What Helps Lymphoedema

Lymphoedema snuck up on me…

Some time after breast cancer surgery, my arm began to swell. It didn’t happen immediately, but gradually, and the swelling came and went. The arm ached, it felt heavy and was uncomfortable. Eventually, the swelling stopped reducing and became more and more permanent.

I learned that this was lymphoedema; swelling that develops as a result of damage to the lymphatic system. It can be ‘primary’ - the result of an existing issue within the body, such as underdevelopment or a genetic predisposition, which causes symptoms to occur at any time of life with no obvious cause. But in my case, lymphoedema was ‘secondary’, and the result of surgery which had damaged the lymphatic structures in the body. 

Dealing with Emotions

To be honest, I was furious: enraged the health service that had given me this problem could offer me so little support to manage it effectively. My first experience of cellulitis made me even more angry and I found I was directing this at myself. The experience highlighted just how inadequately I was managing the condition and the risks that I was taking with my own health. My second episode of cellulitis, around six months later, pulled me up by my bootstraps. I had to do better.

Cellulitis is a potentially serious infection of the deeper layers of skin. As skin covers our whole bodies, infection can spread rapidly over a wide area and sometimes be difficult to contain and control. My cellulitis manifested in a recognisable rash on the arm affected by lymphoedema. The rash was hot, I had a temperature and I also had flu-like symptoms that seemed to appear out of nowhere.

During both of my experiences of cellulitis I responded really well to oral antibiotics. I know this is not always the case, so I am vigilant and if I spot a growing rash or feel unwell. Nowadays, I always make sure that I get checked and tell the medical professionals about my lymphoedema and previous cellulitis.

Translating frustration… into compression garments

At some point anger and frustration have to translate into action. I have really struggled, but bit by bit, I have found ways to have fun with the props and paraphernalia that come with this disease.

I started to actively search for ways to help myself and I began to try harder to wear my compression garments regularly. Whereas lymphatic drainage massage is a lovely calming experience, wearing compression garments can be a massive drag.

They are uncomfortable, often only available in disgusting colours. They’re frequently difficult to get on prescription, sometimes costly, and they reduce mobility, make washing your hands impossible, never mind doing the dishes... But they do work for most people. I get mine in the craziest colours that I can find and I’ve learnt some Michael Jackson dance moves to pull out when people ask about them.

I have even had people stop me in the street and ask where I got my sleeves from, assuming that they are a fashion statement!

Diet and exercise

I get super sick and tired of reading that I must need to lose weight because I have lymphoedema. I have never been overweight and suspect that if I were carrying extra weight, I might actually perpetrate acts of violence against anybody who commented on it. There are some interesting notes on dietary suggestions that could support lymphoedema management here but I have not found that anything I consume really makes a huge difference. 

I do know that my medicines can affect my lymphoedema though, so I suspect that if I were to eat or drink things that my body didn’t like I might see more of a problem. I think general rules of thumb are to drink a good amount of water, eat foods that support good gut health including fibre and probiotics, and limit anything that could be inflammatory such as caffeine, alcohol, sugar, or highly processed foods. 

There are suggestions that intermittent fasting (limiting the window within which you eat) can help to prevent fluid build-up, but I have not tried this with enough consistency to comment and feel that this may be something that works really well for some people, but does very little for others.

Swimming is wonderful for lymphoedema, because the pressure of being in the water acts as a great massage on your affected area and you will also be giving your lungs a good workout. I think of my lungs as the heart of my lymphatic system. While my heart pumps blood through my vessels, the lymphatic system has no active pump attached to move fluid around, relying instead on whole body movement to squeeze the lymph fluid from place to place. The lungs expand and contract even while you are resting, ensuring that the body is never truly still, and even the gentlest rise and fall of the diaphragm stimulates some of the important deep lymphatic structures. One day I may just use this as a great reason to dig a swimming pool and/or install a home hot tub!

Techniques that help

Surprisingly, I have also found some enjoyable techniques to help me with my lymphoedema. I recently bought a small foam paint roller and try to roller up my arm, pushing the fluid out of my hand, up my lower arm towards my elbow, and from my elbow up towards my shoulder. I combine this with deep breathing and a bit of scar massage over my mastectomy site. Doing this first thing in the morning and again before bed is a pleasant routine and I find it a lot quicker and less fussy than body brushing or following lymphatic drainage massage videos on YouTube, both of which are also really brilliant things to do whenever you can fit them in.

