Tamsin's tips for managing lumphoedema

I noticed my right hand was puffy

The beginning of my lymphoedema was sudden. I’d just finished chemotherapy to treat a recurrence of my breast cancer when I noticed my right hand was puffy. My surgeon immediately referred me to a lymphoedema clinic. By the time of the appointment, I couldn’t get my arm into the sleeve of my clothes or hold a pen or a fork due to the swelling in my arm and hand. Fluid was weeping from cracks in my fingers.

I was shocked to wait weeks for an appointment

Unlike treatment for cancer where everything happens quickly, lymphoedema treatment happens at a slower pace. It was a shock to have to wait weeks for an appointment, only to be advised to try out a new technique for three to six months! I now understand that the approach is to see how each person’s swelling responds and to teach patients the skills to manage their own condition.

It took 18 months to reduce the fluid in my arm

Because my hand was so swollen, I had intensive, multi-layered bandaging. For three weeks I made a daily trip to the hospital, where my hand and arm were bandaged to reduce the swelling before being fitted with a compression sleeve. It took eighteen months to reduce the amount of fluid in my arm. Although my arm looks ‘normal’, the swelling in my hand and fingers remains troublesome unless I wear my sleeve daily.

I felt like my body had let me down again

When I was first diagnosed with lymphoedema, I didn’t appreciate that there was no cure for it. I also didn’t know about some of the more distressing effects like cellulitis, which is a bacterial infection of the skin and tissue. Consequently, the full enormity of what it meant to live with lymphoedema for the rest of my life only hit me much later. I felt like my body had let me down again.

It took me a long time to accept that I had lymphoedema

I hated wearing a compression garment in the early months because of the stiff and uncomfortable fabric, the blisters in between my fingers and the awful choice of colours. I felt ugly. Because lymphoedema is a visible reminder of breast cancer, it forced me to face all my complicated and difficult emotions. It has taken me a long time to accept the disease.

I can’t easily disguise my swollen arms, especially during the summer months when wearing a compression sleeve rarely goes unnoticed. I find it particularly difficult to deal with the question: What have you done to your arm?’ because I don’t always want to have to explain my lymphoedema, or reveal that it’s a consequence of breast cancer treatment.

I wear a compression sleeve, with an integrated glove, every day. I sleep wearing a glove and if needed I insert foam to prevent swelling across the back of my hand. Every six months, I see a nurse who prescribes two made-to-measure garments. 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’m right-handed, so swelling and the compression garment impact on my ability to use my hand.

Unfortunately, I developed lymphoedema in my trunk in 2017. To manage this, I use textured foam which is cut into pieces and inserted into my bra. I also have lymphoedema in my left arm and wear an off-the-shelf sleeve most days.

Tamsin’s top tips for managing lymphoedema

1. Take Control

We can do a lot to manage our swelling and prevent it from building up. I do a set of exercises twice a day to encourage the lymph fluid to move around the body. I’ve also been taught a gentle massage technique (MLD) which helps fluid to drain from my arm. Reducing swelling is a bit like losing weight: it’s a gradual process and there are sometimes set-backs which can feel disheartening.

2. Strike a balance between keeping active and elevation

There’s evidence to support the positive effect of exercise on lymphoedema. It makes sense that physical activity will help lymphatic drainage and keep the affected limb flexible. My experience is that this is not always easy because some activities cause my swelling to increase – and I really wish there was tailored support to help me increase my overall strength and fitness.

I try to avoid staying too long in a static position. When I’m sitting down, raising my arm to a comfortable level by resting it on the arm of a chair offers relief from the heavy, aching sensation of pressure which builds up across the day.

3. Keep a supply of emergency antibiotics to hand

I’ve had cellulitis at least twice a year. I worry about infection because the lymphatic system plays such an important role in helping the body deal with it. I have a supply of emergency antibiotics at home to start taking straight away if I notice any signs of infection.

4. Have a box of lymphoedema tricks

A spikey massage ball makes self-massage easier. Using it regularly can help prevent fibrosis (the tissue becoming thick and hard). A good moisturiser is essential because it improves the quality of the skin. Applying Cavilon eases any chaffing on my elbow and in the crook of my arm. I would be absolutely lost without Siltape, which I cut to size to prevent blisters developing between my fingers. If you’re thinking of trying these products, it’s important to check with your specialist team first.

5. Accept that managing lymphoedema can be hard work

There are days when I don’t want to do my exercises or massage my hand. There are days when I’m late for work because I can’t get my sleeves on. I used to feel guilty about these feelings because after all, I’d survived breast cancer. I’ve learned that by accepting the many ways that lymphoedema impacts on my daily life, I can be more self-compassionate.

6. Educate yourself

Lymphoedema services vary considerably depending on where you live and many people still find there’s a lack of knowledge about the condition. Support from Lymphoedema Support Network is invaluable.

Tips from our breast care nurse

Our Clinical Nurse Specialist, Addie Mitchell, shares her five top tips for those living with lymphoedema.

1. Keep your skin moisturised and supple, which will help to prevent dry, flaky areas and soften firm areas (called fibrosis).
2. Risk of infection (cellulitis) increases with arm swelling, so look for redness on the skin, if it's hot to the touch or you have a high temperature. Report these symptoms to your GP as soon as possible.
3. Try to maintain a suitable weight for you. Research studies have proven that risk of lymphoedema increases in those who are overweight.
4. Deep breathing and stretching exercises help by moving lymph fluid more effectively.
5. Ensure that compression garments are fitted correctly. Ill-fitting sleeves can cause more damage.

Tamsin is a member of BRiC and blogs about living with breast cancer.