Let’s talk about Lymphoedema
Learning to thrive with one of cancer’s enduring side-effects.
This week is Lymphoedema awareness week, and 6 March is World Lymphoedema Day, so I wanted to share some of the ways I live with this common side-effect of cancer treatment. I will also be in conversation with a lymphoedema nurse for a Breast Cancer Now Facebook Live on Thursday 4 March, so tune in at 7pm GMT via their Facebook page if you want to find out more.
But first, what is lymphoedema?
As well as veins and arteries carrying blood all around the body, there is another system that we don’t always learn about in school: the lymphatic system. It’s a network of channels and glands throughout the body which help fight infection and remove excess lymph (a plasma-like fluid which transports the good stuff back into your blood circulation and the bad stuff out of your system). When it’s all working as it should, we don’t even notice it’s there. Sometimes when we are ill, we get swollen lymph glands, usually in the neck, which shows that our lymphatic system is working hard to get rid of the infection. Lymphoedema (sometimes spelt lymphedema) refers to a chronic condition where one or more of your limbs is either permanently or occasionally swollen because your lymphatic drainage system is compromised. It’s a very common side-effect of cancer treatment because lymph nodes are often removed during surgery.
How did I get lymphoedema?
When my surgeon removed my breast cancer tumour back in 2017, I also had a couple of ‘sentinel’ lymph nodes removed from my right armpit. (Nodes is a fancy word for gland, and the sentinel nodes are the first couple of lymph nodes which traditionally carry lymph fluid from the breast to the rest of the body.) If the cancer was to have spread, that’s the main route it would have taken. Thankfully, my pathology results indicated that there was no sign of cancer in my lymph nodes, so I didn’t have to have any more nodes removed. A few months later, we had an unseasonably hot May, and I was walking round Kew Gardens with my friend Nick who was visiting from Australia. Suddenly, out of nowhere, my right arm ballooned! My arm, my hand, all my fingers, became really fat and uncomfortable: my fingers looked like Cumberland sausages, and I felt as though my hand was going to burst. (Imagine a rubber glove filled with air: that was my hand!) It was very strange. This was the beginning of my experience with lymphoedema.
I have managed to control the lymphoedema in my right arm. I occasionally wear a compression sleeve and glove when it’s particularly bad, or if I’m going on a long car journey or flight, and I know that hot days and big hikes exacerbate the swelling, but I have it largely under control.
However, in 2019 I had to have major surgery for ovarian cancer, and I had all of my pelvic and aortic lymph nodes removed. I also had both my breasts removed as a preventative measure, and there are nodes in the breasts too, so now my lymphatic drainage system is seriously compromised. My lymph fluid has very few options left when it’s searching for somewhere to go. This has led to quite severe lymphoedema in my trunk, pelvis and my right leg, ankle and foot. (My medical team suspect that it has only affected my right leg and not both legs, because when I was a child I broke my right ankle on holiday in France, so the system in that leg was already compromised.)
Unlike the lymphoedema in my right arm, my pelvic and leg lymphoedema doesn’t ease off very much. My pelvic area has swollen so much that my clothes are two sizes larger than they used to be, and my right ankle is permanently swollen. I wear compression garments on my legs most days (sometimes full tights, other days just a single leg) and my partner carries out ‘manual lymphatic drainage’ on my right leg every evening. This is a special type of massage which encourages the lymph to drain, and we taught ourselves via YouTube videos and through reading articles.
The swelling is exacerbated by sitting at a desk for more than 30 minutes or so, or standing for a long period of time (such as when I’m cooking in the kitchen), as well as the aforementioned hot summer days and long hikes. So I have to navigate these triggers and adjust my day accordingly. I now have a sit-stand desk so I can oscillate between sitting and standing when I’m working, and when it all gets too much I sit on the sofa with my legs elevated in front of me on a cushion. (In reality most afternoons!) Many of my movements each day are dictated by how swollen my leg is, and we’ve started to analyse which garments give better outcomes on various parts of my leg (some are better for the ankle, others for the foot etc).
Another key aspect of lymphoedema is the infection risk. Where a person with well-functioning lymphatic drainage can rely on the lymph to drain infection away, I have lymph fluid laying dormant and ‘stuck’ in parts of my body, not flushing away properly. This means if I get any broken skin (say, a mosquito bite, or a little cut), I have a much greater risk of getting an infection or cellulitis. So I have to moisturise every day to keep my skin from drying out, and I need to studiously avoid cuts or bites as much as possible. (No more holidays on the Caribbean Coast!) But also, I can’t have any needles in my right side: all vaccines, jabs and bloods have to be done on my left arm.
After all my cancer treatment, the huge scars on my body where I’ve had major surgery, and body parts removed, it’s perhaps somewhat strange that something which could be considered as ‘minor’ as lymphoedema is the element that distresses me the most. But I feel so self-conscious about it! It has changed the style of the clothes I can wear, it makes me want to hide my ankles, and it affects my ability to work a ‘normal’ working day. I’m conscious of it all the time. I try to stay as active as possible, and eat a healthy diet, as these things help to prevent it from worsening, but there’s no cure for this, and it’s just something I have to manage for the rest of my life. I’m really grateful to the NHS that I have access to a lymphoedema specialist nurse, who has helped me get garments fitted and taught me some MLD massage. But there is so little known about lymphoedema. No-one really knows what leads some people to contract it and not others. Very little funding is put into research, despite the fact that it’s such a common side effect from treatment. (Perhaps this is because it largely affects women?)
So I hope that’s demystified lymphoedema a bit for you, and please tune into the Breast Cancer Now Facebook Live on Thursday 4 March at 7pm GMT if you want to ask a lymphoedema specialist nurse any further questions.
