after breast cancer treatment, if it includes surgery to remove the lymph nodes, or radiotherapy. This is because, simply speaking, the lymphatic system drains excess fluid from tissues and damage as a result of surgery and/or radiotherapy causes fluid to build up and tissue to swell.
My lymphoedema began with dry hands. It was 2012 and I’d just finished chemotherapy to treat a recurrence of breast cancer. Still vulnerable to infection, I was scrupulously washing my hands and noticed that my right hand was puffy. By the time my surgeon had referred me to a Lymphoedema Clinic, a few weeks later, my hand was alarmingly swollen. I couldn’t hold a fork, pen or get my arm into the sleeves of my clothes. Then, fluid started leaking out from cracks in the skin on my fingers. It was horrible. And it wasn’t just physically debilitating, I felt ugly and that, once again, my body had failed me.
With a cancer diagnosis, everything happens quickly: scan - results - treatment. Every new symptom is swiftly investigated. With lymphoedema, everything happens slowly - I wait weeks for an appointment where I’m advised to try out a new technique for several months! I now realise that this approach reflects the fact that there is no cure for lymphoedema and standard treatments, such as massage, compression sleeves and Kinseo taping aim to reduce and control swelling.
I was offered intensive multi-layer bandaging because my hand was so swollen. For three weeks, I made a daily trip to the hospital for my arm to be bandaged by a nurse. Progress was slow. Since then, I’ve learned that reducing swelling is a bit like losing weight, it’s gradual and there are, frequent, setbacks.
Over 18 months, I was able to lose nearly a litre of fluid from my arm. I worked really hard to achieve this - by wearing my compression sleeve daily, a glove at night and doing exercises twice a day to improve the flow of my lymph fluid. Although my arm looks ‘normal’, my hand remains troublesome and unless I wear my compression sleeve every day, the swelling returns with a vengeance. I see a nurse every six months who prescribes two made-to-measure compression sleeves. It takes her an hour to take the twenty-seven or so individual measurements of the length and width of each of my fingers, hand and arm. I loathe it. I hate the daily gymnastics involved in getting my sleeve on (imagine pulling on size 6 spandex pants), the painful blisters that develop between my fingers, the loss of sensation, the stiff, uncomfortable fabric and the poor choice of colours.
Infection is an ongoing worry because the lymphatic system plays such an important role in helping the body deal with infection. I’ve had cellulitis - a bacterial infection of the skin and tissue - at least twice a year and it caused me a lot of trouble last year when I was ill for months following a mosquito bite. Because untreated cellulitis can lead to septicaemia, or blood-poisoning, I keep a supply of emergency antibiotics at home.
Imagine carrying a heavy bag full of shopping all day and the resulting ache in your shoulder. That’s how it feels to live with the constant sensation that one arm is heavier than the other. Elevating my arm - on the back of a chair, across the back of a bus seat, or on cushions - offers some relief.
Then, last year I developed lymphoedema in my left arm, four years after breast cancer, a cruel PS.
Shockingly, trainee doctors receive only 15 to 30 minutes of education on the lymphatic system. This means that that they don’t have the knowledge to help us to manage our lymphoedema. Breast Cancer Charities focus their efforts on lymphoedema prevention. What about those of us living with lymphoedema? We are the forgotten ones. Lymphoedema has been described as the Cinderella of medicine and NHS services are notoriously under- resourced. Women’s instinctive response - relief that lympoedema, unlike cancer, is not life-threatening - also acts as a barrier to change because it prevents us from demanding better treatments. My advice to anyone newly diagnosed with lymphoedema is to be proactive and educate yourself. Organisations like Lymphodema Support Network and Lymph-What-Oedema Support are invaluable.
Kathy Bates, the Academy Award-winning actress and spokesperson for Lymphatic Education & Research Network (LE&RN) has bravely - especially for a woman living in the public eye - shared her own experience of lymphoedema. On 6th March 2016, LE&RN established the first World Lymphoedema Day, a collective effort to raise awareness of the millions of people living worldwide with primary and secondary lymphoedema and lymphatic diseases. Inspired by her example, I’m sharing my own experience of lymphoedema for World Lymphoedema Day on 6th March 2018. Help us to spread the word.