How to have a little more lymphe‘diva’ and a little less lymphedema – my story of tackling secondary lymphedema after cancer

Lymphedema is something I had never heard of until my cancer diagnosis.  Lymphedema is a condition is caused by a blockage in the lymphatic system, part of the immune and circulatory systems. Lymphedema is most commonly caused by lymph node removal or damage due to cancer treatment. The main symptom is significant swelling in an arm or leg that is accompanied by pain or discomfort. Exercise, wrapping, massage and compression stockings can help but the condition can't be cured. It is unfortunately a chronic, lifelong condition.

As my melanoma had spread to the lymph in the left side of my groin, I had two surgeries to remove the lymph nodes in that region. The first surgery was to remove the lymph node that contained the tumour. They then tested that lymph node to determine how well I had responded to the immunotherapy clinical trial that I was in.  Unfortunately I did not have a good response to the immunotherapy which meant I had to go back two weeks later for further surgery. This time I had to have all the lymph nodes in the region removed – estimate to be about 20. This was to ensure there had been no further spread. My surgeon told me that about 50% of patients who have this surgery develop lymphedema. There is no way to prevent it, it’s just luck. As I understand, some people’s bodies must learn to ‘reroute’ the lymph after the removal/damage which means they don’t develop lymphedema. For those that this doesn’t happen for, unfortunately lymphedema develops – your fluid pools in the limb. This can happen to patients who have radiation of the lymph nodes, have 1 node or 30 removed.

So after the surgery I had two drains in my leg for 6 weeks until my body learnt how to redirect the lymph. They only take the drains out when the fluid coming back out is at a reasonably low level. I started wearing a preventative compression stocking and was hopeful I was going to be one of the lucky ones but over the coming weeks, the swelling and numbness in my leg didn’t improve. At the time, to be honest, it didn’t really bother me that much because anything is better than cancer. I was still physically recovering and continued to hope it may improve. Overtime once I was fully recovered and trying to get back to all the activities I enjoy, I started to really struggle with it mentally more than anything else. Chronic illness of any kind is quite debilitating and this was really my first experience of it. I have to live with lymphedema for the rest of my life.

The swelling tends to worsen over the day. It’s at its best in the morning, when you have been lying down all night. So as soon as I wake up, I put my medical compression stocking on. This is another word I learnt about very quickly There are different medical compression classes and types depending on what you need. My stocking is thigh high and comes all the way up to my groin. It covers about half of my scar. It reduces how much lymph fluid accumulates in my leg over the day and therefore reduces swelling. The swelling is so bad that if I don’t wear my stocking, I can’t walk. There is so much build-up of fluid around my joints that I can’t bend my knee. The physical change in how my leg looks is really hard for me. I have always been really fit and even first thing in the morning, there is no definition to my leg anymore – it is just swollen all the time.

There are also skin changes such as rashes and hardening that come with lymphedema which means being very diligent with moisturisers and general skin care. I can’t be as physically active as I used to as it just creates too much swelling and pain. I also used to LOVE wearing high heels and jeans…this was my look, my style. Even apart from the fact that my foot is too swollen to get into high heels, the compression stocking isn’t exactly hot to look at. I also found that jeans, or any tight pants made my swelling worse as it was constricting lymph flow. These forced changes to my personal style were really hard for me. It also made me feels less sexy, less confident and less like me – despite kicking cancer’s butt. I also don’t know any other person who has this condition so it can feel quite lonely.

So just like I have approached every other challenge thrown at me, I had a choice. To either keep letting this get me down or accept it and make the best of it. Getting quality compression stockings is key and I was able to find a brand that made them in black with a lace top so that I can feel a little sexier in myself. Next was thinking of a new way of dressing that still made me feel like my authentic self but also helped my lymph. After a lot of trial and error, I have found that cotton leggings with a lot of stretch are the best for me. These unfortunately can’t be the gym tights that suck everything in or it restricts lymph just like jeans. But anything with ‘comfort’ ‘everyday’ or even ‘maternity’ in a legging description will be perfect. I have also tried to limit my dress searches maxi/midi length so that I can cover my stocking when I want to. I do still rock the occasional mini dress with my black compression stocking on but most of the time the long dresses are better. I can still get these sexy & tight, cover my stocking and make me feel like me. The next challenge was shoes, my feet are different sizes now because of the swelling and, as its it get worse over the day, having shoes that give are critical. I have now become a high-top Converse sneakerhead! The canvas is perfect as it has some give during the day and because the lace up, I can loosen the laces of my swollen foot and be so much more comfortable. I have found amazing Converse styles, patterns and even glitter so that I can still feel fabulous in what I am wearing. Finally to the physical activity level. Even though I won’t be trekking the Himalayas again any time soon (yep I can share that experience another time!), I have embraced Yoga and daily beach walks in addition to my gym workouts to get the right balance of fitness and lymph management. Yoga is great for my lymph and I just look at it as a new challenge to get skilled at something different.

I still have days where I really struggle with my lymphedema, but it has helped me to take it in my stride and think of myself as a lymhediva! I am no less fabulous because I have a swollen leg in a stocking. I continue to be the best version of myself that I can, make sure I look after the condition as best as I can and smile through it. And of course glitter shoes never hurt ;)