Lymphoedema is a great excuse to treat yourself to quality moisturisers because maintaining good skin elasticity is really important to prevent infection. I love anything natural with a bit of fragrance and try to stick to light oils that are absorbed quickly. Similarly, natural fragranced antibacterial products like lavender alcohol gel, are a treat but also a handbag essential (especially handy when you are using public loos with a sleeve on). 

I am pretty terrible at drinking caffeinated drinks and alcohol instead of just plain water, so I use this as an excuse to buy nice herbal teas. I also use squash/cordial as a way to improve my fluid intake when I am struggling. Plain old water is better but sometimes we all need a helping hand.

Washing up, housework, and carrying shopping bags are the sort of repetitive and damaging activities that can aggravate the condition. I use this as a fantastic excuse to avoid doing jobs I don’t particularly like, but it’s also a good reason to buy rubber gloves (and gardening gloves) that fit well, are pretty to look at, and that you will actually wear!

Washing up can be triggering because of the heat, but I have found that combining warm water with the pressure of bubbles is actually really great at reducing swelling, so I take every opportunity to indulge in a hot tub and will soak until I have prune fingers and toes for maximum effect. 

Pneumatic Compression Pumps

I now go to use the Pneumatic Compression Pump at my local hospice for around an hour each week. This involves my arm being zipped into a bizarre inflatable sleeve while the pump squeezes and releases different sections to move the lymph fluid around and prevent it from building up.

I have found this to be one of the best ways to maintain a routine for myself because it makes me feel more accountable, providing a set time each week to check in on my condition and see whether I need to make any adjustment to my maintenance. It is also an hour when I can do absolutely nothing of any use because my right arm and hand are held captive, so I take my Kindle or have a chat with my counsellor, and make my peace with this being an hour of scheduled self-indulgence.

The hospice has also given me a wonderful night-time sleeve, which I wear in bed. This sleeve is a natural cotton woven tube, with a ribbing that massages my arm while I sleep. I wake to deep grooves that are an accentuated version of the pillow lines one sometimes gets on cheeks after particularly heavy sleep but this helps to maintain the volume reduction that the weekly pump, any massage I can manage, and the daytime sleeve all combine to provide.

Hospices and the Right Support

I am able to access a lot of specialist care for my lymphoedema. It’s an incurable condition, so technically care for this condition is ‘palliative’. This simply means that the aim of treatment is not to cure the condition, but to help you live well with it. This does mean that hospice care for the condition should be accessible to you if you are living with lymphoedema.

Despite the fantastic support hospices offer, only about 15% of their services are funded by the state, the rest is all from local charity and philanthropy. Using hospice facilities, feeding back to the providers, and supporting fundraising efforts is a really simple and valuable way to contribute to your community.

Ask your GP what is available for you to access in your local area and make use of everything you can, until you find your favourite methods of controlling the situation and settle into a routine that suits you.

Greater Education Needed

Lymphoedema crept into my life... I was told that it was a risk when I had my first cancer treatment. The risk was highlighted again when I had a full axillary node clearance because the previous biopsy found sneaky cancer cells. But when I was informed of this risk, it was never personalised by taking into account details like my age, the surgery being on my dominant side, or the type of daily activities that I was carrying out. The risk was also never contextualised with complementary risk factors like the possibility of recurrence or metastases, which go along with my disease.

I was also never told what lymphoedema might be like to live with. Though named, the meaning of the condition was never explained. I don’t feel that I was provided with adequate information and I definitely was not able to speedily access the correct support when I started to experience symptoms.

And while lymphoedema is not thought to be a curable condition, I do know patients who have been so successful at managing their lymphoedema when it first presents that they do consider themselves to be cured.

Actually, it was within the lymphoedema and breast cancer community that helpful facts like these are most shared. Here are some of my favourites:

https://www.lymphoedema.org/

https://thelymphielife.com/about/

https://lymph-what-oedema.com

Emma Robertson has secondary breast cancer, a treatable but not curable disease. Emma campaigned with Just Treatment for others to be given NHS access to the CDK4/6 inhibitor Palbociclib. She was interviewed by Adrian Goldberg for BBC Radio’s “5 Live Investigates” programme about her campaign and has subsequently been asked to speak at various events, including the “Challenges to Preventing Cancer Cure” conference at The Francis Crick Institute in March 2019.

She lives on a one hundred and twenty year old narrowboat in West London with her husband and their cat and has recently taken up beekeeping.